I'm finding respite to be hard on me

Jeanne C.

I took my husband to the facility hospice found for 5 days respite care. Red flags as soon as we arrived. I won't tell the drawn out story, but it was dirty and didn't feel safe so I took him right home. I spoke to his social worker and she made arrangements at one of their facilities (it was the backup option because it's over an hour away). The new place was clean and felt safe. I checked him in and have spent the last two days trying to relax and enjoy time with my family. But it's hard. A couple of years ago, he would have loved going to our nephew's graduation. He would have belly laughed at my sisters' stories. He would have been right beside me. But I feel lonely in a room full of people I know and love. I miss him, the old him and even the current version. This is what it's going to be like from now on. I'm a widow already, aren't I?

M1

yes and I’m sorry. It takes a lot of getting used to- if you ever do.

jfkoc

yes,,,,sigh

A. Marie

People who didn't understand why I didn't go full-on into grieving when my DH died a year ago didn't realize that I'd been grieving for the past 8 years, ever since the DH I knew and loved started slipping away from me. I can see that this is happening to you too, and I'm so sorry.

SDianeL

https://alzconnected.org/discussion/69567/im-finding-respite-to-be-hard-on-me

Yes, I know how you feel. My DH is in Memory Care and if I could I would visit him every day. I can't seem to move ahead with my life since he was admitted. I had chemo & surgery and now that I'm recovering I can't think of anywhere I want to go or anything I want to do without him. I feel like he's being slowly ripped from me. I'm going to attend the support group at the Memory Care facility to try to move forward. We will be married 39 years in December. Sending hugs.

Jeanne C.

Thanks all. It helps a little to have you validate what I'm feeling. I'm doing my best to rest and recharge a little. Sending everyone some strength.

wose

I’m so sorry. I was just sitting here reading that book “loving someone who has dementia” and reading this forum. Someone is the book referred to herself as “ a widow waiting to happen.” The author said “Grieving for someone who is still alive but no longer the person he or she used to be is Useful and Necessary for your well being.” It all rings so true.💜

sfrsythe

Blessings. I’m just starting out on this journey myself. I’m seeing that for myself too! Thank you guys for sharing the love.

mrahope

I feel like a widow, too. The sadness is bad, but the lack of understanding from most people about what it's like to have to place a spouse in MC is tough, too.

Beachfan

I am a widow, over a year now, and I agree with A. Marie. I grieved the loss of DH for 13 years prior to his passing as he slowly faded away, day by day. I am sorry you are having to experience this. He is gone; I miss him every day, but I have had plenty of time to prepare for and settle into a life of peace and contentment. There have been so many times I’ve wanted to share something with him or ask him something and the realization of the finality of his passing hits hard. I understand “heartache”; it is real, it is a physical pain. It will get better, I promise. It takes time.

Daughter of a Marine

Jeanne, my heart is with you - you have described what so many of us are living. It's one of the worst impacts of this hellish illness. My DH was diagnosed 12 years ago and progression has been slow, but he was under anesthesia for 5 hours 4 years ago and he has declined significantly since then. His enthusiasm and robust personality are gone leaving us with memories of the man who cheered at grandkids' games, loved to fish, play bags, horseshoes, golf and loved life. He now talks gibberish and often can't remember the names of his 4 kids and 10 grandkids When I look at my love, I see him but he;s not really there. I can no longer talk to him about our family, finances, etc., as I used to. I'm a widow with a living spouse. He's still here, but in all the ways that matter, he's gone. The grief can be overwhelming. God bless and strengthen all of us.

Dio

We know and understand what you're going through. It's a double edge sword. Just remember why you need this respite and do your best to enjoy this reprieve for your well being. Let the grief come but also let it wash over and/or through you. Only you shall remain.

ButterflyWings

@Jeanne C. Yes - I too, am a dementia widow. Already, though DH is still here. I understand how you feel with him in respite also.

You expressed my feelings perfectly: "I feel lonely in a room full of people I know and love. I miss him, the old him and even the current version…I'm a widow already, aren't I?"

fmb

I'm also a widow/not widow. No one who has not been through this can truly understand. As I wrote in the recent discussion about ambiguous loss and anticipatory grief, we are not even allowed to participate in the societal rituals of the grieving because the husk of our spouse is still alive.

Buggytoo

@fmb - "husk of our spouse" so aptly descriptive!