We’ve had Grandma home from the nursing home for about a week now. There has been a flurry of activity as the physical therapist, occupational therapist, speech therapist, and home health nurse have come in to do evaluations, but I think after this week just the physical therapist will be coming 3 times a week. We know she likely won’t get back to walking or feeding herself, but we’re hoping to try to loosen her up a bit from her contracted position. In the nursing home she most often went into a fetal position with her arms pulled up to her chest, and after just a few days at home we noticed her in a more relaxed position with her hands more naturally laying across her stomach or on her lap, even before the physical therapist came, so I think just being in a more home-like atmosphere, seeing us more often, having more one-on-one attention has been doing her good.

She has been eating well. Preparing meals with an eye to what can be pureed well has been interesting. Mostly we can just puree what we’re having, but I have a few canned or frozen things on hand for her for those times when what we’re eating wouldn’t work for pureeing.

We have a home health aide here from 7:30-6:00 right now. Since that is a long day, I thought we might have people coming in two shifts, but so far we’ve had one person Monday through Friday and a different person on the weekend. They’ve both done well, but the M-F person has been great. She and Mom seem to get along well, she does a great job, and even does some of the exercises the therapists have left with us to do. At first it was a little disconcerting to have someone else in the house – usually when that happens, it’s company, and you feel the need to spend time with them, entertain them, etc., so I felt a little guilty doing things in the rest of the house and leaving the aide alone with Mom, but I kept reminding myself that’s why we hired her. I also thought my introvertish self would have trouble with someone else here all the time, and occasionally I feel that way, but overall it hasn’t been bad. We touch base several times a day but I do have some stretches of quiet time, so it works out.

At some point we will probably cut her hours back to something like 7:30 to 1 or 2. Since Mom sleeps a great deal, it doesn’t make a lot of sense to pay someone to sit with her while she’s sleeping. We have to change her position, mainly turning her from one side to the other or on or off her back, every two hours, and I am not sure I could do that by myself yet, but I think I am close. I don’t know about changing her briefs alone yet (adults do not wear “diapers,” I am told. 🙂 ) The aide does it alone but it usually takes both Jim and I to do it at night. Her severe arthritis makes it a challenge to do much with her without causing pain. Mostly she smiles and is patient, but some days she seems in more pain than others.

One blessing before she came was that she needed a Broda wheelchair (it reclines and the footrest can come up) since she can’t sit up straight on her own, but the insurance or Medicare wouldn’t cover it (though they did cover the hospital bed and Hoyer lift). New Broda chair are several thousand dollars, but Jim found a used one in good condition on Craig’s List for a fraction of that. It was in SC, about 3 hours away, but he got up early one day and dashed out to get it and bring it back.

It has been a bit of an adjustment that we can’t just pick up and go like usual. Jim said it is something like when you first bring a baby home, but in this case we can’t pack his mom and take her with us. We do have to figure out how to get her to a doctor tomorrow: she has to have initial visits to get her medications over to his records from the nursing home’s. There is a place that transports patients that can take wheelchairs, but not the Broda chair. Plus we have to be ready an hour before time to leave and may have to wait as late as an hour after the appointment is done, so it is going to be a very long and trying day for someone who is usually only up in a wheelchair a couple of hours at a time. With all the therapists, nurses, etc., who can come to the home of a patient like Mom, it would be nice if there were doctors who could do that, too.

So far we are trading off going to church, even though and aide is here. We figured until we all got used to the situation and each other, that would be best. I think we can ask the agency that sends out the aides to have someone come over during an evening if we want to go out, and we’ll probably do that with a couple of birthday dinner coming up in the next few months, but we don’t want to do that too often.

In the midst of all of this going on, Jesse got partial braces on yesterday and we have an appointment with an oral surgeon today to discuss when he can get all of his wisdom teeth plus two others pulled. I am praying that we can schedule that surgery early enough for him to be healed before school starts at the end of August – preferably even next week, because Jeremy is coming to visit the week after, and we’d all rather not have to spend Jeremy’s vacation time having and recovering from oral surgery, but if it has to overlap we’ll just have to deal with it. (If you feel so inclined, I’d appreciate your prayers for the Lord’s timing in all of this.)

Overall I think we’re all adjusting well. I think she is happier and doing better overall. Jim seems to take things in stride and does the lion’s share of caring for her when he is home. I’ve had one or two “moments” when things seemed overwhelming, but with prayer and time in the Word, God helped me regain perspective and reminded me of His grace sufficient for every need. I think the move has been a positive change in general.

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.

…was yesterday. In past years we have brought her to our home for dinner, presents, and cake. But she is not very mobile any more, is on a pureed diet due to swallowing difficulties, and doesn’t stay awake for more than 10 minutes or so at a stretch. We weren’t sure how it was going to work to try to do something for her birthday, but we planned to go to her room after everyone got off work.

It all went well. She was awake for a longer stretch than usual – maybe because there were five of us there and usually it is just Jim or myself alone. Since we couldn’t do cake, we got her a McDonald’s mocha frappe (which she loves – and she needs the calories!) and put a candle in the straw.

We didn’t do much with gifts, both because she really doesn’t need anything, and because too much activity probably would have been wearing. Jeremy got her some soft fuzzy socks, we got her a new nightgown and some flowers, Jason and Mittu got her some flowers, so we opened those for her and showed them to her and read her cards for her and showed them to her. She was very responsive, even speaking audibly, saying, “That’s nice” or “That’s pretty.”

We even got to FaceTime with Jeremy so he could see her open his gift.

She made a good effort to blow out her candle, smiled, blew kisses at the kids, and seemed to enjoy the time very much (though her smile didn’t show up in the pictures!.

When we all left the room, Jim went back in to do something, and she was out like a light. 🙂

Then we all went to a nearby Asian place for dinner.

All in all a good evening.

We had to be at the eye care center at 6:30 a.m. this morning. Ugh! I am so not a morning person. But we made it and everything went well with Jim’s surgery for a detached retina. I’ve known three people in my life who lost their vision in the affected eye from a detached retina permanently, so I was a bit antsy. But they say they have a 90% success rate.

It will be a few weeks before he is completely healed from the surgery and we know how his vision will be affected. Today he has to wear an eye patch and sit bent over with his head on a counter or table, looking down. Not too comfortable for long stretches, but it’s due to a gas bubble placed in the eye and the need to keep it in the proper position. We have to go back tomorrow and will see then whether he’ll have to keep wearing the patch and will discuss when he can go back to work. They had a whole list of things he can’t do for certain amounts of time. He can’t fly for a few weeks or even drive to high elevations due to differences in pressure, so we’re hoping and praying nothing happens with his mom in that time frame.

So today’s a quiet day of rest and recuperation. We’ll see what tomorrow brings, but I wouldn’t be surprised if he is mainly supposed to rest for the remainder of the week.

Thanks so much to those of you who prayed after yesterday’s post. It was greatly appreciated! If you feel so led, keep ’em coming. 🙂