Haven't we all?

JDancer · June 8

Aa my husband transitioned to stage 7, I decided to visit this discussion, as I expect to lose him soon. Then I realized, I lost him years ago. My helpful, funny, kind husband disappeared years ago. Loving someone with dementia means losing them, slowly.

psg712 · June 8

Yes. My mom passed on Saturday. She had been bedbound, unresponsive, taking no food or fluids for over a week so it was expected. I've been in such caregiver mode for the past few years that I haven't dwelt much on the losses.

Now that she has died, people are sending me pictures and memories of her from years ago. It's kind of them but it hits hard to see these pictures and realize how much of her we lost along the way. I barely remember some of these events in the pics. I guess I shut all that down to function as her caregiver. I know it's still fresh but I still remember her more as the gaunt woman with the blank look on her face than as the warm, intelligent, caring person that I see in the photos. The photos make me angry at all that dementia took from her!

JDancer · June 8

Yes. It's hard to hold on to those memories of better times. It's one of the reasons I don't encourage friends to visit. I want people to remember the way he was, not the empty shell he has become.

GothicGremlin · June 9

I'm so sorry @JDancer and @psg712 . I know where you both are.

I lost my younger sister a couple of years ago to early-onset AD & FTD. Stage 7 is no fun. Thankfully my sister was only there for two months before she passed away. Still, it was harrowing.

sandwichone123 · June 10

When my dh died recently, I think people really expected me to emote more. I'm sorry to disappoint them, but I'd done my mourning over the past four years. I just give thanks for my coworker who put the word out asking others to treat me normally. I'm not sure I could have handled everyone using the funeral home voice with me.

CindyBum · June 10

Oh yes. I said many, many goodbyes to my DW before she passed. My biggest feeling the moment she passed was that I felt her spirit release from the shell of her body. My relief to know she was free was immense. So was the relief for me…not having to watch her shrink and disappear in suffering. I remain filled with gratitude that I loved her like I did and that she loved me back. What a gift.

I do still cry at her being really gone. I'd love to just sit and hold her hand one more time.

Yesterday, the song "What is Life" from George Harrison came on the radio. Now that made me cry, but then I realized that it's such a powerful message for me and what I need to do now: reinvent my life without her. I have been listening to it over and over:

Tell me what is life
Without your love
Tell me who am I
Without you by my side

Boy, could George distill it down to the very heart and soul of it. I will find out and know I will never be without her love in me and she may not be by my side, but she will live me forever.

https://youtu.be/fiH9edd25Bc?si=dysppJrzzfvVAB3F

howhale · June 11

Yes, it is like thousands of losses, hour to hour, day to day every piece of them lost little by little. It is usually that aspect of this disease that others cannot understand well not having lived it moment to moment. I was able to function fairly well for the wake and funeral of my DW which seemed to surprise some. They had not seen my grief for years day to day and they would not see my grief overwhelm me in the days alone afterwards in our home. I don't think many of us grieve as much as we might need during the time we are the primary care giver. We are too busy, too stressed, too afraid of what's next, too focused on caring to have the freedom to just sit and let it all out. Man, does it come crashing down later in those countless lonely hours sitting in the deafening silence of our home without them. And then we must deal with that lack of understanding of others in how we process our years of grief when finally unleashed. Our grief does not follow the stereotypical grief pattern that is more often seen with the loss of another loved one. Losing our spouse and in the way we lost them is unique and unique to each one o fus.

psg712 · June 15

I just got back home after going out of state for my mom's services and burial near her former home. It was good to see family and old friends come to remember her. Exhausting, but good for all of us to get together.

I've only been back for a few hours but have caught myself three times thinking or planning about getting over to the facility to check on her, needing to shop for things she needs, etc. What a hard habit to break. I watched her casket lowered into the ground ... somehow my subconscious is still in caregiver mode. I do have to go clean out her room, but not today.

tboard · September 4

https://alzconnected.org/discussion/76236/havent-we-all

We do loose them a little every day. It is a long goodbye.

Haven't we all?

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