Riding the struggle bus

j.l.m.

It's been 3 months since DH moved to an assisted living. I thought it would relieve some stress, but it hasn't. I am confident in the placement, the staff has been great. However, my husband has declined so much so fast. I fight feeling guilty all time even though I know it's impossible to have him home. I go visit almost every day, I just want to spend as much time with him as possible. This journey certainly takes a toll in so many ways.

On a different note, I had a very productive meeting with my state rep on trying to relieve the financial burden on the community spouse. She is open to putting a bill together, and hopes I can testify in chambers some time after the first of the year. We are meeting again in October to work on the bill. We'll see.

ronda b

What state are you from

M1

Jlm, there was a good article in the Washington Post today (9/6) about planning for the costs of long-term care (I'd post a link, but it's paywalled). It reminded me of something I'd forgotten- ten years ago the original Affordable Care Act legislation included a voluntary payroll savings plan for long-term care, but it got dropped in the negotiations because of questions about affordability. You might want to look up some history on that as you prepare for your meeting and I wish you luck.

j.l.m.

https://alzconnected.org/discussion/comment/222082#Comment_222082

Thank you so much M1, I will definitely look into it. I'm trying to do as much research as I can. California has changed requirements as of this this year. Asset limits have been eliminated, and eligibility is solely based on income. Being able to keep assets as a community spouse would surely lessen the financial burden.

Arrowhead

The chances are that he would have declined just as fast if you had kept him at home. Never feel guilty. You have been doing and continue to be doing a difficult job. You've done all that you can with what you have been given. You should feel good about what you have accomplished.

j.l.m.

https://alzconnected.org/discussion/comment/222518#Comment_222518

Thank you for your kind words. Some times we need a reminder, as hard as it. One day at a time…

sherryandwilliam

I worry when I have to do the same. The financial burden on top of the emotional one is so much to handle.