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

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.

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.

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.

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.

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.

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.

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.

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…?

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.

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 ❤️

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.

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.