I quit my job to beome a full time caregiver

RobertsBrown

My wife has early onset dementia.  The progression has been slow enough that for long time I was able to be sure her needs were being met while still running a company.  As her needs became greater, I did more at home and tried to still put in meaningful hours at work.  I tried changing my hours, splitting my days, and even working in the early mornings and going home before she got out of bed. I finally had to step away from my company and become my wife’s full time caregiver.  I hired a manager to replace me, but managers are not owners, and after the losses became too big to ignore, or write off to ‘growing pains’, I had to let him go.

Now I have a company in trouble, real and impossible money issues, and my home issues only trend in one direction, as we all know.

There are two questions that come up that may be relevant here.  The first one is about jobs over spousal care. I chose to leave a good job now, and definitely hurt my finances both short and long term, to be with my spouse while there is still something left of her.  Some tell me that’s heroic, others that it’s moronic.  There should be some kind of hero/moron archetype, because I think both sides are right.  Question one, is what do you think?

Question 2 is sort of grim, but has to do with fate.  I have accepted that this is my fate.  No different than if my wife had terminal cancer that was going to eat our money as it killed her.  One unfortunate truth of America is that we are ‘free’ of the burden of public healthcare.

So question #2 is: Do you accept spousal Alzheimer’s as your fate, or do you fight it?  If you fight it, please tell me how to do that.

LadyTexan

Good morning RobertsBrown.

My DH has EOAD. I left the work force at 55 to care for my husband. 

Q1 - Like you mentioned, some people thought it was brave or heroic. The majority of my family thought it was a very bad idea. I don't like the term moronic, so I'll substitute foolish. I considered the options, I obtained feedback from trusted professionals and members on the forum. I considered my financial condition. I considered the demands of caregiving. Leaving the work force was the best decision for us based on our situation, but it is neither heroic nor foolish. It was the best option for us.

Q2 - Yes, I believe it is fate.

Crushed

My situation was more complicated.  DW was a genius physician nearing the end of a brilliant government career. She made far more money than I did since 1994. I was always the "homemaker" in our family.    Changes in certain laws  made her movement to the medical nonprofit sector much more likely in 2008.  I was awarded Professor Emeritus status and was ready willing and able to support any move,  To keep her the Feds  moved her to the top position in her field in 2009.   In 2010 She was diagnosed with MCI.  She was 58.  EOAD at 60 and retired  .What I gave up was my post academic career of consulting.  I was her full time caretaker  from late 2011 to 2017.  I had no significant earned income after 2013, when I was 62.  Fortunately we had pensions SS and massive savings .  So I missed professional status and contacts but financially we were ok .

 

Doityourselfer

In my experience being a full time caregiver is a nightmare, especially for a spouse who isn't easy to take care of.  It only gets worse, not better.

I wish you the best in your journey dealing with this awful disease.

Paris20

RB, I don’t see my role as fate. I see it as my responsibility. My husband and I met when we were teenagers in 1962. We were married in 1964. We went to college and grad school together, and raised two children and four dogs. We had wonderful careers at our alma mater. My husband was an accounting professor. I was an academic advisor. We traveled extensively. 

There is no way I would desert my husband now. We’ve been through high times and low, always as a team. We’ve enjoyed our three grandchildren with whom we’re very close. How can these ties be broken? I’m not naïve. I know what’s ahead. Many awful symptoms are already here. So, to return to the original question, no it’s not fate. I have to face DH’s Alzheimer’s head on. If, however, you don’t have the money to retire now and care for your wife properly, you should see a financial advisor. You should also see an elder legal specialist too. Fate has nothing to do with it.

DrinaJGB

I left the workforce to care for my DH and my father. My husband had his own design studio for years and was a graduate of Rice and a brilliant architect. I had to close his studio and accept our new life. I don't see it as anything, really---only what life throws at us in a random way if we are the ones unlucky enough to be in its path. It is what it is.

  The one thing I never do after 11 years is listen to mindless pratter from seemingly well-intentioned, but sadly clueless and oftentimes judgemental people on what I should and shouldn't do. Not anymore.My husband survived a rare brain infection that has a 30% survival rate---with merely 3% returning to pre-disease functionng. He has mild dementia because of the insult. I figure if he has outlived all the predictions and statistics this long we have at the very least beaten the odds.He is different in many ways, but so am I.It changes people.

Good luck with your new life. It never gets easier, but it makes one wiser and able to seek gratitude in the smallest of ways.Sometimes you question your own sanity, and a place like this is a good way to vent your frustrations and heartache.

Ed1937

I may be the oldest member of the group. The way I look at it is that "It is what it is". I'll deal with it as best I can. But at our age, it might not be dementia that gets her. Of course I might go first. I really feel bad for those of you fighting EO.

Welcome to the forum. It's a good one, but sorry you need to be here.

loveskitties

Each situation is different just as the presentation and time line of the disease, while much the same, is also different.

No one can know your circumstances (financial, emotional) as well as you can.  While friends and family will offer their opinions as to what you should or should not do...they are just that opinions.  You are the one who must look in the mirror each day and be able to say I am doing the best for us that I can.

Once you have determined a path, don't look back for the "should have" "could have" possibilities.  Always remember you made choices based on best information at the time.

Fate is defined as the development of events beyond a person's control, regarded as determined by a supernatural power (per the dictionary).  If you believe in this definition, then you may also believe there is an underlying reason which is yet to be revealed.

Regardless, the life we are living "is what it is", and we just have to do the best we can each day.

There are never any easy answers for the caregiver of a LO.  

Crushed

Paris20 wrote:

 

There is no way I would desert my husband now.

Please don't use language like that.  BANG you just lost your left leg and need a caretaker yourself    Your husband cant do it .. did he DESERT you?

please NO one deserts someone by being unable to care for them, 

People do the best they can as long as they can

aod326

The heroic/moronic comments can only be coming from people not in your/our situation. Like several others, I hated comments along the lines of "you're such a hero/angel for what you do for DH". No I wasn't - I did what anybody would do for someone they loved, because I want the best for him, as he would for me. I hated many aspects of it, wasn't good at several things, but did the best I could. I know how lucky we were in that DH and I were very happy together - I didn't feel looking after him was something I "should" do, or "had" to do because of marriage vows. (I feel much sympathy for those people whose PWD is someone they had a bad relationship with - that's a whole other discussion.)

I was fortunate in that I was able to keep my job, partly due to a combination of wfh because of COVID, and extremely understanding employers. I placed DH when it became impossible to work and have him at home. For us, there was no real option - no way we could have afforded the mortgage without my salary; I was prepared to sell the house but that would have brought up other problems. I also had good advice from an objective CELA who was firm in reminding me I also had to be able to live once this was over. I was able to take FMLA when DH came back home on hospice. (Financially speaking, I was fortunate that his EOAD was fast-progressing, and I knew it was likely he'd die before the money and work absence options ran out all together.)

I'm a practical person who's good in a crisis and who approaches life as one cosmic pro/con list!  Ultimately, after looking at options from all sides, I go with my gut. Do what YOU feel is right, then don't second-guess. Sadly, it's a sucky outcome, whichever you choose.

Paris20

I’ll clarify my use of the word desert. What I meant was that I’d never leave my husband, especially now. I am responsible for his well-being, when he needs me most. I never wanted to imply that if he couldn’t care for me I’d consider it desertion. Although I never had a leg shot off, I did have cancer twice and my husband was wonderful in caring lovingly for me. His kindness drew us closer together. I don’t believe that fate has sent me a message «Now it’s your turn, kiddo.» Those of us on this forum already know that you-know-what happens.

RobertsBrown

You people are all terrific!

Thank you for your words. this is a very isolating situation and the feeling that i am not all alone in this experience is helpful.  My word choice was a little clumsy…tired brain does not always get it right

By ‘fate’ i mean a course of action that i am locked into by circumstance. I am not even a little bit religious, and i am absolute in my dedication to my vows and promises to my spouse. I am also not naive, i see what’s coming, but I promised a young woman i would stick by her when she was an old woman. We are one, and that’s that.

Now i just need to figure out how we do this the best way.

DrinaJGB

Just hang on---any way you can.

Stuck in the middle

You are not a fool or a hero.  You are a husband.  Devoting our lives to the well-being of our families is what we do.

Accept, of course.  Serenity comes from having the courage to change what you can, patience to accept what you cannot change, and the wisdom to know the difference.  

Welcome aboard.  

Crushed

Paris20 wrote:

I’ll clarify my use of the word desert. What I meant was that I’d never leave my husband, especially now. I am responsible for his well-being,

 

 

DW is my total responsibility even in Memory care.   She has left me completely  .  She has no idea who I am .  I monitor her care, feed her regularly and take her for medical care. She  my wife de jure but not de facto   .  I have five young grandchildren.   I'm at the beach with them right now .  It is what she would have wanted

janeymack

Crushed - you didn't answer either question, but posted to AGAIN state your wife's brilliance, along with your own, how financially set you were/are, and how you gave up everything to care for her.

And now you're at the beach with your grandchildren because it's what she would have wanted? Aren't you at the beach because YOU want to be with your grandchildren?

It's ok to not to view every post as another opportunity to post a reiteration of your's and your wife's achievements. It's exhausting to read on so many threads. Why not just enjoy a day at the beach?

Crushed

janeymack wrote:

Crushed - you didn't answer either question, but posted to AGAIN state your wife's brilliance, along with your own, how financially set you were/are, and how you gave up everything to care for her.

And now you're at the beach with your grandchildren because it's what she would have wanted? Aren't you at the beach because YOU want to be with your grandchildren?

It's ok to not to view every post as another opportunity to post a reiteration of your's and your wife's achievements. It's exhausting to read on so many threads. Why not just enjoy a day at the beach?

Are you finished with the snide personal comments now ? does it make you feel better ?

I answered both questions

question one was ambiguous Question one, is what do you think?  think of what?
I described my job and career choices  They are complex because our careers were close to the end and I could make the finances work   

So question #2 is: Do you accept spousal Alzheimer’s as your fate, or do you fight it?  If you fight it, please tell me how to do that. 

 Bluntly what does the question mean? I answered that my children and grand children need me in a way my spouse does not any longer  and cannot benefit,

I had extensive discussions with my wife as she was failing  She was a physician and well aware of her decline,   She said to me constantly take care of the children and keep the family together.   She was badly estranged from her only sister.  Her mother died before our children  were born .  Her devotion to  family was total. 

  

CStrope

My husband was not a genius, but was a great teacher, his career wasn't brilliant, but he did work hard at reaching his students.  We don't have a massive savings, and we don't have 2 pensions. What I do have is a husband with EOAD and a job that I need to pay the bills.

This past weekend I was lucky enough to have my son stay with my husband so I could meet up with a couple of high school buddies.  While at dinner I turned to them and said, "I don't know how long I can do this".  My friend turned to me and said, "you do it until you can't do it".  

That was such a real response for me, and one that  I think fits the questions perfectly.  Because of so many different factors that makes each one of our situations different, the time frame and options to care for our LO can and will be very different.

I wish I could say that I will be able to put my husband in the best memory care facility that money can buy, but I won't

I wish I could say that I will be able to afford in home care so that I can continue my job without stressing over how he is doing, but I won't

I wish I could choose to retire if I decide to care for him at home, but I can't

All I can do is the best I can, until I can't.

lqadams

Janeymack,

Crushed is an arrogant, self-absorbed know-it-all. 

Stop reading his comments/opinions.  I have. Stop letting him irritate you. Just skip past his postings.

Cherjer

CStrope...just curious...are you still working from home or wondering how you are handling work and caring for your husband.

I am so sorry for all the have EO..my husband was diagnosed at age 73 but I am so concerned about my 41 year old son and what may happen to him.  My heart goes out to all of  you who are caring for EO...I really can't complain as my husband and I have had 51 years together and only the last 8 years have been AD but even the first few years we were able to travel and enjoy life together. For those of you who are caring for EO that truly is a trial. 

Buggsroo

Thank you Cstrope, that comment is the truth. You do it until you can’t. I guess I am still grappling with that, as my husband put the heat on again in an 80 degree house. Sometimes, I am more accepting than other times, other times I think, I can no longer take this sh-- life I am leading or more accurately is leading me. 

As for being a hero, I loathe that expression, it really is being caught between a rock and a hard place. You can’t leave, you can’t travel, you are trapped and well it’s sucking it up buttercup. I cry, rage against the night and just hope for the best.

But the problem is you love the person who you no longer recognize, so you do the best you can, take a deep breath and crack on. 

Elshack

lqadams wrote:

Janeymack,

Crushed is an arrogant, self-absorbed know-it-all. 

Stop reading his comments/opinions.  I have. Stop letting him irritate you. Just skip past his postings.

I totally agree with you. I am really tired of reading about his wife's brilliance and his too and how well off  he is financially ...blah blah blah. He works those facts into many discussions even when not totally relevant. I do avoid his original posts but often he responds to others' posts.  

RobertsBrown

Hero.  I wish I had not posted that.  It's ridiculous.

First contact here, and I was trying to not 'write a book', you know?  A little too much late night typing, not enough editing.

Not heroes.  Just people trying our best with a raft of real life-altering problems.

LadyTexan

I think hero is appropriate. I often refer to the forum members as caregiver heros. 

The following is Merriam-Webster definition of hero Hero | Definition of Hero by Merriam-Webster. In parenthesis I have added my opinion of whether that describes care givers.

1a: a mythological or legendary figure often of divine descent endowed with great strength or ability (no) 

b: an illustrious warrior (YES!)

c: a person admired for achievements and noble qualities (maybe)

d: one who shows great courage (YES!)

2a: the principal character in a literary or dramatic work —used specifically of a principal male character especially when contrasted with heroine (no)

b: the central figure in an event, period, or movement (YES!)

3: plural usually heros

4: an object of extreme admiration and devotion : IDOL (not really)

Crushed

“Claret is the liquor for boys, port for men; but he who aspires to be a hero must drink brandy.”

― Samuel Johnson

DrinaJGB

No hero here for sure. Merely human and doing the best I can under unrelenting stress. In the words of Mick Jagger--"they'll never make a saint of me."

aod326

Cherjer - it's lovely of you to think of those of us dealing with spouses with EO. It certainly adds a different dimension to the challenges. My mum always said, though, just because the man in the hospital bed next to you has two broken legs, and you have only one broken leg, doesn't make the pain any less real for you. Your journey is also tough, awful and heartbreaking.

CStrope - wow, I love your friend's comment. S/he sounds compassionate and wise. I'll be adding that one to my repertoire of things to tell myself when things get tough. (Although, having lived through losing my husband to AD, I can't really imagine another situation really fazing me.)

Virtually hugging everyone in this awful situation.

DrinaJGB

Yes I believe living through this situation does make one fearless indeed. At least I feel I am now.

sandwichone123

My spouse and I have been married for five years. He has both parents and children, but all live out of state and the most support I can expect from any/all of them is a text.

My top priority is to keep working. As long as he can be left alone that's ok. As long as my son is around to be home with him, that's ok. When he needs home care I will provide it as long as I can. Hopefully the time will not come that I have to place him, but if that time comes that is what I will do.

I do not want to retire permanently now, at 59, nor do I want to try to re-enter the workforce in my 60's with no current experience or contacts.

Of course, I know from experience that when the time comes I may feel differently about things.

CStrope

CherJer, yes, I am working from home.  It started because of COVID, and now my wonderful employer has graciously granted me the ability to do that permanently.

I am truly  thankful for that opportunity, but it is a double edged sword.  I am an extremely social and outgoing person, so working from home full time has definitely taken a toll on me.  Thankfully I work with an amazing team that continues to reach out to me via zoom-type calls, and knows just when I need a good facetime laugh.

I am 58 years old, so I know I have some good work years left in me!

aod356, yes my friend knew just the right thing to say since she watched her mother deteriorate with Alzheimer's.  She "gets it" and she also understands that no 2 cases are the same.  Her mother was 91 when she finally passed, my husband just turned 66.  He taught anatomy & physiology, so he used to be well versed in things involving the brain.  He was just trying to read an article to me and pronounced dementia dee-men-tea-ya.  It was heart wrenching to hear him not know how to properly pronounce something he has, and used to discuss with students.

aannaa

I understand you, this is a good and brave concession. When my neighbor was diagnosed with dementia (and I communicated well with him), I decided to help him and spend time with him. He often helped me, so I also wanted to help him. Then I just finished university and went to my first job in my specialty. In order to get involved in work as soon as possible, my neighbor recommended me https://apix-drive.com/en/blog/how-to , as he already worked as a marketer and has experience. I had a great time after work and it was not a punishment or boredom for me