Bible Verses for Caregivers

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One of the first things I learned about caring for my mother-in-law was that I could not do it in my own strength. There are some Bible verses that I go to again and again. I thought I’d jot them down here both for my own remembrance and also for other caregivers. Of course, none of the lists is exhaustive, and I will probably add to them as I discover more.

The need to care for aging parents:

  • Honour thy father and thy mother: that thy days may be long upon the land which the LORD thy God giveth thee.  Exodus 20:12
  • And he said to them, “You have a fine way of rejecting the commandment of God in order to establish your tradition! For Moses said, ‘Honor your father and your mother’; and, ‘Whoever reviles father or mother must surely die.’ But you say, ‘If a man tells his father or his mother, “Whatever you would have gained from me is Corban”’ (that is, given to God)— then you no longer permit him to do anything for his father or mother, thus making void the word of God by your tradition that you have handed down. And many such things you do.” Mark 7:9-13, ESV
  • But if anyone does not provide for his relatives, and especially for members of his household, he has denied the faith and is worse than an unbeliever. 1 Timothy 5:8, ESV
  • If any man or woman that believeth have widows, let them relieve them, and let not the church be charged; that it may relieve them that are widows indeed. 1 Timothy 5:16
  • Therefore all things whatsoever ye would that men should do to you, do ye even so to them: for this is the law and the prophets. Matthew 7:12
  • As I have said before, this doesn’t mean that every Christian must care for elderly loved ones in their own homes, but they must see that they are well cared for.

The need to care for widows:

  • Pure religion and undefiled before God and the Father is this, To visit the fatherless and widows in their affliction, and to keep himself unspotted from the world. James 1:27

Serving:

  • Jesus knowing that the Father had given all things into his hands, and that he was come from God, and went to God; He riseth from supper, and laid aside his garments; and took a towel, and girded himself. After that he poureth water into a bason, and began to wash the disciples’ feet, and to wipe them with the towel wherewith he was girded…If I then, your Lord and Master, have washed your feet; ye also ought to wash one another’s feet. For I have given you an example, that ye should do as I have done to you. John 13:3-5, 14-15
  • Even as the Son of man came not to be ministered unto, but to minister, and to give his life a ransom for many.  Matthew 20:28
  • For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in; naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me. Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me. Matthew 25:35-36, 40
  • Whosoever will be great among you, let him be your minister; And whosoever will be chief among you, let him be your servant: Even as the Son of man came not to be ministered unto, but to minister, and to give his life a ransom for many. Matthew 20:26b-28
  • Now we exhort you, brethren…comfort the feebleminded, support the weak, be patient toward all. I Thessalonians 5:14
  • Whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward. Matthew. 10:42
  • To do good and to communicate forget not: for with such sacrifices God is well pleased. Hebrews. 13:16
  • God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister. Hebrews. 6:10
  • With good will doing service, as to the Lord, and not to men. Ephesians 6:7
  • Well reported of for good works; if she have brought up children, if she have lodged strangers, if she have washed the saints’ feet, if she have relieved the afflicted, if she have diligently followed every good work. I Timothy 5:10
  • Bear ye one another’s burdens, and so fulfil the law of Christ. Galatians 6:2

Love:

  • A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.  John 13:34
  • This is my commandment, That ye love one another, as I have loved you. Greater love hath no man than this, that a man lay down his life for his friends. John 15:12-13
  • And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us. Romans 5:5
  • For the love of Christ constraineth us; because we thus judge, that if one died for all, then were all dead: And that he died for all, that they which live should not henceforth live unto themselves, but unto him which died for them, and rose again. 2 Corinthians 5:14-15
  • And I will very gladly spend and be spent for you; though the more abundantly I love you, the less I be loved. 2 Corinthians 12:15
  • With all lowliness and meekness, with longsuffering, forbearing one another in love. Ephesians 4:2
  • In speech, conduct, love, faith and purity, show yourself an example of those who believe. 1 Timothy 4:12, NASB
  • And walk in love, as Christ also hath loved us, and hath given himself for us an offering and a sacrifice to God for a sweetsmelling savour. Ephesians 5:2
  • May the Lord direct your hearts to the love of God and to the steadfastness of Christ.
     2 Thessalonians 3:5, ESV
  • May the Lord make you increase and abound in love for one another and for all, as we do for you. 1 Thessalonians 3:12
  • Ye yourselves are taught of God to love one another.  1 Thessalonians 4:9
  • Seeing ye have purified your souls in obeying the truth through the Spirit unto unfeigned love of the brethren, see that ye love one another with a pure heart fervently. 1 Peter 1:22
  • Finally, be ye all of one mind, having compassion one of another, love as brethren, be pitiful, be courteous. 1 Peter 3:8
  • Above all, keep fervent in your love for one another, because love covers a multitude of sins.  1 Peter 4:8
  • If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. If I give away all I have, and if I deliver up my body to be burned, but have not love, I gain nothing.
    Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things. 1 Corinthians 13:1-7, ESV
  • Beloved, let us love one another: for love is of God; and every one that loveth is born of God, and knoweth God. He that loveth not knoweth not God; for God is love. In this was manifested the love of God toward us, because that God sent his only begotten Son into the world, that we might live through him. Herein is love, not that we loved God, but that he loved us, and sent his Son to be the propitiation for our sins. Beloved, if God so loved us, we ought also to love one another. No man hath seen God at any time. If we love one another, God dwelleth in us, and his love is perfected in us. 1 John 4:7-12
  • And we have known and believed the love that God hath to us. God is love; and he that dwelleth in love dwelleth in God, and God in him. 1 John 4:16

Encouragement:

  • Therefore, my beloved brethren, be ye stedfast, unmoveable, always abounding in the work of the Lord, forasmuch as ye know that your labour is not in vain in the Lord.  1 Corinthians 15:58
  • We glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us. Romans 5:3b-5
  • And let us not be weary in well doing: for in due season we shall reap, if we faint not. Galatians 6:9
  • God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister. Hebrews. 6:10

Source of Strength:

  • He giveth power to the faint; and to them that have no might he increaseth strength.  Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 41:29-31
  • Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10
  • As thy days, so shall thy strength be. Deuteronomy 33:25
  • The joy of the LORD is your strength. Nehemiah 8:10b
  • But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you. Matthew 6:33
  • The Lord is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him. Psalm 28:7
  • I can do all things through Christ which strengtheneth me. Philippians 4:13
  • Abide in me, and I in you. As the branch cannot bear fruit of itself, except it abide in the vine; no more can ye, except ye abide in me. I am the vine, ye are the branches: He that abideth in me, and I in him, the same bringeth forth much fruit: for without me ye can do nothing. John 15:4-5
  • He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things? Romans 8:32
  • Therefore seeing we have this ministry, as we have received mercy, we faint not. 2 Corinthians 4:1
  • And God is able to make all grace abound toward you; that ye, always having all sufficiency in all things, may abound to every good work. 2 Corinthians 9:8
  • But the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness, faith, Meekness, temperance: against such there is no law. Galatians 5:22-23
  • But my God shall supply all your need according to his riches in glory by Christ Jesus.  Philippians 4:19
  • Strengthened with all might, according to his glorious power, unto all patience and longsuffering with joyfulness. Colossians 1:11
  • But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us. 2 Corinthians 4:7
  • And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong. 2 Corinthians 12:9-10

I probably should have a section about selfishness, because that is what I wrestle with the most. But a lot of verses under Service and Love deal with that.

Linda has a different list here. Our lists overlap a bit, but her situation is different in that her mother has Alzheimer’s and can be verbally abusive sometimes, and some of her verses deal with handling that.

I hope these are as helpful to you as they are to me. Do you have particular verses that help you in loving and ministering to others?

For more about caregiving, see:

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(Sharing with Inspire Me Monday, Woman to Woman, Testimony Tuesdays, Tell His Story, Works For Me Wednesday, Thought-provoking Thursday)

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Am I Doing Any Good?

Old Woman Dozing by Nicolaes Maes (1656), Royal Museums of Fine Arts, Brussels

As my mother-in-law has gotten older, she has been sleeping more. Usually when I went to see her when she was in assisted living facilities and then in a nursing home, she would be dozing in her wheelchair and I would have to wake her up to visit. She used to encourage me to wake her up because she could sleep any time, but she didn’t get many visitors and didn’t want to miss a visit because she was sleeping. Later she was more inclined to stay asleep. Once when I woke her up to visit, she actually told me, “Next time, don’t wake me up.” Usually, though, she did her best to be pleasant, but even then, after just a few minutes, she would start yawning and rubbing her eyes, her head would start drooping, and if she had a pillow propping her up in her wheelchair, she’d nuzzle against it to get comfy again.

When she was awake, though, many times our conversations would get stuck in a loop with the same questions and answers and comments over and over again.

Sometimes I was tempted to wonder if it was worth a 40 minute drive round trip to wake her up for 5-10 minutes of groggy conversation that she likely wouldn’t even remember, or to have the same conversational loops repeatedly.  I’d wonder what good it was really doing to visit her.

Other times, she’d be awake and we’d have a good talk, or I would be able to do some little service for her, like change her hearing aid battery, clean off her table, advocate for her with the staff over something, bring her mail, etc., and then I’d feel useful or feel like I had accomplished something with the time.

What I had to realize was that visiting her was not supposed to be about making me feel useful. It was supposed to be about letting her know she was loved and remembered and ministering to her in whatever way she needed.

A dear lady at church writes to my mother-in-law periodically and will occasionally check in with us to see if she seems to be getting anything out of her notes. I tell her that she may not remember who the lady is or that she wrote to her, and she wouldn’t know if she never wrote again, but for those few minutes that I read the note to her, she knows that someone was thinking about her.

I think perhaps this is why some elderly seem to be forgotten in facilities. We assume their needs are being taken care of, they won’t remember whether we’ve come or not, they might not even remember who we are, and our lives are filled with “important” things to do. But here are a few reasons why it is still good to visit or write them, even if it seems the visits or notes don’t seem to be accomplishing all that much:

Pure religion and undefiled before God and the Father is this, To visit the fatherless and widows in their affliction, and to keep himself unspotted from the world.  (James 1:27)

For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in: Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me.

Then shall the righteous answer him, saying, Lord, when saw we thee an hungred, and fed thee? or thirsty, and gave thee drink? When saw we thee a stranger, and took thee in? or naked, and clothed thee? Or when saw we thee sick, or in prison, and came unto thee?

And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me. (Matthew 25:35-40)

Now we exhort you, brethren…comfort the feebleminded, support the weak, be patient toward all. (I Thessalonians 5:14)

Whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward (Matthew. 10:42)

To do good and to communicate forget not: for with such sacrifices God is well pleased (Hebrews. 13:16)

There were a few gems in the aides at many of those facilities, but, in our experience, many of them were just punching the time clock, going through the motions for the day. We’ve actually witnessed some talking to each other over her while they tended to her, never once speaking to her, hardly even looking her in the eyes. You can imagine, then, what it would mean in a situation like that to have someone come to see you personally, to look you in the eyes and just be with you rather than bustling about getting other things done.

A couple of years ago, we brought my mother-in-law to our home. She had gotten down to about 90 lbs. in the nursing home and seemed out of it most of the time, and we thought we were bringing her home to die. But as she got off the medications they had her on and under one-on-one care, she started eating again, gained weight, became more mentally alert, and thrived. Now, though, she sleeps about 20 hours a day and doesn’t speak much at all any more. My “wondering if I am doing any good” takes a different tack now. We know we’ve done her good in taking care of her needs. Our ministrations have kept her alive. But to what kind of life? To sleeping interrupted by meals that are not always wanted, to baths that are definitely not wanted,  and to occasional episodes of The Waltons are Matlock? Who would want to live like that? Well, I suppose if that was the life I had, I would still value it over losing it. It would be unthinkable not to meet her needs even in such a condition. Life and death are in God’s hands. So why does He leave one of His loved ones to linger here in such a condition when they long ago prepared for heaven by trusting Jesus as Savior and are eager to joined loved ones there? We don’t know all the answers to that, but I believe a large part of it is what my friend Esther shared after caring for her mother-in-law with Alzheimer’s for several years: He works in us through them, teaching us what it means to honor a parent, to minister, to love unconditionally, to confront our selfishness, to stop bustling around and just sit and connect with one other person. I think He also shows us a picture of how we must look before Him: helpless, completely dependent, messy and unable to do anything about it. Yet He loves us. He doesn’t resent cleansing and caring for us. He knows how thoroughly we need Him even more than we do. Seeing my own helplessness and basking in His love and care for me helps love for others to well up in my own heart.

A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.
(John 13:34)

So after [Jesus] had washed their feet, and had taken his garments, and was set down again, he said unto them, Know ye what I have done to you? Ye call me Master and Lord: and ye say well; for so I am. If I then, your Lord and Master, have washed your feet; ye also ought to wash one another’s feet. For I have given you an example, that ye should do as I have done to you (John 13:12-15).

Therefore all things whatsoever ye would that men should do to you, do ye even so to them: for this is the law and the prophets.  (Matthew 7:12)

Ministry to the elderly may not have the pizzazz or “results” that other ministries have, but it’s an essential ministry that we cannot forget, as individuals or as churches. Some elderly may have physical needs that we can help meet, particularly those still living alone. But for many, their main need is God’s love shown thrown human connection.

God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister (Hebrews. 6:10).

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(Revised from the archives)

(Sharing at Inspire Me Mondays, Testimony Tuesdays, Telling His Story, Thought-Provoking Thursday)

Adventures in Elder Care

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Seven years ago my husband and I moved his mother 2,000 miles to be near us when she couldn’t live on her own any more. She lived in three separate assisted living facilities, a nursing home, and then came home to live with us about 2 years ago. In the posts below I detail some of that journey and pass along tips and truths that have helped us during this time. I hope you will find something to help you in your journey as well.

Helping Parents As They Age.

12 Things You Should Know About Caring for the Elderly.

Decisions.

Assisted Living and Nursing Homes.

The Introvert in Assisted Living (Ideas for one on one activities)

Caring For a Parent at Home.

Dealing With Caregiver Resentment.

A few more thoughts about caregiver resentment.

A Plea to Caregivers

Ministering To the Elderly and Their Caregivers.

It’s Not for Nothing.

Am I Doing Any Good?

But That’s Not My Spiritual Gift!

Bible Verses For Caregivers

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A few more thoughts on caregiver resentment

EldercareSeveral thoughts coalesced this morning to a realization. I wrote last week about caregiver resentment, and I may go back and add this in at some point.

We can get resentful or “weary in well doing” in just about any endeavor. But I think in most of them, you have every expectation of seeing improvement or completion. If you’re building something or involved in a big project, you know at some point it will be done. Some of the frustrations are easier to bear because you can see progress and look forward to the end results. With the frustrations and limitations of raising children, you also continually see them learn and grow and gradually get more independent and able to do some things on their own. Plus they’re cute, and there are moments of fun and joy along the way.

But with an elderly loved one who is declining, it’s not going to get better. It will likely get worse. And the only way it all ends is when that person dies (or goes to a nursing home, which we feel would only hasten my mother-in-law’s death. She was so low when she was there that we felt we were bringing her home to die – and that was almost two years ago). So wishing to be relieved or for it all to be over seems akin to wishing for that person’s death, which adds guilt to the mix.We backtrack and think, “No, no, no, I didn’t mean that.” We just wish it could be different. But it’s not going to be.

Some caregivers battle depression more than resentment, or maybe both. Besides all that is involved in caring for an elderly person, there is the sadness of seeing them lose mental or physical abilities one by one.

There are times I wonder at God’s ways. Last year we lost our pastor to a short battle with cancer and a young mom of two children to a very sudden and unexpected reaction to a medication. He was in his early fifties, two daughters had just gotten married, he was known for uniquely caring for everyone whose life he touched. He would have been a wonderful grandfather. The young mom left behind a grieving husband, children, and friends. Why are people like that taken “early,” as it seems to us, when they still have so much vitality and usefulness ahead of them, and other people experience a slow decline for years, some vacant and unresponsive in nursing homes, others no longer recognizable due to the alterations of Alzheimer’s?

I don’t know. But I do trust that God has His reasons. He’s doing something in the lives of all the people connected with each individual.

All we can do is continually apply God’s truth to our situations, as I mentioned previously, and depend on His grace day by day.

Something else that helps me a bit sometimes is when I think of my mother-in-law’s situation as analogous to how God sees me: helpless, completely dependent, messy and unable to do anything about it. Yet He loves me. He doesn’t resent cleansing and caring for me. He knows how thoroughly I need Him even more than I do. Seeing my own helplessness and basking in His love and care for me helps love for others to well up in my own heart.

A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.
 John 13:34.

Dealing With Caregiver Resentment

I’ve never tried to portray myself as anywhere near perfect or as having it all together, but one fault that seems abominable and embarrassing to have to admit is that sometimes I resent having my mother-in-law here and caring for her. I mentioned some of the disadvantages of caring for a parent at home about seven paragraphs down here.

I Googled caregiver resentment and came up with some practical, helpful tips, but nothing really for the deeper issues. One post even advised just accepting it as part of the whole package. While I can accept that resentment might naturally arise, I can’t accept that as normal and okay: it’s miserable to live with, but even worse, as a Christian, it’s an evidence of my own selfishness. So then I Googled something along the lines of overcoming resentment as a Christian and looked at several of the articles that came up, but most of them dealt with resentment against someone who has done you wrong and the need to forgive.

So I decided to write down some of the things that help me during those times both so it’s here for me to refer back to when needed and so hopefully it might be a help to someone else. And I am calling it “dealing with” rather than “overcoming” caregiver resentment because, although I’d like to have a conversation like this just once and have that take care of my attitude forever, I’ve found I have to go over these things periodically. I guess that is part of living with a sinful nature and needing to renew one’s mind.

So here are ways to deal with resentment, beginning with the practical and moving on toward the spiritual:

1. Take care of your own health, including getting enough sleep. Everything seems worse if you’re sleep-deprived or dragging because you’re not eating right.

2. Talk to someone. My husband and I feel free to talk honestly with each other, and he’s not offended that I do get frustrated with the situation sometimes. I know I have an open door to talk with him about it whenever needed.

3. Get away from the situation sometimes. I am thankful we do have a caregiver here in the mornings so I can run errands or take care of other things, and occasionally we’ll have someone come in for an evening or stay longer on a Saturday so we can have an outing.

4. Remember what brought you to this place. As we trace our history with my mother-in-law’s care, we come again to the same conclusion, that this is the best situation for her at this stage. There may come a time when one or both of us become unable to care for her or her needs become greater than what we can manage at home, but for now, this is best.

5. Remember that caring for a loved one at home used to be the norm before assisted living facilities and nursing homes became widespread, and it still is in some countries.

6. Remember her care of you or your husband for so many years, and look at this as an opportunity to repay her love and care.

7. Remember it could be worse. My mother-in-law is not hard to get along with at all. Some of the residents we encountered in assisted living or the nursing home perhaps made us appreciate that fact even more.

8. Take it a day at a time, or a moment at a time. If we think, “How many years will I have to do this?” we can feel defeated and depressed. All we have to do is deal with this moment, this day, and trust God’s grace will be sufficient for all the days ahead.

9. Think how you would want to be regarded and treated if you were in the same situation.

10. Accept it as God’s will. Maybe you didn’t have time to sort through options, as we did, to come to the conclusion to bring an elderly parent home, or maybe there are extenuating circumstances that compound the resentment you feel. Maybe you don’t have a parent at home, but you’re the only sibling in town to visit them or oversee their care in a facility. Maybe it is even time to do something different. But for this moment right now, this is God’s will for you, and if you surrender it to Him, He will provide the grace to deal with it. “In acceptance lieth peace,” a poem by Amy Carmichael attests.

11. Pray. Sometimes just before going into my mother-in-law’s room to change her, I pray that I might be “Strengthened with all might, according to his glorious power, unto all patience and longsuffering with joyfulness,” part of Paul’s prayer in Colossians 1:9-13. Or, as the ESV puts it, “May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy.” That encompasses so much: that I need His strength, longsuffering, and patience, that He has the “glorious power” to give it, and that He can help me to go beyond just acting out of duty, but He can enable me to serve with joy. I also frequently pray that He will help me have a more loving, unselfish heart.

12. Remember the Christian life is one of service, not self-focus. Claudia Barba said in The Monday Morning Club, “The Christlike life has nothing at all to do with satisfying, coddling, or promoting self, but everything to do with being poured out for others” (p. 55). You see it in the life of Christ and Paul and others in the Bible both in instruction and in example. That doesn’t mean we’re doormats or martyrs or that we can never we can never do anything just for fun. But our primary purpose is serving Him by serving others. Some verses that help in this regard are:

Now we exhort you, brethren…comfort the feebleminded, support the weak, be patient toward all. (I Thessalonians 5:14).

Whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward (Matthew. 10:42).

To do good and to communicate forget not: for with such sacrifices God is well pleased (Hebrews. 13:16).

God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister (Hebrews. 6:10).

So after [Jesus] had washed their feet, and had taken his garments, and was set down again, he said unto them, Know ye what I have done to you? Ye call me Master and Lord: and ye say well; for so I am. If I then, your Lord and Master, have washed your feet; ye also ought to wash one another’s feet. For I have given you an example, that ye should do as I have done to you (John 13:12-15).

With good will doing service, as to the Lord, and not to men (Ephesians 6:7).

And let us not be weary in well doing: for in due season we shall reap, if we faint not. (Galatians 6:9)

For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in; naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me. Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me (Matthew 25:35-36, 40).

13. Accept this as my primary ministry. This is one area I struggle with the most. As the nest starts emptying, though we miss our kids intensely, we begin to look to other things that have been put on the back burner for a while: maybe now we can write that book, get that degree, travel, sew up all that fabric or complete all those projects. But now we’re tied down again. Or maybe some have had to step back from other ministries at church in order to care for a parent. We need to remind ourselves that this is not a hindrance to our ministry: it is our ministry. Even limitations set the parameters of our ministry. Elisabeth Elliot has said:

This job has been given to me to do. Therefore, it is a gift. Therefore, it is a privilege. Therefore, it is an offering I may make to God. Therefore, it is to be done gladly, if it is done for Him. Here, not somewhere else, I may learn God’s way. In this job, not in some other, God looks for faithfulness.

I don’t mean to reduce caring for a parent to a “job,” but I believe we can substitute “ministry” for “job” there.

I hope some of these are helpful for any reader facing any kind of resentment in your situation, and I’d be happy to hear any other thoughts or tips you might have.

EldercareSharing at Thought-Provoking Thursday. and Works For Me Wednesday.

Adventures in Elder Care: Ministering to the Elderly and Their Caregivers

Eldercare
I didn’t feel I could conclude this series without a post about ministering to the elderly. Some of what I wrote about how to help parents as they age would apply generally, but I wanted specifically to address ways to minister to an elderly person who is not your parent.

Neighbors. If you live near an elderly person who is still in his or her own home, just being a good neighbor is a great first step. Greeting them, talking over the back fence or the mailbox, sharing from your garden, taking them treats (after asking about dietary restrictions), etc., are all ways to keep in touch. Most would welcome a visit, but don’t assume that because they’re older and at home most of the time that they don’t mind if you drop in any time. Some wouldn’t, but some would: as you get to know your neighbor, you’ll be able to discern whether she likes to have company or not, or when might be a good time. You want to be alert for ways that they might need help, but you don’t want to run roughshod into their lives or make them feel useless and helpless. Some might love to have you cut their grass, for instance, but some might take pride that they’re still able to do it and might like the exercise. You might especially be alert to checking on them if you haven’t seen them out for a while.

Visiting facilities. If someone you know is in an assisted living facility or a nursing home, visiting them is probably the number one way to minister to them. Even if they have family that visits often, there are still a number of hours in the day when they don’t have visitors (and it helps the family to know that they are not the only ones who care about the loved one). Some will be more involved in the activities of their facilities than others: you might check with them (depending on their mental abilities) or their family members or even one of the staff members to ask when would be the best time.

Some churches have a regular visitation program for their senior members, which is nice. Just don’t do what one lady did: we happened to be visiting my in-laws at their home when a couple of ladies from their church came to visit my husband’s mom. I believe they brought her a flower, and after she exclaimed about it and expressed thanks for their visit (probably more than once), one of them said, “Well, you were on our list.” If you’re doing something for someone just because they’re on a list of some kind — there is no need to say that! It would be much better to ask the Lord before visiting to help you be a blessing and to have wisdom to know how to best minister to and encourage that person.

What might you do when you visit? Ask about the person, how they’re doing, what their day was like. I read a post about visiting the sick where the writer concentrated only on spiritual issues, like praying with them or reading the Bible or encouraging them with the Word, but left out anything personal. Yes, do those spiritual things: an elderly person might not to be able to or remember to read the Bible on their own, and even if they do, the fellowship of doing it with other believers is a great benefit. But don’t make them feel like they’re a project, like the ladies in the above paragraph. Show a personal interest in them. When you do read the Bible to them, remember some might be hard of hearing. It helps to sit right in front of them so they can see your lips moving and to read in a firm, clear, loud but not yelling voice. One friend used to read aloud and discuss something from the large print Readers Digest with my mother-in-law. Going through a photo album and talking about her loved ones was one of her favorite activities as well.

Often when visiting the person you know in a facility, you’ll have occasion to talk for a bit with other residents. Many in assisted living are fine mentally but can’t live at home for various reasons, and we enjoyed chatting with and getting to know some of them.  I mentioned in an earlier post that things can get a little more complicated when the other residents have a higher degree of dementia. The number one thing we were told was “Don’t alter their reality.” If you try to talk them out of whatever they think is happening, they can get greatly agitated, and that causes more problems not only for the person but also for the staff. When my mother-in-law was in a memory care unit made up primarily of Alzheimer’s patients, residents would often stop visitors to ask for their help in some way. Most of them were constantly trying to figure out a way to get out, not because it was so terrible, but just because they knew on some level that they were not home. When we couldn’t help them in whatever way they wanted, they’d get upset, which again caused more problems for everyone involved. Sometimes you can redirect them: once my husband told a resident who wanted him to help her find her car so she could go home, “Well, they’re just about to serve dinner – why don’t you eat with us and we’ll see about the car later.” She graciously accepted. 🙂 Other times we’d just say, “I’m sorry, I’m just visiting, but maybe that person can help you” and point them to a staff member. Honestly, in that place, sometimes we’d just try to avoid eye contact and go straight to my mother-in-law’s room. I felt bad about that, but that seemed the best way to keep the peace. In the nursing home, when someone said they needed help or wanted to get up or whatever, we’d just pat their hand and tell them someone would be along to help them in a few minutes. If someone seemed in real distress, we’d go find a staff member. I’d caution against giving a person other than your family member any physical help or even going into their room. If someone has fallen, you could do more harm than good and open yourself and the facility up to a lawsuit if something negative happened (or even if the resident accused you of something negative). I wouldn’t even help wheel a resident from one place to another without asking a staff member if it is all right: it may be they are supposed to be where they are rather than back in their room at that point in time.

Gifts. Sometimes people like to bring things when they visit. Most of the time it’s not necessary: just the time with you is the best gift. But there are things that make for good gifts and things that don’t. A lot depends on the individual person. Before bringing any food item, check on food allergies or dietary restrictions. Unless you know the person to be in sound mind, I’d check with someone other than them. Again, depending on a person’s abilities, a fruit basket may not be best. It’s healthy, but some might not be able to peel fruit or might not have knives in their room to cut them up, and it might spoil before they can finish it. I’d generally avoid decorative items unless you know the person could use them. Most have had to downsize their possessions to be able to live in one or two rooms and only have limited space on their walls or end tables. An exception would be anything that children have drawn or colored – most love that and can tape the items on a door or somewhere.

Some items that have made good gift baskets for my mother-in-law in the past:

All-occasion greeting cards (back when she was still sending cards)
Stationery and stamps (when she was still writing)
Pens and pencils
Lotions (some might have skin sensitivities)
Bath items: nice-smelling shampoo, body wash, powder. Avoid bath oils – too slippery
Large-print books, magazines, crossword or word search puzzle books
Small individually wrapped chewable candies
Small packages of cookies
Small throw blankets
Slip-proof socks
Magnifying glass
Tissues
Flowers or plants (see note below)

In our experience, cut flowers (even from the visitor’s own garden) worked better than plants. The staff in a facility doesn’t have time to care for a plant. I personally do not have a green thumb. Unless the resident is aware enough to care for one or has family members who visit often enough and don’t mind caring for a plant, cut flowers are best to brighten up the room for a few days and then can be discarded.

Most facilities do not allow any medication in resident’s rooms: all medication has to be dispensed by the staff (though we did get away with Tums), so I wouldn’t include medicine in a gift basket to someone in a facility.

Cards and notes. My mother-in-law has also been blessed by friends and family sending cards. That is a highlight of her day when I bring in a note or card someone has sent and read it to her.

Value. Sometimes we might wonder how much good we’re doing when we visit or send cards, especially if the person has dementia and might not even remember who we are or that we visited or wrote. They might not remember, but for those few minutes you’ve brightened their day and brought them joy, so I’d say, yes, it’s worth it. I wrote in an earlier post, when I struggled whether it was worth it to drive for 40 minutes round trip for 10-15 minutes of groggy conversation, “But really, visiting her shouldn’t be about making me ‘feel useful.’ It’s about letting her know she’s loved and not forgotten and ministering to her in whatever way she needs.” Remember to minister “with good will doing service, as to the Lord, and not to men” (Ephesians 6:7).

Ministering to caregivers. I wanted to mention ministering to caregivers briefly, rather than a separate post, because I don’t have that much to say about it. It has greatly ministered to our hearts when someone have ministered to my mother-in-law in any way. I can’t tell you how much of an encouragement it is when someone goes to see her or writes to her. It’s encouraging when people ask about her, too, but if I can say this without it sounding wrong – ask about her, but ask about other things, too. When my husband was going through months of issues with his eye after a detached retina, he said that all anyone ever talked to him about was his mom and his eye. It’s not that he didn’t appreciate those questions: he did, but it would have been nice to talk about something else sometimes. Often when asked about my mother-in-law, there is really nothing new to say. When people ask me how she’s doing, I generally say, “About the same.” Some seem a little perturbed by that, so sometimes I go on to say, “She sleeps a lot, eats well, talks a lot sometimes but not at all other times.” I figure they don’t really want to know about bowel difficulties or things like that. 🙂 That’s pretty much her life right now. I don’t want people to forget about her and I appreciate their asking, but just understand there is often not much to say. “About the same” is at least a better answer than “She’s declining,” which is what we had to answer for several months before we brought her home. Sometimes people would seem startled by that response, but as a person gets older, that’s what happens.

A few times, especially when we first brought my mother-in-law home, it greatly ministered to me when someone asked, “How are you doing?” and listened with empathy and without judging when I said I was struggling with the idea.

It also helps when people understand that people caring for a parent might not be as available as they once were. A friend’s mother still lives in her own home an hour away and has had so many medical needs and procedures that my friend has had to lay aside some ministries she was involved in to be able to take her mother to various doctors and help her after procedures. In our case, my mother-in-law can’t be left alone, so we can only do things during the morning and early afternoon while we have home health care here, or we have to take turns or just have one of us go to events in the afternoons or evenings. Some times that’s fine, other times I’d rather stay at home than go by myself, and I don’t like to be out too often and leave my husband to spend his evenings or weekends caring for his mom alone after working 50-60 hours a week. Occasionally we’ll pay extra for home health care to be here in the evening, usually when the family is all here so we can go out, but otherwise we just accept that this is going to be a quiet and somewhat limited phase of life. It’s similar to having a new baby in the home: for a period of time, caring for that family member is one’s primary ministry.

Besides showing an interest in my mother-in-law, there is not really much that we need personally. We haven’t needed meals or errands run or that kind of thing. I did come across one article with some ideas along those lines, and Sandy, whose husband received a heart-breaking diagnosis of early-onset Alzheimer’s while in his 40s, has mentioned in passing things that people have done that have blessed her family.

I’d love to hear more ideas from you. If you have an older loved one, what are some things that people have done that have been a help to you?

Other posts in the Adventures in Elder Care series:

Helping Parents As They Age.
Making Decisions for a Parent’s Care.
Our Experiences With Assisted Living and Nursing Homes.
Caring for a Parent at Home.
A Plea to Caregivers.

Adventures in Elder Care: A Plea to Caregivers

EldercareIn previous posts from my Adventures in Elder Care series, I discussed helping a parent as they age, things to consider when making decisions about care, our experiences with assisted living and nursing homes, and caring for a parent at home.

As we’ve dealt with my mother-in-law’s slow decline, we have had her in three different assisted living facilities (she had to move from the first when we moved to another state, from the second when she could no longer get herself where she needed to be during a fire drill in the allotted time, the third when she was hospitalized with a septic infection and her facility said they would not take her back because her needs exceeded their abilities), a nursing home, and now we have her at home with home health care aides coming in a few hours a day. We’ve seen a variety of caregivers, some very good, and a few, not so much. I wanted to bare my heart with a plea to caregivers.

But before I do, I want to say that I know you don’t have an easy job. We saw a fairly quick turnover in all the facilities where my mother-in-law was. I assume people get into this profession because they have a genuine desire to help people, and I can imagine the daily toil burns some out. I know you’re underpaid and overworked, that your job can be messy and trying. I know some residents are unreasonable or argumentative, some say or do inappropriate things, some are even violent. At my mother-in-law’s facility, one resident always cried if she wasn’t asleep, several were always trying to escape, one often yelled from her room, the TV was always blaring, and once as I sat and listened for the time I was there, I thought, “I would go stark raving mad if I had to work here for hours every day.” I know doing the same tasks, having the same conversations, dealing with the same problems every.single.day. can wear on you.

But still I plead with you to remember a few things as you care for folks. I’m reminding myself of them as well since I now help take care of my mother-in-law in our home:

1. Do unto others as you would have them do unto you. The Golden Rule. The teaching of Jesus. This one principle would take care of a number of issues. Some times, when I’d see my mother-in-law bent over double in her wheelchair or with red splotches on her face due to food that hadn’t been completely washed off after a meal, I’ve wished I could say to someone, “What if this was your mother? grandmother? How would you like to be treated if you were a resident here?” Most times these things are oversights rather than willful neglect, but still, in our experience those things became a pattern that affected the quality of life of residents.

2. Remember the residents are people, not tasks. It’s so easy to get caught up in all the things that need to be done that we can forget that we’re dealing with real people rather than a list of tasks to accomplish.

3. Take care-giving tasks as opportunities to interact socially with residents. Take time to show personal interest in your residents, even if they aren’t responsive. After we brought my mother-in-law home, I found several training videos on YouTube about using a Hoyer lift, changing someone’s position in bed, etc. Most of the videos taught the caregiver to greet the patient/resident first, say hello, ask something about them, and then explain what they were going to do. I’ve seen some caregivers do this, but usually in limited fashion. I did see some come in in pairs and talk to each other during the whole procedure of whatever they were doing without saying anything to my mother-in-law at all and without really looking at her except for the task they were doing. When she was in a nursing home, on a pureed diet, and losing weight, we found that caregivers would sometimes watch TV while feeding her and not interact with her at all, but would just mindlessly shovel food in. Can you imagine being on the receiving end of meal times like that? We asked if they would turn the TV off, make sure her hearing aid was in and working, and talk to her a little while they fed her. When they did that, her eating improved.

4. Put yourself in their shoes. This overlaps with the first one, but what I mean here is to think about what it would feel like if someone came from behind you and started moving your seat suddenly. That’s how it feels if you start moving someone in a wheelchair without letting them know what you’re doing. (I know – I spent a bit of time in one.) It’s even disconcerting to have someone speak from behind you as they’re starting to push you: the suddenness can make you feel very disoriented. It’s better to come around, look the resident in the eye, and say, “I’m going to take you back to your room now,” or “I’m going to move you over just a bit.” Understand that they are usually either arthritic or stiff and slow-moving: don’t pull or jerk their limbs in an effort to get sit them up straight or moved where you want them. Sometimes they can move where you want them to, but it just takes longer. Don’t treat them like children. You can apply this principle to any numbers of factors.

5. Don’t neglect the quiet ones. My mother-in-law never liked to be any trouble. Usually if she had a need, she’d wait until we got there to ask. She liked to keep to her room. She didn’t yell or make demands. There were some residents who honestly could’ve used one full time person just to assist them, like the man who kept trying to sit down without checking to see if there was a chair behind him or the woman who was constantly calling for someone to come into her room and help her or the woman who’d wheel her chair into other people’s rooms and go through their drawers. The squeaky wheel tends to get the oil, as the saying goes: there were times we felt like my mother-in-law was neglected because she wasn’t demanding.

6. Keep good lines of communication between administration and staff. Sometimes we’d talk to the administration about an issue, and they’d assure us it would be taken care of, but either it was never relayed to the staff or it was ignored. Sometimes the administration would tell us certain things would be done that were just impossible. For instance, when we toured one assisted living facility, the administrator told us the staff could curl my mother’s hair before we picked her up for church on Sunday mornings. Not only did that never happen, but I would never have asked anyone on a Sunday morning to do that: it was just too busy. They’d brush it and pin it, but no one had time to curl it. This is something I usually did on Sundays and I was fine with it, but it just made the administrator seem a little out of touch with the reality of life on the floor.

I don’t know if any care-giving facilities do this, but I would love for them to have regular meetings where the staff can be reminded of some of these principles and also let the administration know some of the problems they’re dealing with.

7. Use the TV but not to the point of deadening. In the memory-care unit especially, it seemed like the goal was to get everyone clean and dry and then seated around the TV in sitting room. I know the TV can be very helpful in occupying their minds and keeping them still and out of trouble, but keeping them herded around it all their waking hours is mind-numbing. Most of the assisted living facilities and even the nursing home would have some activities for residents, but in the memory care unit they pretty much just used the TV except for one time when someone brought out some balloons and had them tap them back and forth to each other. They loved it: their faces lighted up and they got excited. I know this group is probably the hardest to come up with activities for, but it is so helpful to have something different to do for even just a few minutes a day.

8. Breaks might best be taken in another room. Sometimes when we’d walk in and all the residents were around the TV and all the staff were sitting at the dinner tables, it just looked like no one was working. We’d tell ourselves maybe they were just taking a break, but when that seemed to be the case nearly every time we came in no matter what time of day, it just didn’t look good. I don’t begrudge anyone taking some time to rest in-between meals and baths and bathroom needs, and I understand that at times that’s best done where you can still keep an eye on everyone, but just be conscious of what it looks like, especially if a family member has an issue with something that hasn’t been done for their resident and it looks like people are taking it easy or chatting instead of working. It might be best if one or two staff members at a time took breaks in another room so they could fully relax for a bit and so it didn’t like like everyone was visiting while the residents were watching TV. I appreciated that the nursing home my mother-in-law was in did not allow anyone to use their cell phones on the floor: they had to be in the break room or at lunch to do so. That kept the main areas looking professional and free from distraction.

9. Put people’s needs over decorations. It is important that the building and facilities look nice. These are these people’s homes, after all. It can be very depressing when things look run down. On the other hand, the decorations and such shouldn’t be overly elaborate. In one of my mother-in-law’s facilities, their Christmas display rivaled that of the mall’s. Maybe all that stuff had been donated, I don’t know, but my first thought was that I’d rather have a little less in the decoration department and use the money to hire an extra staff person. Paying for an elderly loved one’s care is expensive, and it can be a little galling to see hard-earned money used in such a way. There needs to be some kind of balance between making it look nice and cheery but not overdone.

10. Don’t expect visitors to watch out for residents. In one facility, the main doorway was off the main sitting area, and the residents on one side or the staff sitting at tables on the other couldn’t see the front door from where they were. They had a number of residents that were always trying to escape. When you visit there often you get to know some of the residents, so when some of them were at the door when I’d come in, I’d be very careful to shut it behind me, or if they were there when I was leaving, I’d use another door even though it was out of my way. Once as I was coming in, a lady with a purse on her arm came out. A few minutes later one of the staff came into my mother-in-law’s room and told me I had let one of the residents out. Well, how was I supposed to know she was a resident? She was new, so she wasn’t familiar to me; she didn’t look as old as some of the other residents; and the purse on the arm threw me. The doors should be set so that the staff can see them. Most of us visitors don’t want to accidentally let residents out or endanger them in any way, but we can’t be expected to police the doors or to know every single resident.

11. Be clear about what you do or don’t do. Some of the fine points of grooming we weren’t sure about. It would have been helpful if, when we first interviewed, the administrator had shared what things they did and what things we were expected to have done on our own.

12. Refer to the care plan regularly. Sometimes we were asked to fill out a detailed care plan in the beginning, but then after a while several items on it would be neglected. It’s easy to get into a routine and think you’re doing everything and not realize something is being overlooked. Some facilities kept these in the room, others kept them in folders in the office, but either way, take time to look at it occasionally just to be sure.

13. Don’t blow off the family members. Please understand that when family members bring something to your attention, they’re not just trying to be nit-picky and gripey. They do so out of concern for their loved one and a desire to see the best care for them. If what they want is beyond the boundaries of your job, kindly let them know, or tell the administrator about the conversation so she can let them know. In one facility, the staff kept putting my mother-in-law in her recliner in such a way that her back was at an angle in the chair rather than having her lower back flush against the back of the seat. When she began to need two-person assistance, sometimes the aides would each pick her up under one arm and lift her from her wheelchair to her recliner, something that was quite uncomfortable in her severely arthritic state. My husband asked, “Can I show you how her physical therapist showed us to position her?’ (like transferring her with a gait belt around her waist, facing her with arms around her and holding onto the belt to help lift and transfer, and seating her in her chair in a way that was better for her posture). Some were very receptive, but some were not and said that they were trained and knew how to do their job.

The problems I’ve mentioned are some that we have experienced personally, and I am sure if we have, others have, too. That’s why I mention them. Sometimes we have brought an issue to the attention of the staff not to have them do something immediately (often we had already taken care of the problem), but just so that they could be aware and improve their services. We do know that no person or facility is 100% perfect, and sometimes mistakes will be made or concerns overlooked: we know everyone is only human (including ourselves). But being aware of some of these principles, especially the first few, would make a world of difference.

Please know that even if we’re discussing a problem, we are thankful for you and the work you do on behalf of our loved ones. And those who go beyond just punching the time clock and doing their job to taking an interest in and genuinely caring about their residents are worth their weight in gold, and we’re very thankful.

I wanted to add just a few thoughts to caregivers who work in private homes. Much of the above applies, but there are some particular factors involved in someone’s home.

1. Be on time. People plan their day around your being there.

2. Be professional. This is a job. Don’t take it casually. Give plenty of notice if you can’t be there for some reason.

3. Duty first. In someone’s home you will likely have some down time. It’s understood that in most cases you won’t have work to do every minute. But whatever you’ve agreed with the family that you will do while in the home, make sure that is done first before reading, using your iPad, or talking on the phone. It’s galling to have to do some of the tasks the caregiver was supposed to have done while she was there – not that we are above those tasks, but we paying $17 an hour for work that was neglected while she chattered on the phone.

4. Give the patient your full attention when feeding, changing, etc. Don’t use that time to talk on the phone. You should really be on the phone only when there is a pressing need: you’re being paid to work, and talking to friends and family just to chat should be done on your own time. And though your patient likely won’t need your attention 100% of the time – there will be time when he/she is asleep or watching TV, etc. — don’t just leave them in bed or their wheelchair unattended for long stretches of time while you sit separately doing your own thing. Part of what you’re being paid for is companionship.

5. Clean up after yourself. The family shouldn’t have to clean up your spills in the microwave or sticky residue on the end table where you set your coffee or food, etc.

6. Adapt to the people in the home. The other people in the house, usually family members, will differ in various homes. Some are extroverted and gregarious, some are private.

7. Don’t resent situations where the family members are watching TV or playing solitaire on the computer while you’re working. They may be paying for you to be there so they can work or run errands, but they’re might be paying you just so they can have some time “off.” They have care-giving duty all the rest of the time you’re not there, or they may hire full time caregivers because they don’t feel comfortable or able to do ti themselves.

In closing, since I am a Christian, I want to share with you some verses that have helped me in care-giving. Maybe they will be inspirational to you as well.

Now we exhort you, brethren, warn them that are unruly, comfort the feebleminded, support the weak, be patient toward all.
(I Thessalonians 5:14.)

Whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward (Matthew. 10:42).

To do good and to communicate forget not: for with such sacrifices God is well pleased (Hebrews. 13:16)

God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister (Hebrews. 6:10).

So after [Jesus] had washed their feet, and had taken his garments, and was set down again, he said unto them, Know ye what I have done to you?Ye call me Master and Lord: and ye say well; for so I am. If I then, your Lord and Master, have washed your feet; ye also ought to wash one another’s feet. For I have given you an example, that ye should do as I have done to you (John 13:12-15).

With good will doing service, as to the Lord, and not to men (Ephesians 6:7).

For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me. Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me (Matthew 25:35-36, 40).

 

Adventures in Elder Care: Helping Parents As They Age

Eldercare

Before I wrapped up this series, I wanted to share some odds and ends thoughts about helping parents as they age. This list would probably vary from person to person because parents age differently: we know a man well into his 80s who stills travels internationally and just got remarried a couple of years ago, but both of my parents had serious health issues in their 60s and died before they turned 70. Some parents are pretty self-sufficient as a rule whereas others need a little more help. Some want help, some don’t. These suggestions arose primarily from our own experience of seeing my mother-in-law through the last dozen years or so of living alone, then not being able to live alone, then going from assisted living to a nursing home to home with us. Some arose from friends’ experiences. By all means tailor any of this to fit your situation. I’d welcome any suggestions or experiences you’d like to share in the comments.

1. Have “the talk” – about finances. It’s hard to say when this should be done, but it should be well before finances become an issue and before any kind of dementia has set it. I’ve heard of some with dementia who thought their kids were “after their money” when they tried to work out power of attorney and such when the parent could no longer handle their own affairs. Some parents will be on top of things and will initiate the conversation with you (which is preferable). One suggestion would be to ask your parents as they get close to retirement how they’re set for the coming years and what their preferences would be if anything should happen to make them unable to take care of things.

In our case, my mother-in-law was the one who handled the finances in her marriage, and after her husband died she was happy to give her oldest son power of attorney. When she moved here, power of attorney was given to Jim since he would be the one actually handling her finances, paying for assisted living, supplies, etc. He got a joint bank account with her name and his on it so either of them could write checks. For years she wrote checks for church and for Christmas presents, but he wrote checks for bills. She would sometimes ask about how things stood but seemed content with how things were being handled.

2. Have the other talk – about end of life issues. This can be a difficult or awkward situation, and some parents will not want to discuss it at all. If something should happen and your parents have not made any living will or advanced directives, all you can do is try to make the best decisions you can. I’d advise you to do some research before having to make a decision in a crisis. For instance, we thought feeding tubes should always be offered if needed, but then discovered there are situations where it would cause more problems than it solved. When my dad needed a ventilator, one sister-in-law was adamantly against them because she had seen people who were for all practical purposes gone, but were kept alive on a ventilator; however, my father only needed one for about ten days. I once felt that CPR should always be performed, but on an elderly person, chest compressions can break bones. If you can gather information beforehand, you’ll be better prepared to make these decisions in a crisis.

3. Sibling involvement. It helps if everyone can be involved in the discussions and decisions that have to be made. Some of these, particularly end-of-life issues, can be especially delicate and emotional. If all the siblings are nearby, it’s best if they can all be involved in a parent’s care, but realistically it does not always work out that way. If the lion’s share of care falls to one sibling (often due to distance), continue to stay involved, show interest, ask how things are going, etc.  Abide by their decisions unless there is neglect or abuse. If there is an elderly family member with no children, others need to step in. We knew of a situation where an older lady in our church lived with a daughter who had some kind of mental issues, was a hoarder, had stuff stacked all over the house with only a narrow pathway for the older lady to get around in her walker, had something like 16 cats, some of whom she kept tied on strings in one room, which smelled horrible. When we knew of all this, we tried to help, but found out that unless there was active abuse, there was not much we could do as “outsiders.” Someone called animal control. and they came and took a few of the cats, but that is all. Another lady tried to help the older lady find a different place to live, but ultimately she did not want to leave her daughter. At her funeral when I saw rows and rows of her relatives, all I could think was, “Where have you people been the last several years?”

4. Help where needed, but unobtrusively. Long before parents get to a place where they can’t live alone any more, they might need help here and there with a variety of issues. They begin to lose steam or get to the place where they can’t see well and may not even know of some problems.

We lived 2,000 miles away from my husband’s parents, but the last several times we visited, my husband would seek for something to be done around the house (like rebuilding the roof on the carport, etc.)  and suggest doing it while we were there. It gave him and his dad some time to do something together, helped with something that really needed to be done, and kept his dad from climbing a ladder to do it himself. 🙂

We noticed the last several years that my mother-in-law was in her own home that things like dishes weren’t being done as well, not because she was letting them go, but because her eyesight and sense of touch was getting to the place that she didn’t realize she wasn’t doing as good of a job. I’m a bit germophobic, so when I’d drink a glass of ice water with “floaties” in it, I’d get pretty grossed out. This was before the days of readily available bottled water. She didn’t have a dishwasher, didn’t have room for one, and would not have wanted one anyway. We started getting paper plates and plastic cups when we visited, to “make things easier on her” – -which was technically true.  There were always piles of dishes after every meal, and sometimes she accepted help, but more often than not she liked to do them – it was her “thinking time.” Having some disposable products did help lighten that load, but it also helped us be assured that we were eating and drinking off clean utensils.

I mentioned earlier that sometimes household help can be hired, especially if the family doesn’t live nearby.

You may need to transfer things like Thanksgiving and Christmas to your house rather than the parents’ home, or at least spend time helping them get ready for it. You have to tread carefully with long-standing traditions like this: some might feel relieved not to have the pressure and work, but some might get their feelings hurt.

I mentioned helping unobtrusively: you don’t want to barge in and take over, or make them feel inadequate. Try to offer whatever help you think might be needed in a way that encourages them rather than demeans them.

And sometimes you just have to accept that things like the housekeeping might be at a lower standard than it once was. The last few years my mother-in-law lived alone, she pretty much let her dog have the run of the place, and every surface was covered with dog hair. It was a nuisance, but it wasn’t a safety or health issue, and his companionship meant a lot to her.

Sometimes helping means insisting on something they may not like. My mother-in-law was very much a status quo person who didn’t like to make any changes. Even when her hearing aid was not doing any good, she insisted it was fine, and we had to gently insist on going to the audiologist to be evaluated for a new one.

Sometimes helping may mean running interference. My mother-in-law had trouble with one physical therapist at the assisted living place (he had a Croatian accent and she couldn’t hear him well, couldn’t understand what he wanted her to do or why). He thought she was just being uncooperative. My husband had to take time to be with them for their first few sessions to help them interpret each other, but after they they got along great.

5. Help them to be as independent as possible as long as possible. At home or even in the lower-ranged assisted living care, there might be tools you can gets or little things you can do to help them be involved in their own care as long as possible: the seven-day pill holders to help keep their medications straight and help them remember what to take when; “reachers” to help them with hard-to-reach items (I use one of these myself!), an device to help open jars (I use one of those, too), etc. My husband tied bits of rope between his mother’s dresser drawer handles to make it easier for her to open them when she began to have trouble with them. He also put easier-to-read labels on the TV remote for the most-used buttons.

There will come a time when they will likely need help with just about everything, but for as long as possible let them do what they can do. We had elderly neighbors once, two sisters, who cut their own grass well into their 70s. One of them even painted her back steps at that age. My first impulse was, “Oh, we should go over and help them with that!” But one of them in particular liked being able to take care of herself. I just watched a Waltons episode when the grandmother came home after having a stroke, and every time she tried to do something, someone jumped up to do it and told her to relax. They meant well, but they made her feel helpless and useless. Even as their abilities diminish, let them do what they can safely do.

6. Don’t squelch talking about the past. As this post points out, they don’t have that much future left, and it may not look all that bright and cheery. This is a great time to ask them about their growing-up years – and a good time to write some of these things down for posterity. One of the things I regret with my mother-in-law is that I didn’t ask her more about these things and didn’t write down what she did say.

7. Help them find usefulness and purpose. This overlaps a bit with the above two points, but an older person can get pretty discouraged when they lose some of their abilities and even lose their home. Once when we had my mother-in-law here for dinner, a funny story from her past came up that we all enjoyed and laughed over: she did as well. Then she said, “Well, at least I’m good for a laugh.” It didn’t hit me until then that she might not have felt she was “good for” much of anything else. You can encourage a parent that as long as God has them alive, He has a purpose for them. Psalm 92:14 says, “They shall still bring forth fruit in old age; they shall be fat and flourishing.” Perhaps you can help them organize their photos into albums (something else I wish I had done) and hear the stories behind them. Remind them often that you’re glad they are here.

8. Always honor and respect them as your parents. I cringe a little at the phrase “parenting your parents” or the idea of “switching roles” with them. In one assisted living place, when we came to pick up Jim’s mom for something, one of the aides said, “It’s almost like you’re the parent now, isn’t it?” and then turned to his mom and said, “Your daddy is here.” Umm…no. Even as she has lost more of her abilities and we’ve taken on more of her care, we don’t think of her like that. As she has experienced a bit of dementia, Jim has had to remind her about some things from time to time (like using her fork rather than her fingers at meals or insisting her hands be washed), and sometimes that might have involved a sharper tone if she persists, but we don’t treat her as a child. I know family dynamics can be tricky and some parents can get more child-like, but as much as possible we still need to show them honor and respect.

9. Forgetfulness and dementia. My mother-in-law does not have Alzheimer’s, so I can’t really speak to that (and again, I’d welcome any perspectives you’d like to share in the comments). She has had a degree of dementia. It’s usually worse when under stress or when anything different is happening, and it has increased over the years.

As a general rule it doesn’t help to say, “Don’t you remember?” (Lisa suggests here to give them the answers rather than questioning them). Sometimes it does help to gently remind them of things: for instance, when Jim brought his mother here from ID, the folks at her church had all given her cards and told her good-bye, and all her kids and several grandkids had come to a combination 80th birthday/farewell party. Yet on the plane, she told Jim, “I think I’ll just stay for a few days and then head back home.” He wisely didn’t try to “set her straight” then and there, but later on he said, “Remember when all the folks at church gave you cards? Do you remember what those were for?” At some point she said, “Oh, that’s right. I’m moving to South Carolina.”

A nurse in the nursing home once told a member of a group from our church who were visiting that it is best not to alter their reality. Sometimes when they get “stuck” on something, distraction is the best tool. When Jim traveled with her, she’d say things like “I sure hope you know where we’re going” and get a little rattled by it all. Even though he is a seasoned traveler, instead of just telling her, “Don’t worry about it, I’ve got it covered,” he told her what gate he was looking for at the airport and asked her to help him look for it. That gave her something to occupy her thoughts. Recently she was “stuck” on needing to go to her daughter’s house. Jim wasn’t home when this started, and at first I tried to remind her that she lived in TN now and that her daughter was back in ID. But that wasn’t sinking in. It was one of our worst weather days this winter, and when Jim got home, he told her, “It’s snowing out now and the roads are icy, so we’re just going to stay here for the night.” He had to go over that a few more times, but after a while her thoughts turned a different direction.

Even in visiting in the “memory care” unit of assisted living, residents would stop us and ask us if we could help them get somewhere. At some level they knew they weren’t home, and some of them were constantly trying to figure out ways to get there. One lady stopped Jim once to say that something was wrong with her car and she needed to get to it. It was close to dinner time, and he said, “I tell you what, why don’t you stay and eat dinner, and we’ll see about your car later.” She felt so honored to be asked. 🙂 (On a side note, when visiting a nursing home or a memory care or Alzheimer’s unit in an assisted living facility, sometimes it is best to avoid engaging the residents in much conversation. When we visited my m-i-l in regular assisted living, we talked with the other residents quite frequently. But we quickly found that in the “memory care” unit, they often wanted you to help them with something, and when you couldn’t, they would get agitated, sometimes angry, and even start yelling and cussing, which not only disturbed themselves and others but made it hard on the aides to get everyone settled back down. We learned to just cheerfully say hello in passing without stopping to talk, and if we did get stopped and asked for something, we’d point out one of the aides and say, “Maybe she can help you.” )

10. Helping them deal with government agencies. Even if you have power of attorney, there are many situations where an agency will want your parent there. Once when my husband was trying to deal with one particular issue (I forget what it was), the man he was talking to wanted to talk to my mother-in-law on the phone. My husband tried to tell him she was very hard of hearing and especially  had trouble hearing on the phone, but the man insisted. So my husband went to her room at the assisted living facility, called the man, put the phone on speaker, and they tried to have a conversation. When she couldn’t hear and Jim was trying to convey to her what the man had said, the man shouted, “Don’t you dare tell her what to say!” Understand that they are trying to protect the elderly from being taken advantage of by unscrupulous relatives (unfortunately that does happen), but sometimes they do make it unnecessarily hard on those of us who are trying to help get necessary things done.

11. Smooth awkward moments. You don’t need to call attention to every mistake or fumble: if they’re aware of it, they probably feed bad enough already. Just help take care of spills or messes or whatever without making an issue of it. When they start needing help with personal issues, just handle it as matter-of-factly as possible – I took that cue from when I’ve had surgeries and illnesses and needed help with things I’d much rather have done on my own. Usually the nurses just came in and we got it done, and some of them were even cheerful about it. When my mother-in-law started needing help going to the bathroom, she’d say apologetically, “I bet you never thought when you got married that one day you’d have to help your mother-in-law go to the bathroom.” Well, no, I hadn’t. 🙂 And helping someone that way or changing dirty Depends later on is not really anyone’s favorite thing to do, but it helps to just look at it as meeting her needs and to handle it with as much grace as possible. My husband is great at easing awkward issues with humor.

12. Don’t neglect spiritual needs. Linda had a great post on this. When they can’t read the Bible for themselves any more, take time to read it to them. Some can handle CDs to hear the Bible read. Jim’s mom liked to attend church Sunday mornings until perhaps the last year or so when she just got too feeble and had little energy. When she was in the nursing home, a group from a church we were familiar with had a church service there Sunday afternoons, and Jim went over and accompanied her to it.

13. Have patience. There can be a multitude of frustrations as a parent gets older, even when we understand that they can’t help what they are doing and saying. This is probably the area that I most often prayed for while my mother-in-law was in assisted living, and often while driving there I often prayed and quoted to myself Colossians 1:11: “Strengthened with all might, according to his glorious power, unto all patience and longsuffering with joyfulness.”

The ultimate principle is to “do unto others as you would have them do unto you” (Luke 6:31). Put yourself in their place and treat them with as much love and grace as you would want others to show to you in the same situation.

Grandmother’s Beatitudes

Blessed are those who understand
My faltering step and palsied hand.

Blessed are those who know that my ears today
Must strain to catch the things they say.

Blessed are those who seem to know
That my eyes are dim and my wits are slow.

Blessed are those who looked away
When coffee spilled at table today.

Blessed are those with a cheery smile
Who stop to chat for a little while.

Blessed are those who never say,
“You’ve told that story twice today.”

Blessed are those who know the ways
To bring back memories of yesterdays.

Blessed are those who make it known
That I’m loved, respected, and not alone.

Blessed are those who know I’m at a loss
To find the strength to carry the Cross.

Blessed are those who ease the days
On my journey Home in loving ways.

– Esther Mary Walker

Related reading here at Stray Thoughts:

With All Our Feebleness.
Despise Not Thy Mother When She Is Old.
Caring For a Parent at Home.
Assisted Living and Nursing Homes.
Decisions for a Parent’s Care.
How Older Women Can Serve.
A Public Service Announcement Concerning Walkers.
Senior Version of “Jesus Loves Me
Am I Doing Any Good?
The Winter of Life.

Related reading on the Web:

Insignificant Is Beautiful.
Maintaining Sanity During Dementia’s Cognitive Decline.
8 Things Not to Say to Your Aging Parents.
Elders Who Abuse Relatives Taking Care of Them.
Adapting Your Home For An Older Parent.
10 Ways Caring For Parents Is Different Than Caring For Children.
You Are My Sunshine.
Alzheimer’s…My Reflections.
I’m Still Here.
A Psalm For Old Age.

Adventures in Elder Care: Caring For a Parent at Home

Eldercare

Some years ago I heard that one of the most delightful older ladies in a church we used to attend in another state had developed Alzheimer’s and that her son and daughter-in-law were caring for her in their home. One time when we had occasion to go back and visit, I asked her daughter-in-law how caring for her mother-in-law was going or what it was like. She smiled beatifically and said, “It’s our privilege!” I could only think, “Wow…she must be a better Christian than I am, because I think that would be hard.” It’s not that I wanted the nitty-gritty details, but I did want to know how God had given her grace for this ministry in case I ever had to do the same.

Our only experience with having a parent in our home for an extended time was when my dad came years before and got sick and ended up in ICU. I believe he was with us for about six weeks. He was not a Christian then (though he became one during that time), and he had lived alone so long that he had forgotten the give and take that there has to be with a number of people under one roof. I don’t mean to dishonor him by saying so, but he was quite cantankerous, especially when Jim was not home. The tension was so great that Jim said afterward we would never have a parent live in our home.

In my post on making decisions for elderly parents’ care, I mentioned that there are some relationships that thrive better when there is some distance. I share the experience with my dad mainly to say that I do understand it can be stormy to have a parent in the home, especially when age and dementia remove some the natural inhibitions. Some elderly parents can be abusive, and we heard enough even in assisted living places to know that bringing some parents home would be quite stressful. I wouldn’t even begin to know how to advise someone in such a case, especially when there don’t seem to be any other options, except to pray for a lot of grace.

In my mother-in-law’s case, we had been talking ever since we moved to TN about moving her home, because now we had a house with no stairs, and we had a room that would work well for her care (some of you may remember my talking about Jim finishing off a room from our L-shaped garage. My son and daughter-in-law lived there for a while when they first moved here, and ever since we had used it for Jim’s office and as a guest room). There was a small drop-off from the house to the garage for which we’d need to build a ramp, and we’d need to figure out shower issues. I was intimidated at first, partly because of my own health issues and partly because of the level of her needs: at the nursing home she had medical help right there. She is what the therapists call a “total assist”: she can’t walk, feed herself, go to the bathroom on her own, turn herself in bed, etc. At home it would be more complicated, and it would have a major impact on our lives. But as she seemed to sink lower and lower, we really felt the best alternative was to bring her home. So we got the room ready, the social worker at the nursing home set us up with renting a hospital bed, air mattress, and a Hoyer lift for transferring her. She also arranged for physical therapists, an occupational therapist, and a once-a-week RN visit, plus they had a couple of home health agencies they could recommend. Medicare wouldn’t spring for a Broda chair, but my husband found one on Craig’s list in a town 3 hours away for a good price.

So we brought her home at the end of July. Jim told me later he really thought we were bringing her home to die, because she had been at such a low place in the nursing home. But she has been thriving under one-on-one care. She had gotten down to 90 lbs. in the nursing home but now is well over 100 lbs. We have a home health aide here most of the day from M-F, and from 8-2 on weekends. The one who is here through the week is great: she has a lot of initiative and does a lot with her, makes sure to turn her every two hours to avoid bed sores, and they seem to get along great. She and I work together to give her a shower twice a week (actually she does the showering part, and now that we have done it several times, I’m more able to help with getting here ready for it and helping afterwards).

The physical and occupational therapists and nurse’s visits only lasted a number of weeks (about six, I believe.) The therapists told us that because she had been left contracted for so long in the nursing home, we would likely never get her straightened back out again, but doing some exercises with her would help stave off further contracting so we could dress, bathe, and move her.

The advantages of bringing her home have been:

• She’s thriving under one-on-one care. She gets more attention, time with meals to make sure she is eating adequately, stimulation of conversation and interaction with others.
• Since she has the same caregivers, they get to know her and her “quirks” as opposed to a high turnover in other facilities and having different people cycle through.
• We don’t have the long drive to see her (it had been about 20 minutes one way).
• We can see her more often through the day.

There are, of course, disadvantages, and I don’t share these to complain but rather just to be honest with anyone else reading:

• You can’t go anywhere without working around having someone else here with her.
• Caregivers cost $17 an hour with the agency we work with (more on that in a moment), so we can’t use them much more than we already use them. Consequently we rarely get to go out as a family to eat or to an activity.
• Caregivers are a big help, but the downside is having a stranger in your home (especially for an introvert like myself). Though none of the caregivers we have are strangers any more, it still feels awkward sometimes. I don’t want them to feel like they are servants who have to stay in that one area of the house: they do come into the house to do her laundry (I felt awkward about that at first, too, thinking I’d rather do it, but there is not that much for them to do since she sleeps a lot, so I relented), bring her lunch tray back, get water, go to the bathroom, etc., and everything except the bathroom involves coming through the areas where I usually am. Our regular weekday caregiver is very much a gregarious extrovert who I am sure has a hard time being in a room all day with someone who doesn’t say much, so she comes over just to chat sometimes. It’s funny – if I am up and around doing something, she doesn’t usually say much, but if I am at the computer, I guess it looks like I am “not doing anything,” so she is more inclined to come over and talk then, when that’s the time I would least like to be interrupted because I’m often trying to think through a blog post or writing a newsletter. But I’m supposed to be hospitable, so I try to be, and usually I don’t actually mind, but it’s just hard mentally to get some things done. There is one kind of freedom of having someone here and knowing her needs are being looked after; there is another kind when the caregivers are gone for the day and I feel like I can relax.
• When I am alone with my mother-in-law, there is often a certain amount of tension or pressure just in wondering if I should be over there with her if she looks like she’s awake (we have a video baby monitor). If I go in to feed or change her, I usually stay in there with her until she goes back to sleep, but often I still feel like I should be in there all day when it is really not necessary since she does sleep quite a bit.
• Changing her every two hours to avoid bedsores includes the nighttime hours, which Jim has taken on.
• If one of the regular caregivers can’t be here for some reason (going out of town, illness, etc.), there is not always a ready replacement, or we might not choose to use one because we’d spend so much time showing the new person what to do that it wouldn’t be a help to us.

I mentioned working with a home health care agency. The agencies who provide medical care (nurses, therapists) are different from the ones who provide regular day to day care like feeding, changing, etc. If we hired someone individually outside of an agency, we could probably pay them less while they would get more (I think of the $17 an hour we pay, they only get 10 or so). But we decided to use an agency for several reasons: if there is a problem with a caregiver, we can call the office instead of having to deal with it; if we don’t like how someone works, we can ask not to have that person again (which has only happened with one person); if the regular person can’t come we do have the option of having the agency send someone else out (there is one lady who is good as a fill-in); the agency checks out their background and skills before sending them out.

I haven’t mentioned finances: I can’t say much knowledgeably about them because my husband has dealt with that aspect. But I do know that neither Medicare nor insurance pays for home caregivers or assisted living: they did pay for the first 100 days in a nursing home (after a 3 day hospital stay) as long as there was some kind of skilled nursing going on (physical, occupational, or speech therapy). Once the therapies stopped, Medicare stopped paying. They did pay for the therapists who came to the house. They do pay for some of the equipment, such as the hospital bed. Actually they pay for the rental of it, and if we use it for I think 12 or 13 months, then we own it. They paid for a regular wheelchair but not the Broda chair (which she needs since she can’t sit up straight). They would not pay for the air mattress unless she currently had a bedsore (even though she’s had one before and we wanted one to help prevent another.) If her savings and monthly income were to drop to a certain level, then she’d have access to Medicaid. She receives Social Security, a small pension, and a VA benefit, which have not been enough to cover assisted living or nursing home or home health care costs, so we have had to dip into the savings from the sale of her house.

In fact, her savings has gotten down to a level that we feel we need to cut the weekday caregiver’s hours back. The weekend lady is here from breakfast til 2 p.m. since Jim is home on weekends, but the weekday lady we’ve had here til 5 p.m. To try to manage my mother-in-law’s funds better, we’re going to cut the weekday lady back to 1:30 p.m. We’re hoping that doesn’t mean she won’t be getting enough hours and will have to look for another situation: that’s one reason we haven’t cut back before now.

I’ll have to admit that even though I agree that we need to take this step, and though I can handle caring for her in the afternoon now, I don’t feel as beatific as my friend I mentioned at the beginning of this post. People act as if we’re doing something noble by caring for her at home, but it doesn’t feel so noble to spoon pureed food into someone’s mouth and clean up the other end, and there are some days (just like when a new baby is in the house) where it feels like that’s all you’re doing, even though you know it’s not. As I mentioned in talking about the “empty nest” recently, when your kids are grown and gone, you miss them, yet there is a side of you thinking, “maybe I can write that book now, or learn to quilt, or travel” (for some people – I am not a traveler myself). When a parent is in the home, some of those aspirations have to go back on the back burner.
But if this is God’s will, this is my ministry for now. In fact, the very night we decided that we would need to cut back on the caregiver’s hours, thereby increasing my own, God was so good to have these verses in my evening reading for Daily Light on the Daily Path:

Distributing to the necessity of saints. Rom. 12:13

David said, Is there yet any that is left … of the house of Saul, that I may shew him kindness for Jonathan’s sake? II Sam. 9:1

Come, ye blessed of my Father, inherit the kingdom prepared for you from the foundation of the world: for I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me. Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me. Matt. 25:34-36, 40

Whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward. Matt. 10:42

To do good and to communicate forget not: for with such sacrifices God is well pleased. Heb. 13:16

God is not unrighteous to forget your work and labour of love, which ye have shewed toward his name, in that ye have ministered to the saints, and do minister. Heb. 6:10

Another verse that often comes to mind with my mother-in-law is I Thessalonians 5:14b: “comfort the feebleminded, support the weak, be patient toward all men.” And I Corinthians 13 about love applies, too, as well as the verses I mentioned in my first post about our obligation to care for our parents.

I do need to look at it as my friend did, that it is my privilege to care for her. She does make it easy: she is sweet, rarely complains (except when someone’s hands are cold 🙂 ), and smiles and appreciates any little thing that is done for her.

Practical helps

I probably should make this part into a separate post as this is getting long, but I think I prefer to keep it all together.

I feel more confident about being able to care for her myself now after having observed and helped the aides with showering, changing, and moving her. I had been afraid of lifting her since my balance isn’t always stable, but with the Hoyer lift there is really no lifting involved. The aides started out using a draw sheet to move her from side to side or up in bed, but now we pretty much just use a large waterproof pad that is always underneath her.

Since she’s been home we’ve discovered a plethora of information available online (including videos on everything from feeding to using the Hoyer lift to repositioning) as well as resources. Just Googling ‘hospital gowns” and “waterproof pads” has led us to sites with those and other supplies. When she was having trouble staying in position in her shower chair, we tried using a gait belt, but that was a little too firm. I Googled “shower seat belt” and found just what we needed.

With other needs, Jim’s skills have been wonderful. I mentioned the shower situation. The therapist had recommended a sliding seat where the patient sits on one end and then is slid into the bath/shower area, but Jim’s mom wasn’t stable enough to do that. We have a step-in shower in one bathroom, so Jim built a platform in the bottom, so it was level with the step, and then a ramp leading up to it. We put her in her shower chair in her room, put a towel over her, and roll her backwards into the shower, then roll her back to her room afterward.

photo

We do put a towel under the ramp to absorb sprays and drips from the shower.

Transportation was another problem. Right after she moved home she needed to be established with a doctor since she was no longer under the care of the ones in the nursing home. Therapists, nurses, etc., make house calls, but not doctors. 🙂 There is a transport system here that can take patients in wheelchairs to appointments, but they don’t accommodate the Broda chair. So for that visit we had to prop her up in her wheelchair, be ready an hour before the time we needed them to pick her up, and be ready to wait an hour after being done with the appointment for them to come back and get her. Jim and the caregiver accompanied her, but it was a very long day, and there was no way to reposition her like we’re supposed to do every two hours to avoid pressure sores. So Jim found a ramp that would attach to the back side of our van, took out the back seats, and found that if he lowered her chair into almost a full reclining position, he could get her into the van, then raise her up into a sitting position. Then he had clamps to secure her chair into the place where the seat that he had removed usually plugged in, and he was able to secure the seat belt over her into the next seat. It’s hard to explain without photos and videos, but it worked very nicely and gives us more leeway in being able to take her places.

My man job since she has been home has been figuring out how to prepare a balanced diet that can be pureed. An immersion or hand blender works better than the big regular-sized blender (the big one works well but it leaves you with a bunch of bulky parts to wash). You can actually probably puree most anything if you add enough liquid, but some things work better than others (we even tried a tuna fish sandwich once. It did puree, but she didn’t care for it. :)). Almost any casserole purees well. Most vegetables we’ve tried work well, too (except corn and broccoli. They do well in casseroles but not so well by themselves, although creamed corn does fine). Canned vegetables and fruits work well. Mandarin oranges just turn into juice. Meats are probably the hardest. Soft meats like Salisbury steak do well. We keep a jar of prepared gravy on hand for that kind of thing. We add something called Thick-It if a food ends up too liquid. Usually we just puree whatever we’re having, but when we’re having things that would not puree well (like pizza and salad), we keep a few frozen and canned items on hand for her. Of course, things like pudding and ice cream that are already soft work great. We do supplement her diet with Ensure. It is probably not as necessary now that she has put on some weight, but we felt it was vital when she first came home and her weight was so low.

I hope some of this has been helpful. Let me know if you have any questions. As I’ve said before, I am certainly not an expert, but if I can share something I have learned along the way that will be helpful to anyone else, I’d be glad to.

Of course, the bulk of our experience has been with a parent who is pretty much bedridden. I’ve had friends who have brought parents home who are able-bodied but with Alzheimer’s or who are in good condition both physically and mentally but for various reasons can’t live alone any more. That would be a different set of adjustments, but it would include the need to incorporate a new person as an everyday family member rather than a guest and to make yourself available to that person. If you’ve had experience along those lines, please feel free to share in the comments.

In my next and probably last post in this series, I’ll discuss some ways to help parents as they age.

Adventures in Elder Care: Assisted Living and Nursing Homes

Eldercare

As I said in my first post in this series, when we were making decisions for my mother-in-law’s care, it helped me to read of other people’s experiences, so perhaps this will be of help to others. I hasten to say, though, that these are our experiences alone: they may or may not be typical and they are not meant as professional or authoritative advice.

If you foresee that you will probably need assisted living services for yourself or a loved one, the best recommendations will likely come from people you know who have also used them. Then either through the Yellow Pages or an online search, research what it available in your area. Most will have a web site for further perusal, and most are happy to set up an appointment for you to talk with the director and tour the facilities. Some good questions to ask them are listed in Seven Questions to Ask When Searching for Assisted Living and Assisted Living Community Evaluation Checklist.

There are a wide variety of assisted living facilities. My grandmother’s was basically an apartment complex for the elderly. She had her own kitchen and did her own cooking, but there was a nurse on site all the time who regularly checked blood pressure and such. Most facilities have common meals together in a dining room and provide housekeeping. Some have different levels of care, including hospice and an Alzheimer’s unit. Most provide activities for the residents; some even have “field trips” to area attractions.

Those in need of assisted living vary widely as well. Some are able bodied and sound in mind but no longer have the energy to keep up with a home. Most are in some state of decline, either physically or mentally or both, and others are confined to wheelchairs or have full-blown Alzheimer’s.

The key, then, is to find the best fit for your loved one, hopefully at a reasonable cost and not too far away. Realize that no situation is going to be perfect, whether your loved one stays with you or in a facility, but hopefully you can find a workable situation for all involved.

Let me say here that I would not recommend putting a loved one in a facility where there are no other family members nearby, especially if they have any kind of dementia. Even if they are near close friends or an active church family, those people will not have the same position of authority if any problems arise. Wherever you place them, you need to visit them often, not only to encourage them and show them love, but also to see that they’re being cared for well. Do not put them into a facility and assume they are being well taken care of and forget about them for months at a time.

I mentioned in my first post in this series about decisions that we had come to the conclusion that my mother-in-law needed to be in a facility. As we discussed the situation with other siblings, it became clear that moving her to live near us was the best option. Jim’s sister would be moving away from their town in ID, so placing his mom in a facility there would not be an option because there would be no one there to check on her regularly. She rarely complains, but to a fault: many times in the past we wouldn’t know there was some problem going on until we came to visit. When we asked why she didn’t let us know, she’d say, “I didn’t want you to worry.” So we felt if she was in a facility away from everyone, we’d never know how she was really doing. Other family members had careers and commitments, I was the only stay-at-home member at the time, our family could be involved in her life, the facilities in SC were much less expensive than in CA where Jim’s brother lived, so, all told, moving her East appeared to be the best solution.

The rest of the family lives out West, so they all gathered for Mom’s 80th birthday for a kind of farewell get-together. Jim flew back to help her get ready and to fly with her back East. Thankfully they did not have to close up the house at that time. His sister took care of that later when we got ready to sell it.

She handled the whole transition with a lot of grace. I can’t imagine leaving a home and church family of 35 years for such a major move. She did get understandably teary at saying good-bye, and one of the hardest parts was leaving her dog behind. She also got teary when her house was sold. But otherwise she has done quite well.

There was an assisted living place just a few minutes from us, and it worked out well for her to be there. It was divided into four smaller homier buildings, as opposed to a bigger, more institutional facility a little farther away. One of us visited her nearly every day, we brought her to the house often for meals and Scrabble and even to my youngest son’s basketball games, took her out to dinner a few times, brought her to church, etc. Being in a facility actually gave her a measure of independence that she enjoyed and faces to see besides ours. She was not inclined to participate in many of the activities: she usually preferred to stay in her room and read. But sometimes they’d talk her into going, especially if there was a church group singing. This facility had a bookmobile that visited at regular intervals and would even bring books to her room so she didn’t have to go rummage around for them. She was evaluated by a physical therapist and provided with a much-needed walker.

She was in that place for a year, until we had to move to TN because of my husband’s job. He valiantly staved off moving as long as he could, but finally we had to. She was in one facility here for a year, until her care needs reached a level they did not feel they could manage, and then in the “Memory Care” unit (not so much because of her memory but because she needed a higher level of care) of another facility for about a year and a half until she went to the hospital and then to a nursing home.

Each assisted living facility that we had experience with had different levels of care. Level 1 was usually minimal assistance needed: the resident could walk to and from meals, take care of their own bathroom needs, etc. Level 2 and 3 provided more assistance as needed, and of course, the higher the level of care, the more expense. We concluded that assisted living places were fine as long as you didn’t need much assistance: as Jim’s mom’s abilities declined, and the level of care she needed increased, the quality dropped off.

There were things we liked about assisted living:

• Access to physical therapy
• Regular checking of blood pressure, weight, etc.
• Camaraderie with others in the same situation. An older person can get a little depressed initially about the need to use a walker, etc., but when they see many other managing with one, it helps. They also see people in much worse conditions than themselves, which helps to put their own situation in perspective.
• Building friendships. My mother-in-law did not benefit from this as much because she preferred to stay in her room and read, but even with just going to meals, there were people who greeted her, were glad to see her, etc. It did enlarge her world a little bit.
• Family dinners. Two of the three facilities had regular dinners or events where family members were invited. It helped to get to know families of some of the other residents.
• We could decorate the rooms however we wanted (short of painting them), hang pictures on the walls, etc. to make it more homey.
• There were a few CNAs who were real pleasures, who were dedicated and kind and attentive.

But there were things we didn’t like as well. Most of these facilities were understaffed and the workers overworked and underpaid. We knew not to expect everything to go 100% like we’d like: no place is going to be perfect. But we didn’t expect to regularly have these kinds of problems:

• The only time we were away for an extended time was for my son’s wedding in another state. The day before we left, I found a broken picture frame on the floor – Mom was still using a walker then and must have accidentally knocked the picture off from where it was sitting. I picked up the big pieces of broken glass, went to the office, explained what happened, and asked if someone could vacuum up the smaller slivers. When we came back a week later, they were still there. Even without someone coming to clean that particular mess up, you’d think someone would have vacuumed the room in a week’s time.
• Food left on her face, from actual bits sticking to her face to a whole chin smeared with sauce, often enough to make red places on her face.
• The hearing aid was often left out, or put in without a battery, or the battery was put in backwards, causing her ability to hear and communicate to be almost nil.
• Food or poop (sorry for TMI, but it happens) would be left under her fingernails.
• When she began to lose the ability to sit up straight, we would come in to find her bent completely forward or bent to the side at a 45 degree angle. We purchased a shoulder harness that helped her to sit upright, but they said they weren’t allowed to use it because it was classified as a restraint. We could understand that, but we felt they could have straightened her up from a bent position and tucked pillows on either side, etc. Just looking at her should have alerted someone that she was extremely uncomfortable.
• One aide would give us grief every time we told her Mom needed to go to the bathroom. Then for a while, every time we would come in, she’d rush over and tell us that she had just taken her to the bathroom, and she’d had “a good poop.” Funny how no matter what time of day we came, she had just taken her. 🙂 The deal was, she wanted to take all the residents to the bathroom on her timetable. But of course they can’t all schedule their need to go to wait until she came. If, while we were visiting, Mom said she had to go to the bathroom, we’d call for an aide, and this one would question Mom about whether she really had to go, or make little remarks loud enough for us to hear when she took her in (“You don’t need to go? Well, we’d better try.”)
• Regular taking of supplies by the aides from one resident’s room to use for another. Granted, sometimes a resident would run out of Depends or wipes, and their family member couldn’t get there that day with more (often they didn’t let us know she needed some until she was completely out, even if it was 10 p.m.) But instead of “borrowing” from other residents, we felt the office should have kept a supply on hand that they could use in emergencies, and either incorporate it into the costs or charge the account of the person needing them. This was particularly rampant in one facility. Not only did wipes disappear at a fast rate, but Mom’s plastic cups, gait belts (used to help her stand up and to transfer her from wheelchair to other chair or toilet, etc.), and even her shower chair were used for other people, even though her name was on all of her things with black Sharpie markers. Clothes disappeared to who knows where.
• Some aides would not be gentle in moving her. For a long while, she could move and help them in their movement of her, but she’s stiff and arthritic, and it would take time. Some would jerk on her arm in ways that hurt her instead of taking their time and going about it slowly and gently.
• Some aides kept running conversations going with each other and did not interact with her at all while they transferred her or took care of her needs.

My husband would talk to the office about some of the problems, in a kind way – he’s not an angry ranter and raver. They were always very sympathetic and promised to make changes, but either that didn’t filter down to the aides, or they didn’t heed it, or things would improve for a while and then go back downhill. We did understand that if we came just after a meal, they might not have gotten to her yet to clean her up. Most of the time we would just take care of the issue and not say anything about it.

I mentioned the different levels of care. In the second facility she was in, as her abilities declined, a couple of aides began to complain about the extra work she required. We learned then that they had a rule that each resident had to be able to get out of the building on their own within 13 minutes during a fire drill. We hadn’t heard of that before. When Mom failed to do so, we were notified that she needed to move right away. No warnings, not 30 days, not even a week’s notice. We talked to the county ombudsman but found that assisted living facilities are not very regulated.

At the next place, we asked if we were going to run into the same problem when Mom declined to a new level, and they said no, she should be able to finish out her time there, and they could even arrange hospice care when it became necessary. She was there about a year and a half when she developed a serious UTI. She was prone to them, and her urine had a certain odor when she had one. When we suspected she had one, we asked the nurse at her facility if they could get a urine sample and then get her started on antibiotics (which they could do at this facility: they had a nurse practitioner who worked with them). For various reasons (among them their being out of toilet “hats” which they used to collect samples), they did not test her for a UTI until a week after we first mentioned it. They started antibiotics, but by that time the infection was rampant, and she was very sick and was taken to the hospital. While she was there we were told that they would not be able to accept her back. So we had about a week’s notice to find and arrange for her to be transferred to a nursing home.

We had talked to a couple of nursing homes before her last move and were told that she could be put on a waiting list, but it was rare that anyone was admitted through the waiting list: they usually were admitted after a hospital stay. Medicare’s regulation was that they would pay for 100 days of skilled nursing in a nursing home after at least a 3 day hospital stay. Mom was in the hospital for about a week, so that requirement was met. Physical therapists, occupational therapists, and speech therapists were all working with her, so she met the skilled nursing requirement.

When she went into the hospital, she had to be out on pureed foods, and she has not outgrown that. We never did figure out why. We thought maybe the depth of her illness as she battled infection caused her to be weaker, and then moving and adjusting to a new place and people was traumatic. But she has not regained the ability to eat regular foods without choking. All we can figure is that as she has gradually been losing muscular abilities (walking, going to the bathroom, feeding herself, etc.), this was a further loss of muscular strength.

The nursing home was the one facility we had been most afraid of, having grown up seeing people in them staring vacantly from wheelchairs or beds. But in many ways she received the best care there at first. They were very gentle in their handling of her. We didn’t have to bring up posture issues: they were on top of that. We learned there was such a thing as a Broda chair, which reclines and has little side pillows built in, so she could now sit in a wheelchair without being stuffed and strapped in. We had always thought it was sad, before, to see people in wheelchairs in the hallway, but now we understood that being out in the busier areas does get them out of their rooms for a bit, and it seemed stimulating to Mom to people-watch. Plus some people would speak to her as they passed by, giving her a bit more interaction than she would have had in her room.

One down side to the nursing home was that her living space was extremely tiny, and everything looked really run down. But a couple of the best aides were there, and one nurse, though seemingly gruff at first, ended up being one of our favorites.

But each facility is only as good as its weakest worker. Jim walked in a couple of times to see an aide feeding her, but watching TV while doing so and only interacting with Mom by shoveling food in. We asked them if they would turn off the TV while feeding her, make sure her hearing aid was in and working, and talk with her a bit while they fed her: we felt those measures would improve her eating. Some of them did. Then, after just a little while she would put up her hand to say she’d had enough. When Jim fed her and she did that, he would give her a drink, let her rest a bit, and then offer her more, and she would eat more. But the aides had the next person to get to, so at the first sign she was done, they’d move on to the next person. Even with regularly getting Ensures and high-calorie shakes, she got down to 90 lbs.

Then she developed a bedsore and couldn’t get into her wheelchair because of where it was, so she had to stay in bed for weeks while it healed. They had stopped physical therapy when she “plateaued,” but were still supposed to be putting soft splints on her arms and legs to keep her from curling up into a fetal position. But somewhere along the way that dropped off. So those weeks while she was in bed, she ended up curled up into a ball, and seemed lower than ever. When we would go to see her, she would often be sleepy or groggy, so we had no idea if she knew we had come, and she must have felt like she was spending endless days alone. People in the facility only saw her to change her Depends and feed her.

We had discussed often over the previous months whether we should try to bring her to our home. At this point we concluded that if we didn’t, she was going to waste away to nothing. In fact, when we first brought her home, Jim assumed that she didn’t have much time left, and he wanted to bring her home to pass away rather than having it happen while alone in her room there.

In my next post in this series I’ll discuss the ins and outs of having an elderly parent at home.