If I had only known

White Crane · July 25

If I had only known when we went to bed on January 18th that that was the last night we would ever sleep in the same bed, I would have cuddled up as close to him as I could and held him close. Instead, I slept on my side of the bed and he slept on his. Oh we said , "I love you" like always but if I had known, I would have said so much more…at least I think I would have. Maybe I would have just laid there and cried. The next day he didn't feel well and ended up ln the hospital with pneumonia and never came back home. He was too weak and the doctor said I could no longer take care of him at home. He went straight to memory care from the hospital. It's been six months and you would think the grief and loneliness would have lessened by now but they seem to be getting worse. Maybe it's because I signed a contract to sell our home of 52 years. So much has happened in the last six months that at times I haven't had time to think. I downsized to a much smaller house and have been working on spending down our life savings so he can qualify for Medicaid. My new house has needed a lot of work…painting, new carpet, new plumbing, a bathroom remodel. Now it is finally finished and looks lovely but I feel so lonely inside. And the grief is so intense sometimes it is like a physical ache. I went to the grocery store today and felt close to tears as I picked out one of this and one of that. I used to buy things he liked. Now I just walk around looking for something to cook for myself. This is such a lonely time for me.

Brenda

M1 · July 25

I wish i could tell you it gets better Brenda, but I can't really. It hits in waves. I went to feed het lunch as usual today and she wouldn't eat anything - plus i was frustrated because a huge load of laundry went missing last Friday. While I was waiting in the kitchen i looked across the dining room, and there was a male resident wearing her clothes. I left to get her a Wendy's Frosty-something she will always eat- and cried in the car.

Hang in there. Our last night under the same roof was March 21, 2022.

White Crane · July 25

Thank you, M. I think you’re right, it hits in waves. You hang in too.

SDianeL · July 26

I’m so sorry. I know how you feel. I had to place my husband in memory care in January after my cancer diagnosis. I went thru chemo and surgery and then the loneliness and grief hit me. I now visit him once a week and cry when I leave. I miss him so much it hurts. I’m trying to find things to do but I don’t want to do anything. I moved in with my daughter so I don’t even have a home to take care of anymore. It comes in waves. Sending hugs.

Karen711 · July 26

https://alzconnected.org/discussion/70017/if-i-had-only-known

Brenda- this is so heartbreaking I have no words that are sufficient. I hope you have good friends and family nearby. If you do, lean on them as much as possible! I’m sending you a hug!!
xox Karen

Jeanne C. · July 26

Hi Brenda - I have so much empathy for you. I feel your loneliness and wish I could help. You've been dealing with so much change all while watching your husband slowly decline. It's a lot.

I have a very pragmatic question for you. Are you including a Medicaid compliant annuity in your spend-down? These allow you to turn excess assets into a "no cash value" income stream. If you're not using it, please discuss it with your CELA. This could really make a difference in preserving some funds for your future.

Be gentle with yourself.

Denise1847 · July 26

I am so sorry Brenda. I will keep you and you DH in my prayers.

ghphotog · July 26

Very heartbreaking indeed. I'm ok until late afternoon, early evening when I'm by myself in a lonely empty house. For food I mostly just forage. Buy simple groceries, easy to heat or premade meatloaf, etc. try to stay away from junk food but after I have my two 16 or 20oz craft beers at the pizza joint we always use to go to, my oasis now, then head home, I don't eat so good.

I have been professional photographer for over 20 years but have never pursued credentials until now. Joined PPA and have scheduled my CPP (Certified Professional Photographer) exam for next week. Maybe I can start rebuilding my photography business again. Perfect opportunity to focus on those things again.

fmb · July 26

Brenda, it is truly heartbreaking. I pray that you may be comforted in your grief and loneliness.

@ghphotog I have been following your story, and I'm glad to read that you are focusing on moving forward. It is good to begin envisioning and creating the future we want to have. You and others here are an inspiration to me. Best wishes for the certification exam.

ghphotog · July 26

https://alzconnected.org/discussion/comment/217011#Comment_217011

Thank you fmb!

CindyBum · July 26

xoxo

Joe C. · July 26

Brenda, I certainly can relate to your feelings and the loneliness you are experiencing . Sometimes I think about spending the night at the MC so I could hold DW once more but that will probably not happen. Maybe one day while she is sleeping during the day I can lay beside her and hold her. The is a Grateful Dead song titled, “To Lay Me Down”, it about the a longing to be able to lie with your love one last time. I played when I sat down to write this comment, it tears my heart out every time I listen to it.

White Crane · July 26

Joe, I’ve had the same thought about laying down beside my husband when he’s sleeping or spending the night with him. Like you said though, it probably won’t happen. I will look up the song. Thank you.

M1 · July 26

We tried it once-a nap- and it made me so emotional i had to get up. Couldn't stand it, too hard, and i didn't want to upset her.

White Crane · July 27

M1, I can only imagine. I think it would be very emotional for me too.

Mimi50 · July 27

https://alzconnected.org/discussion/comment/217008#Comment_217008

That sounds like good idea. Focus on building your career. My husband is still at home with me. But I know that there will come time where. He will be in MC.

annewilder · July 29

My DH is in skilled nursing now. I have actually thought of getting two hotel rooms. One for the two of us so that we can sleep together one more time and one for a caregiver who can help me with him. I don't know how reasonable this is, but lots of what you down you are living this crazy life doesn't make sense. Maybe I will do it. My best to you.

Jazzma · July 29

I had a similar experience when my DH of 31 years woke up with chest pain and was diagnosed with pneumonia. He went to memory care from the hospital, and though I brought him home a few times it didn't work for very long. I 'nap' with him now (watch him sleep while I am perched against him on the side of the bed) and it's very comforting. After six months I still cry whenever I talk about him, when someone hugs me, and now as I'm writing this. I wish you the very best that this can be — which is not a lot, but it's what we get. Be kind to yourself. This rips us all in pieces.

If I had only known

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