In 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).