Tips for usefulness

southerngal41

Any tips/suggestions/things to do to not feel powerless against this disease as a caregiver?

Hope5757

Hi @southerngal41 -

It would be helpful if you could clarify how/why you feel helpless.

I’m sure there are members who feel the same for similar reasons.

I feel helpless because I often feel trapped. I then try to do some things that get me out of the house. That helps. My spouse mows hours and hours a week. Five acres. At least the mower is self propelled.

We both pray a lot.

Jeanne C.

It's hard not to feel that way. I find learning about his disease (FTDbv) helped a lot. Knowledge is powerful. I also find strength in doing what I can to advocate for him and make his life (and frankly mine) as easy as possible. I know some people on the forum find strength in religion. I'm more spiritual than religious so I find some strength in gratitude. I make lists for myself of things I'm grateful for (music, the sunroom my husband enjoys, etc.) and that helps.

southerngal41

I identify as a Christian but if I'm being honest, this has contributed to my bitterness. I know it's out of our control and I guess I'm trying to make myself feel less guilty for living away. I know that's selfish. I sporadically get involved with fundraisers and completed the biking challenge in March. We can't stop it or slow it necessarily but I feel like I'm just sitting and waiting for the inevitable.

Jeanne C.

Not knowing your husband's condition and progression, I can suggest that you look at "best practices" (you'll find some posts on the forum with a search). Some members have had positive results with diet and treatments to slow progression and preserve quality of life. I wish I could offer more.

jfkoc

While powerless over the illness you are not powerless over the care your give your loved one. Being the caregiver you need to be is a constant learning process. That we can help you with.

Hope5757

@southerngal41 -

Thanks for the clarification.

My SIL has the same feelings of helplessness. She wants to help her mom but lives out of state. Similar to your situation. I think there’s a lot of guilt there too. Guilt over not being here caring for her mom. And lots of guilt due ti a certain sense of relief.

Are you able to provide respite care on occasion? I promise you reliable respite is unbelievably hard to find. Especially from a family member who doesn’t have to be paid.