What do I need?

PlentyQuiet

After a rough week I put out word that there will be a familiar meeting in December after the college semester ends for my kids (19 & 21). I need time for myself and some way to ease the decision overload I have

DH has moved from stage 4 to early stage 5 and I need help. But with what? I don’t need errands run or groceries picked up. Some days those are our only activities and he likes to go. A day program? Sure, but at $900/month it is not feasible nor am I that desperate yet. In the future these will both be needed, but not yet

So I put it out to the group: what are the things, supports, assistance you received that were helpful? Any advice is appreciated, no suggestions too big or too small.

Jeanne C.

Respite. The biggest help for me was someone taking him out for an afternoon or staying with him so I could do something crazy like getting a haircut.

Have you looked into Medicaid rules in your state? I know every state is different, but, working with our elder law attorney, I've been able to get daycare and home health care covered WHILE PROTECTING OUR ASSETS. It turns out that with careful planning, longterm care Medicaid is possible.

Good luck with your family meeting. All the best.

StephWithFeeling

Respite is so important for me too. I try to take my spouse shopping sometimes, but other times I just need to have that time to not be negotiating his care with getting the shopping done quickly.

CindyBum

I'm in the respite camp as well. I had a two day weekend away from the house while some friends of my DW came to visit. I came back entirely refreshed. It reminded me that while I may not have the worst situation like many others here are currently facing, the weight of what I am doing -- emotionally, psychologically and physically -- was a lot more to carry than I had allowed myself to take in fully.

Now I look for ways I can get myself some free time away from being in charge of every little thing.

I also loved it that they cooked some meals and left those for us so I had a few days of just reheating instead of full on cooking.

I also had a day overlap with the two friends. I had them help me move some bigger items that my DW and I would have done together prior to her downturn.

mrahope

Let me add: someone to vent to (preferably that lives elsewhere). A daily text conversation with my two sisters who live out of town has been a lifesaver and perspective restorer. They can "see" things differently than I do. I would also suggest meeting with a therapist or counselor yourself, if you can financially swing it. I have found it eases some of the overwhelm.

Also, I agree about respite. My DS stayed with his dad for about 4 days while I went to a choir camp. I had forgotten what that much fun felt like. It was amazing, and even though it happened in July, I'm still grateful.

SDianeL

Respite care definitely. My daughter came over every other week to clean our little apartment. I decided to hire help for that. I'd rather spend fun time with her. My DH is Stage 5 going in to 6 and we no longer go to the grocery store. I order groceries and have them delivered. I would start a list of what you need as it comes to mind as things progress. Something you're struggling with. Fixing things around the house? Take the car for an oil change or to get washed? Making dinner for the 2 of you? Ask the family for ideas too when you meet.

M1

Suggest you call your local Council on aging to see if there might be any local grants or subsidies you might qualify for. Can't hurt to ask....

storycrafter

Through my grief/dementia support counselor I found out about a local program for seniors (and caregivers) in cooperation with a local university branch. Part of it includes a discount on exercise classes and/or personal trainer help. It's helping me with my own physical fitness. My bvFTD spouse refuses to participate, but it is helping me feel better physically and mentally. Working with the counselor has turned around the deep depression I was sinking into during the Covid shutdown. Her perspective and support have been invaluable.