What are options for working spouse?

j.l.m. · April 15

First time posting. We are 3 1/2 years into my DH Alzheimer's diagnosis. DH is 66, I'm 53, working full time, and and have a child in college. DH just came home after a month long hospitalization for med adjustments due to aggression. We have seen agitation and some aggression at home, however, he had an extreme act of aggression at his day program. They are willing to take him back, but I am not convinced that it is going to work out. DH is already expressing wanting to stay home with me. Private pay MC facilities are extremely expensive, home care is not covered by insurance, and I do not have family members to take him during the day because they all work too. What do people do when a spouse still needs to work? Quit?

M1 · April 15

Welcome to the forum. My partner is 15 years older than I am so I understand the age difference. I had the luxury of working part-time for a long time while she was still able to be alone (2015-2020), and by the time she got really bad I was able to work from home when the pandemic hit (fortunate timing). She had to go into memory care two years ago because of threats of aggression against me and inability to find help at home (we live in a rural area).

If those are not options, you are probably looking at needing to place him. Have you talked to a certified elder law attorney about qualifying him for Medicaid? It's not ideal, but it's the only way in this country to fund long-term care if you can't afford indefinite private pay (my partner's MC is slightly over $10,000 per month, but she is 83, not 66, and is at least 12 years into her dementia). Depending on your state, some states will actually cover memory care or care homes; others (including my state) will only cover nursing homes, but they will also cover some in-home care to keep people out of nursing homes.

A certified elder law attorney in your state will know the ins and outs of what's availalbe; you can find lists by location at nelf.org. Your local Alzheimer's Association Chapter and Council on Aging may also be able to help. Did the social worker at the hospital have any worthwhile suggestions or input? They are also usually pretty knowledgeable about the local programs out there.

You have come to a good place for advice and support. I hope this helps, others will chime in.

Jeanne C. · April 15

Hello - we were in a similar situation (DH 65, I'm 54). I struggled with working and caring for my husband. I hired a CELA to go through the process of getting him qualified for longterm care Medicaid so we could get help. It varies from state to state, but we were able to protect assets, shift everything to my name, and get so many benefits put in place for him, including 40 hours of home health aide coverage. But, I will admit that we struggled finding good aides and he also had to leave the day program after an aggressive incident. I ended up leaving my job because I couldn't rely on the care. Right now we have an excellent aide, so I'm able to be away from the house. I've been picking up project work, but since my husband is now on hospice I'm waiting on starting a new full time job. Anyway, long story to say, if you can get him qualified for Medicaid, you should be able to get home health in to help. Others will chime in, I'm sure, to talk about other options like PACE. All the best to you and your family on this journey.

CindyBum · April 15

Hello….I am struggling with that same question. I'm 15 years younger than my DW with dementia, so working full time because we need the money and I need to build for my own retirement. Well, also because it's my lifeline to the "regular world" that isn't so small and confined to where my DW is currently living with her dementia. She's stage 4, almost 5, but still relatively present. So, I'm missing hanging out with her while she's still sort of here, but all she ever wants to do is sit there and watch tv. I'm torn between myself and her constant pull for me to retire…retire to what? A few moments in the day when we take a walk and the rest watching every episode of "Friends" or "NCIS" again? I'm wording this so harshly, but it's such a struggle for me to try to hold onto a bit of me so I have some left after the disease progresses to it's only end.

I finally told my boss at work and she was quite supportive of me working from home, which I now do 2 days a week. I'll add more as this moves forward, but don't really know how long I'll be able to work, even at home. I manage a staff of 15 and they know too that when I take off, I'm going to spend time with my DW. All and all, I have it quite good and yet the pull between myself/my work and my DW is constant.

Getting two days at home to work has really helped me feel better about my choice to continue working. It hasn't really slowed down my DWs requests for me to retire now, but it has given me a measure of peace in my decision. Wish I had something more helpful to share.

sandwichone123 · April 17

My spouse and I were both in our 50's when he was diagnosed. I was up for a promotion to a job I had wanted for a long time—a job that pays well and gives me a sense of satisfaction like I am helping make a difference in the world. I tried a day program for my dh, but he hated it and the hours didn't really work. I considered quitting my job, but did not want to give up the income and take on a full-time caregiver job that I am not well suited for. I also did not want to find myself a few years down the road with no current experience and no professional contacts.

Long story short, when he could no longer be home alone, when he could no longer take a walk by himself, I placed him. It was rough for a week or two, but he got to know the routine and the people and within a couple of weeks I could take him out and he was content to go back because it felt like home to him.

For a while I was making up the difference between his retirement and disability income and the cost of his care, but now I will be using his retirement savings to make up the difference.

CStrope · April 17

It's been 2 weeks since I placed DH for this exact reason. I am 61, he is 69. I worked from home and took care of him since he was diagnosed 3 1/2 years ago with FTD. We started figuring out there was an issue when I was home because of the pandemic, and he was diagnosed shortly into it. So I worked from home for 4 years, and just now am back in the office. I took the month of March off with FMLA benefits to help me decide whether I should quit my job and stay home with him, or place him in a MC and keep working. After the first 2 weeks of not working and only caretaking, I knew I needed to place him. My job is very important to me, and I had to admit that he needed better care than I could provide. It was a hard decision, but definitely the right one.

j.l.m. · April 18

Thank you everyone for you insight. I am going to give a new day program one last shot. This new one is specifically for memory care so I hope it's a better fit for DH. If not I will use the rest of my FMLA and make the hard decision to quit or place him.

CStrope · April 19

https://alzconnected.org/discussion/comment/206230#Comment_206230

The FMLA time off was a really good option. It gave me a lot of insight and help me decide what was best for our situation. Being able to focus solely on DH helped me see different issues that I was overlooking because my attention was divided. Good Luck

What are options for working spouse?

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