Welcome to the Misadventures of Widowhood blog!

Welcome to my World---Woman, widow. senior citizen seeking to live out my days with a sense of whimsy as I search for inner peace and friendships. Jeez, that sounds like a profile on a dating app and I have zero interest in them, having lost my soul mate of 42 years. Life was good until it wasn't when my husband had a massive stroke and I spent the next 12 1/2 years as his caregiver. This blog has documented the pain and heartache of loss, my dark humor, my sweetest memories and, yes, even my pity parties and finally, moving past it all. And now I’m ready for a new start, in a new location---a continuum care campus in West Michigan, U.S.A. Some people say I have a quirky sense of humor that shows up from time to time in this blog. Others say I make some keen observations about life and growing older. (Just remember I'm looking through my prism which may or may not be the full story.) Stick around, read a while. I'm sure we'll have things in common. Your comments are welcome and encouraged. Let's get a dialogue going! Jean

Wednesday, December 7, 2022

The Dementia Diagnosis


One of my frequent dinner partners here at the continuum care campus is an 80 year old I nicknamed Ms. Social Worker who you may or may not remember had a series of falls a few months ago that, rumor had it, was due to a misuse of an opium-based pain medication. After her seventh fall, a long hospital stay and the addition of a walker in her life, she’s no longer falling but at dinner last night she told me she finally has a diagnosis of what’s going on with her: Dementia. She said a scan of her brain showed “masses of white spots, more than most people have at her age” and that she's been noticing symptoms for six months.

What do you say to someone who tells you that and then starts talking about going to a state where they have assisted suicide? “I wouldn’t mind dying of cancer, a stroke or a heart attack," she said, “but I don’t want to die of dementia.” I asked her if the doctor talked to her about medications that can slow down the progress of dementia---I know they have a few because my dad was in a trial for Aricept that was eventually brought to market and there have been newer ones developed since then. She said he didn’t but she has another appointment with a neurologist and her daughter is flying in to go with her. I told her to try not to panic or do anything rash because she’s probably got a few years before she wouldn’t be able to manage on her own. Knowledge is power, I told her. She’s still got time to build some good memories with her family. I didn't tell her I'm against legalized assisted suicide. (Ya, I know from past posts that some of you reading this take the opposite side. No need to debate this issue here again.)

When she was hospitalized her kids came to her apartment and took all the drugs out that they didn’t want her taking anymore including prescription sleeping pills and the opium based pain pills and thank goodness for that because the way she was talking at dinner I’d be worried she’d engineer her own death before Christmas. I don’t suppose any of us knows how we’d react to learning we had dementia but I’m pretty sure my first priority would not be how can I off myself. I’d hope I’d still remember the pleating words of Dylan Thomas to his dying father----

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

That said, I’ve been going to the dementia education group meetings here on campus since my brother moved into the Memory Care building. Last week a new-on-campus couple attended and the woman has dementia and it turned into a support group more than a lecture. The guy in the couple did a lot of talking and as he shared his history of dealing with his wife’s prognosis I recognized myself in his almost manic wanting to do everything possible to hold on to his old wife, going from one kind of therapy to another. He talked so much FOR HER that the Director of Dementia Programs at one point asked her specifically how she felt about having dementia. It took her forever to form her words while the director gave non-verbal ques to her husband not to speak. Finally she answered that she felt like she was just waiting to die, that nothing mattered anymore.

The couple reminded me of a come-to-Jesus moment I had with my husband around 5-6 years our from his stroke that left him right side paralyzed and with a 25 word vocabulary. I had spent those years fighting to get him into every physical and speech therapy I could including swimming pool work but nothing really brought improvements in him. So I asked him if he wanted to stop therapies and he did. We got off the merry-go-round after that and just tried to live as normal of a life as we could.

The director said to the woman, “We have a support group just for you---no spouses or kids allowed---where you can talk with others going through the same thing. I think it would help you.” All the time the director was taking to her she looked directly at the woman, never gave her husband a glance. Leading up to this one-on-one exchange it was easy to see that the husband was so used to speaking for her that she had penned up frustration. I remembered that look in my husband’s eyes. With his speech issues he was frustrated a lot. At the dementia lecture before this one they highlighted how important it is to look dementia patients in the eye so now I have two people to practice that strategy on when we talk---Ms. Social Worker and my brother. This is not something that is normally in my wheelhouse.

Since my brother moved into the next building where Memory Care patients live, people here in independent living have asked me about what it’s like over there. And I tell them honestly that visiting the place takes the fear out of the possibility that I might have to move there someday, that I see compassionate caregivers and an attempt to offer the residents stimulating activities---they even took them downtown to the museum last week to see a Walt Disney exhibit last week and this week our bus is taking them to sculpture garden to see Christmas trees from around the world! 

I see other things, too, like a woman who picks up objects in one person’s room and leaves them off in other resident’s rooms and how little real privacy they have over there. But I don't tell the people living here in Independent those kinds of things because at our ages most of us already know what goes on behind the public face of places that house dementia and Alzheimer's patients. The fear of dementia is, in part, based on its ability to rob us of our dignity and if a little sugarcoating helps lessen that fear then call me a confectioner.  ©

49 comments:

  1. As a caregiver for someone with dementia, I can so identify with these situations. We're in the process of finding an assisted living place back down in San Diego where we still have family and friends. The places I've been looking at both have memory care units, so we're good for the future. Thanks for this... greatly appreciate the insight on such a terrible disease.

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    1. I don't know that I have insight, but I feel like I need to learn as much as I can to better help my nieces, I'm banking it forward to get back when I might need their help if I end up with dementia. Best of luck in finding a good fit for you. Being closer to family will, hopefully, make as much difference to you has it has for me.

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    2. Just a follow-up -- we found a place to live yesterday. I'll be putting money down on it today--it's a Continuing Care Complex (hooray!) I am blessed. It is a new place and they're currently building their memory care building. Until it's finished, my husband will get to live with me in our one bedroom apartment. Blessings to you for writing here. I've followed with great interest!

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    3. It's a big decision. I hope it works out for you as good as it for me. I think half the battle on the front is just making up your mind to make the best of it.

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  2. Just letting you know that dementia of any type is not a legal reason for physician assisted suicide in any state in the US.

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    1. I did not know that! I will let my friend figure that out on her own, though. If she learns that now she might take things in her own hands. She needs time to come to term with the diagnosis. Thank you! This topic comes up every once in a while around here (in a group setting) so I'll have something new to throw on the table.

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    2. Here's a recent article I found on the topic: https://www.farrlawfirm.com/alzheimers/should-people-with-dementia-be-able-to-die-with-dignity/

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    3. Amy Bloom's excellent memoir, "In Love", details the lengths her husband went to find a place that allowed him this after his AZ diagnosis. And she ended up (reluctantly) agreeing to help him, because he really couldn't do it himself by the time it happened. They ended up in Switzerland, and if I remember correctly, they were worried he wouldn't be cogent enough to agree to it.

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    4. The fact that once one has a diagnosis of any kind of dementia it rules out assisted suicide is really the crux of the matter. I understand what your neighbor means that she could handle dying of cancer but that she would want to be in control if it's dementia. I feel the same way. I have all the details about going to Switzerland, should I ever need it. And I have a kind of half-baked idea about reluctantly handling it myself if it ever
      comes to that. But I do not think that our government has any right to voice their opinion in the matter.
      Nina

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  3. Most of us know of people who have dementia or a similar diagnosis. It takes an incredible toll on the individual but maybe even more of a toll on the caregivers. I doubt anyone can imagine unless you've experienced it. The good thing is that we can learn from one another. Jean, I appreciate how you have shared your experiences in helping Don during his difficult, final years. I think you're right about most of us being fearful of dementia, but information and a good network of friends/caregivers can quell much of it.

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    1. My brother's second wife had Alzheimer's fairly young in life but she didn't want anyone to know it for the longest time which I wouldn't recommend anyone doing. For several years we thought my brother was mad at us because they never wanted to get together. I sure don't recommend anyone doing that. The caregiver REALLY needs moral and concert support. I can't imagine how hard that was on him, not to be able to share.

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    2. Oh my gosh, that had to be awful for your brother and your family. Had I been in his shoes, I'm afraid I wouldn't have been able to keep that promise.

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  4. As I've said before, I live in fear of such a diagnosis. My brain/intellect is my prized possession. Watching my own mother decline due to Alzheimer's and dementia is not what I want for me and my loved ones.

    There is a fine line between recognizing the autonomy of an Alzheimer patient and allowing them to become overwhelmed. Sometimes, my mother processes so slowly that she gets lost along the way. Decisions are often impossible for her. The pressure is magnified. We still try, but now, not as often. It's a sad and terrible thing to watch.

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    1. Alzheimer's is a cruel disease. So sorry about your mother.

      I worry about the slippery slope of assisted suicide and elderly people being pressured into it. There's also a difference between withholding life sustaining treatments and assisted suicide.

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    2. I agree with you completely on that concern, Jean.

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  5. I was pleased when I heard NY might be legalizing assisted suicide. Rick and I have talked about Portland and Switzerland before, but more in abstract terms, versus anything specific. It's tough knowing how much, how long to fight and probably we don't know till it is ourselves or watching the pain of a loved one in that situation. I remember my dad saying (and not because of dementia but because of back issues) "I wish you could call Dr. Kevorkian." It was a bit of a shock but I understood. Fortunately, he died an hour before I had to make a decision of feeding tube or not (to do one would go against his wishes but it's darned hard to say, "no tube"). I said to him (in his coma) "Look, here's the deal -- you have to give me a sign as to what you really want, not just what you said you wanted back when you felt OK" -- and so he did -- he died. Thankfully, because he wouldn't have recovered well. I'm glad they now have the memory care facilities and I hope they are all as good as what you describe. Rick worries about that, given his plethora of head injuries from his cycling and racing years. It's comforting to know that people are being treated well and with dignity.

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    1. I had to make the same decision earlier this year (hospital for fluids vs no.) I knew what mom wanted but having to say no was one of the hardest things ever! Mom had dementia as well, so I've done a deep dive into books on brain health. Nearly everyone exhibits "tangles" in their brain as they age, but amazingly, many people don't actually develop dementia. Sadly though, way more study needs to be done to actually find out how to prevent brain deterioration from becoming dementia. The bottom line is medical science isn't nearly as advanced in brain health as it should be in 2022. So much research still to be accomplished...

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    2. Nothing is easy when a loved one dies. I'm glad you got the 'sign' and your dad was able to pick his own time to go.

      Our Memory Care had won state awards for their treatment plans. Some nursing home just warehouse people but Memory Care is different because they offer structure to help people hold on to whatever they can and special training for their aids on how to deal with people with memory loss.

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    3. Bobi - I've had to make that decision for my husband and can identify with how hard it was. They are doing a lot of research from the DNA angle trying to identify who will likely get Alzheimer's but nothing they find will help our generation. This is off topic from dementia but I once asked my husband's neurologist what happens to a person who is left handed and dyslexic hen we have a stroke because our brains already got tangles since birth. He said there has been no studies of that kind because it effects such a small part of the population.

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  6. You are so right, Jean. Information IS power. Look the bogeyman straight in the face before taking action. I hope I never end up with a dementia diagnosis, but if I do I hope I’ll be able to explore all my options and come up with a plan for dealing with it as best as one can.

    Deb

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    1. That's the way I've faced everything in life, too. I suspect that most people react to end of life diagnosis and illness the same way they'd lived their lives all along. Denial, bury your head in the sand, give up without a fight, take it out on the others around you, be mean to those trying to help, etc., etc.

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    2. I've seen that more than once and it's always so sad to watch.

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  7. There are dementia-specific advance directives available now which you can fill out before you have dementia and which might help the family.

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    1. Did not know that! Won't help with my brother as he's already been diagnosed but others reading this might be as behind times on this issue as I was.

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  8. well you know how i feel about all this. It's all so sad. I did see a new drug yesterday that can slow down the progression by 20%. Not wonderful but better than nothing to me. But I will be the person you don't understand. This is not how I wish to live so I wont. I'd have to move to VT or WA or a state that can help me if it should come to this. I pray it doesn't.

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    1. Did you read a comment up above that a diagnosis of dementia or Alzheimer's alone doesn't qualify for assisted suicide. I answered with a link from a law firm.

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    2. no i didn't see that but I know someone who did this in a state where it was legal. She made the arrangements when she had some clarity. So that is a head scratcher. In fact I saw another woman on 60 minutes who chose this route. So I am not sure about this either way. Hmm....

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    3. I would never do it but if I did I'd want legal opinions so that your spouse doesn't end up in trouble with the law for helping set it up.

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  9. Dementia sucks and watching a love one go through it is hard, I often find it hard to find the words I want to say and it is so frustrating

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    1. Lots of us here struggle with our words. We joke that it takes a village to have a conversation.

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  10. I can't help but believe that we are on the brink of a breakthrough regarding dementia. I would tend to hang on till I no longer knew what I was hanging on for.

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  11. Mom died of dementia complications and it was a torment to her. Dad's Body gave out and not his Brain...it was a more peaceful exit from this realm... Bohemian Dawn

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  12. Honestly, most of the people I have known with dementia are most upset upon diagnosis (obviously) but once their disease progresses, they get to the point of not being all that unhappy. Some of them get agitated, and that's hard for everyone to deal with, and if they still recognize you, you may take the brunt of their frustration. It's just hard all around. But I find it hard to rationalize euthanasia for dementia even though as a country we haven't got the best setup for extended care unless the patient has money.

    My MIL had dementia and was always pleasant when we visited and just wanted to discuss her plans to go home when her mother came for her that night, which of her deceased relatives had been visiting, etc. Lots of confused conversation. I have training as a hospice volunteer (including AZ patients, etc.), so I didn't have a problem dealing with her. She had also always been a voracious reader and for quite a while, she had a book open, but we all knew it was just force of habit. Having a book open seemed to comfort her, and she thought she was reading until she fell asleep in the evening. The staff was really good to her and they make such a difference.

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  13. A little hard to comment, as I’m extremely in favor of assisted suicide, but I recognize it’s not for everyone. I also know that Alzheimers is not a legal reason in the states that allow it. You have to be terminal. For some reason, I don’t fear dementia, but I do a stroke. One that would leave me still mentally fit, but trapped in a body no longer working.
    I’m hoping in time the drugs for dementia will get better and people can be on their own at home with some checking in on.

    At least you are in a place where you can bump up to memory care, if necessary. Me personally, I’d rather be outta here for good at that point.

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    1. I'm more scared of a stroke too. I've seen up close how hard that would be for the stroke survivor and without a strong support system like my husband had in me, it would be awful! At least with dementia you wouldn't necessarily know if caregivers weren't treating you with respect or were taking advantage of you.

      I didn't mean to say commenters needed to keep their opinions to themselves if, like you, you believe in assisted suicide. I just didn't want to have defend my opposition to it.

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  14. At this point, thinking about what would happen to me should dementia set in is -- well, uncomfortable. With no family at all, and finances that are extremely limited, my options would be about zero. Of course, if I really went over the edge and didn't have a clue who I was or where I was, I guess the worrying would be over!

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    1. If we only had a crystal-ball. Best to just keep living in the moment as much as possible and take what comes.

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  15. After my Dad's Alzheimer's had progressed to when he needed care, we were lucky that he was calm with it. He was a quiet patient who would smile and not give anyone trouble. It was sad for us to see but he wasn't upset or in pain.

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    1. That was a blessing, wasn't it. Some Alzheimer's patients get mean and hard to handle.

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  16. I find this post sobering, but truthful in a way that needs to be said. I know that the fear of dementia hangs over all of us, but the ways in which each would handle the diagnosis vary. There are no easy answers to complex difficult questions.

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    1. I suppose there is a correlation between how we handle a dementia diagnosis and the way we've handled all difficult decisions in our lives.

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  17. B,J. From the Awkward Widow Blog wrote the following words but she also including her email address and to save her from getting a ton of spam and because I don't print other people's contact information I'm quoting her here instead of publishing of her common:

    "I live in Oregon and support Death with Dignity. Although I don't have room in this tiny home filled with lots of family, I can surely help find a reasonable place to stay and local doctors who will help."

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    1. From other posts I knew you thought on the topic but I never thought about how much physical room it would to actually do it. I've seen a movie of a person going to Switzerland, to a special place where the rich people go to get euthanized, so that's my only visualization to go by.

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  18. Jean :
    I have seen my dad developing alzeimer at very yung age & have seen him struggle through it, it was so hard to see him struggle through it & it was so hard to see dad in that condition & unable to help being myself as young college student so saw toll it took on mom who took care of him till end. I used to think I wouldn't mind assisted suicide if someone os suffering from dementia. Recently my mom at 80 suffered stroke & she is so upset angry & saying she does not want to live, please kill her. & I feel so helpless, I know she is strong woman & can fight back & it will be meaningful life now, but she is in no mood to hear any lectures she says lol. right now sje is plain angry at the world & upset.
    I even sent you email asking how do I comfort her, cause I am at loss & scared for her.
    Asha

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    1. It sounds like your dad had Early Onset Alzheimer's which is SO destructive to the family as well as the person with this awful disease. As a nation we need to do better with treatments and I do believe we are on the brink of new discoveries with gene research going on.

      As for your mom. I'm so sorry you are going through this with your mom. I don't recall getting an e-mail from you but my e-mail address has changed. I'll check my spam folder just in case. That said, you already know from your experience on the stroke support site that a person has to get through the angry stage before they can get to the acceptance needed to start rebuilding their lives with their new normal. You also know the dangers of getting stuck in the angry stage so you're walking a thin line trying to be supportive and pushing too hard before she's ready to do the work needed.

      Try not to be too hard on yourself for feeling at a loss for not knowing how to help. This is one of those trial and error situations because what works for one stroke survivor won't necessarily work for others. You do have one big clue though, because you know what kind of support she gave to you when you had yours. Did she use tough love? Did she use positive reinforcement for every baby step you took? A combination of both?

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