“I wish I would just die. I’ve had enough.”
Not the words I wanted to hear from my mother. She’s been in her nursing home for four months, and her life has been completely turned upside down. Within two months of arrival, her husband of 52 years would pass away, leaving her alone and in unfamiliar surroundings for the first time in her entire life. With mid-stage Alzheimer’s disease, she has a lot of trouble remembering recent events, or at least remembering them accurately. She doesn’t remember being with my dad when he died (she was); she thinks her parents put her in the nursing home because she had a bad fall (they, of course didn’t, though she did have a bad fall).
There was a mad scramble to get my parents placed while my mother was in rehab for a badly broken ankle. We felt that moving her from rehab straight to the facility would be easier than trying to convince her to leave the house she shared with my dad for the past 50 years, where they raised their four kids. It felt a little like a dirty trick, but also as if we had no choice. We found a place where they could be together, though they required very different care. My father was not mobile and needed help with basic care like eating and toileting. My mother, once her ankle healed, could handle all those things on her own. Even though it was exorbitantly expensive for the level of care she required, we felt it was worth it to keep them together. But once he was gone, it felt like the wrong place for her in many ways. At least it does for two of the four of us, her children.
I’ve already discussed the family dynamic we’re dealing with. At this stage of the game, we’re not even speaking, and disagreeing with each other has become the default response. But as the negative incidences with my mother’s care keep piling up, I feel like we must find a way to work together to see that she is cared for properly.
Eldercare is not one-size-fits-all. A skilled nursing facility (often found inside a nursing home) is a perfect place for someone like my father was: seniors who are unable to care for themselves on their own. My father had severe mobility issues and loss of coordination in his arms and hands as a result of multiple strokes. They will provide a senior like this with the necessary daily care. For a person with dementia who does not need this level of help, this care is unnecessary (though help in coaxing a person with dementia to engage in personal hygiene is provided).
Nursing homes also provide social activities for those who can participate, but they’re not led by trained dementia specialists. They’re not designed to act as therapy for those with memory decline, the way they are in a memory care facility.
While most nursing homes provide the level of security needed to keep a person with dementia from wandering or getting outside unattended, they are not designed, as memory care facilities are, to familiarize patients with their surroundings, minimizing their anxiety around being in a new place.
In a nursing home, residents can have a shared or private room with access to communal spaces for dining and gathering. In a memory care facility, these spaces are often more intimate, which is comforting and calming for a person with cognitive decline.
We were assured that the nursing home where my mother resides included memory care. But when pressed, “memory care” at this specific place meant a building from which a person with dementia could not escape (nursing homes have more wiggle room when it comes to memory care rules and regulation, and there is a broad range in the level of memory care provided).
The fact of the matter is you only know what you know. If you’re not told or you don’t do your own research, it’s hard to know the difference. But a big difference there is.
I’ve learned so much about dementia in real-time. My mother’s seemingly strange, combative, or gross behaviors are quite common for people with her disease. The more I learn, the more I see the necessity of getting her into the right kind of treatment facility.
I’m not mad about the decision we made four months ago. It was a crisis situation, and we felt the place was the best option for my dad. I’m so grateful to my siblings for finding a place that would take them on such short notice. But the situation has changed and so should our plan of action.
No one deserves to live out the end of their life in fear and anxiety, with caregivers who are not trained to deal with them. It’s so important to make sure your senior is receiving the appropriate type of care from properly trained providers.
Deciding to place your parents into a residential care facility is hard enough. Worrying that it’s the right fit for your particular senior is even scarier. Luckily, there are a lot of resources to help you educate yourself.
A Place for Mom offers expert advice on choosing the right care for your senior. They also have a treasure trove of resources with articles, information regarding how assisted living, skilled nursing care, and memory care facilities are regulated, what sort of training they’re required to give, and information on violations and complaints about specific facilities (to really do some due diligence before placing your senior). They can also set you up with an advisor, free of charge, who can really lead you in the right direction.
Of course, I always extoll the virtues of AARP, an organization that I love and rely on heavily for all sorts of useful information. Joining is money well spent (I’ve signed up for auto-renew because I never want to be without it now)!
The Alzheimer’s Association is another excellent resource when you are dealing with a senior with cognitive function issues.
You can also turn to the Area Agency on Aging to get some specific information on care options in your area. And follow the links in this post for some places to start. What have you found helpful when making these decisions for your parents?
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