As a geriatric psychiatry nurse, my wife has a unique perspective on issues like aging, end-of-life care, and Alzheimers. According to her, the week after Thanksgiving is a mess. The geriatric wing gets a huge influx of patients, as well as family members concerned about the ability of their elder relative to continue living independently.
There may have been signs earlier in the year, but with shorter visits or phone calls, it's always hard to tell what's really going on. Is Mom confused or just distracted by the tv? Maybe she just didn't hear me correctly.
But when you're all together, cooking a meal, sometimes you get a clearer picture. Maybe Mom keeps asking the same few questions. Maybe you notice that she's getting more disoriented as the day progresses. Thanksgiving can be exhausting, but "sun-downing" (confusion arising in late afternoon/evening) is a leading symptom of cognitive decline.
Or maybe Mom's good with conversation, names, dates, and recipes, but some other areas are suffering. Maybe the house itself is starting to show signs. Lightbulbs aren't getting replaced, the floors aren't clean, dirty laundry is piling up, the mail isn't being sorted, and the pantry is bare.
Heck, maybe there are a pair of tennis shoes in the freezer (this one has actually happened).
It's a hard situation for the person experiencing this decline. No one wants to admit that they're losing their cognitive capacity, or that they need help taking care of themselves. In fact, this can make it harder for family members to realize what's going on. It can be sad, lonely, and confusing for everyone involved.
If this is something you're going through right now, I'm sorry. It's a really hard situation, and I don't have any good answers for you. I wish I did.
All I can suggest is to be as honest as you can be with yourself and your loved ones when it comes to this area. Share what you're noticing and feeling. Ask how they feel. Really listen, if you can. They might be more scared than you are. And remember, you don't need to jump to answers or problem-solving right away. With time, you might find you have more options than you think.
For instance, my own grandmother is legally blind and deaf. She managed to live with these conditions for a miraculously long time through pure determination and positivity. But, eventually, there were a few things she couldn't do for herself.
After my grandfather passed, my dad visited her every week to help out with grocery shopping, cooking, housework, and just to spend time with her. His siblings helped out a lot too, whether calling their mom daily to check in, helping her with bills and finances, or visiting on a separate day of the week.
This situation lasted for a long time, and allowed my grandmother to continue living in her house relatively independently.
Eventually, it became apparent that she needed someone with her 24/7, and so she got an in-home helper for a few months.
After that, she moved into an assisted care facility near my dad's brother, and he's done a good job of visiting her regularly, taking her out for lunch, and getting her to doctor's appointments. She's still there, and all the family members seem to think this is the best place for her at this point.
Of course, the path that's best for your family will depend on the circumstances and wishes of your loved one. There isn't one solution that's best for everybody. Just know that a person's need for help is more of a spectrum of care than it is a binary decision.
For those of you whose family members are still healthy and sharp, there are a couple things you can do to make life a lot easier for yourselves down the road.
First off, have a conversation. If and when your loved one loses the ability to take care of themselves, what would they like to have happen? What are various family members willing to do to help?
This conversation doesn't just have to be about loss of cognitive capacity.
Keeping this open-ended is okay. You might ask, "hey Dad, I'm glad to see you're doing well. If we were to look down the road a few years, is there a point at which you'd want to get some help around here? Suppose you didn't have the energy to handle all the cleaning and housework on your own, what would you want to do?"
"A couple other things, but I was thinking about if something happened where you had to go to the hospital, do you have any documents with instructions for what you want us to do, and what you would and wouldn't want doctors to do?" It's amazing how often the nurses and doctors at my wife's hospital get conflicting instructions from different family members. Son says "pull the plug, Dad said he didn't want to be on a feeding tube." Daughter says, "no, he's a fighter, and he told me he wanted to live!" Without clear, specific instructions, not only is the patient no longer receiving the form of care they want, their kids are fighting over it!
"Obviously, we'd prefer for you to stay independent as long as you want. But is there some point at which, even with help around the house and everything, where you'd want full time help with things?" Depending on their situation, full time help might mean round-the-clock helpers and healthcare workers, a live-in helper, or it might mean moving into an assisted living facility or nursing home. It depends on their financial and family circumstances.
Save yourself some agony and start these conversations sooner than later, while your parents and aging family members are clear-headed. It doesn't have to all get figured out over Thanksgiving dinner either. In fact, it's probably good to take a couple weeks to think things through. But ignoring this conversation isn't a strategy that ages well.
I wish all of you a Happy Thanksgiving! I hope you enjoy some time off with your family.
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