What will I remember?

Vitruvius

Am I doomed to remember DW primarily as someone with a progressing dementia?  Of course intellectually, superficially, I can remember the wonderful way she was before this terrible dementia. But at a deeper level the emotional memory I seem be developing is that of a great sadness for her, almost pity that she can no longer be the great person she was. I find it a huge irony that so many couples don’t really make it, yet here we were doing just fine and this had to come along and take her away a bit more each day. Is anger about the unfairness of it what I will most remember?

I am still able to care for her at home but I feel the day will come when I need to place her. Is guilt that I couldn’t do more for her to be my emotional memory?  DW attends a very good day program, she calls it her “team”. It is good for both of us I know, but I am deeply saddened every time she brings home a simple craft item. Is sadness for what abilities she lost what I will primarily remember?

What will I remember, what will I feel, what emotion will her memory stir in me when it’s over, assuming that I even survive until then? We are both only 70, yet she is well along in her dementia.  Will I be able to properly, primarily, remember the women I fell in love with?  Or will dementia rob us of that as well?

M1

I share the question Vitruvius. Call me a romantic, but call me lucky to have had twenty-five breathtaking years before dementia took her quality of life away. And mine.  Better to have loved and lost than never to have loved at all. Peace to you.

RobertsBrown

Well said my friend.

These long and lonely days offer a lot of time to contemplate these very questions.

I share your concerns, with no answers to offer.

RanchersWife

My husband has voiced this same concern about his mother. Sadly, he hopes that when she is gone he will be able to remember her as the mother she was to him most of his life. This time is so intense that it seems to block out the regular, normal memories.

Ed1937

Maybe I'm wrong, or maybe it's different for each one of us, but I think in the days following the end, the memories will be primarily about the disease that took them, and how our lives have changed. But later on it will be the memories of the good times we remember. I say this because we had a son who committed suicide in 1998. Today that grim time is not something that affects our thinking of him. We remember the good times.

harshedbuzz

Vitruvius-

I can't speak to my own experience as I lost a parent and one with whom I did not enjoy an easy relationship. 

But I have been a keen observer as my mom went through dad's decline as the result of mixed dementia over 12 years (she'd say 2, but she was a caregiver for closer to 10) as everything that initially drew her to him- his looks and grooming, cutting wit, enthusiasm for life and intelligence faded. My parents had a strong symbiotic relationship in which she adored him almost as much as he adored him. 

I have also watched the process as she grieved him in Stage 8. Initially, she was mostly shell-shocked. And she was also relieved- that he would no longer be living a life so unlike who he'd been prior and that she would no longer bear responsibility for his care and wellbeing. The first year or so my DH referred to her as "the merry widow" as she hit her bucket list hard and completely redid her home and shopped for a very aspirational wardrobe. To be fair, we bought this house about a year before dad died, so it was still decorated by the previous owners who had questionable taste. TBH, as much as she enjoyed her stint living her HGTV fantasies, I think this served as a distraction from the trauma she'd been through. 

Once she got the house in order, she had a couple of medical crises that were primarily related to not looking after her own health during the last 2 years of caregiving. I put together a great medical team for my parents when they moved, but mom randomly stopped some medications because she needed refills or because she thought they weren't helping her. Ugh. We spent almost a year distracted from her grief by pressing medical stuff; mom's medically complex- she saw 16 different doctors including 2 ophthalmologists- one for each eye. 

At about 2 years, things changed. This was the start of the pandemic, and she spent more time alone than she had before. I feel like she really started to process what she'd been through and what she had lost in all of it. She started to dwell less on those last 10 years or so and more on the happier times- when they were dating, them deciding to attend college in their 30s, the houses they'd remodeled together, working together, the fun they'd had early in their retirement. The bad times do come up, but mostly in the context of a "rough patch" in an otherwise mostly happy 60+ year union.

HB

White Crane

Sometimes I wonder the same thing.  Lately, it is getting harder for me to remember what DH was like before Alzheimer's.  In my minds eye, I can still see the happy, carefree man he was but it's as though I am watching a movie of someone else.  This disease has robbed both of us of so much.  I hope and pray that when it's over the unpleasant memories fade and the loving, happy, funny, cherished memories emerge.

Beachfan

I tend to agree, in part, with White Crane.  Although I can vividly bring to mind life with DH before Alzheimer's, it is hard for me to completely believe that he could do all the things I remember.  He has been so dependent on me for so long that it's hard to fathom that he would once set a 6 AM alarm and slip out of bed to join his buddies for breakfast and golf, that he would drive high school kids that he coached up and down the East Coast to visit colleges for recruitment purposes, that he would whip up hearty soups on snowy days, that he would paint, wallpaper, and install drywall in the kids' rooms, that he maintained a huge, breathtaking garden and landscaped area around our former home.  And yet he did all this and more; I have the pictures, memories and videos to prove it.  

In the present, in my mind's eye, I can only conjure up an image of him sitting quietly in his MCF, no interaction, no reaction, just "here" until someone leads him "there." I can't really verbalize how I remember him, or how I will remember him.  I only know that what is going on now was not part of the master plan for our lives.  Sadness creeps up now and then; I try to take it one day at a time.  

dayn2nite2

Everyone has their own timeline, but my experience is it was a really long time before memories of "before" came back.  Most vivid and still forefront was the dying process.

M1

Like Ed said, sometimes it helps me to remember we're not alone in this, nor is dementia unique in this regard. All deaths and terminal illnesses are difficult to face and can crowd out the rest of the life for a while. Ah, those lucky few who are fortunate to die without warning or suffering. But we don't like those either-there may be trauma involved, or we don't have a chance to say goodbye.  There is always loss, and the tension of loss and hope, grief and joy, is constant. Goodness, didn't realize I was going to wax so philosophical this afternoon!

FTDCaregiver

Hello Vitruvius - Thank you for the post and others replying for this thread. Like you, I too care for a DW at home and fear the eventual end.  As to the present, yes, I too get very sad at the moments you describe, even now as I write this, looking over at my DW holding her comfort stuffed animal, gazing at our TV, not understanding what she's seeing, yet, as I call her name just now, she glances over and smiles at me me saying..."kitty". She says that a lot now, almost in every broken sentence. But she is happy, and through her contentment, strangely now, though painful, part of me is happy too.  

Early on though as her disease progressed, I become conflicted when trying to reconcile what I was experiencing in the present through my prism of the past, do you feel this too when sadness overwhelms in viewing what you're seeing when contrasting it to the past?  I'm trying, God knows, to seek peace and joy in the present through the belief and knowing, if only just for now, this moment, that for her, in her smile...she is happy. I just have to take joy in that moment.  I've had a lot of time to think these past many months being alone, in our home with my DW and have come, at least for me in dealing with grief, to not try squaring the present with our past..,even participate in this new normal.  If folks looked through our window, they'd probably see two crazy people dancing to music, clapping together, playing with our cat, rummaging through our closets together, looking at pictures all over the floor, her emptying drawers, me putting it back again and yes, sometimes doing it together.  Why?  It calms her, keeps her busy.  Yet, strangely, I can still connect with her through all of this and I just loved and still do being with her.  These are the memories I know I will have, good ones given the new normal we are in now.  I can only let tomorrow take care of itself. 

I can't offer anything with what your experiencing, but your post touched my heart and I felt I had something to share as to what I think will be remembered thus for in our journey.  God bless you as you move forward and thanks so much for sharing. 

   

Joydean

I too have a lot of sadness thinking of what will come. I’m reminded of when my brother in law was in his last hour. My husband’s brother, had suffered for years with Alzheimer’s, he could not talk nor recognize any of us. He loved the old hymns, so my SIL,my niece, several other family members, myself and husband, all singing, my husband couldn’t take it so he went in another room. My SIL reached over to Willie and said,”honey it’s okay if you are ready to go home, I will be okay “. He had not spoken in months, but he opened his eyes and said thank you. And then he smiled and was gone. She was in pain but had peace at the same time. My husband later told me and our son, don’t let me suffer with that disease! And yet here we are.

A. Marie

Thank you, Vitruvius, for raising this question. I'm wrestling with it too. In hindsight, DH's dementia has been coming on for almost 11 years now--and it's getting harder and harder to remember him as the man he was. The dearest, kindest, smartest, funniest man I've ever known is now a shell of himself sitting in a nursing home. And although I try to tell stories about him to myself and others to keep my memories alive, the stories are increasingly only just scripts. The living, loving memories are slipping away. And this is breaking my heart.

Stuck in the middle

Ed1937 wrote:

Maybe I'm wrong, or maybe it's different for each one of us, but I think in the days following the end, the memories will be primarily about the disease that took them, and how our lives have changed. But later on it will be the memories of the good times we remember. I say this because we had a son who committed suicide in 1998. Today that grim time is not something that affects our thinking of him. We remember the good times.

It takes time.  

Like Ed, I buried a son and it nearly killed me.  I have lost younger brothers and most of my friends.  At the time of their deaths, the first thing I thought of when hearing their names was their deaths.  But later, I find that I first think of earlier, happier times.

  

My most recent loss was my mother, in 2018.  I no longer think first of her last days when her name is mentioned.  I remember lying beside her at nap time when she was a young mother and I was a small boy, and a thousand other times over a period of 70+ years.

Grief gets easier.  Not as fast as you want it, but it comes.