Book Review: The Song of Sadie Sparrow

In The Song of Sadie Sparrow by Kitty Foth-Regner, Sadie’s assisted living facility could no longer meet her needs, so her daughter found a lovely new nursing home. Sadie feels sad and neglected by her daughter, but soon she makes friends with the other residents and staff and gets involved in the activities.

Meg Vogel is in her fifties and ready for a new start in life. Her husband recently passed away from cancer, and she closed down the freelance copywriting business she’d had to neglect during her business. She’s hired at Sadie’s nursing home to assist the activities director, her special project being the use of her writing and interview skills to compile biographies of the residents.

Elise Chapelle is the daughter of one of the residents, Charles. She had quit her job as a teacher to take care of her father, but now that he is in a nursing home, she wonders what to do with her life. She takes a writing class that involves setting up a web site.

These three women from different generations form a friendship though Elise is a Christian and Meg is an atheist. Meg is particularly antagonistic towards Christians because her husband became one near the end of his life, and she felt his new religion and views took him further away from her. She’s fairly sarcastic in any kind of religious conversation, but she genuinely likes the other ladies.

I enjoyed a view of life from inside a nursing home. My own mother-in-law’s experiences in a nursing home not nearly as nice as this one were mostly negative, but her early assisted living experiences sound like they could have fit in with this book. One common theme in all of these places is the neglect of many of the residents by their too-busy families.

But this is not just a story about a nursing home: it’s a story of faith.

Kitty’s experiences inform the book as she was once an atheist (her story is told in Heaven Without Her) and she spent much time in a nursing home first visiting her mother and then volunteering. Her web site, Everlasting Place, hosts two blogs: Eternal Eyes: A Blog About Forever and Golden Years: A Blog About the Elderly. A neat interview with the author about this book is here.

Special thanks to the author for sending me a copy of her book.

(Sharing with Semicolon‘s Saturday Review of Books, Literary Musing Monday)

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12 Things You Should Know About Caring For the Elderly

Every now and then I come across articles like “Ten Things Your Plumber Won’t Tell You” or “12 Things Your Doctor Would Like You to Know.” Often they are pretty enlightening.

I’ve written extensively before about our experiences caring for my mother-in-law, almost four years in our home and five years before that in assisting living facilities and a nursing home, and shared some hopefully helpful tips for people in the same situation. But I got to thinking, if I ever had an opportunity to speak to a group or write one article on this topic, what are the top few truths or principles I would share? Probably among them would be these:

1. Preserve as much of their independence for as long as possible. It seems like often family members will see an elderly loved one’s need of assistance before that person does. Sometimes denial causes the elderly to think they can carry on as they always have: I think more often it’s fear of loss of independence. I’ve heard more than one person express dismay or impatience that their loved one won’t just go along with the program and make it easier on everybody and move into a facility already. But have you ever thought about what that involves? Depending on the facility and how much money is available, it means much smaller living space, selling the family home, departing with long-loved objects in order to downsize, communal meals, not being able to control your own medication or, to a certain degree, your schedule.  The first time we moved my mother-in-law into a facility, I thought it was something like a cross between a dorm room and a hospital. I liked the dorms in college: I wouldn’t want to go back to them in my later years. Think about having had your own personal space for 50-odd years and suddenly moving into one room that anyone in the facility can come into at any time. Granted, that accessibility, having the staff control medications, etc., is for one’s safety: but that doesn’t make it any easier or make one look forward to it.

2. If/when you do have to go against their wishes, be as gracious as possible about it. My mother-in-law is very much a “stay with the status quo” type of person, at least since she has been here. She has had hearing aids for as long as I remember, but when she first moved here, she couldn’t hear much at all even with the aids, even if we were sitting next to her and nearly shouting. She’d just smile and say, “You’ll just have to speak up!” Frustrating! My husband took her to an audiologist, and all along the way until she actually got the new hearing aids, she kept saying, “I’m doing all right with what I have: I don’t think we need to get new ones.” Jim just kept quietly insisting that we needed to explore the possibility, and once she got the new ones, she was pleased. She wanted to keep baking soda in her room because she used it as an antacid: Jim didn’t think the extra sodium would be good for her health. Once when I visited she just kept bringing it up and insisting it was fine. I had an “out” in saying Jim didn’t think she should have it, but we kept going over the same points of conversation. He finally compromised in letting her keep a pack of Rolaids in her drawer (which technically we weren’t supposed to do: all medication was supposed to be handed out by the nurse). I don’t think she ever used them, but it must have eased her mind just to have them. It’s hard to know sometimes when to insist and when to let something go. You have to choose your battles. But don’t make it a battle, if possible: don’t be confrontational or argumentative. Thankfully his mom was never combative, but I have friends whose parents are. It’s hard to bathe an 85-year-old adult who doesn’t want a bath and even resists it. You can let it go for a while, but eventually it has to happen. Distraction or diversion works for many things, so perhaps discussing something else while getting set up for the bath will get their minds on another track. (If any of you have tips along this line, feel free to share them!)

3. Convey to them that they are still important and useful. When we moved my mother-in-law into an assisted living facility, my husband told her she would never have to cook or clean again, and after having done those things for most of her life, she was glad to hear it! She loved having time to enjoy reading, her favorite activity. One day when she was visiting our home for a family gathering, and an old family story came up concerning something funny she had said years ago, we all laughed, including her. Then she said, “Well, at least I’m still good for something” (meaning, good for a laugh). I was stunned. I hadn’t realized that she hadn’t felt “good for something,” that she had kind of lost her purpose. One of my regrets is that I didn’t do more on visits with her, like ask her about her life and history and write the answers down to share with other loved ones, or go through a box of very old photos and arrange them in an album with her.

4. Treat them with dignity: don’t treat them like children. Very old age does have some things in common with childhood, but it is not the same. In I’m Still Here: A New Philosophy of Alzheimer’s Care, John Zeisel writes, “It’s not right to think of Alzheimer patients as entering their ‘second childhood.’ They have knowledge and life experience children don’t have.” That’s true of any elderly person. Once when my husband came to pick up his mom at her facility, the aide with her said, “It’s almost like you’ve switched places, isn’t it?” and then turned to his mom and said, “Your daddy is here, honey.” No, it is NOT like that. He had to ask her not to say things like that. Yes, the son or daughter will have to make major decisions and handle things the parent used to, and the parent may be incapable of doing many things any more, but that’s not the same thing as reverting to childhood. Especially fingernails-on-the-chalkboard grating is talking baby talk to them.

5. Do NOT put them in a facility without checking on the regularly and frequently. You would assume that everyone who works in assisted living or a nursing home is kind, professional, skilled, and will take the best possible care of each resident. We learned, sadly, that that’s not the case. I could tell you stories…my husband has said often that he’s going to write a book about this some day. Each place had some jewels in their workers, but each place also had some who were neglectful, who handled her roughly, who paid no attention to her posture, who talked over her to their coworkers and didn’t even look her in the eye while handling her in some way, who didn’t clean her face well after a meal so that she got red, rough irritated spots on her face, etc. Once I walked in to a facility, and they had her in her wheelchair in the common room with the other residents, she was bent over the side of her wheelchair at a 90 degree angle, even though there were several aides in the room, even though we bought some small pillows to help keep her upright in the chair. Plus the employees are overworked and underpaid and the facilities understaffed. On top of that, the residents might not be able to verbalize what’s wrong, either due to dementia or possibly even fear. My mother-in-law had a “don’t rock the boat” personality, and the more she declined, the more help she needed, the more her care declined. “The squeaky wheel gets the grease” is as true here as everywhere else. There were some residents who really needed a staff member with them almost 24/7 for various reasons, and that left the quiet ones like my mother-in-law unattended for too long too often.

6. Don’t forget them. Whereas #5 was more concerned about their safety and well-being, here I mean don’t forget them on a personal level. Continue to interact even if they don’t remember who you are. A lady in our church who writes notes once or twice a month to my mother-in-law checks in with me from time to time to see if she still enjoys them or gets anything out of them. I tell her, honestly, I don’t know if she remembers who the writer is, and I don’t know if she remembers anything the note said five minutes after it’s read to her, but for those few minutes, she knows someone thought about her and cared enough to jot a few lines to her. It’s incredibly sad to us when holidays or her birthday go by (and the days in-between as well) and she hears from almost no one.

7. The best thing you can give them is your time and attention. When my mother-in-law was in a facility, we tried to visit her every day. We usually sat and visited, but I’d run out of things to talk about after a while. I felt more “useful” when I could pick up or straighten her room or do something physical, but that tended to embarrass her. Likewise, gift bags, flowers, etc., are nice, but don’t feel you have to bring anything. What’s most valuable is for someone to face them, look them in the eye, talk directly to them and focus on them, or, if you live away from your loved one, a personal note, perhaps an new photo, or Face Time or Skype if possible.

8. All eating problems do not mean the end is in sight. Whenever I have mentioned eating problems with my mother-in-law to almost any health care professional, they’ll say, “Well, you know, when they get near the end, they’re just not as interested in food.” That may be true, but that doesn’t mean other factors might not be involved. When we moved my mother-in-law to our home from the nursing home, she was around 90 lbs., and we thought we were bringing her home to die. That was four years ago. I think a combination of food prepared and seasoned well, warm and not cold from sitting on a cart while food is distributed, and, most important, someone to feed her who takes time with her, all contributed to her eating well again and gaining weight. We learned that eating tires her out, so sometimes you have to give her a few bites, give her a drink, wait a bit, then try a few more bites. Even now she’ll have certain meals, or even certain days, where she’s just not interesting in eating. Since she doesn’t speak much any more, we don’t know if the food is too hot, too cold, doesn’t taste good, or if she’s just tired or doesn’t feel well. Sometimes I think she’s just not going to open her mouth because eating is the one thing she can control in her life. But that usually lasts just a day or so, sometimes a few days, and then she’s back to eating normally.

9. It is probably going to get worse. My mother-in-law has been on a something of a plateau for a couple of years now, but for a long while, if anyone asked us how she was doing, the response would be that she wasn’t doing very well. Sometimes people were taken aback that we didn’t have a positive cheery answer, like when people say, “How are you?” and expect no other answer except, “Fine, how are you?” in return, and they’re jarred a bit at any other answer, especially a negative one. Once we said, “Well, she’s declining,” and the person responded, “Well, we’re all declining.” (Sigh.) I’ve wondered what people expect when they ask that question in the waning years of a person’s life. The person may have many wonderful days, but in the long run, they are either losing abilities (in my mother-in-law’s case) or multiplying health issues, and things are steadily going downhill.

10. The caregiver needs care. Even if the loved one is in a facility rather than the home, often one of the adult children is primarily in charge of seeing to her care and needs. And of course, if she is being cared for at home, obviously that person or family is taking on the bulk of her care. The caregivers need to know they’re not alone, that everyone else cares. They may need advice, emotional support, financial support, respite. I’ve known some cases where one is the primary caregiver, but the other siblings take the parent home for a weekend or a few days. Distance or the parent’s condition may prevent that, but it’s nice if it can happen. Thankfully we’ve had friends both in church and online who have cared for parents in their home, and they’ve been highly valuable and helpful to confer with, even just to have that fellowship of someone understanding exactly what’s involved.

11. I’m not a saint, except in the Biblical concept that everyone who believes on the  Lord Jesus Christ as Savior is called a saint. Some people put caregivers on a pedestal or overly praise them, but we’re just ordinary people struggling through what we’re called to do. Appreciation or encouragement are more welcome than unvarnished praise, but it’s hard to know where the dividing lines are sometimes.

12. It’s hard. It’s hard to see one’s loved ones decline and to see their circumstances and quality of life reduced. It’s hard to feel the weight of their care. It’s hard to feel guilty about feeling that their care is weighty or about occasional resentment. My husband feels guilty that he doesn’t spend more time with his mom, but she sleeps about 20 hours a day, and it doesn’t do either of them any good for him to sit in her room while she’s sleeping. It’s hard to feel limited. It’s expensive to hire outside help – the agency we use charges $17 an hour, and we already have them here forty+ hours a week just so we’re free to run errands, make appointments, or just have a break. But we can’t just pick up and go out to eat, go on vacation, go to our son’s house, etc., without making arrangements and incurring more expenses. One friend who lived alone with her mom had people who could come over for a few hours or even a couple of days, but, still, that’s a lot to ask of someone, so the caregiver doesn’t feel the freedom to ask that often. In our case, my mother-in-law’s situation and the care needed is such that just having someone come and sit with her would not be sufficient. We’re limited even in ministry: we can’t go to everything that happens at church. My husband was a deacon when we first brought his mom home and submitted his resignation to the pastor because he just couldn’t be away for long meetings, etc., at that time. It’s hard to feel like even mentioning these things sounds like complaining.

I’ve written about this before, but what helps most is just accepting that this is our ministry for now, just like having a new baby in the house is a mother’s primary ministry. As Elisabeth Elliott has said, our limitations just define our ministry: “For it is with the equipment that I have been given that I am to glorify God. It is this job, not that one, that He gave me.” Each ministry carries its own responsibilities, weights, and cares, but “God is able to make all grace abound to you, so that having all sufficiency in all things at all times, you may abound in every good work” (2 Corinthians 9:8).

I’ve written from our experiences and that of friends, but, of course, every experience is different. People have widely varying capacities as they age: we know a 90-year-old who still lives at home, drives, is active at church and with her hobbies, an 80-year-old who still travels internationally and even recently remarried. I had one friend whose mother-in-law had Alzheimer’s but was physically fine, and she was able to take her mother-in-law with her wherever she went, at least in the earlier stages of the disease. And there is much, much more that could be said. But I hope you’ve been able to find some degree of common ground here and something helpful.

(Sharing with Inspire me MondayLiterary Musing Monday, Testimony Tuesday, Wise Woman, and Woman to Woman Word-filled Wednesday)

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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.

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: 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.