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.