Respite and Guilt

CindyBum

Oh, this damn disease. I was re-reading the super helpful "The Cavalry isn't Coming" post again and remembering how darn true that is. I've been on my own with this for 4 years, though have gotten a friend and sister to help exactly one time each. And now, I got a sister and a couple of friends to come take care of my DW while I'm at a conference and then going to visit my 80year old parents for a few days. Could respite at least be free of the pain and guilt? Nope!

My DW is annoyed with her sister, like she's always been, and is super overwhelmed and worried about when I'm coming home. I'm gone for another week and her pain and my guilt of being gone is crushing me. I can't ever be gone this long again, I know that now. I can maybe work on a few days here and there, but nearly 10 days gone? Way too much at this stage. I can already sense how it will feel if I have to decide to place her and I know it will be even deeper and more painful that what I feel now.

Honestly, the first few days here in amazing New Orleans were wonderful. I ate my way around town and walked till I had blisters. To be alone, on purpose, was a true joy for me.

But, now it's been 4 nights and I'm stressed and worried and guilty all over again as my DW deteriorates without me around. Dang it!

charley0419

I feel for you , if I’m gone over 1/2 wife gets nervous, sorry to say 10 days way too long.

CindyBum

Way, way too long. For sure.

Jeanne C.

Sorry. I hate that your respite isn't actually restful. I'm glad you had a few good days (did you go to Mr. B's? The bread pudding is sinful). It's hard when we provide so much scaffolding for our partners.

I'm scheduled respite (by my husband's hospice team) in a couple of weeks and I'm terrified. I know I need the break. And I'm only taking a few days so I can go to my godson's graduation. But I know he's going to be a mess. I keep thinking it would be better to just not do it. But my cousin reminded me that he's going to get worse whether I take some time off or not and that I truly need a break.

So, try to enjoy your last couple of days there. Get that bread pudding. She'll be ok.

ButterflyWings

@Jeanne C. That part: "…my cousin reminded me that he's going to get worse whether I take some time off or not…" And yes, we truly need the break but the separation anxiety for caregivers can be fierce, for sure.

CindyBum

"Get that bread pudding."

I may have new life motto. ;-)

Thanks, all!

Dio

You need to take care of yourself, first and foremost! If you fall, what will happen to him? Guilt will always gnaw away at the caregivers as if we're not doing a "good" job no matter what we do. Having gone through this, I've come to realize that it is even more important for caregivers to stay strong and healthy.

Jeanne C.

https://alzconnected.org/discussion/comment/211074#Comment_211074

No doubt. I'm trying my best to do small things to take care of myself. This is a big thing. And, like most of us, I'm super anxious about it.