Just as my DH is forgetting who I am, I am also forgetting who he is.

Palmetto Peg

It is so hard to remember the old DH - the one who made me laugh, who took care of my car, the finances, and the heavy-to-lift things. He is quiet now, very suspicious of my "boyfriends" who seem to be everywhere, and rarely smiles. He has to be fed and has a hard time swallowing, and most meals have at least one incident where he coughs or sneezes pureed food all over me. He is so thin now, in a wheelchair, and the big strong man I loved is gone. How do you manage to hold on to the vision of who your loved one was before this terrible disease took them? I hope that after he is gone I will be able to reclaim the memories of our life together. Now I just feel sadness and loneliness. How do you cope with these feelings?

Metta

Tears. Meditation. Acknowledging that the sadness is ok. Looking up at the sunshine or the stars. Hugging a pup. Journaling everyday. Exercising everyday. Knowing that the pain is part of grieving. Reading here.

My DH is on hospice, unable to walk, but usually calm and kind. He is just starting to lose weight, which terrifies me.

Hugs to you. Wishing you the strength you need each day.

midge333

My DW died in August. Unfortunately, I can't seem to remember what she was like before her decline. It all started 13 years ago and all I remember is the last few years…

tonyac2

This in every way is a horrible disease. It claims so much more than just the patient. It claims the memory of who that person was, what they were like. My DH laughed out loud the other day and it almost made me cry. I forgot what his laugh sounded like and almost thought for a second he was back.

Vitruvius

My DW has been in Stage 7f for about a year. She is in a minimally conscious state, the only signs of awareness is a feeding response when her lip is tapped with a spoon. She very, very rarely opens her eyes, and when she does for a few minutes, it is with a glazed look where I think she doesn’t actually see anything.

As I feed her I talk about the “good times” past and try hard to remember her the way she was. Yet I’m never really successful in bringing back a full fledged memory of her old self. It tends to actually cause a bit more pain than solace. It’s the same when I occasionally review photos of the “good times”. I don’t know if I will ever get to the point where the years of dementia no longer dominate my memory of my DW, and I can be left with just pleasant memories of our “good times”.

Palmetto Peg

Thank you for your insight. It might be the worst part of the disease - it even robs us of our memories! My DH is rapidly losing weight, and I don't know that we have much time left. I just want to remember him, and not this person who isn't my partner and my lover. Prayer and meditation may help - I will certainly try it. Blessings to all of us putting one foot in front of the other down this terrible road!

Quilting brings calm

I think most normal people have the strongest memories of the recent past. You can call up older memories looking at photo albums, objects that have meaning etc. If you think about it, you probably can’t clearly remember your own childhood or your 20s, 30s, etc. So it stands to reason that your clearest memories of your spouse are from the last 10 years or so.

DeeDee624

New here. First comment! I've had moments when I cried myself to sleep because I can't remember my sweet DH before this disease. I told my daughter how heartbreaking it felt since he was my sweetheart, best friend and confidant, and best ever joke teller for so many years.
She asked me very specific and random questions that really helped me to reach back and see him as he was - things like "tell me the worst outfit you ever saw him in", "Did he ever sing or dance around and to what songs or music"?, "Do you remember a time when you were sick and he did something really nice or kind, even if it was out of character"? and so on. It was amazingly helpful for me to recall specific things from different times in out past in answer to her questions. It doesn't work well if I try to bring things up on my own, so maybe reach out to someone who could do the same?

Denise1847

Honestly, I try not to think too much about the past, the memories etc. as I find it too painful. It projects me into a crying jag and depression. I tell myself to not look back in the rear-view mirror as it does nothing but hurt. I am trying to just survive. My job right now is to make his time here as good as it can be. I plan to have a celebration of life when the time comes to memorialize the great man he was and still in. Even as I write this, I have begun to cry.

Karen711

Even though I’ve been traveling this road for nearly 15 years, the worst of it has been the last 4 or 5. Such a slow process for us. In the last year especially I have actively tried to recall our good times and how my DW was. We listen to music together a lot and certain songs will transport me back to our happy past. And though this usually makes me incredibly sad, I also appreciate being reminded of the person she was and to remember the incredible life we’ve shared. 42 years. Also, we’ve recently had some caregiver help and they’ve been curious to hear about DWs career- and so I’ve been able to “brag” about her to them. It makes us both happy to remember what a great career she’s had and how many people she’s helped along the way. I think she’s surprised to hear about all she has done. And we are surrounded by pictures of our past, dogs, family, friends- and all this helps me remember who we were together and who she was. As sad as this all can be, I really feel it helps me be a better caregiver. Especially when I am worn out and not sure I can make it through the day (chronic health issues of my own) - it’s like a big infusion of-oh yeah, I remember why I’m here doing this. I remember the love when it went both ways! It does make the demands of caregiving easier for me so it’s worth the feelings of sadness. We’re sad anyway right?

Palmetto Peg

We are sad, for sure. I am going to pull out some of the old photos and put them out where I can see them. That will help me remember the good times we did have. We had bad times, too, as all couples do, but I want to bring back the fun and the love. Thanks for the suggestions!

trottingalong

I have a photo of the two of us on my iPad that I just love. Neither of us even knew about this photo until a few months ago when a friend sent it to us. When I get depressed and really miss my husband who often is sitting right next to me, I look at this photo. It reminds me of how much I really loved him. Don’t get me wrong, I still do, it’s just a different kind of love now. But I sure do miss both those people in that photo.

annie51

This is one more reminder about how much this disease takes from both the PWD and the family. I remember when my mother passed away and the recent memories of how she looked and acted kept popping into my head. I tried so hard to wipe them away and remember how she used to be. I know I will have to face the same with my Stage 6 DH at some point. I really wish now that I had taken more videos of him years ago. I think that would help conjure up the good memories.