Re: Respite

Crosscreek · May 16

Everyone tells me I need to take advantage of the respite being offered by friends - I have complied several times, however the fact that nothing is going to change with regard to caring for my spouse, especially at night. It’s only going to get more difficult and having an afternoon to do whatever for myself is like putting lipstick on a pig.

WIGO23 · 12:55AM

I think I understand. A few hours here and there does not relieve the core pain I feel as a caregiver. Does it help to be away? Yes and no. Sometimes just knowing I have to go back ruins the time away. Sometimes I feel a bit better for a little while. But there is no real escape from the reality of how hard this is and I am only two years into the journey.

RetiredTeacher · 1:03AM

https://alzconnected.org/discussion/73066/re-respite

That is true, nothing will cjange the prognosis but the ability to get out for 2 or 3 hrs and be just a normal person again, doing normal things you want to do without worrying about or caring for someone else can be priceless. It doesn't change reality but allows you to escape the confines of categiving for a little while and that allows you to show up all the rest of the time. You need it. Take the opportunity and thank your friends for the gift because it is priceless.

Timmyd · 1:51AM

If you are given the opportunity for respite, give it a try. Maybe it works for you, maybe it does not. What I have found on this journey is that I have to keep trying different things. The disease keeps changing so I have to keep changing my approach as well. Often, being in the center of the storm all the time, you don't have the best view of what is going on. Being able to step back occasionally can perhaps provide you better perspective and maybe allow you to make better decisions.

I really get annoyed by the friends and family who talk about respite like it is some type of game changing experience. It is not that at all. Respite is pretty small in the big picture. Ultimately, you and your PWD are on different paths and heading toward a different future. At least that is my goal.

SDianeL · 3:24AM

yes it does feel that way. I found that taking four hours once a week did give me the mental and physical strength to go on. Sometimes I just went to a coffee shop and enjoyed the quiet and sipped my coffee or sat and stared at the sky. Can you get help at night? Is your loved one on medication to help with sleep? What stage is your LO in? Could hospice help? Hugs. 💜

Biggles · 5:24AM

I agree I’ve tried a few times and got nothing out of the carers visits yet so I have put them on hold. I was so concerned and worried when I left for two hours, that my DH was being treated with respect and kindness I didn’t actually like the carers but had no choice. My DH is such a kind and gentle person he wasn’t happy to be left and wasn’t happy when I came back, he said he felt discarded. i felt terrible and selfish. I will try again perhaps when we have another downward spike. It’s so sad but I have nowhere to go anyway we’ve lost all our coffee drinking food eaten no friends.

Bridge4 · 6:24AM

Respite care can be frustrating in that you need to do twice as much work ahead of time to prepare for it, and then work twice as hard when you get back to set things straight again. However, it is so vital to sustain ourselves for the long haul. I notice little things- like my breathing pattern gets deeper and longer as I head down the road with that first feeling of freedom. That rich flow of oxygen to my brain just resets my mood and makes me feel young again! Unfortunately, all good things must come to an end, and that ride home just makes me tense up as my breathing goes shallow again thinking of the situation I will be walking back into. But that brief taste of freedom was worth it, and I can dream of future days when I will be free again.

Re: Respite

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