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.
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.
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.