The struggle with acceptance and clarity about dementia's effects on our lives

fmb · December 2023

My conscious journey began this summer when DH had a "mild" stroke (affecting memory, swallowing and speech) in June. It took a neighbor and fellow stroke survivor to point out DH's other obvious deficits. He is 92 and I am 63 (yes, you read that right), and we have been together 21 years. After six hospitalizations in 4-1/2 months for the stroke, falls, BP med adjustments, A-fib, a clogged catheter, severe UTI, a devastating fall (broken ribs, internal bleeding) at an unsuitable personal care facility, and congestive heart failure stage 3, I have finally placed him in a quality AL facility and initiated hospice care 3-1/2 weeks ago. He is in step 6 of Alzheimer's. We had been working together as a team dealing with his memory deficits and minor falls for at least 7 years. I had attributed them to old age. He lived at home until October. His diagnosis hit me like a poleaxe between the eyes. I was truly the frog who was boiled slowly. I have lost nearly 20% of my bodyweight and was suffering from severe anxiety and depression from the intensive caregiving. I have recently started to come to acceptance of our situation. Right now my biggest struggle is the anticipatory grief. I am grieving the incremental loss of the man I love. He is failing quickly (mercifully). I am grieving the loss of my identity, my friends, my sense of control of my life, and at times, my sanity. Storycrafter, there is nothing wrong with you. I, too, am at the point where I no longer bother to explain because nobody truly listens or understands anyway. I want to thank everyone who commented on this thread. Your insightful comments have made me realize that I am not alone on this terrible, incredible journey.

AlzWife2023 · December 2023

The struggle with acceptance and clarity about dementia's effects on our lives

storycrafter

Nov 29, 2023

What do you think it's about - what makes it feel hard even while in the early phases of dementia when your spouse/partner can still take care of their ADLs and still communicate somewhat?
I need help finding words to describe or explain - what is this nebulous sense of enormous change in our lives? It feels seismic even after all these years. Is it my imagination running wild and it needs to be corraled?
I need help to verbalize what this experience is like, to make it real... for myself and others.
There's an imp, or perhaps it's a gargoyle, sitting on my shoulder asking repeatedly, What's your problem? Why is it hard for you to explain, even to the new primary care doctor you saw today for your own health, what is going on in our house that I struggle with chronic depression? We have so many blessings and things to be thankful for.
I'm also especially vulnerable to friends/acquaintances who say, "Oh he seems really good." (I know they mean well, but I can fall into the pit of questioning my own judgement; questioning maybe he just had a temporary nervous breakdown that's dragging on. How does one let go of the painful loneliness of feeling unheard and/or not understood. )
Or is it my perception that needs adjusting? Am I mis-reading the truth of the matter? Is there some character flaw getting in my way of seeing clearly what's happening to us? What are the realities?
Is it mostly my own attitude, and it needs changing? How does one find mental/emotional peace about it? How can one dwell in acceptance of what is?
Thank you for the chance to let it out here in a safe place.

I know exactly how you feel! It’s the absence of connection. It’s their growing apathy. It’s that they don’t make sense. It’s that you can’t rely on them. It’s that they think they’re OK. It’s that you have to do everything. & You have to constantly repeat yourself. & You have to constantly watch them for safety. & They don’t understand you.

It’s that they get mad at you so easily. It’s that you have to pretend around them. It’s that you have to humor them. It’s that they’re not there for you anymore.

AlzWife2023 · December 2023

Howaboutnow

Dec 2, 2023

Dear Storycrafter,
Thank you for sharing.
6+ years in, and I have no peace about dementia. But i do have acceptance—and that took a long while. For years before a diagnosis, i nervously watched for signs (DH Mother had dementia),,and DH’s diagnosis did come. I fought it. Thought there must be something i can do, can we avoid this?, can we get out of this somehow?…..it tore me apart. I hated it, what is was stealing from each of us, what i was becoming. I’ve come to realize, not overnight, that I’ve accepted it. I hate everything about dementia, but it is happening and it’s not going away. The only way I can get out is to walk through it to the end. I have faith i will.
The cruelty to the one carrying the disease is tremendous. The role for us, the painfully cognizant spouse/partner, is different but perhaps equal in that we are solely responsible for our LO’s care and writing their last chapter (while grieving the loss of our spouse and our own life). And no matter the help or no help we get,,,we largely do this in isolation.
Somehow, we learn to handle the unimaginable. And slowly the minutes/hours/days pass.
Does anyone not walking this themselves understand what our role and toll is? No. And that’s not an insult to those without dementia in their immediate lives. Should we try to enlighten our friends/family what living with dementia is like? (I tried and felt more alone than ever). It doesn’t change our experience, so i don’t try anymore.
This is a lonely disease. I am so thankful for everyone here. Because we share each other’s pain through our understanding and experience.
Hug to you ❤️

Incredibly perfect response. “The only way I can get out is to walk through it to the end. I have faith i will.” This is what I’m feeling too, at only 14 months in.

@storycrafter it doesn’t matter if other people understand. If you have friends and family who stay in touch just use their attention for yourself…go out, visit, chat about other things OR ask them for a day or half day of respite. Invite them to sit with your hubby. You don’t owe any explanation.

This has been the greatest thread I’ve read on this or any forum. I think we’ve cracked the code of honesty about what caregivers of spouses with dementia suffer.

Sending love to all of you!

Lgb35 · December 2023

My DH is still independent however the changes are obvious on a daily basis. DH has always been a workaholic and not good at expressing any type of emotion other than sarcasm. I am 53 and DH is 60. He has not accepted what is happening and does not want me to tell anyone what is going on. Of course this is not something we can go through alone. The main thing people say is yeah I forget things too that’s normal. Or they spend a short time with him and think he seems just fine. What they don’t realize is he has no idea what their name is or any real memories of how they know each other. He is very good at show timing and avoiding topics he doesn’t remember or if it gets confusing he stops talking and just listens. Our youngest son lives out of state and doesn’t notice anything when we visit for a week at a time. I did tell him on our most recent trip that his dad doesn’t remember our daughter in law or our 2 grandkids names. And the game he plays with our granddaughter that has animals on it that his dad has no idea what any of the animals are called it is basically a matching game. Other people can’t see what we see on a daily basis. This journey is as they say the long goodbye because we are losing our LO and the future we thought we had a little at a time. A fear of the unknown and what will be left for the survivor at the end. We begin the journey silently grieving and letting go as soon as we hear we are dealing with a neurodegenerative dementia.

Denise1847 · December 2023

Here is an interesting site to read about grief. It may help with the journey we are on. I personally find that I think I am through a certain stage like anger and on to acceptance when the next day I am raging inside at the pain, isolation and the ongoing struggles of the disease. Hope this helps.

Speaking Grief | There is no step-by-step process

l7pla1w2 · December 2023

I am so impressed with how articulate and thoughtful you all are, and I resonate with so many things that have been said. One of the things I realized with great sadness is that I went from having a partner to having a dependent. Over the years DW and I evolved into patterns of who does what and "how we do things." DW can only do some simple things now, and she doesn't remember how we do things. Example: Our town has curbside single stream recycling. (Everything in one bin.) DW can't keep straight the difference between trash and paper that is not trash.

Only someone who has experienced caretaking for a PWD can really know what we know. We were away for the summer a couple of years ago. When we got home, our across-the-street neighbor asked me, quietly, if DW was okay. I asked what she meant. She said DW seemed a little off. I had noticed changes over the summer, but the neighbor picked up on it right away. It turns out that her father had Alzheimer's, so she's very tuned in to the changes. Needless to say, she is very understanding as well as being a good sounding board.

DW didn't want me to tell anyone about her Alzheimer's diagnosis. For that matter, she refused to believe it herself, saying the people who administered the tests are a bunch of quacks. The irony is that, while she couldn't see the behaviors in herself, other people could see them. Usually the other people are afraid to ask if something is wrong, but they can tell something is a little off. In occasional moments of clarity, after I've explained for the umpteenth time that, yes, we're married, we bought and moved into this house together, she will say, "What's the matter with my brain?"

trottingalong · December 2023

Lgb35

Dec 18, 2023

My DH is still independent however the changes are obvious on a daily basis. DH has always been a workaholic and not good at expressing any type of emotion other than sarcasm. I am 53 and DH is 60. He has not accepted what is happening and does not want me to tell anyone what is going on. Of course this is not something we can go through alone. The main thing people say is yeah I forget things too that’s normal. Or they spend a short time with him and think he seems just fine. What they don’t realize is he has no idea what their name is or any real memories of how they know each other. He is very good at show timing and avoiding topics he doesn’t remember or if it gets confusing he stops talking and just listens. Our youngest son lives out of state and doesn’t notice anything when we visit for a week at a time. I did tell him on our most recent trip that his dad doesn’t remember our daughter in law or our 2 grandkids names. And the game he plays with our granddaughter that has animals on it that his dad has no idea what any of the animals are called it is basically a matching game. Other people can’t see what we see on a daily basis. This journey is as they say the long goodbye because we are losing our LO and the future we thought we had a little at a time. A fear of the unknown and what will be left for the survivor at the end. We begin the journey silently grieving and letting go as soon as we hear we are dealing with a neurodegenerative dementia.

You said it perfectly.

CStrope · December 2023

mrahope

Nov 30, 2023

I can second so much of what was said here. I have realized that the DH I knew was gone some time ago. The angry toddler-like person who's in the house with me now isn't the person I married. The really close people (my sisters, son and DIL) have seen this up close and are starting to urge me to place, but the other folks (including a DD who doesn't live nearby) don't understand at all. It DOES feel like a divorce because I have to protect my sanity by getting a little distance, or I won't be able to go on caregiving. The rage episodes, particularly, are draining. At the same time, I feel the sadness creep in at times when I don't expect it. It's vague, and general, but most definitely there. I often wonder how much "me" will be left if I manage to outlive him, including the ability to form close relationships (even friendships) after getting so much trauma from this one.

@mrahope you said the one thing that scares me the most.....I wonder how much "me" will be left after this nightmare is over. My son even said to me the other day, "you always say you're afraid of how dad's FTD will change you, well you have changed, a lot". That was like a stab to my heart. I was always the social one, the one that would be the first to get up and dance or tell jokes for hours at a time. Now, I don't care to go anywhere or see anyone much less laugh and have fun.

DTSbuddy · December 2023

Dio

Dec 5, 2023

I've only endured a short journey, which started just a little over 2 yrs ago. I might have cried enough to fill a pond. Just when I thought I have no more tears, they start rolling down again. I believe I've started grieving the loss early on. But as the days and horrors wore on, I began to let acceptance seep in, liittle by little. Not quite there yet, but with acceptance also came a surreal calm, little by little. One day at a time. I wish to all caregivers a blessed calm soon.

I wept and wept at first, and sometimes my DH wept with me. Then I had bouts of anger, but there was significant blowback to that. So I started repeating to myself over and over that I am glad have his company. We started playing catch, dancing to big band music, and splashing in mud puddles, (when we are not looking for his shoes, glasses, and unknown objects.) I got an air tag and door alarms so I worry less about him wandering. I held a neighborhood potluck, and made sure my neighbors know that he can't talk and where he lives. Every month there is something else he cannot do. Now, as I show him how the faucet works, I'm tell myself I'm glad he's willing to wash, and I try not to obsess over what brain pixels will disappear next.

Yeah, you're right for thinking it is really, really hard. But I have to choose happy over angry, even while I am cleaning the carpet.

LaneyG · December 2023

https://alzconnected.org/discussion/67266/the-struggle-with-acceptance-and-clarity-about-dementias-effects-on-our-lives

Hi Story Crafter,

For me, it was always just one day at a time. My DH is somewhere around Stage 4 or 5 I think now. In the early days we were ok. What I found most difficult was his denial anything was wrong, always with a statement "I've always had a bad memory". He still feels that way. I had to adapt to the fact that he wasn't being lazy or difficult. He just didn't remember, and he was always so confused. I had to learn patience and compassion very quickly. He would have occasional moment where he would reveal something was wrong and that his brain wasn't working white. I basically evolve to being at his beck and call whenever he needed anything. My heart was/is breaking for him. Do not underestimate the value of lots of hugs, kisses, laughs, silliness and dancing to get through the day. Try to find things you can still enjoy together. I am finding that this gets way more difficult as things progress.

I too struggle about how to speak about all this to others. I know he would want me to protect his privacy so I try to be discriminate about what I say to whom. I'm completely open with his doctors. I don't know what to do with my family (siblings and 99 year old dad. We have no children). Sometimes I feel like they are in denial. Despite my efforts to keep them informed, I don't know think they have a clue of what our life is like. Sometimes I wonder if it is a message that they don't want to know or have to get involved, or if they just don't know what to do. Maybe it is all in how I am communicating. I would be interested in hearing others experiences with this as well. Right now we are in a pretty lonely place.

Biggest takeaway for me has been to try to keep the mood fun and light and to count blessings. We do have many.

M1 · December 2023

Laney i think you are exactly right that a sense of humor helps a lot, and I am blessed that my partner has retained hers even as she enters stage 6 in memory care. I would be open with your family for your own sake, this is a very lonely journey for a spouse. I think most don't have a clue and don't know how to help. I say that kindly, I don't think it's deliberately mean spirited, but it's beyond imagining unless you're living it.

What a powerful thread, storycrafter.

Lgb35 · December 2023

https://alzconnected.org/discussion/comment/191752#Comment_191752

I understand the denial blaming the person doing the test did something wrong. When DH can’t name the animals in the tests he says it’s because he never studied animals or really got into knowing anything about them so that’s why he doesn’t know them. He has an excuse for a lot of things and guess what…none of it is his fault or caused by this disease

Mimi50 · January 2024

25 years ago when my husband and I said those wedding vows. In sickness and in health. Did my 25 year old self know that my then 34 year old husband. Was going to have stroke at 55 years old. No I didn’t. That in 2022 he would be diagnosed with dementia. No I didn’t. Would it have changed me saying those vows. No it wouldn’t have. Dementia is not something Richie did to me. It is something happened to him. It steals his childhood memories. Takes away his memories of reciting those vows to me. Will take away the memory of our only child. Our granddaughter he won’t remember either. Then the day will come. Where he will need around the clock care. After that dementia will take away his life. Leaving me with memories of my husband. That dementia took from me. That is what I can’t accept.

Dunno · January 2024

“One of the hardest things I can think of offhand is that we slept in the same bed for 50+ years together, snuggled and connected in every way. We haven’t been together in the same bed for over two years.

"Friends/acquaintances who say, ‘Oh, she seems really good."........ goood grief

AlzWife2023 · January 2024

https://alzconnected.org/discussion/comment/191693#Comment_191693

I haven’t even read past the sentence where you write “he is 92 and I am 63.” I had to tell you that my DH is 80 and I’m 51 and we’ve been together 33 years.

AlzWife2023 · January 2024

https://alzconnected.org/discussion/comment/191739#Comment_191739

Grief is truly an experience and not a process with steps and stages!

AlzWife2023 · January 2024

https://alzconnected.org/discussion/comment/193735#Comment_193735

I started sleeping separately for my sanity and comfort a few months ago, but I’ve returned to our shared bed because I miss him. I want whatever of him that is still there to know that I love him. I want the comfort of his company even if he’s not all there. This is so painful.

I posted today and later deleted the post about wanting to date because after 33 years of partnership I feel alone. I miss the love. I miss the relationship. I want a partner to help me thru this like I’ve had a partner my whole adult life to help me thru rough times and to grow with me. I deleted the post because it had 75 views and no replies. I was ashamed. I really just want him back and realized this dating fantasy is just another way my mind is protecting me from the intense grief of slowly losing the man I love.

M1 · January 2024

No need to be ashamed. Shark guy had a similar thread recently. No one's business but your own IMHO

Mint · January 2024

DTS you mentioning playing catch with loved one reminded me of something. Think its’s great you thought of that.

My Aunt had dementia and i would ġo visit her and go with her to activity time. Another patient that would frequently be there always just sit with her head down and never appeared to know what was going on to me. One day the activity, Director was just tossing a ball to the residence and they would toss it back. She went and tossed that ball toward that lady and I thought why is she doing that.? Much to my surprise the lady picked her head up, caught the ball and bounced it back. I was so surprised. All the residents seem to really enjoy that activity. After activities was over I mentioned to that lady how surprised I was that she caught the ball. She said she always loves to play ball and that she had been an architect. Always liked when family brought in pictures and left in room it helped me to know the person better i was taking care of. If they asked me anything about my job i would always ask about their career. You just never know.

ButterflyWings · January 2024

@AlzWife2023 , I am with you 100% with just accepting my DH as he is any given day, loving him, and staying close. Stage 7 is moving fast. The decline in just the last 2 months is shocking and sobering. And terribly sad.

As for your post, I don't know if I read that one, but I am not able to reply to most things I read here most days, just given how much my DH's condition is requiring now. I am sorry to learn that by not commenting after viewing it might be interpreted as criticism or something else negative by the OP. That is not the case. It is only a function of my having hands full more than ever with his high maintenance needs. No judgement at all.

And your longing for a real relationship again - we get it. I also miss my beloved and sometimes really, really wish there was at least a special someone I could confide in and trust with all the ups and downs of this dementia journey that I am trying to survive-- like my DH and I always did. But that feeling is quickly suppressed by the urgent demands of this Alz daily grind. And my heart that is otherwise on "pause". That is not healthy long term I think, and definitely encourage and applaud anyone who is open to finding a new spark.

BugJ. · January 2024

https://alzconnected.org/discussion/67266/the-struggle-with-acceptance-and-clarity-about-dementias-effects-on-our-lives

BugJ. · January 2024

Storyteller,

I totally understand your thoughts. For me it was talking to my family about my DH diagnosis and asking them to get educated on it. Fortunately everyone is very open to the education. My DH is somewhere between stages4/5. He is still able to have meaningful conversations with me. We talk often about what is to come, and what he wants to have happen.

I found that self care is so very important. Talk to friends, family, co-workers. It really helps.

jehjeh · March 31

I'm sorry i missed your earlier post and that no one replied. I get it. The one person I always turned to with my fears, concerns, joy... is now unable to be there for me. I think it's natural to wish for a return to that kind of partnership. I'm at the point where DH is still at home and needs me every minute. All I can think of is, "I just want to be alone one day."

No need to be embarrassed here. We all have thoughts about "what if?"

The struggle with acceptance and clarity about dementia's effects on our lives

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The struggle with acceptance and clarity about dementia's effects on our lives

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