Advise on When to Retire

dananfrench

My 58 year old husband was recently diagnosed with EO AD and will likely go on LTD next summer. We are in good shape financially and his insurance will cover us until he is 65 at the employee rate (not COBRA). I am 61 and was planning on working until 65 but am now wondering if I should quit early so we can do some of the things we had planned for retirement like travel while he is still able. On the other hand, maybe I should stay at work, which I enjoy for the most part to keep my socialization up and avoid being stuck at home with him prematurely. He is receiving Lecanamab but his symptoms seem to be progressing rapidly. Any advise from a spouse who has been there?

JDancer

Are you eligible for any type of leave that would allow you to takes trips or check off other bucket list items?

It's hard to know how things will progress, so I would suggest doing what he can now. After our last road trip I realized our travel days are over. I wish we had done more while my DH could still travel.

I recently retired (at 66) due to my 64 year old husband's progression. Fortunately, I can get out for a few hours each day, because socialization is so important. A big piece of being a caregiver is caring for yourself. Keep your needs in mind as you make important decisions.

dananfrench

I'm so sorry to hear your husband is no longer able to travel. I hope you can find a way to do some short trips on your own or with friends.

Great advise to explore leave options. I know I can use leave for medical purposes but I'm not sure about unpaid leave for travel. I could, in any case, use all my vacation before making an irreversible decision on retirement. That would let me test the waters on how well my DH tolerates travel.

We recently traveled to Norway and I was shocked by how anxious he was in airports and during the inevitable travel disruptions. The cruise portion was wonderful! I can see that I will need to modify how we travel to minimize his stress - direct flights, cruises, and road trips with longer stays at each stop rather than Europe in 10 days.

Denise1847

If you can do both keep your job and do the travel, I would highly recommend that. You will find that if you DH is progressing rapidly, your travel will become more difficult. I wish we had done more and now it would not be enjoyable. Also, if your DH is progressing quickly, it won't be long before you will not be able to keep him at home alone. I wish you all the best.

JDancer

Cruises are a good option since you're in the same room each night. They're many nice European river cruises available.

Many say medications do a good job reducing anxiety in their LOs, but that isn't something we've tried.

JoseyWales

I was in my mid 40s and a stay at home mom when DH started having trouble. Took years to get him diagnosed, and I went back to work (teacher) to make sure we had an income. I'll let you know how things went for me, to maybe help you think a little on your decision.

In the earlier stages, work was a great escape for me. DH was ok home alone, I had something else to think about than his decline. In the midstages, it would have been great if I worked part time. DH was bored at home, and unable to keep himself entertained. Then came the stage when I worried about him being safe, and had to bring in a patchwork of people to be with him. That's when I would have quit work if I'd been able.

wizmo

I asked the same question here 6+ years ago and got mixed answers.

DW was diagnosed in 2017, we were both 53 now 59. She had left work 2 years earlier due to unrelated circumstances, expecting to work again as Alz was not really evident at the time. Of course had we known, some different decisions could have been made.

If you retire, it may be quite difficult to un-retire. For many people the financial impact forces one to keep working. Before you make a big change, definitely get both legal and financial advice. Even if you have employer disability income+benefits, you should also be able to get social security disability insurance which effectively accelerates age 65 benefits. Medicare will activate 2 years after SSDI. In our case SSDI was initially denied but with help of a lawyer won appeal which took nearly 18 months. We received retroactive payments and the 2-year waiting period set back to initial diagnosis date.

At a minimum you should be able to get family medical leave (usually without pay) for short absences from work without losing your job. Depending on what relationship you have with your employer, they might be more supportive than you expect or this might set you on a course to be terminated at first opportunity. I have seen both.

I was able to continue working full time for about 2 years through early stages. My employer was exceedingly generous in allowing me to go through work reductions, starting with 4 days/week then tapering off to a few hours a week, while still collecting 80% salary and all benefits. That happened over about 4 years and eventually I got involuntary separation due to a downsizing effort, also with generous severance and 18 months COBRA. We are financially well off; financial advisor projected ability to self-pay for above average cost memory care until age 99 and not leave me in poverty. I look at the statistical life expectancy of a person entering stage 6 and know her end will come much sooner.

In the first year after diagnosis we did a lot of grieving for the nice retirement future we worked so hard to achieve and will not see together. We also got involved in some alternative treatments that gave a glimmer of hope, maybe slowed progression a little, but ultimately did not stop the disease. During that process we also made plans to enjoy some of the time we had left - a few special travel destinations, extended vacations to ski every day for a few seasons, visit family, quality time. Accelerating decline has us doing much less and now contemplating memory care.

As you go through all of this try not to lose yourself as you are losing DH. Several people on our care team have been telling me "do what is best for YOU" i.e. don't sacrifice too much of yourself along the way. This disease too often claims two people as the caregiver devotes so much of self trying to serve their LO.

Keep coming back here; this group has been the single best resource for me through the journey which we are still on.

jfkoc

Carpe diem! No one knows what tomorrow will bring.

BPS

I retired in April of this year to take care of my wife. She needs some one around but sleeps a lot so there is a lot of quite time too. Even when she is awake we can't really have a conversation. She used to like to travel but it is too much for her now and she wants to be home. Work and family has always been my focus. What I would have done sooner is to develop some other interests and a hobby that can be done at home in the quite times to help keep my mind occupied.

Lgb35

We are both still working. DH is and has always been a workaholic which has provided next to no time for vacation. Our youngest son lives out of state so we have been making frequent trips to see him although DH works the whole time we’re there. I am only 53 and plan to work as long as possible. I am unfortunately aware I will be going into retirement and beyond alone which is scary enough without adding financial struggle as well. I work from home and I am stockpiling my vacation and sick leave now. I also have the option of FMLA if needed. DH has no benefits at all through work so it is all me.

MN Chickadee

Unless you actually want to retire I would find a balance between both if it were me. Use up any vacation or PTO. Eventually you could take FMLA time off if needed. You do want to try to do the bucket list things now as that window may close for him very soon if it hasn't already. You may find some trips or experiences can be modified to accommodate his current state. I'd hate to retire and find that my spouse had progressed beyond doing those fun things and now I was just out of the job I liked, income, mental outlet, socialization etc. Hard as it is, picture yourself without him in 1-3 years though hopefully you get longer. EO can go very fast for some. My mother with EO lived with it for 15 years but that is pretty rare. Travel would have been possible for maybe the first 5 years of that. I know many who have gone downhill extremely fast after diagnosis. Balancing the long term and the short term is important. Doing financial planning for long term care with an attorney now is also important if you haven't yet.