One of the driving reasons for my time constrained trip out was to make sure to visit my mother. Even if it is only once a month, I like to go for my own sanity if nothing else. It is not as if I really contribute anything to the management of the situation all, and certainly I have no expectation that my mother remembers such things. The visits really are for me.
The visit this month was on my own as my sister and brother in law were out of town for the weekend. By nature these make for even shorter visits - at least when I am there with my sister we just have a conversation between ourselves and my mother listens in, occasional perking up if my sister mentions anything about teaching, her career for almost 40 years.
My mother mostly sits in the main large room now along with all the other residents, either on couches or in chairs, covered with blankets as it is Winter. Some times we will just sit down on the couch and visit as it seems less disruptive than getting her up and out to the front to visit. Today was no different; I thought - thought - I recognized her from the back as I came in.
It was jarring to me to see her this month: her hair is longer this month as it was last month (she has not worn her hair this long in 60 years or more) but she looked far more frail than I have seen in recent months. Part of this is not a surprise: my sister had said the staff had noted she has been eating less and less and my sister had been buying protein drinks for her. Still, I had not expected this much of a change in a month.
Her attention was off to her left, looking at something that was either on a shelf or a person in a chair. My attempts to engage her in conversation were fruitless; by far this was the least communicative she has been. I could not even engage her enough to get her to turn and look at me. I tried a couple of different tracks - weather and the fact Thanksgiving is coming up - and when neither of those were successful, I said my goodbyes and retired back to parking lot.
The entire visit was less than five minutes.
It is not as if any of this is unexpected: this is the course of the disease. But reading on the course of the disease is one thing; seeing it openly and actively played out is something else entirely. In some portion of my brain, there is the vain hope that at some level there is still something of my mother that will respond when we come to visit, even if it is a small thing The reality is that such things seem simply hopes at that: vague good wishes that have no ability to manifest themselves. For all of my wishing - my hoping - that things will be otherwise, it is simply not so.
I will continue my visits so long as my mother is there to receive them. What I likely have to let go of is the sense that there will be any visible sense of recognition, or perhaps even interest. In either case I need to respect how she is when I arrive, even if I do not react to.
Time enough for such thoughts on the long drive home.
"But reading on the course of the disease is one thing; seeing it openly and actively played out is something else entirely."
ReplyDeleteMy wife visits her mother every week and even though her mother recognizes my wife by name, there is no meaningful conversation and the time when there is recognition will end.
We are simply marking time until the inevitable occurs.
There may be some medical breakthrough in the future, but that future is not today.
John, sadly I think we are well beyond the point of recognition (no matter how much I hope for it).
DeleteI have to be honest that the medical progress to date is not much to inspire confidence - not from lack of trying, but simply a lack of making progress. I will say this has certainly changed some of my views on the benefits of having great physical health which just prolongs mental decline.
The results aren't what you'd like when you visit TB, but you are visiting. When my Mom was in the nursing home for the last eight months of her life my Dad and I would visit her six days out of seven, a short drive and we stayed for hours. She shared a room with another woman and I only saw her son maybe twice during that time. Now maybe he visited on the day we weren't there but........... It's good that you and your sister and BIL are seeing your Mother despite the cost.
ReplyDeleteNylon12, there is a practical side to this as well: it does help us to keep track of my mother's physical condition (we have never had a problem with where she lives, but one hears issues at other places). And in some way, perhaps something of my mother knows that we are there.
DeleteThis visit leads me to think - rightly or wrongly - we are entering the end game.
Doing the right thing is usually the hardest course of action. But your choice to visit her I think is proof you and your sisster are in it for the long haul. I hope you get a better result next time.
ReplyDeleteThanks, Anon. I will say that in times past, this has been a visit by visit event. Sometimes the next visit is very responsive (we had a really good one in July when the family came out with me). I have to look at the overall course of the visits, not just this one.
DeleteSomewhere along the way, I've read that sometimes even those in comas remember those who visited and what was said after they awake from their coma. So perhaps the same is true with dementia even though, as far as I'm aware, there is no coming back from that.
ReplyDeleteWhen I was visiting with family members during their final days when they weren't responsive, I often take a book to read, hoping just my presence there is something that can be felt.
Ed, the last year and a half of my maternal grandmother's life, she was in a coma. My mother went down every day with my grandfather to see her. She would swear my grandmother respond with hand tightening in response to questions, even if she could not speak and was not conscious.
DeleteThe book is a good idea. The atmosphere is a little chaotic for that now, but I should probably always take one in.
On what turned out to be my last visit with my dad, my husband, my sister, my son, and I sat with him out on the porch of the facility. He was awake when the aides helped him outside and when they helped him back inside, otherwise he snoozed. We all chatted as he slept. Periodically, he seemed to rouse, and we'd see a slight smile before he drifted back into a deeper sleep. We believe on some level he heard the voices of his loved ones and was comforted. (Or we were comforted ;-)
ReplyDeleteSbrgirl, that is one reason I continue to try and make sure I visit: I never know when the last visit will come. With my father, I was out to see him in June; he passed three days before my trip in July was supposed to happen. One hopes, as you say, that on some level these visits provide comfort - certainly to ourselves, if not those visited consciously.
DeleteReading yours and everyone's stories in the comments, it's hard not to feel sad. Yet to still reach out and care, even when there is no response of recognition, is human compassion at its best. Sowing seeds of kindness is never a fruitless act, whether we realize it at the time or not.
ReplyDeleteLeigh, it is really is probably a lot more for those visiting and what it does to them than the potential recognition that may come.
DeleteAre you interested in elaborating on this, TB?: "I will say this has certainly changed some of my views on the benefits of having great physical health which just prolongs mental decline." Don't feel like you have to elaborate, but it caught my attention - recently having health issues I never really imagined having. In addition to hope, I'm also possibly looking for silver linings...
ReplyDeleteLet me say, I'm really asking for clarity. My first reading is that you're treating these attributes (physical health and mental decline) as going together. My second reading makes me think you're treating them as mutually exclusive. On my third reading, I've decided I'm just confused. lol
DeleteBecki - No worries! I sometimes confuse myself.
DeleteI think what I am saying is that excellent physical health is not necessarily the end all and be all of our lives. It is important; terribly important and we (I, at least) should do all that I can to improve and enhance it. At the same time, my mother's health (really up to the last year) has been relatively good and yet she has not had full use of her faculties for the last 8 years. Her health was preserved; her mind was not. If that is the case, is there truly a benefit in living a longer life (as opposed, say, to someone that has a heart attack at 50 and dies "young", but in full control of themselves and their minds up to that point?
I do not have answers. And maybe the correct lesson is "Do what you can, but live every day to the fullest". But I am sure there are many people denying themselves or exercising in hopes of long and happy twilight years, only to find those hopes dashed by circumstances outside of their control.
Thank you for elaborating, TB. I understand you now. While I think it's important to try to take care of our health, I will say with recent health issues that blindsided me (though part of me thinks they shouldn't have), I am just now coming to grips with how little is in my control to steer myself into happy/content aging. I'm going to try to be healthy(ier), but at the end of the day, much is out of my control.
DeleteYou are in a hard stage on various levels, but with losing your father, and your mother's decline, well... these things make us face uncomfortable questions and issues. While you're probably around 20 years younger than me, I appreciate "listening in" on your thoughts on these kinds of topics. It's both validating of my own thoughts (of younger me and the present me), and gives me compassion for your journey.
You are welcome, Becki.
DeleteI think that what you say is part of it: the realization that much is out of our control and yet we think more of it is. And having to confront the reality versus what we like to believe the reality should be.
(If helpful, I am probably not quite 20 years younger than you, if I figure correctly).
Your thoughts are helpful to me as well. What you are going through now is not a particular thing I have experienced, but I have had plenty of friends and acquaintances that have. Most are unable to speak about what you have been able to speak of - understandable, as it is both deeply personal and undoubtedly painful at some level. Thank you for your transparency.