55-year-old Early Onset: advice about WHEN he should leave work??

Mollykazoo

Hello,

We are wading through so many stressful planning sessions these days. Currently our BIGGEST confusion is when/under what circumstances should my husband leave his job? He's only 55 and in the early stages of the disease. We have three kids living at home (21, 18, and 11) He's a candidate for Leqembi, which—if our insurance pays for it— I'm guessing might extend this early "fairly/vaguely capable" cognitive phase. SSDI will replace some but not all of his income.

He works for a large university and I've already spoken to the HR department to inform them of his diagnosis. I've also begun to fill out the (paid) catastrophic leave paperwork. My husband currently has over 200 hours of sick & annual leave built up, which he needs to exhaust before he can use the 6 months of paid catastrophic leave that he will be eligible for based on his Alzheimer's diagnosis. Unlike some other spouses on this forum, my husband is not terribly attached to the idea of continuing to work! He finds work stressful—probably partly because the work is becoming more difficult to do effectively. Also, he's never really derived an identity/sense of meaning through his work. He looks forward to not working and expresses a desire to stop (do laundry, garden, play guitar, spend time with our kids) but he has mixed feelings because he doesn't want to add financial stress to the situation. If the time my three kids and I have with him as HIMSELF is limited, I just assume have him less stressed out and enjoying life by having him begin to exit the job now.

Obviously NOBODY can predict the progression of this disease…which is so difficult. My fear is that he actually might have more time to contribute to our financial situation by working and I hate to squander this early stage…I wish I had a crystal ball.

What framework/factors did others use to make this difficult decision?

Molly

M1

Hi Molly. I think it's prudent for him to stop working now. Early onset tends to progress more rapidly. The last thing you want is for him to get fired for cause, which could cost him all of his benefits.

II know you're worried about the finances, and i hope talking to the CELA will be helpful. Sadly, there isn't much other help for the long-term costs besides Medicaid (i think that was your question on your other thread). At some point, it may be worth checking with your local Council on Aging to see if there are any local programs you might be eligible for, and you may want to find out what care homes near you accept Medicaid.

It is indeed terrifying. So hard to balance trying to think ahead and taking one day at a time. We're with you....

Belle

Molly my DH also has early onset of something (not yet fully defined by his medical team) and it was very difficult to get my DH to leave work. I don't think I've shared this but my DH was under investigation at his job for something he said to another employee. His lack of filters when speaking is a symptom of whatever is wrong with his brain and he is completely unaware that he says inappropriate things. Anyway, he didn't tell me about this for a long time and then he thought he resolved the issue but later I came to find out they were working on disciplinary action against him. It could have cost him his job and his eligibility to retire. It took me another 5 months after this all blew up to convince him to retire. He still thinks he did nothing wrong at work (I'm 100% sure he did based on what I see on a daily basis). I guess my point is leaving work sooner is probably better than later for most people with EOAD but I know it's a huge financial hit for most.

Mollykazoo

Thanks for the insight and perspective. I am tempted to encourage my husband to leave work…especially because we have so much paid leave built up. I'm wishing you both the best…it's scary to think about what is down the road and reading these forums gives me a mental image that I'm not always ready to contemplate. BUT, it's so reassuring to feel less alone in all this.

I appreciate the time you took to reach out.

Molly

Marta

Molly: another issue to consider is liability. If your DH’s work in any way could result in a lawsuit, it would be prudent to stop working now. My husband, a physician, stepped down the day after his diagnosis, because of the tremendous liability for him, and for me, if I allowed him to practice medicine when I knew he was impaired.

SSHarkey

Molly, I agree with that he needs to leave, the sooner the better. This will be a very fast transition, and you need to be able to spend as much quality time together as a family that you can.

GothicGremlin

@Mollykazoo I'm so sorry you're having to make these plans.

My sister was diagnosed with early onset at age 59. She took early retirement and I'm glad she did. Prior to her retirement she had told me that she was upset that she didn't get the promotion that she wanted. I didn't know why she didn't get it back then, but I do now - she wasn't working up to her usual high standards. Tasks weren't completed and she was struggling with others. She could easily have gotten fired. Early retirement meant keeping her pension. Without that I'm not sure how we would have afforded memory care.

Things to think about.

dayn2nite2

He should leave now and use his benefits. You don't want to delay because this increases his risk of doing or saying something inappropriate/just plain wrong and being fired, thereby losing his benefits. My mother barely missed being fired - there were issues at work that she never disclosed (and probably didn't care about) but if she had been fired, her health insurance, short-term and long-term disability would have just been gone.

Mollykazoo

Thank you all for your feedback. A quick follow-up:

We decided to apply for leave which required some convincing on my part. He was/is stressed out by the fact that the SSDI will not equal his current pay—it'll be about $400 short/month. Since he does not see his deficits clearly, he has been convinced that he's capable of continuing work. Despite this, I convinced him that we will manage somehow and that he will enjoy his days so much more without the stress of working. His last day of work will be May 24, which is also the day our son graduates from high school…GEEZ! There was no risk of losing pension, since he has only been at this job for 2 years (and would have had to have been there 10 years to be vested). However, he was becoming more and more stressed by work and I suspect he was making mistakes.

Building a big vegetable garden in the backyard that I hope will provide him with something to do. We'll see!

SSHarkey

Molly, I am so relieved to hear that he has agreed to this! Keep up posted! We are all here for you! SSH

PlentyQuiet

Molly, when DH received SSDI our youngest was still young enough to receive benefits as well. This helped to cover the shortfall in income. Please don't forget to ask about benefits for dependent children

Mollykazoo

https://alzconnected.org/discussion/comment/209306#Comment_209306

THANK YOU for this tip! I'm really grateful you mentioned it. One question, are these benefits for dependent children still acquired through SSDI office? Or some other agency?

JDancer

Perhaps the $400 shortfall won't be as significant as you fear, depending on expenses associated with his job- commuting, clothes, lunches- that will no be there.

PlentyQuiet

@Mollykazoo the dependent benefits came through the SS office. When DH was approved the person who had our file got us started with an application for our son. Really helpful

Mollykazoo

https://alzconnected.org/discussion/comment/213322#Comment_213322

yes. good point! The reality is that EVERYTHING is in flux right now and there are so many unknowns. We have sort of vague anxiety about many things right now…just hoping it all works out. thanks!

dayn2nite2

I wanted to add that because he doesn't believe he has the deficits he really does have, limiting the information you give him about finances will help you move into this new period in his life.

I would tell him that somehow you made an error and there WON'T be a deficit if he goes on disability, and figure the shortfall out on your own. You will find that too much information gives him things to latch on to and he will be resistant to doing what is actually best for him and your family.

Regarding finances, big decisions and plans for the future, you are not in a marriage of two anymore, it's you using your own best judgment to navigate this disease and any information given to him needs to be comforting and reassuring. I'm sorry to tell you that, but you are the CEO of the family now and he does not have the ability to see the reality of his impairment.

Mollykazoo

https://alzconnected.org/discussion/comment/213497#Comment_213497

Thank you for your insight. You are accurate! I've definitely learned this the hard way…to be honest, my DH has anxiously latched onto and endlessly repeated worries of financial insecurity for YEARS. It's the primary reason that I took charge of finances in the early years of our marriage—out of necessity, since he was driving me INSANE with his anxiety. I wonder now how much of this was an early sign of the AD…? and how much of it was his anxious disposition? It's impossible to tease it apart at this point. But, the reality is that I've been making the majority of daily financial decisions for years. We used to discuss all BIG financial decisions, but now I realize that those days are gone. It's lonely.

Good news is that I was able to tell him the news about our youngest being eligible for SS support and that brought him incredible relief. Even more of a miracle, he REMEMBERED that I told him, and brought up later how relieved and happy he was to hear it.

This is all such a slow, sad road…I feel the depression and darkness seeping into our house and my heart is breaking for my kids who are heavy all the time these days. :(