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

storycrafter

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.

PookieBlue

Story Crafter,

What makes it feel hard is knowing the chronicity of the disease and knowing there is nothing one can do to change its direction. It is a one way road and ultimately the end will arrive. We don’t know how exactly it will end or when, but it will. And then what? The anticipatory grief is real and difficult to put aside for any length of time if it can be set aside at all.

As you say, the changes are seismic. Our life partners are different people now and likely not the person one would choose to spend a lot of time with, but there we are caught in the whirlwind of a declining companion. I don’t think you have a character flaw. You were dealt an undeserving blow like all of us were. We learn as we go and finding emotional peace is a path that we each strive for. We need to forge ahead and take as many wins as we can in this alternate universe in which we reside. May the good Lord give us the strength to endure this struggle and show us light when the darkness seem insurmountable.

Elshack

Storycrafter,

Since my journey ended when my DH passed away on Nov 24th, the only thing I will tell you is to read all you can re: dementia/Alzheimer's. 36 Hour Day is a good read. Try to live in each day yet prepare for the future by getting your finances in order. Each case of Alzheimer's is different and try not to project what tomorrow or the next day will bring. Take care of yourself and hopefully you are already on a med for depression. You will be heard here and since we all have traveled this road, come back often for encouragement.

I just read your bio. There is no right or wrong feeling to have. You already are a warrior!

Davegrant

Storycrafter,

Great question, I think for me was it was the personality change that was so confusing after 48 years of marriage, there was buried in me some understanding of the relationship, some good and some not so good on both of us. We were strong and had good teamwork in managing a house and family but not very good in taking care of each other's emotional needs. So, when the dementia began to change my DW personality together with her anosognosia and the disease was so slow in developing, I was totally confused. I could tell there was a problem, but some days were back to normal, and I couldn't tell what behavior was from the marriage and what was from the dementia. One of my wife's strengths was that I received my basic support from her and that left me nowhere to go in handling the disease and that was confusing me. So, it took several years and progression of the disease for me to gain some understand and acceptance.

The behavior changes were so subtle, that I had a problem recognizing and a bigger problem trying to explain them to significant people in our lives. A couple of family members commented that "She seems the same as ever" and she "Doesn't have a mean bone in her body". When I commented to an adult stepchild that I was going to take some respite, the response was "when does mom get away?" I found my refuge in local support groups where other shared similar experiences. Caregiving, I have read is often a lonely experience. It is confusing to the caregiver and most people are totally unaware of its existence. At least not aware that it might happen to one of your relatives or a member of your immediate family.

Dave

Denise1847

Hi Storycrafter,

I love your questions. You certainly don't have a character flaw. I believe your thoughts and feelings are so normal. You are experiencing grief for the past, for the life you hoped for and for your anticipated loss. The fear of what is to come and waiting for the next phase in your spouse's decline can be overwhelming. This experience is too much to bear without support, counseling and antidepressants. Friends and family say things to make you and them feel better or to deny that this disease has taken over. When they say "He looks good" only makes you feel more alienated from people because they don't have a clue.

By your questions, you are beginning a journey of self-discovery. My most shattering self-revelation is to learn how selfish a person I am. When I get angry, frustrated, want to just have a break, go out with friends, etc., I ask myself "What is wrong with you? You DH is dying of a terrible disease, and you just want to be comfortable and experience restoration of your previous life." I have come to see how I compensate for the various losses by exploring impractical things like redecorating or a trip (which we could no longer take). I then realize that what I really want is to escape this nightmare and make our lives normal again.

I thought I was strong, but this experience has broken me. I get though the day with prayer and gratitude for all of the good things I have had in my life. At times like these, some people get angry with God. I have reached out to Him in when I was in my deepest sorrow, and He has been a source of my strength. Even though I don't know what today will bring, I truly don't feel alone.

By sharing, I hope that I have brought you an ounce of comfort and reassurance.

M1

I sometimes find it helpful to remind myself that we dementia spouses are not the only ones who lose their partners to chronic illness. I imagine that any fatal illness is difficult to deal with and to some degree changes the character of the person and their spouse. I think about heart disease, cancer, COPD-these are not easy either, and there are those among us who deal with those,as well as dementia. Indeed it was fear of a lymphoma that brought on my retirement, not dementia initially.

So I don't think there is any one single answer to your question storycrafter. Each of our stories is a story of a close relationship, good or bad or mixed, that is gradually lost. I don't know that there's a way to explain it to anyone who hasn't lived it. I hope your new PCP was somewhat sensitive to it. The friends and acquaintances-i think this is why they gradually drift away.

JDancer

For me, the loss is overwhelming, and has been since the early stages.

Our past is gone. My DH can't remember our history together.

The present is altered beyond recognition. He's a ghost, not the man I fell in love with. My life revolves around his care.

The future? I fear we will lose ever everything. My financial plan is shattered, my health is deteriorating and my plans/dreams will never happen.

That's my reality and it sucks.

Palmetto Peg

I think that the realization that nothing will ever be the same as it was may be the hardest part. My DH can still communicate and take care of his ADL's too, but seeing him become so anxious and confused and the repetitive questions makes me very sad. People constantly say how well he is doing, but a 5-minute conversation is nothing compared to 24/7 caregiving. Do not blame yourself or think you aren't right in your assessment of what is happening - no one knows your loved one better than you do. For now, try to be thankful that you can still get out a little, and that he can still take care of his physical needs. As we all know, that will change down the road. One day at a time is the best we can do. Take care of you!!!!

Beachfan

Storycrafter,

In reading your bio, it’s clear that you have been “at this” for a long time. It’s no wonder you have confusion, questions, doubts. Every Alzheimer’s journey is different for sure, making it hard for non caregivers to understand. My path seemed easy- - I didn’t experience personality changes, wandering, aggression, verbal abuse, combativeness- - DH just faded away for 13 years, little by little, day by day until suddenly he was physically gone forever. I believe I accepted what was happening early on, and my entire being was dedicated to his care until I was losing myself as well. Since his passing, I mourn his loss daily, I mourn “our” loss as well. There are dark hours and periods of sadness that are accompanied by actual physical pain (heartache?). I have no answer to your thought provoking questions; only empathy and a wish for you (for all of us) to come out the other side unscathed. Blessings.

Iris L.

Storycrafter, I would suggest that you limit relying on outsiders who have absolutely no knowledge or awareness of what living with dementia means. This includes many professionals, even doctors and psychologists. I went through a deep depression. What got me out of the depression was communicating with the members here and with the Care Consultants. These are the only people who had any clue about what I was feeling and what I was dealing with. Please, don't stress yourself with no-nothings!

Iris

ThisLife

A few thoughts: Public information about dementia is unrealistic which drives the "They seem fine." What the public expects to see is and old person with incontinence, inability to feed themselves, inability to communicate, slack faced shell. Late Stage 6 to 7. There is a lot to dementia for YEARS before that becomes dementia reality.

Then there is the frightfulness of the later stages, so person misremembers, forgets, makes a slip of some kind. The comments become, "I forget things, too." and brush it off usually in front of the PWD who has anosognosia and takes that as validation they are fine. It's you. They don't see the aftermath of the badgering, opposition and anger you deal with after these interactions.

Other people spend very little time with the PWD and our loved one is show timing up a storm. They don't see the exhausted collapse or agitation of the PWD at home after these interactions ... for hours or days.

When we take our loved one out in public, we make sure they are clean, dressed in appropriate, clean clothes, and well groomed. They don't see the handstands to get the person to bathe; the sly removing dirty clothes and putting out clean; or the time it takes to prompt them through every. single. step to get ready ... on time.

Finally, the medical state of dementia. There is no real information beyond the amyloid plaques and tau tangles and that certain behaviors are a hallmark of various dementias, or maybe not. And the sentence for you both can be a few years or 20 years. No, we can't tell you which ticket you drew. So, the best we can do is plan for the 20-year long haul and hope that it's not that long or our LO doesn't make it through to the horrible last stages. I need to put all of my needs on hold for X years, and I could be how old when this is over? This is the stuff no one says out loud.

You're not crazy. You have a right to your observations and feelings, and these are normal. You have to get help and support from people who understand. You can tell the people with unrealistic information to spend a week with your LO or kick rocks.

And then from personal experience, if you place your LO and get room to breathe, you look at the person in front of you, think about where you started, and think "So this is how it ends?" Insert personal preferred profanity here.

jfkoc

"What to do with our losses? . . . We must mourn our losses. We cannot talk or act them away, but we can shed tears over them and allow ourselves to grieve deeply. To grieve is to allow our losses to tear apart feelings of security and safety and lead us to the painful truth of our brokenness. Our grief makes us experience the abyss of our own life in which nothing is settled, clear, or obvious, but everything is constantly shifting and changing. . . ."

Caretakers loose their loved ones slowly. Each loss carries grief. It does not wait for death.

Please look your at your feelings straight on...ackowledge them...accept them. The life you are living is going to leave you forever changed. Trauma takes a toll...it just does.

Will you be OK? Yes and we are here to stand by your side every single day so that you will not be alone.

We understand.

-Judith

LindaLouise

Such a powerful question, and so much wisdom and insight in the responses. I find that working through each day, preparing meals, doing chores, picking up the grandkids from school, allows me to focus on the tasks at hand and not process the deep grief that I feel. When I allow myself to process the sadness, the enormity of it feels almost scary. I think this is what feels hard - managing the daily tasks and frustrations, the fiblets and eggshell walking - and swallowing down the enormous grief that looms over everything. When I'm asked how my DH is "doing" at this moment in time, I might answer that we are fine but think about the half hour we spent looking for a missing shoe or the effort to get in the car when suddenly he needs to find a different belt, or get his toothbrush just in case. However, thinking about those things pales in comparison to thinking about what we don't get to do, the inevitable envy that I have to beat back when I see friends laughing or planning with their spouses, the memories of how it used to be, and the sad, scary increasing dark road I am walking down. Also - the realization that I will have many years alone, if I survive this - and that wasn't my plan. However, God is in control, I lean into the peace that passes understanding and look to Him for strength. It's a day to day process and for someone who is a planner, the loss of any control is terrifying. However, we all carry on, and I am so very grateful for all of you here; on those days when I feel like I can't go all, you all pull me back on the path with your encouragement, advice, understanding and honesty. Bless you all.

trottingalong

https://alzconnected.org/discussion/comment/189964#Comment_189964

You nailed it for me, explaining how I feel. It’s difficult to explain to others.

Jeanne C.

Your question has been rolling around in the back of mind all day.

In the early stages I think it's easier to care for him but harder emotionally. Before you have a diagnosis or realize the changes you're seeing are an illness, you're bewildered and angry. Then you find out what's going on and you get to add a layer of guilt on top of that for being angry and not seeing it sooner. And you're trying to wrap your head around the fact that your partner has a progressive, debilitating condition that is terminal. You're grieving your partner and your old life. And the pain is sharp. I still have my moments where I'm really down. And each step in my husband's progression can feel like a gut punch. BUT I also feel like I have a better handle on things and that I'm doing my best for him. And if I'm being honest with you (and myself) I know that I'm slow distancing myself from him. At the beginning it was like my heart was being ripped out. Now it's more of an ache.

M1

I have to say i think you're spot on about the distancing Jeanne. It's critical for the spouse's survival and yet it hurts so much. Having been through a divorce in the past and as the one who initiated the divorce, i have to say that there are in fact similarities. In both instances you cease functioning as a couple and have to start to turn elsewhere for the support you used to seek in your spouse. Both are nothing short of awful. But once you achieve some of that distance, the relationship is never the same.

mrahope

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.

M1

I think the experience will change how I feel about any future relationships. The blunt truth is that I don't want to be a caregiver ever again. Perhaps that's selfish and limiting, but it's the truth, at least for now. I don't think I even want a pet when the ones I have are gone, despite what they say about close relationships and pets prolonging life.

AnnieTB

The original posts and these follow up words of wisdom have meant more to me than any others I have seen. Mostly because my DH also still has most ADLs in place, but is often angry at me for providing reminders, he recently left a restaurant after going to the men’s room in Chicago (no coat) and wandered down the street, couldn’t figure out the drink fountain at a fast food restaurant, in short, I know it is going to get SO much worse, as it has for so many of you, but even now it’s lonely and difficult. And when others say he ‘seems good,’ I agree but inside I know what goes into it. Thank you for sharing that early is also hard, and I don’t think he knows what all he has lost, so maybe not quite so hard for him…?

RickM

Here's a book written by a psychologist who, while in graduate school, worked as a caregiver for a family who's father lived with Dementia and went on to make caregiving a focus of her studies.

Travels to Unimaginable Lands by Dasha Kiper.

Here's a short review with some insight into what the book explores: https://www.theguardian.com/books/2023/mar/22/travellers-to-unimaginable-lands-by-dasha-kiper-review-how-dementia-changes-lives

To address your questions storycrafter: "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?"

The author concludes that (in my words) "it ain't gonna be easy and your mind may be fighting a battle with your own brain".

Comparatively, I've had it easy traveling in these "unimaginable lands". My wife, Melissa, and I traveled these lands assisting in the care for both of my parents. She and I were able to (somewhat?) prepare ourselves for the travel when she first started to show signs of dementia. Somehow, despite our struggles through the early and mid stages, she has remained the loving sweetheart she has always been. In late stage 7, she now resides in MC. So, you could say, I have an opportunity for somewhat of a life again, but, my brain and my heart tell me otherwise.

My goal now is simply try to provide her with comfort for the rest of her journey. But, each day I continue to ask myself these same questions and keep trying to "dwell in the acceptance of what is".

Storycrafter. Thank you for writing this inspiring post.

Safe travels,

Rick

Denise1847

https://alzconnected.org/discussion/comment/190024#Comment_190024

Absolutely!

S. Lynch

Such a deeply connecting post and responses. This is exactly how I feel everyday-the comments of how well he is doing, or it’s hard to even see he has Alzheimer’s . My DH has lived in the same place for all of his 66 years. Most days are good as long as we are in the neighborhood. A recent trip for a few days shook our world of patterns and some predictability. He couldn’t remember where we were, what my daughter did for a living, got lost going to the bathroom, talking to random people on the street, not wanting to leave the hotel room…. I’m sure he was surrounded by fear. It broke my heart and I felt so very sad and guilty that I had made the trip. It rattled me, as I thought I had moved to a level of acceptance. It is like rounds of grieving in the midst of all the caregiving, planning, and just getting through the day. My faith carries me, encourages me, and comforts me. The isolation both socially and intellectually is real. This forum has provided such a refuge each day. Thank you for speaking out with your post, and the many responses. My heart hurts for all of us.

Denise1847

https://alzconnected.org/discussion/comment/190109#Comment_190109

Hi M1, I have said your words a lot - I never want to take care of anyone or any pet again. I think because I am so tired of this life of dependency, no peace, always in duty, alienation and watching my life fly by. I don't think it is selfish, but just where we are right now. I think caregiving for alz/dementia is like have PTSD. I wonder if we will ever recover.

RickM

"I think caregiving for alz/dementia is like have PTSD"

Denise,

My Dad cared for his wife with Dementia and Cancer. After she died my brothers and I had to eventually take over his life when he could no longer take care of himself. I still wonder if he really had dementia or PTSD. He cared for his wife (not our mom) until the end, with no help, despite our pleas for him to get assistance.

I learned a lot from that experience. I'm hoping I learned enough to survive the experience of caring for my own wife.

Denise1847

https://alzconnected.org/discussion/comment/190135#Comment_190135

Hi Rick, I wish you all the best that you will get through your journey in good mental and physical health.

ghphotog

I think most people understand dementia / Alzheimer's to just be a memory problem, they have no idea what else comes with it. Some do but most don't.

When I saw this coming down with my DW I tried to ignore it for the longest time, I saw it and I knew it was real but there was always hope that it was just a little MCI and that won't be too bad to deal with. I didn't want to know what lay ahead. For the first few years it was relatively easy to care for my DW. I could still leave her alone while I golfed or worked. I hoped against hope that it wouldn't get any worse than that. Little by little I had to figure ways to communicate with her when she could no longer answer or use her phone so I used the Alexa Drop-in feature and I could talk to and check on her while she was at home, soon it just wasn't safe anymore to leave her home alone. Another year later and she can't be left alone at all for any length of time. We're in stage 6 now somewhere but the hardest part is never knowing exactly where. How much time is left? What struggles are just around the corner. . .

You are not alone.

Howaboutnow

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 ❤️

trottingalong

https://alzconnected.org/discussion/comment/189982#Comment_189982

I’m where you are with my DH.

michiganpat

Howaboutnow, I am also 6+ years in with some type of FTD. Over the summer I have realized I am finally accepting my husbands disease. I believe it is because it has advanced to where it is obvious. Before it was sporadic and subtle. I spent a lot of time wondering if I was wrong because of his good, normal times. I would analyze his behavior and find excuses for it but could never find a reason why he would think I was cheating on him. It is almost easier now because I know what I'm dealing with. I too have tried to explain to family how he is when we are alone but he showtimes pretty good so I feel as if I am wasting my time as they can't see the degree of it (the constant talking, obsession with the news, and repeating of stories). I have decided to keep quiet as it really makes no difference in the long run.

Howaboutnow

@michiganpat same. I can’t convey to others what this looks/feels like, even when a friend sincerely asks me. It’s bad enough living with dementia and having it on my mind constantly,,,it’s unbearable hearing myself rehashing it and getting a blank look. I’m better off staying quiet.

Dio

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.