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.

549jb

Evertime I go visit my LO in assisted living it's takes a day or two to recover. It's just so sad. He asked me this week at lunch if I lived there? He says I look just like all the other ladies that are there. He asked me recently if the man at the table behind me was my "boyfriend"? These kind of interactions are so confusing (more so for him) that I don't want to visit. Then I feel guilty. He has one child that lives out of the country and no relatives in the area. I am IT….He lives in a beautiful environment (1 Bedroom unit) but MC is around the corner, I know because they have talked about it. Thanks for listening.

AlzWife2023

https://alzconnected.org/discussion/69390/respite-and-guilt

Four days may be your limit. I feel like you that I just can’t do things right now. After 18 months of full time caregiving, I took a nine day vacation when all three adult children stayed with DH. I could tell that they were all exhausted when I returned. I didn’t feel any guilt while I was gone. The only guilt I feel in general is towards my children because they prop me up.

My first six days were a blast, visiting friends & being a free, independent adult. I was burnt out the last three days and just slept in the hotel room. I considered coming home early. My younger son even suggested it.

When I came home I experienced a very strong reaction of just wanting to move on in life, to have my life to myself, to not have to caregive, not have to burden my kids any time I need anything, etc. It was a very difficult re-entry and adjustment.

It takes four of us to prop him up by propping up each other. The toll financially, socially, and emotionally is huge. It’s a beautiful thing to give care. Sometimes I wonder if he were not at home, in MC for instance, would he just fade away. Are we killing our selves to try to make things seem and feel normal when they’re not? Or is the care we provide improving his quality of life? Is the improvement in his QoL proportional to the reduction in ours?