What is it like caring for a parent while married?

Bob249011

Hi, I posted in the caregiver forum, but I was advised to check out this sub forum and looking around I just have to ask. What is it like caring for a parent while married? I am already burnt out but trying to get placement into MC has been a handful. I do have them on waiting lists but time is running out. I was given a great opportunity and I want to take it. I am feel trapped because I know I cannot leave my mother alone. 

I have noticed how I have changed as a person caring for my mother, and I have been neglecting my wife because of it. Any feedback on how to deal with being the only caregiver and married would be helpful. I have read countless articles and stories and it seems often times the marriage does not work out. I love my wife and want things to go back to normal, this move would be a fresh start, but if my bring my mother that fresh start will be tainted with extra baggage. 

I also love my mom, but tbh I love my wife more.   

[Deleted User]

The user and all related content has been deleted.

Crushed

My mother died of and with vascular dementia.  I shared care taking with siblings  although she never lived with me.    My wife was a trouper through the whole process.   My mother loved my wife and always inquired whether I was taking good care of her.   

My favorite story is when we took up her to Estes park and rocky mountain.   We passed the Alpine  Inn where we had stayed on our honeymoon.  My mother without batting an eye said I can wait in the car for an hour if you like

That was her idea of me taking care  of DW
 
 

Lills

I only have my personal story to share:  We lived 160 miles from my mom, who had beginning Alz.  

Two siblings and I took turns on weekends going to our home town to care for mom.  We'd cook for the upcoming week, take her out to dinner, take her to have her hair done, etc.  Occasionally, we'd need to make an extra trip for home repairs, doctor appts. etc.  We did this for 2 years until mom moved to a MC.  

Although never an expectation, my DH always came with me. He'd clean her bathroom (which as time progressed was a challenge!), listen to her repeat, repeat and repeat her stories of how she met dad and he doted on her.  We had been married 25 years by that time.

That's what a sweetheart my DH is/was.  He's now bedbound, non-verbal and sleeps 20 hours a day.  I will always love him extra for the kindness he showed to both my parents.  I believe it strengthened our marriage.  

Beachfan

Hi Bob, 

I read your OP on the caregiver board and the several responses.  I don’t have any advice to help you in your dilemma; I can only commiserate with you.  I thought back to being 27, married just 6 years, first home, first of 3 children just having been born.  There was no way on earth that either of us could have managed to help pay for parental care. We had to borrow from them!  (Money for a roof from my mom; money for a used car from his dad.) I resigned from my teaching position to birth and raise the kids and with careful, often precarious planning, was able to stay home for 10 years.  We loved, cherished, and assisted our parents; thankfully we didn’t have to care for them on a daily basis or financially support them.

Fast forward about 40 years and I unexpectedly found myself caring for my DH with Alzheimer’s.  It is a completely different scenario from your situation.  We are older, we have lived pleasant lives, we have diligently “saved for a rainy day” and now that day is here.  At your age and considering your situation, I would never presume to advise what you should do, particularly when it involves favoring one woman in your life over another.  

 You have presented your story honestly and have bared your soul. Please know that everyone offering advice means well and is not sitting in judgment. I hope you are able to navigate this storm, accept the position that you’ve been offered, and start to build a life for you, your wife and your future family while your mom remains safe and cared for.  Best wishes. 

Stuck in the middle

I was raising a disabled child when I was your age.  My wife had no objection (he was her son too) but the stress of fighting with school districts et. al. and the arguments over what treatment course to take pretty much trashed our marriage.  A counselor told us most children like ours are raised by single moms.

My career stalled because I had to turn down promotions to stressful jobs and to jobs that required travel, so that cost me about a million bucks over the years.  

"Friends" meant lunch with coworkers because I didn't have time to play golf, fish, go to the ballpark, or really anything I might have done with male friends. 

In short, being a married caretaker is a lot like being the trophy in a tug of war.  For years

Lorita

Hi Bob,

 It can be a challenge but is workable.  My mother lived about a quarter mile from us and Charles and I were with her every day.  He helped care for her as much as I did - he had been a nursing assistant in a hospital so knew how to do things that I didn't.  It took both us sometimes but finally got to the point we could no longer do it so had to place her.  Then, he'd go with me every time I went to visit her.  You know there were times when we'd go and she wouldn't recognize me for a little while but she always knew Charles - probably his voice.  You'll work it out and I'm sure your wife will be involved as much as you are.   Good luck.

Ed1937

Hi Bob. You really have no easy choice to make. It will be hard. If you decide to care for your parent, it will get much harder, then much harder again and again. You should consider this when making your decision. I'm not trying to talk you out of doing it, but you have to be realistic. How much can you do? And for how long?

I read the answers in the caregiver forum too. Someone said "Have you reached out to APS to see if they might pursue guardianship of your parent?". This could be an answer for you. But you'll have to give up control for that to happen.

Another thing to consider is just how stable your marriage is. It sounds like your wife is not ready to meet you halfway on this. Marriage is a two way street. When it's not a two way street, it's on shaky ground.

I wish I could give you an easy answer for this, but there is none.

[Deleted User]

The user and all related content has been deleted.

Tfreedz

Hey Bob,

I just saw your post on the other forum and commented. I was somewhat in your shoes not too long ago. My mom was declining mentally while living 30mins away and also caring for my older brother with Down Syndrome. I was a nervous wreck trying to figure out what to do to care for her while also prioritizing my spouse and son. Then in August, she almost died from pneumonia,dehydration and sepsis. She did not recognize she was as ill as she was nor did she know to get medical attention. At the hospital she was diagnosed with dementia and I was told she needed 24hr care. Can you imagine my husbands reaction? I had to take in my brother while mom was in the hospital and now mom needs 24hr care!?! 

While my husband was very supportive he also made it clear this was not how he wanted to live his life, and honestly me neither. I love my mom and brother but I don’t want to be their caregiver. I called every help line I could as well as visited with and elder law atty. It took five months for me to find adequate assisted living with option to move to MC for my mom. It really only took one month but the first 4 I was too emotional to get to work on it. My brother just moved out today to a group home. Finally we have freedom in our home again! 

It is not fair as you say to burden your spouse or yourself with the care of family members when it is sudden and unexpected and it can take a toll for sure. I gave my word to my husband that it would only be temporary and that it was necessary for me to be sane to make sure my family members were taken care of.  Thankfully he was patient even though it was stressful. I assured him over and over again that our lives would get back to normal if I just had a bit of time, my goal was six months or less.

Ed1937

Bob, I was thinking about you most of the night. I'm 84 years old, so close to old enough to be your g-grandfather. I've been married to my wife since I was 20. It's a 2 way road.

Here's what I came up with through the night. You seem to be a bright young man with potentially a good future. You don't want to lose that. Remember that any deals you make with your wife must be honored. You don't want to lose her trust. Here is 1 possible scenario.

Tell your wife you need to talk to her about your mother. Since you don't want to lose your marriage or your bright future, you could tell her you are willing to leave your mother where she is, while supporting her with caregivers or other support (possibly a guardian) for a set time (maybe a few months). Of course a guardian would be permanent, and she would need to be found needing a guardian by the court. 

You have to accept the fact that you'll lose your mother whether she is with you or home where she is comfortable. See how your wife reacts to the idea. There is a lot of room to compromise. Obviously your wife should know that your mother means a great deal to you, and she should be supporting you in these hard times. But that doesn't mean you will get everything you want. Compromise works. Ask for her input on a solution. It is understandable that a young woman would not embrace having her future robbed by a disease like this.

I don't remember you saying that she had been diagnosed with dementia of any kind. Given your age, I'm assuming that if she were diagnosed, she might have been diagnosed with early or younger onset dementia. If that is the case, she should be entitled to social security payments. That would help with the financial burden.

I really hope you can find a workable solution. If you were to become the only caregiver, that would have the potential to have a devastating effect on your future.

BlackCat1

Hi Bob,

My MIL has dementia and we have been through the wringer for many years.  We live 4000 miles away and I can tell you this disease is absolutely devastating.  So many things may happen that you may never have even imagined could happen. Dealing with someone who refuses to bathe, is no longer reasonable in any way, refuses to get medical attention when needed, refuses care assistance from physical therapist, etc, is beyond frustrating and relegates you to the role of "emergency manager".  My MIL suffered garrulity which was exhausting.  She talked all day everyday.  She would talk so fast that your eyes would glaze over and after hours and hours of it she would just keep talking, and this wasn't a two-way conversation it was all her.  Then EVERYTHING became ALL her, her, and more her.  My husband lived with her on and off for a very long time and she had a full-time caregiver.  He was able to work remotely that was a tremendous help with the situation.  One full-time caregiver was not enough to manage her.  She started shadowing and wandering.  So many things happened.  I wish I had better things to say.  This disease has aged my husband tremendously.  I understand and I don't get upset when he spends months with her, away from me.  My husband has a very demanding career,  the only way we have been able to manage this situation is because my MIL had assets that we could use to get her the best care that we could find.  If we did not have those assets we would have used our own as the situation was beyond anything I could ever imagine. This disease is financially, emotionally, and physically absolutely devastating.  Read the posts on garrulity, wandering, terminal restlessness, contractures, constant UTI's, agnosia, biting, hitting, and so many other things that are overwhelming to manage and heartbreaking to see your LO go through.  This is my first post here.  Your situation reminded me so much of my younger self before this disease happened as we have moved all over for my husband's career.