My work assignments these days are with two different families, one of which is dealing with a fairly advanced case of Alzheimer’s. The other family is dealing with extreme old age and dementia, but not Alzheimer’s.
The family that is dealing with the Alzheimer’s is an interesting mix. On the one hand, you couldn’t ask for more loving family members or people who have their relative’s best interests at heart. But, but, but. . . . What they don’t do is understand Alzheimer’s, or do anything to remedy that. They are totally and continually clueless. They’re involved in the daily life of their loved one, but do nothing to help them deal with her better. They ignore hints, don’t follow up on recommended resources, and don’t respond to notifications about specific situations or occurrences.
This almost obstinate lack of interest in the disease and how to deal with it makes their loved one’s life considerably more difficult than it has to be. They don’t know how to moderate their dealings with her, don’t know how to hold conversations with her, and don’t understand the cycles that she’s dealing with, and aren’t interested in learning any of those things.
So, I’m writing about it here. Not for them, but for anyone out there who reads this and who has direct or indirect dealings with someone dealing with this horrible disease.
The first thing to be aware of is that the person you used to know is no longer the same. You’d think that would be obvious, but unfortunately it isn’t. The skills have changed, the ability to follow a conversation has changed, and sometimes even the interests have changed. The changes vary according to the person and the progress of that person’s disease, but they’re there.
For example, this particular client is so far advanced that she can’t follow even simple directions. If you tell her to wash her forehead, she washes her forehead. If you tell her to wash her chin, she washes her forehead. If you tell her to wash her arms or to wash her legs, she washes her forehead.
In her working life, she dealt extensively with real estate and was quite a success with it. A granddaughter visited the other day and told her grandmother that she knew just the right game for them to play--Monopoly, because it dealt with real estate. There’s no way on earth she could even begin to play Monopoly Junior, let alone Monopoly. She can’t figure out how to wash her chin, let alone figure out whether or not she should pass GO.
At a family function, this client was asking her other granddaughter where she worked. The granddaughter smiled at her and said, “the same place.” The client asked again, “but where do you work?” The granddaughter smiled again and said, “my job hasn’t changed.” The client asked yet again, “honey, where do you work,” and the granddaughter, smiling determinedly, said, “I have the same job I’ve had.”
It was a bizarre exchange. The granddaughter could not have been more difficult for her grandmother to deal with; it was almost as though she were spitefully refusing to answer the question. She knew her grandmother had dementia, knew dementia involved forgetting things, but she couldn’t be bothered to answer the damned question.
When answering a question from someone with Alzheimer’s, just assume they mean the question, that they truly don’t know the answer to it. And then just answer it! Answer it like you would with a question from a three-year-old, directly, with a smile, and with no extraneous information. Extraneous information could be confusing. If the person has more questions, they’ll ask. That granddaughter should have just said, “I work at such-and-such.” Easy, peasy, lemon squeezy, as the Geico gecko says.
Another family member talks at a rapid rate. She shoots questions at my client so fast, the client doesn’t have time to understand the first question before seventeen others have flown by. This causes the client to be confused and then frustrated, and ultimately angry. And it’s totally unnecessary. Just ask a question, and then wait for the answer. It’s not rocket science.
Something else that changes is the ability to deal with multiple people or busy social situations. It can be too hard to follow more than one conversation or to deal with different people moving around. That also leads to confusion, and then frustration, and finally angry. And it’s avoidable. Small groups, calm situations, and short timeframes solve the problem. If the person used to love big family gatherings, replace them with smaller family gatherings. So what if that means the entire family can’t get together with their loved one all at once; they can gather as a large group in other situations. If the Alzheimer sufferer used to love to shop all day, plan short shopping trips and incorporate frequent bathroom breaks.
This family is active in their church and faith is an important part of this client’s life. But, again, she is uncomfortable in the louder, more crowded, more modern services the rest of the family enjoys. They know this, she’s told them and told the pastor this, but they ignore it and take her to the services that are so uncomfortable for her. Another problem that should be a non-issue. There’s a church right down the road that is of the denomination that this woman grew up in, a smaller church that offers a traditional service every Sunday. Taking the woman to one of those services would be a kindness, would be so reassuring and comforting to her, but they won’t do it. They love her but, if she wants to go to services, it has to be with them. (I don’t work with her on Sundays or I’d have her at the other church in a heartbeat.)
It’s all difficult for me to deal with. I have such a good time with this client, but when her family is around, I’m continually biting my tongue. At least I can vent some here.