Stories and thoughts about family and life

Nursing Home Know-How

on August 17, 2014

I’ve toyed very seriously with the idea of writing a couple of books. One of those is for people dealing with elderly parents at varying stages, and I keep telling myself that when I feel like I have “enough” knowledge I’m going to get right on that. The problem is that there is never “enough.” You think you know how things are going to go, and you think you’ve gotten into some type of rhythm, but that only lasts about two weeks before a whole new situation has put you right back into the confusion chair.
Some of the things that happen with my in-laws have become humorous. Honestly, they have to be, or we’d all go insane. My husband and I share with his sister and her family the daily goings-on of my in-laws and we all just have to shake our heads and smile. Some of the things are really funny, and some are so terribly sad that you just can’t find humor or that the things you do find humor in seem morbid to someone on the outside.
Just like enduring a bad relationship and finally realizing why the divorce rate is so high, you find yourself in uncharted waters here, and you endure the best way you can. The really sad times come when you have to treat your parents like children, denying them things you dearly would love to give them because it’s not “good for them.” We’ve had one than one conversation about just throwing caution to the wind and letting them really enjoy their remaining time here, but that is quickly reversed by the seriousness of the $1,000 pharmacy bill because of additional insulin, or the $250 bill each month for pull-ups, or the reality that I can’t get Medicaid approved for them quickly enough, and struggle constantly to try to get that in place to assure they will have care going forward. The see-saw is getting really old. Plus, it’s hard to reason with an 80 year old woman who doesn’t realize where she is half the time about why she can’t just have ice cream any time she wants it, or taking the administrative rights away from a 75 year old’s computer because he can’t comprehend what he’s clicking on well enough to stop downloading viruses. I don’t appreciate this juxtaposition of give and take that it seems we’re always evaluating.
It makes me sad on levels I can barely comprehend, let along articulate. My mother-in-law and I have certainly had our spells where we’ve not gotten along over the years, but I still recognize her as part of my family and as my husband and I were married so young, I view both of his parents as my parents as well (as does he). We’re blessed to still have all four of them at this point in our lives, and that our children have been able to know all of their grandparents (as I didn’t). My father-in-law and I have always been relatively close, and I’ve enjoyed his company. They both do things which drive me crazy, but I’m sure I do things that make them crazy too.
The moments of exceptional frustration intertwine with the blah humdrum of routine which intertwines even further with sadness or the occasional comedic episode. The comedy is becoming less and less, as the frustration is more and more. The routine gets lost in the middle somewhere, and the sadness takes a passenger seat to the frustration. The emotional roller coaster one is on when caring for elderly parents is nothing short of terrifying and long. Your own life gets lost in theirs, and you feel like you’re not allowed to feel your own emotions anymore for stopping to deal with theirs.
I’m ashamed to say that I awoke in the middle of the night a few nights ago, thinking about a trip we have planned to Disney in December with our kids (we try to go every couple of years) and thinking that I should be prepared for the fact that one of them might die just before we leave, or even while we were gone. I need to have a plan for all of that. I say ashamed not because I think we shouldn’t get to go to Disney with our kids, but that I feel a bit of resentment at the time we’ve lost with our children in the past five years. I can’t even count the Sunday afternoons they have entertained themselves on the couch watching television while my husband and I did ‘bills and pills’ where he would shower his dad or help with his mom and I would handle the finances. We had realized even then that we had to count out their meds, because they would over or under medicate if left to their own devices. We sat in a teary-eyed conversation one night, promising them we would keep them in their house as long as possible, and we kept our promise, but I don’t know if it was more beneficial or hurtful.
I’ve pretty much stopped going to visit them in the nursing home. My mother-in-law usually doesn’t know who I am, and it’s upsetting to the kids to go. We take them when they are interested, and we don’t push it when they’re not. They’ve sat quietly in the room and tried to engage in conversations, only to find that neither one of my in-laws have much of an attention span anymore. My mother-in-law doesn’t know who we are half the time, and it seems to upset her when I’m there. She’s always tolerated me in my relationship with her son, and I sense some of that anxiety comes through when she’s confronted with me. Maybe I’m just projecting. Maybe it’s me who is uncomfortable. Maybe I’m imagining the whole thing. My father-in-law will only visit in short spurts now as well. I wonder if that’s a subconscious decision on his part to let us “off the hook” now that they’re in the nursing home. I wonder if we’re just another random occurrence throughout their day. He fixates on things that would never have bothered him before, and he’s taken to calling me 10 times over the same thing when he decides he needs something. Louis is the one who actually goes by and interacts. He has to anyway–he’s the only one to whom his mother responds positively, and his dad only has requests of things he wants brought to him. This is more annoying than anything for Louis, I think. There is not much general “how are you” conversation. They ask the same three or four questions, don’t really comment on the answers, and then issue their list of requests. These trips aren’t much fun for Louis, I’d wager.
I can imagine how demeaning this life is for them. I went out of my way to make it as comfortable and “home-like” for them as possible, rearranging the room and creating a small living area where they could sit side by side in their chairs and watch television. Still, they never leave the room anymore, save the occasional walk to the courtyard. They have their meals delivered to their room, and they sit there hour after hour, day after day, week after week. They have a few regular visitors, and they seem pleased with that, although one of the visitors told me recently that Helen seems to not recognize anyone anymore–she acts as if the visitor is a stranger who just wandered in from the hall. This is exceptionally difficult for Louis, too. The last time he had to take them to an appointment, his mother kept calling him by his father’s name, and kept insisting that it was time to go “home.” We agonized for a long time over moving them from their house to their apartment. We even had entertained the idea of selling both houses and getting something with an inlaws quarters. A good friend of mine advised me against it, and I’m grateful she did. I don’t think we’re physically, not to mention emotionally, equipped for the things we’re seeing now. Helen is essentially dead weight, and needs to be lifted in and out of bed or the chair. She simply sits on the side of her mattress, much as a toddler would, waiting for you to dress or undress her, but not even offering to lift her arm or leg anymore. I can’t imagine what must be occurring in her mind, and we’ve seen the occasional manipulation she used to create now give way to complete and total confusion and loss. She literally has no idea where she is or what’s going on most of the time. She gets very excited when we bring her a treat, and very upset when she asks for one and is denied. Other than that, she doesn’t engage much.
My father-in-law called me this morning as I was running some errands. He told me that she’s started asking for her mother, and she becomes very upset when he tries to explain. I don’t know why, but this really has sent a chill through me today. She’s engaged in similar behavior before, but she’s usually not quite this adamant. I’m hopeful that when my husband gets home from his campout and can go see her, he can help calm her down; but honestly something about this feels different than the previous times. I have a strange sense of foreboding. And I feel the fear my father-in-law feels–the fear he projected in his voice when he called me. I debated going to see them myself this morning, but I’m trying to decide if I will cause more harm than good, and I certainly don’t want to make the situation worse. It really is something to watch how soothing it is for her to have Louis close-by.
I remember when my dad put his mother in a nursing home in town, as well as a neighbor of ours going into the nursing home. Both were good experiences. They enjoyed it, and made friends. They had people to look after them and ensure they had a good meal. They could socialize when they wanted and rest when they wanted. I think that’s the idyllic picture, and I wish very much they could have had that experience. Unfortunately, it doesn’t appear it’s going to work out that way. My sister-in-law had pointed out one night that they’ve become quite co-dependent, and they each need to have the other one close-by, but it’s also meant that they don’t try to engage anyone else. I often wonder what we might have changed if we had it to do over again.
I’ve had several conversations with my husband about whether we would have pushed for assisted living right out of the gate when we moved them out of their homes. If we had done that, would they still be able to live there? What if we had left them in the house? Maybe we should have just hired a private duty nurse? The realities always come back, though. There wasn’t enough money to do any of that. We probably waited too long to move them out as it was. Paul nearly died last October and November, which is what brought into sharp focus how bad Helen’s condition really was. We had no idea the amount of covering for her he had been doing. My husband assures me that this all means they’re in the right place, and they probably should have been there sooner. This was confirmed when we found his mom’s medical records from over a year ago that said she already needed nursing home care. Why didnt’ he tell us? I’m sure he was afraid we would separate them. We’ve been concerned for quite some time that she was weighing too heavily on him and bringing him down too.
I have to admire Louis’ sister, who can take a much more clinical, hands-off approach. She understands the physiology of it all, and she can appreciate that this is a simple process of deterioration. While it’s sad, it just is how it is and we have to deal the best way we can. Leave it to me to second-guess and wonder whether I’ve done everything appropriately.
So, back to the book idea. You can appreciate why I feel like I don’t have the knowledge-base to be a subject matter expert, huh? I can’t decide if that’s a good thing or a bad thing. I’d like to say that you handle a situation and you know better how to handle the next one, but I think in the case of elderly care, that’s very difficult. No two cases seem to be alike.


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