Where to go from here?

Crushed · July 1

I don't post often anymore for my own mental health. DW is her 4th year of late stage 7 14 years from diagnosis. She is 72 and in memory care since 2017. Cost is $150,000 a year. We have it due to a lifetime of hard professional work. Most folks don't and I know that. We just gave out the national award honoring DWs achievements. My daughters presented it. I felt nothing but ashes. I have a good therapist and 5 wonderful grandchildren. I am not depressed in any medical sense. I travel , write papers , give lectures and enjoy the sunshine.
I even know that DW and I had more "good times" than most. Neither of us was ever in a hospital except for childbirth. We were always employed. DW was a fun girl.

I just go out at 2 am and scream at the universe

White Crane · July 1

Oh, Crushed, I hear you. There are times when I scream, too! How can we not. Grief hurts.

TyroneSlothrop · July 1

Crushed, thanks for posting. Like you, I feel like I can manage; DW is in MC, and I have family nearby, assets, emotionally rewarding work, and supportive friends. But your question remains, and begs attention constantly. I don’t know.

mrahope · July 1

Hello, @Crushed . I SO get how empty it feels. It's almost as though you built a beautiful, fairy tale kingdom, and now you must only rule it alone. I'm glad you are honoring your DW's achievements by giving to others. It is an example I hope to follow, albeit on a much smaller scale. The point is, the kingdom is just not as beautiful without her in it, and even though you see beauty around you, there's a hollowness. We all expect and hope for survival (of this dread disease) for ourselves, but that's often all we get. You are not alone.

RickM · July 1

I’m sorry. I understand. My story is very similar. May we find strength and peace.

PKidd · July 1

Crushed, oh my. My heart is with you. My DH is still home with me but his disease creates so much loneliness. We are isolated together. Even when we are with others. I often find myself wondering what my life will be like when he is gone and all i can think of is that i will feel more grief and lonliness because he will really be gone. You know what I mean?

tigersmom · July 1

Crushed, I am so very sorry. What a long and terrible slog this has been for you both. I’ve only been a caregiver for three years and already I feel I’m at the breaking point. Go ahead and yell at the universe if it makes you feel better. This is all too much to bear.

ronda b · July 1

https://alzconnected.org/discussion/comment/214463#Comment_214463

Yes

Vitruvius · July 1

My sincere condolences to you. Your situation is the worst case scenario to be sure. I hope you and your DW will find peace soon.

jfkoc · July 1

So good to hear from you!

SDianeL · July 1

me too. 😪 I had to put my husband in Memory Care in December due to my cancer diagnosis. Until recently I was going thru chemo & surgery and now that's over, it hit me so hard. I feel like he's being ripped away from me and I can't hold onto him. It physically hurts. I couldn't visit often during treatment and now they have COVID cases in another wing there and my daughter said don't go visit. I just want to go bring him home but I know I'm not physically able to care for him. My sweet sister has Dementia and she's the one I always talked to when things happened. I do have children who are very supportive but I hate to bother them. It's heartbreaking. There is a support group that meets at the Memory Care Facility that I will join as soon as the COVID outbreak is over. I need to talk to people who really understand. It's terrifying & heartbreaking. I come here and read often. I don't know what I would have done without this forum. Sending hugs.

A. Marie · July 1

Crushed, thank you for the update (I've been wondering how you're doing), although I believe I understand about the "ashes." Our house and the property next door that DH restored constitute his monument now (he died 6/4/23), and I grieve that they are now his monument and not his little "dacha" to enjoy in retirement. But somehow I go limping on, as you do. I wish you and all of us peace, somehow, sometime.

JJ401 · July 1

Crushed, I cannot conceive how I will handle years of this. I cannot imagine how you have and are doing this. That being said, I am/was glad to see your post and know that you are ok (or as ok as one can be under the circumstances).

Joe C. · July 1

Crushed, Although a sober update, I was glad to see your post. Your wisdom and counsel is missed here.

ButterflyWings · July 1

(((@Crushed)))

Denise1847 · July 2

Hi Crushed. It is good to hear from you. I hear you about the ashes and screaming at 2 am. My DH was diagnosed in 2018 and is in late stage 5. Honestly, my husband left at least 3 years ago and who occupies his body is a tortured soul. This disease is cruel in so many ways but the long good-bye is extremely painful. I hope you find peace. When you do find that peace, please give us the directions to that place because in many ways the disease is also taking us slowly.

Quilting brings calm · July 2

Crushed

I don’t know how you stand it. I know the first few years of your wife’s diagnosis were much different than the last few years. I cannot imagine having a totally non responsive spouse/parent for as long as you have. You must feel so drained, and so much in Limbo ( as a different poster commented in her own discussion).

LJC43 · July 2

Lills · July 2

Nice to hear from you. Glad you are well.

Like you, I just can't make myself come to this site very often; it's just too sad and memories still too raw after DH's death two years ago. It's so strange: During the time DH was bed bound for 18 months, I often begged God to let him die. I thought I was prepared for him to die. Nope, I wasn't.

Yesterday, I was at a shop choosing new countertops for my bathroom. What 'should' have been a happy time turned into a teary few minutes. No clue why at this moment. It just happens like this. The poor clerk didn't know what to do with me:) Life goes on….yet it doesn't.

RickM · July 3

https://alzconnected.org/discussion/comment/214599#Comment_214599

Yes, I believe I'm ready for my wife to move on. We're getting close as she is not eating any longer but still drinks fluids. Our only child, a son, is getting married in September. This is particularly difficult for me and our son as she would not be able to attend the wedding even if she is still living due to her condition.

I've been pretty surprised at how feelings seem to crop up out of nowhere. I visit her nearly every day and will probably stay around the clock as she starts to transition. I sustain myself by being grateful for the wonderful life we had together but I don't think that I am ready for her to go either. Nonetheless, I have been trying to prepare myself for my life without her.

Dio · July 3

So good to hear from you, Crushed! We are in the same ocean, just on different boats. The other day our family had a wonderful celebration for my sister's 50th birthday. While I enjoyed myself tremendously during the dinner with family, I suffered a "withdrawal" depression when I woke up the next day, saddened by the absence of my DH. The grief is relentless and can hit without notice.

Crkddy · July 4

I'm so sorry. I am only in year seven with DW and already feel like I can't go on. I can't imagine going thru another 7 years. I guess we all do what we have to do, but I feel like the walking dead. Don't want to do this anymore.

Jo C. · July 6

Hello Dear Crushed; it is good to hear your voice. I am truly deeply sorry for all that has been and continues. With a hug for an old friend of this Forum,

J.

Jgirl57 · July 6

Crushed, your wise words and wonderful recipes always kept me coming back to this forum. A road not fun to travel … , I wish peace for you and your family and your beautiful wife. I hope the universe screams back to you one day

JoseyWales · July 6

Crushed, I'm so glad for your update, because I'd been wondering about you and your wife.
I'm not here as often as I was, either. It's just hard to keep walking this road, year after year. I'm happy you're still able to see your DW daily. You really had a wonderful marriage.

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