‘Dementia brings it all back together’: two new books offer emotional (and practical) advice to caregivers

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My mom and stepmom never had much in common. Indeed, my relationship with the two has been very different. Yet somehow they now find themselves in almost identical situations: deeply withdrawn into the dark and frightening worlds of their own respective dementias.

In a relatively short period of time, I saw them both transform into almost unrecognizable versions of their old selves. It is not a smooth or peaceful experience. As I watch these joint seizures, there are a lot of things I didn’t know – or even never thought about – before I had to. Yes, there are emotional things, grief before grief. But also practical things, things like “Don’t you remember how to brush your teeth?”.

The Alzheimer’s Association believes that more than 11 million Americans care for someone with Alzheimer’s disease or dementia. It can be an incredibly lonely, overwhelming, and confusing experience. So I got help.

I’ve read a lot on this topic, and the two best books in the genre came out both last month. Andrew E. Budson and Maureen K. O’Connor’s “Six Steps to Managing Alzheimer’s Disease and Dementia: A Guide for Families” offers practical and refreshing information to help you – and you – along the way. And author “Floating in the Deep End” by Patti Davis is a candid, non-judgmental account of how she overcame her father Ronald Reagan’s illness and the wisdom she gained through her experience and her support group, Beyond Alzheimer’s. Both books left me with tears in my eyes of gratitude and gratitude, reinforced by acceptance and permission to let go of unconstructive guilt. I can’t say enough about how both informative and comforting at the same time.

Dealing with this absolute bastard of a condition must begin, first and foremost, by questioning the stigma of our individualistic, youth-oriented culture.

“As a society we have to work on normalizing the conversation as people get older, about the fact that at some point everyone will need help running some of their business, which we were talking about. help with their finances, help make sure medications are administered correctly, or help with things like bathing and grooming, ”says Andrew E. Budson, head of cognitive and behavioral neurology at the Veterans Affairs Boston Healthcare System. Everyone will need help at some point in their life with these things, and I think we need to feel comfortable bringing these topics up. “

Meanwhile, in our more immediate day-to-day relationships, we all need to learn to recognize the signs of Alzheimer’s disease and dementia, especially in these times of accelerated isolation. “Anyone can be halfway through telling a good friend a story and say, ‘Oh my God, I told you that before, didn’t I? Budson said. That’s a pretty good red flag. ”

Budson adds that another red flag is “if the person has a lot more problems than they normally would doing the same types of tasks.”

These kinds of symptoms may seem well known, but there are others which are more devious, which disguise themselves as something else.

“We see a lot of patients in our clinic who have just been told, ‘Mrs Jones, you just have depression,’” says Budson. “The point is, Ms. Jones is really depressed, but Ms. Jones is depressed because, number one, she’s terrified of developing Alzheimer’s disease. Second, the actual disease process of Alzheimer’s disease affects neurotransmitters in the brain that lead to depression. So Mrs. Jones suffers from depression, but it’s not that depression causes Alzheimer’s disease, it’s really the other way around. And when you find out that your loved one doesn’t It’s not just forgetful or sad, as Patti Davis writes in her book, Hang on.

“It’s scary,” Davis said on a recent early morning phone call from his home in California. “It’s scary to go through grief. It’s scary to give in to it, and we don’t want to. So we find all kinds of ways to avoid it.” Davis understands that paradoxically, it is this fear that can cause us – as adult children, spouses and friends – to take on too much, to avoid getting the help we need. But the management of care is not a simple case of family reciprocity. Rather, it is, as Davis puts it in his book, more like “protecting children on steroids”.

“Right off the bat, you have to point out the absurdity of comparing a parent caring for a child to an adult caring for an 85-year-old. It’s not the same thing,” says Davis. . She cites, for example, how “this generally arises around the question of the bath”. This is exactly the sort of thing that you cannot fully grasp until one day your spouse uses the word “heartbreaking” to describe the ordeal of giving a mother a bath.

Davis says, “While I understand that there are situations where there is no choice, often there is a choice. This is where people usually turn for some sort of defensive reason, like, “Well, she bathed me when I was a kid.” Bathing a child is a completely different thing than bathing an elderly person, especially your parent. First of all, the simple act of dealing with your parents’ naked bodies is emotionally charged, regardless of your relationship with them. emotional resources. That’s actually why I think people do it, because instinctively we know that if we use all of our emotions on something like this, we won’t have enough to take care of our own grief. “

“We are very smart at running from grief,” she said. “I heard it in general care issues -” They took care of me when I was a kid, so I have to sacrifice my whole life to take care of them. “There are situations where it is just inevitable. There is no money, there is no opportunity, no financial room for someone to help you. I understand that, but sometimes there are respite services. So I think usually it’s something else that plays out there. “

In her book, Davis advocates for a sense of humor and compassionately writes about the challenges of removing a parent’s car keys and finding that “lying is your friend” when “the truth is wrong. be soothing ”. Budson agrees.


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“It is not useful to continually tell your loved one that he has Alzheimer’s disease or that he suffers from dementia. It is not useful to discuss with him if he has a false memory or is he’s hallucinating, ”he says. “We generally want to react the same way we have always done for thirty years, maybe sixty years. When a form of dementia really hits, caregivers simply cannot use the same approach, the same language, the same tone otherwise would have.

It’s deep and deep work for all parties here, to learn a new way of communicating.

“We wanted to try and help people understand on an emotional level,” says Budson, “that you really have to have a different mindset. You cannot continue to see the person as your mother in the exact same way you did before. , or think of the person as your spouse in exactly the same way you used to. This is difficult because it can be frustrating for someone if they ask you the same question thirty times in two hours. This is especially difficult when, in order to respond to one in a different way, you have to emotionally realize that the person who has been your partner, or someone you have admired for many years, is just not the same. person than before. “

It also requires honestly looking at what that past relationship was like and recognizing the complicated dynamics that will always come into play as you manage care. As Davis says, “The problem with Alzheimer’s disease or any type of dementia is that it sounds like everything. It lifts everything in families. It lifts everything in you, the things that you thought you had solved in therapy ten years ago. Guess what “Maybe not completely, because they’re here again. One of the most powerful lessons this disease taught me was to grow up and be an adult and accept that my family was what it was and then said, “Okay, now where do I go from here?”

Acceptance is tough. But a new relationship is not the same as a non-existent relationship. A person with a cognitive problem is still a human being, and there may still be unexpected experiences of connection to be found. The last conversation I had with my mom was probably the sweetest we’ve had in decades. It reminded me of the interview I had last year with “On Vanishing” author Lynn Casteel Harper, who said optimistically, “I think a smoother world is possible.”

“If you sit there with a ‘That person is no longer there’ attitude, you’re going to miss these really precious moments and these very enlightening moments,” said Patti Davis. “I always feel like I don’t say that because then it will become your reality and you are going to miss out on what you can learn from this disease and how you can get out of it. You are not going to be there for them. way they need you to be there for them, because you’ve just decided they’re not there. ” Instead, “you have to be really on the alert,” she said, “for those times when there is some clarity and there is an opening, a little opening that you can see through the disease. – and beyond illness. “

As difficult as it may be to look at the older women in my life and not fear my own future, Alzheimer’s disease and dementia are not inevitable. Science is still studying the root causes and potential treatments.

“It’s a huge misconception that a lot of people think that’s exactly what’s going on,” Budson says. “We now recognize that people can live healthy lives with very good cognition – maybe not as good as when they were in their middle age – but with very good cognition until they are 80 or 90 years old. Most of the time when people have significant problems with thinking and memory it is because some type of disease process, sometimes reversible, sometimes not, has occurred. “

I always discover new things every day with my mom and stepmom, always looking for moments of grace when they appear, and I let go a lot. “One of my mantras has become ‘I don’t know’,” says Davis. “I don’t know what my dad will be like today when I visit him. I don’t know what’s going to happen tomorrow. I don’t know what is going to happen next week. We like to plan things and things. the world likes to be in control, but I think I have that open mind to recognize that this disease is under control. You have to plan ahead. No idea. ‘”


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