Reluctantly planning to retire

[Dogpeace]

Hi Everyone! First post here to introduce myself. Wife and I are both 57 and have both worked and saved diligently over the years. I'm still working in software sales, and intend to for as long as I can, but I fear retirement is coming sooner rather than later... I'll explain.

Around mid-2017 my wife started getting confused at work, unable to follow instructions. She had been a star performer in her field (auto financing) for over 30 years but could no longer understand the job. She resigned and filed for SSDI.

Fast forward to today, after initially being misdiagnosed it's now confirmed she has early onset dementia, and is in the middle stages. This could last anywhere from 2 to 10 years before progressing to the most severe stage. She can do most of the basic things but needs guidance throughout the day. I have to help her get dressed, change the channel on the TV, make sure she gets her meds, etc.

I work from home mostly, and can juggle helping her with my job duties, but it is getting more and more challenging. When I have to travel I have to make special arrangements for others to cover for me.

Sooner or later I have to make a choice - either A) hire out her care and keep working; or, B) retire and care for her myself. I've chosen option B, because I think it's the best for her. I am conflicted because I love my job and did not really intend to retire before 62 to get our savings to the maximum we would ever need, but life kind of gets in the way sometimes.

We're lucky to have saved $1.5 million, mostly in tax-deferred accounts but about $100K of that is in Roth and there are some small taxable accounts and HSA accounts too.

I figure we're currently spending around $80K annually on our expenses (still have mortgage) and this amount includes taxes we would incur on our IRA withdrawals. Using the 4% rule, I'd like to withdraw $60K annually from IRAs and the balance will come from SSDI.

Since I am still working I am also still trying to validate everything... my expense estimates, her care (can I really do it myself?) and what will I do with myself when I don't have my job anymore? Not looking forward to the day I have to quit but this disease won't do anything but get worse. Not many guarantees in life, but dementia is guaranteed to progress.

Well, if you read this far, thanks, and I promise I am really a positive person, and hope to contribute to lots of interesting discussions here on the forums soon!

 

[ut2sua]

OP, I am rooting for you. You are in a difficult situation, but you are very courageous in your thinking for both DW and yourself. If I were you, I would choose to cut expense if possible (to further increase margin for an even more successful FIRE), but spend time to take care of DW. While still working, get the best out of your work benefit (dental, medical checkup, max out on 401K/match etc.). May be asking/volunteering for a separation package to add to your $ account. Finally, you would never know, miracle does happen every day. Wishing you all the best.

 

[Souschef]

Dear Dogpeace,
Our hearts go out to you. I was caregiver for my brain injured wife for 12 years, and DW took care of her father who had Alzheimer's.
It can be very stressful for both of you, and you have to take care of yourself too. Taking care of someone 24/7 is extremely stressful, and I know there are respite care programs in some places. I was just at a hospice gathering where they gave a talk on all the services that were available. It might be worth your while to investigate these before making a final decision.

I wo*ked and hired a caregiver. There are some tax benefits under dependent care, but I think it is only a $600 tax credit.

 

[RunningBum]

So sorry, Dogpeace. This came in my family too, in their 70s rather than 50s, but there's no age at which this is easy to deal with. Good luck to you. Find someone you can vent to, here if needed, so that you can stay patient with DW and remember that it is in no way her fault that her memory is going, and that even if she asks you the same question 4 times in 10 minutes, it is not intentional.

 

[mystang52]

Best wishes for you and your wife. No words of wisdom from me, but I have one suggestion. Please take care of yourself as well. I imagine being a caretaker would be mentally and physically taxing. Maybe you can hire someone for a few hours a day to give you some free time.

 

[Dogpeace]

Thanks for the replies! I do know this will be a challenge and have already started reaching out for local dementia support groups and plan to attend regularly.

If you look at cost estimates for dementia, it can be really scary looking at those big numbers. The difference I see in my situation is that usually, dementia strikes people in their elderly years and a spouse is often too elderly to take on the caregiver role, plus children are still working and often can't do it either. So there is not much choice but to pay for the expensive care.

Since I am relatively young and strong I know I have the physical strength, but it remains to be seen if I can handle the mental part. But if I can do it myself, I won't have to cover those huge care bills. If not, I can always return to work after she moves to a facility, to help cover the cost, I suppose. We will see.

 

[Midpack]

Best wishes to you and your wife. There’s a special place in heaven for people like you. I’m sure you’ve thought of it, but is there any way you can hire out helping her and see how it goes before you pull the plug at work since you enjoy it? Maybe part time or less travel also? If it doesn’t go well, you can go with retiring —- and you’ll be at home to see first hand how it’s going and drop the caretaker quickly if needed. With what I know about early onset dementia from a friend in the same situation, you will have to have help at some point down the road. As noted above, take care of yourself too, it won’t help either of you if you’re overwhelmed.

 

[Bryan Barnfellow]

During many of the 35 years of our marriage I was the primary member of the support group for my wife, who had an emotional illness. I really understand the planning, networking and worry that comes with traveling for work while she is left at home.

One of the most important things I learned had to do with the inevitable frustrations that accompany care giving of someone you love: It is this: always try to remember that the illness descended on both of you, on your marriage. You are both on the same side, fighting something external that neither of you asked for. Also, I have found that when circumstances required it, I seemed to have a lot more inner resources than I believed.

Stay courageous, Dogpeace. Stand by her in her battle. Use this group as an extension of your own support community. I, for one, stand ready to lend my ears and add any advice I might have when you ask.

BTW, when my wife's father...a noted professor...was diagnosed with dementia, someone recommended the book, "The 36 Hour Day" to us. You might take a look too.

All the best,

-BB

 

[MRG]

My empathy. I watched my DM with dementia and DF her caregiver. It's a crappy disease. Give yourself the freedom to take care of you. It's difficult for many people.

You might check with an eldercare attorney to discuss future legal options. State laws are very different and it's a complex problem. Best wishes.

ETA: Another recommendation for The 36 Hour Day.

 

[Jerry1]

My sympathies. MIL has Alzheimer’s. DW and I thought we could care fore her, but she started running (walking fast) away and we Had to have her put in a memory care unit. The comments above reflect that this is way more common than people generally believe. Accept the help that you’ll need.

As for your post/situation, I agree with Midpack. I’d try to keep your job as long as it makes sense. Also, you made the comment that if needed you could go back to work later. That may be true but don’t discount age discrimination. It’s hard to go back to work once you’ve left the workforce and aged. Best to you during these hard times to come.

 

[Hermit]

I helped a very good friend's wife move him into a alzheimer's facility a little over a week ago. He was diagnosed with early onset alzheimer's over 11 years ago. He had been going down hill all those years but doing ok until about the first of the year when he ended up in the hospital with low saline levels. He recovered from the low saline, but it took what was left of cognition. There are two points I want to address here.

The first is that his wife was his sole support for those 11 years and they were good time in a lot of ways. They went to alzheimer's meetings with others in the same situation in the early years. I think that helped them figure out how things would go in general. They went out with friends and family quite often and enjoyed their retired life for the most part. They traveled when they could including a trip to Alaska 3 years ago. That trip was one thing he could remeyrmber.

The second point was that the wife was not well prepared for the day he was placed in the alzheimer's facility. They did have medical and financial POA's set up which really saved her bacon. This last couple of weeks has been a mad scramble to get the finances and legal issues figured out along with deciding if the facility he went in to was the right one for him and for his wife. It is all starting to get some clarity for her now.

Bottom line for all this, at least from my perspective, is enjoy the life you have together and make sure your long term planning helps you understand and prepare for the future as much as you can.
Good luck!

 

[Midpack]

Also, you made the comment that if needed you could go back to work later. That may be true but don’t discount age discrimination. It’s hard to go back to work once you’ve left the workforce and aged. Best to you during these hard times to come.

+1. For most career paths, resuming after a few years out, especially seniors, is nearly impossible.

 

[pb4uski]

OP, so sorry to hear of your situation. I have a childhood friend who was diagnosed with early onset dementia a couple years ago in her early 60s and am aware of the struggles that she and her family are going through. It's awful. When we talk I can almost see her struggling to convert her thoughts to words... it is sad. I also have an aunt who has dementia and my uncle is my hero for how patient he is with her.

I see you work from home. Would it be possible for you to work part-time? My former employer was generous in allowing part-time work. I was basically a % of everything... so 80% of hours for 80% of pay, 80% pay on holidays, 80% of vacation, etc... the only thing that was 100% or nothing was health insurance... if you worked 50-100% you got the same employer subsidized health insurance... less than 50% then no health insurance... so as a result there were few under 50% part-timers.

Also, have you run your situation through FIRECalc? With what you have plus SSDI and SS later, you mght be close enough to retire.

 

[caninelover]

OP, I just want to say that I think you are a hero. Your love for DW comes through so clearly. My only advice is to follow your heart, and be grateful that you have the resources to do so .

I figure your wife loves you as much as you love her. What do you think her choice would be?

Whatever your decisions, I think you are a hero and your wife is courageous. God speed to you both.

 

[Bryan Barnfellow]

OP, I just want to say that I think you are a hero. Your love for DW comes through so clearly. My only advice is to follow your heart, and be grateful that you have the resources to do so .

I figure your wife loves you as much as you love her. What do you think her choice would be?

Whatever your decisions, I think you are a hero and your wife is courageous. God speed to you both.

+1000

 

[Dogpeace]

Wow! So many heartfelt replies, and such great advice. I can tell I am not alone here. I'll try to reply to as many posts as I can here.

... is there any way you can hire out helping her and see how it goes before you pull the plug at work since you enjoy it? Maybe part time or less travel also?

Yes I am looking into that now. I have to start calling around and see. I don't know if a service would want to serve someone who only needed a day here and there... I imagine it would be better for them if there was a regular schedule but I'm not there yet. I've also thought about stepping down in responsibility instead of fully retiring. First step, cut back on travel. There is one lady on my team with young children and she rarely travels, so I suppose it is possible to request that change. Part time is also something appealing later on.

One of the most important things I learned had to do with the inevitable frustrations that accompany care giving of someone you love: It is this: always try to remember that the illness descended on both of you, on your marriage. You are both on the same side, fighting something external that neither of you asked for. Also, I have found that when circumstances required it, I seemed to have a lot more inner resources than I believed.

I believe this! There is indeed a love that is deeper than I imagined. The marriage has changed... it is no longer give and take, 50/50... the idea of "love" has changed. It is very one-sided now, but it only takes one look in her eyes and I am good with our relationship as it is. I am blessed.

You might check with an eldercare attorney to discuss future legal options. State laws are very different and it's a complex problem.

Yes, excellent point. We actually did this. After getting our wills, POAs, etc. done with the family attorney, I researched and met with three elder law attorneys, even hired one for a consult. Bottom line: while there are some things that can be done with trusts, etc. to protect assets, at least in NC where we live, the requirements were more than we were comfortable with at age 57. Essentially it would mean either cashing out IRAs annnd paying huge taxes, or permanently annuitizing them, and irrevocable trusts transferring everything to the kids and hoping they would gift back to us as we needed it. Plus it would require probate when one spouse passes. Too many strings attached for us, but for some there are asset shelters available.

I’d try to keep your job as long as it makes sense. Also, you made the comment that if needed you could go back to work later. That may be true but don’t discount age discrimination. It’s hard to go back to work once you’ve left the workforce and aged.

Yes very true, and other posters agreed with that. I'm fortunate in that my job prospects rely on my keeping up to date on technical matters, so age is not so much a factor, but if I do retire then I will inevitably get rusty on the technical knowledge (it never stops changing and only changes faster over time) so it may be really difficult to get back up to speed.

They traveled when they could including a trip to Alaska 3 years ago. That trip was one thing he could remeyrmber.

We took a cruise in October. I knew it would be our last, and we dearly love to cruise. However it was stressful on me. We had a good time but it was not the relaxing experience it could have been under normal circumstances.

Also, have you run your situation through FIRECalc? With what you have plus SSDI and SS later, you mght be close enough to retire.

No, I am not familiar with that but will Google it and find out. I am hopeful we will be financially ready to retire when the time comes.


Thanks Everyone!!

 

[wmc1000]

Dogpeace, the depth of your love for your DW is truly heartwarming. Hopefully when you get a chance to put all your information into FIRECALC.com it will provide you with some peace of mind with regards to your finances. Best wishes for you both.

 

[YakGrl]

I understand the stress and exhaustion that you are under.
I retired last year as I was caregiving to both my sister and mother for several years. I had hired assistance and continued to work for several years, but a combination of many years of planning for retirement, changes in ownership at my company and the final critical stage of care for my sister that pushed me to make the decision that the time had come to retire.
I haven't regretted the decision to retire and I think the timing was correct for me.
Please know that if you want to continue to work, there are services that you can access and /or hire. There are hourly "Senior Helpers", respite care services, transport services, housecleaning services and many others. It is a big job to find these services but they do exist.
Please consider if you should file FMLA to assist you in taking the time needed from your job while continuing to be employed as you make your decision on if it is time to retire. I considered doing so as I have had several employees use this over the years.
Once I retired I decided that my new job was making sure my health was good so that I could continue to help my family. I have made sure that I have time most mornings for several hours to exercise and handle my needs before I help others.
I was very glad I decided to retire as I was able to be with my sister more in her last few months. She passed away several months after I retired and the last months were mostly in medical crisis care situations. I continue to help my mother.
It also helped a lot to talk with several friends who are also in senior caregiving situations with family and discuss their struggles and share tips on resources. If you don't have similar friends to reach out to, there are groups usually in the community associated with churches or hospitals that you might want to join for similar support.
The journey of caregiving for seniors is exhausting and stressful, but caring for others is one of the most important roles we have in life.
I hope that you might find some of this useful for your situation and know that you are not alone in dealing with many of your challenges.

 

[Golden sunsets]

Dogpeace; Sorry you and your DW are facing these challenges. Have you considered a facility that functions as a Day Care for those with Alzheimers? Your DW would attend the facility during the day only and I imagine that the pricing is flexible if you don't need 5 days a week. That would enable you to continue to work, and also be a bit of a respite for you and would place her in an environment where she interacts with others during the day, a good safe environment for her, and she would be with you at home during non work hours?

PS Mom had dementia and passed away last month. She was nearly 95 and struggled with the illness for 2.5 years. It is a very hard disease and in many ways is worse for the family member than for the patient. Take care of yourself.

 

[MBAustin]

Dogpeace - it warms our hearts to see members reach out to others in this community for help dealing with difficult situations like this and to see so many people offer support, encouragement, and ideas. I'll echo other comments that you are to be admired for your attitude and for devoting your energies to your DW.

Regarding occasional home help, it is definitely available. DH needs some assistance when I travel and we have an agency that is very flexible and responsive that provides someone only on the days/times needed and I can call them just a few days in advance if necessary (although I usually give them about 2 weeks heads up). Keep looking until you find the right agency that you are comfortable with and that meets your needs. Even if you retire, you'll occasionally want/need to be away so the work to find them will be a good investment.

 

[pacergal]

OP--
My heart goes out to you and your wife, as you take this journey together. As others have mentioned, it is important to take care of yourself as well. You know your finances, so only you can decide if the time is right to stop employment now or not.
Have you checked Care.com or similar companies for part time help? Something like that may give you the boost needed to maintain some employment if you desire, along with some respite if you just need to get out of the house for a bit for coffee or to clear your head.
Caring for someone you love is challenging, and rewarding at the same time.
Take care and know the forum members are here for you and wish you the best.

 

[Mdlerth]

Sainthood: the toughest job you'll ever love

I don't have much to suggest that hasn't already been said, although it sounds you already have been doing a thorough job of advance planning. Hang on to the paycheck as long as you can manage it because once it's gone restarting it is a low probability. There is a link to FIRECalc at the bottom of every page on this forum. Don't forget to consider the impact of termination of any employee benefits you currently receive while still w*rking.

Expect physical deterioration will accompany the mental slide; assess your home and surroundings to deal with loss of mobility and risk of injury.

I'll reinforce what earlier posters said about taking care of the caregiver, i.e., yourself. I just had a bite out of that apple. I retired at the end of last year. The very first Sunday night of my retirement my own DW took a tumble, breaking both an arm and a leg. I was her round-the-clock nurse, lady's maid, chauffeur, cook, laundress and footman until this past weekend*. Not what I had planned or prepared for in RE, and it wore me out physically and emotionally. And while DW was a much better patient than another family member I nursed for several months last year, I learned some hard truths about my own limitations.

*No, I did NOT dispose of her a la Raymond Burr in "Rear Window". She finally healed up enough to walk short distances without assistance. We replaced her old 5 speed Hyundai (>>200k miles) with a brand new Subaru featuring CVT instead of a clutch. She still needs minor help with bathing and applying her leg brace but being able to use both arms again is all the difference in the world.

Give yourself a break when you need it. Resort to humor when you can. Believe in the power of love and prayer. You likely have a long road ahead which will get steeper before it ends. May you find the strength to carry you all the way.

 

[pb4uski]

...No, I am not familiar with that but will Google it and find out. I am hopeful we will be financially ready to retire when the time comes. ...

https://firecalc.com/

There are tabs across the top to enter your information and then hit submit and a new tab will open with results. If you forget something or want to see how different assumptions affect you plan you can change assumptions on the first tab and hit submit and the results tab will update. On the results tab, key on the words and the success rate... the scatterline chart is a bit obtuse until you get familiar with them.

On the Investigate tab, you can back into the amount that you can spend given a success rate and other things.

 

[captain3d]

I would be tempted to keep working and use the money to pay for help at first. If it doesn’t work you can stop working. And if it does work out then keep going with the job for as long as it makes you happy.

 

[Teacher Terry]

A good friend of mine had early Alzheimer’s in her 50’s. Her husband kept working but if he was away overnight she stayed with us. We took vacations with them and rented a house so really there were 3 of us to help with her and we had a lot of fun. Unfortunately he got terminal cancer and we were retired so helped them both stay together home for 2 years. By then neither of them could care for themselves so his son took him in while he was dying and I put her in a home. It’s hard at times to be patient so be good to yourself.