I mentioned briefly recently that we decided to bring Jim’s mom home to our house.
Years ago when it became clear that she could no longer live on her own, we evaluated the situation and chose an assisted living facility for her. She has been in three different assisted living facilities since then (we moved once and her declining health necessitated the other moves. I’ve been thinking of writing a post about assisted living experiences: my main conclusion is that they are ok if you don’t need that much assistance), and she has been in a nursing home since February.
A number of factors went into deciding to bring her home, but the main ones were that my husband would like to spend as much time as possible with her in the time she has left, he feels she’d rather spend her last days at home rather than in a facility, and we feel she’d receive better care with one caregiver focused on her rather than an assortment with many others to care for.
There have been some excellent aides in each facility she has been in, and some of the best have been in the nursing home, ironic since that is the one we were most reluctant about. But in a sense these facilities are only as good as their weakest employee. If we could request that only this and that person be her caregivers, that would be great, but that’s not possible.
The biggest issue has been in regard to eating. Ever since her hospitalization earlier this year, she has had trouble swallowing and has been on a pureed diet. That didn’t do much to increase her appetite at first, but once she got used to it she seemed to do fairly well. But as she has seemed to be continually losing strength over the last few years, even just eating requires more energy than she can muster sometimes. It has seemed to work best to give her a bite or two, give her something to drink, let her rest for a bit, then give her another bite or two, etc. We got a call a few weeks ago saying she had lost weight and they wanted to talk about feeding tubes. We had researched feeding tubes earlier in the year and felt that if she could not swallow, that was one thing, but we felt that this was more a matter of taking time with her meals (hard to do when there are others waiting to be fed), and interacting with her during feeding. My husband has walked in some times during meal time when the aide has been watching TV and not talking to or looking at his mom at all except to spoon food in. Jim asked that they turn the TV off during meal times, make sure her hearing aid is in, and interact with her during meals. Most of them have done that, and her weight has picked up again.
But we’ve felt that her eating and her general care will improve at home with more individual focus. When Jim was there a few nights ago, she was in pain, and he asked the nurse at the desk for pain medication for her. He waited in his mom’s doorway about ten minutes while the nurses chatted and laughed together, and when he saw the nursing supervisor and started to approach her, then the nurses scurried around and brought Mom’s medicine. We know they can’t drop everything and come running for every request, but when someone is in obvious pain and asking for medicine (and she has never been “the squeaky wheel” – she’s not one who rings her bell and asks for things all the time. In fact, I doubt that she has ever rung for anyone), it seems like one could forgo chatting and laughing with a friend for a few minutes to attend to that need.
We will have home health care aides come in about 8 hours a day at first, and then as we get adjusted to her needs and routine, we’ll probably cut back on the time we have them here. We will likely always call them for her bathing: just for her safety we want someone who knows what they’re doing, and neither of us feels confident about being able to bathe someone who is losing more and more muscular ability, can’t sit up on her own, etc. On the other hand, she sleeps most of the time, and we don’t want to pay someone to just sit with her while she sleeps, so we may get to a point of just having them come in to help her with her morning routine.
Honestly, I am
a little uncomfortable about having non-family members in the house for long periods, so I think as soon as we can find the best balance for having aides here as long as needed but no longer, the better it will be. I’m also a little antsy about pureeing foods to the right level of consistency in a way that will be appetizing for her, but I’ve been researching it and plan to talk with the speech therapist at the nursing home, so I think that will be ok once we get started.
With the Medicare and nursing home regulations, if we find it is just impossible to care for her at home, we could have her readmitted within 30 days (normally you can’t be admitted unless you’ve had a stay of at least three days in the hospital), but we both don’t want to even try this if we don’t think it will work. It’s traumatic for her to be moved at this stage (and that’s something else we discussed about moving her here, but we feel she’ll settle in fine with us to be here with her more), so we certainly don’t want to move her here and then back within 30 days.
We’re planning to bring her home next week. The social worker at the nursing home has been great about lining up a hospital bed rental, a Hoyer lift, and getting us in touch with the home health care aides, etc.
I don’t know what this will mean for blogging, either my own or visiting others. Obviously that will have to take a back seat. It may not be impacted at all, as she does sleep a great deal, but if I’m scarce for a while, you’ll know where I am . 🙂 I so appreciate your interest in and concern for our family, and appreciate your prayers for this new stage of life.