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I quit my job at my adult children's behest to stay home and care for their father, my husband. We have limited means so our oldest child (son) moved in with us and he gives me money monthly --barely enough to pay my bills. I have no more savings. I am not able to plan for my future. I am 50 & my husband is 80 with an Alzheimer's diagnosis (mini mental 20/30). He could probably be home alone or with minimal help/supervision for a while longer but for a very excitable dog we got before I realized my husband could not handle him. My kids are very generous and supportive, but I've given up so much and now I am feeling their resentment too.
Aside from the long term concerns, I have a more immediate gripe/conundrum: I planned my first ever solo trip for this summer (12 days) & my daughter agreed to stay with her dad and do all the housework that I usually do (minding her dad, shopping, cooking, pet care). I am supposed to leave next month. This week she is visiting and being very argumentative and resentful of the "female role." She gets like this when she does not want to do something. She's been going on about her freedom. To cut it short, I feel like I am asking too much of her and I am thinking of cancelling my trip. I cannot get a refund on the airfare but I can reschedule (maybe up to one year). It's a trip to Europe where I was going to stay with two friends and a few nights in a hotel. I really can't afford it, but I felt so ready to have a little time for myself and life of my own that I went ahead and scheduled the flight since I've been talking about it for years.
My daughter is generally very supportive but when push comes to shove I know she'd rather not do this. She'd rather work and have her time for herself. She works freelance and she turned down one job already to cover me. She wants to help, but she gets overwhelmed. To be fair, the situation is a bit overwhelming for everyone. There's really no option of outside help a this point. If I do cancel, I will say that I just can't afford it now, which is technically true. I was really looking forward to this trip but I am starting to think it's a little excessive.
What do you all think?

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I vote for going on your trip while dh is still in the MCI phase of Alzheimer's. Your daughter offered to help and of course she's feeling uncomfortable and second guessing that decision now. AD is uncomfortable and unfair for EVERYONE but most of all for you who is the primary caregiver here. You need regular respite breaks, so take them. Your daughter WILL manage with her dad and they'll likely grow closer as a result of spending 12 days together.

As far as marrying an older man goes, my dh and I are 6 months apart. He's had serious health issues since 2019 including a liver transplant and now I have stage 4 metastatic melanoma. We are both 65. Did we ever think or prepare for such illnesses to strike us when we said I Do in 2009? Nope. Life on life's terms doesn't always work out the way we think it should, that's for sure. But we wouldn't change the decision we made then, knowing what we know now...!

Don't over think this trip. Just go have some fun and come back rejuvenated and refreshed.

Best of luck.
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AlvaDeer Jun 2023
Such an excellent point to make out of what has been so tough, Lea. Because following your journey has also been a lesson in love.
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You need your own life.
You are very young. My own daughter has a decade on you.
You need to be able to work at a job; you have only a few decades to build up the money you will need for your OWN CARE in the future.
If your kids are tired of caregiving NOW imagine how they will feel about it two decades in the future when YOU want their help.

Your children need their own lives. No need to go into that. That's a given. They need their own lives, and you have no control and should not have control over their lives.

I think it is already clear to you that your husband cannot be left alone over time. It is time for a division of finances, a legal separation done by an attorney and an application for Medicaid.

I am so sorry. These are the facts and stating them in this way seems so brutal as it leaves to the side the tears and the pain.

Get the family together and discuss the path forward now. I wish I had happier suggestions, but I don't.
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AlzWife Jun 2023
It’s not brutal. It’s true. I guess I was just hoping all this would happen naturally or automatically, but we have to make decisions and take action. Thank you.
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I don't understand why you would quit your job thereby not planning for your future.

What your children want has nothing to do with the circumstances at hand. It is about need.

You are young, go back to work, place hubby in a LTC facility.

Your children are already in burn out mode, honestly, if I were young, I wouldn't want to be saddled with caring for an 80-year-old either.

Take your vacation, use that time to make a plan, set the plan in motion when you return. Have Fun!
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AlzWife Jun 2023
MeDolly, in retrospect it was a bad idea to quit, but it was a very stressful job with a long commute & I was under a lot of pressure from my kids. I had no energy for my husband or anything when I got home. It’s only been nine months all told so I’ll be able to restart.
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Alz Wife,
You have been so kind and so responsive to all our varying suggestions. Just want to wish you good luck, welcome you here, and hope you will stick around.
Your experinece can help others.
You can be a part of a helpful community as you work your way forward. We would love updates from you.
Again, welcome to Forum.
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AlzWife Jun 2023
AlvaDeer, Thanks for the support. All those who have replied except one seem to be very caring people who truly empathize & want to help. I just want to say that it would make me very happy if I could stay home with my husband and care for him full time AND have a proper income & retirement & respite care AND not have to burden my children. Unfortunately, I don’t think this is a likely scenario (but I have been trying to figure how to do this).
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"I quit my job at my adult children's behest to stay home and care for their father, my husband."

Why did they want you to give up contributing towards YOUR financial future -- YOUR retirement? And I would have rehomed the dog, as that also affected your ability to continue working.

Get your kids together to talk to you about what will be the plan going forward. Perhaps your H needs to be in a facility, you need to go back to work, and your son can then move out and live his own life.
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AlzWife Jun 2023
All true. Thank you. I don’t think they’re thinking long term.
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Your husband thinks he is fine because he has AD.

We have a high salary and we can’t afford to support another adult for 10 years. Plus, your son gets no benefits from that lost money— can’t take it on taxes, it’s not getting invested etc. All his money is doing is going poof.

Yes, making poor decisions from emotions, though entirely understandable, WILL sink all of you with this ship.

I’m glad you are here.
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AlzWife Jun 2023
Thank you for your excellent reply! It’s all true & (like Fawnby said) I have to call them all together after the trip & we have to get realistic. I will put my foot down & by then we’ll have met with a social worker and had our second meeting with the neurologist. Thank you again for your support & insight. It seems obvious to an outsider, I think. It’s obvious to me, but the emotional burden is so big that I’m often just getting from day to day.
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You have worked so hard, and you praise your children for being generous and supportive. Now you want to go on a much-deserved break from care of your husband, and daughter is pushing back. The same daughter, if I'm correct, who urged you to quit your job to take care of dad. Your income has ended, and so have the pleasure and social contacts from work. You're clearly bearing the brunt of this tragedy that's overtaken your family.

Your trip is for less than two weeks. Daughter has already agreed to take care of dad while you're gone, and you should encourage her to do so. She should keep her word. Two weeks is not a huge chunk of her life, and afterward she'll have a better appreciation of what you're dealing with. She had to turn down a job to help you? So what? You gave up your job at her urging, and that was really bad advice on her part.

When you return, it would be a good time to have a heart-to-heart chat with your generous, supportive kids and tell them that you understand their anger/sadness/pain. Then have a frank discussion about how "we can't do this much longer." Enlist their generous supportive help in finding a placement for dad, who could live for another ten years or so. You be the strong person, and don't let them push you around. Daughter doesn't rule this roost. Son doesn't either.

It is never a good idea to quit work to care for a loved one. It's better to work, contribute to your retirement funds, and pay someone else to look after him. If you still had a job, you'd be contributing to a fund that would help you in old age (Social Security and maybe a pension). At this point you're giving up what you'd earn at work now and support for you in your old age. That's not good.

Please go on your trip - it sounds wonderful. And have a great time.
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AlzWife Jun 2023
Oh my god this is just how I feel and what I needed to hear. Thank you, Fawnby!
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It sounds like caregiving is taking its toll on you.

A couple of things came to mind as I read your post.

What do you want to do? About everything? Please be honest with yourself. Would you rather be working? It doesn’t sound like you can afford not to be working. It doesn’t matter what your children say. This is your decision to make.

Also, please don’t burden your children with caregiving. I know that you need help. I realize that you need a break from caregiving. I know that you don’t have extra money to pay someone. Your children need their money too.

Have you considered applying for Medicaid for your husband and placing him in a facility? Then you and your children can visit him as his family members instead of being his caregivers. You can help him by overseeing his care by a trained staff.

Best wishes to you and your family.
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AlzWife Jun 2023
NeedHelpWithMom—I appreciate your response very much. I am struggling with being honest & true to myself & trying to push through until I can’t anymore.

I can’t afford to not work. If money were not an issue, I’d say I could accept caretaking as my F/T role but I feel like I’m losing my last good working years. I don’t want to take money or so much help from my children. It’s only been two months & it was a struggle for me to accept. Before that, I lived on savings. Most of our decision making has been emotional.

I did not ask my children for help initially—they insisted. According to them, I was “having nervous breakdowns everyday…”they were right. I’m on anti-depressants now which help a lot. So is my youngest son who took this very hard. (We have three adult kids). I really don’t want to burden them. The trip is a different story & I’m thinking I have to postpone it. Posting on this board is helping me to clarify that decision.

My oldest son who lives with us & works from home & makes a high salary said he was willing to “do this for ten years”which is ridiculous. We have a very close & loyal family culture, but I feel like we’re all sinking unnecessarily with the ship.
There’s also the option of pushing through. Grace. Faith. Etc. Will we really be happy putting him in care? I know he will not like it. He thinks he’s fine.

I do have to talk to a lawyer and consider placing my husband at some point in the future, but I don’t know if his needs are really at that level yet. It’s weird. He does need 24 hour care but maybe not officially. I guess it’s how I present it to the social worker. I think he’s deficient on two ADLs & he’s definitely deficient on all IADLs. He has started to fuss at night a lot. Saying he can’t breathe but it is really because he’s hot & it’s humid or he ate right before bed. He’s breathing fine.
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I truly hope you go on that vacation and have a great time. It will work out. Carpe Deum.
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AlvaDeer Jun 2023
Carpe Deum is fascinating when it hits the philosophy classes to be certain. We nerds love philosopical arguments.
In my own class the argument was whether we should A) seize THIS day because it was ridiculous to worry about the future OR whether we should B) seize THIS day because the future could not "be trusted".
As in the future is not assured to us.
Or may be assured, but without any guarantee we can get to it.
As the young people say today, it's complicated.
To me it means we may worry so for the future that we give up our present joy in this day preparing for it, and it may never come. And goodness, do we ever need each bit of joy we can pull from life kicking and screaming!

Alas, arguing philosophical thoughts will serve only to take us further into the weeds to my thinking.
We would have to go into "sufficient is the day unto itself", and mindfulnes and all that. When really the question here is one vacation. All planned out.
At this point I vote for taking it if at all possible, because at this point it's really needed!
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Sure, ask for help.
Be honest about what you need.
Let them be honest back about what they can give.

There may be a gap. Small, big, or huge.

Casting the 'help net' out further than family becomes necessary..(Unless you have a truly enormous supply of willing relations).

Next is that wider view. Go really wide. What's really needed?

Your DH gets cared for.
You don't get impoverished.
You maintain good relationships with your adult children.

Taking a holiday sounds like a fine idea. Time to destress, unwind, shift focus from the daily stressess to that wider view.

I hope you can find a way to go. If not now, soon.
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AlzWife Jun 2023
Thanks Beatty. Had a nice chat with daughter this morning who has encouraged me to go on trip all along. I think there are just moments of exhaustion when people express their frustration and then move on. She encouraged me to go & just be frugal on the trip. The big picture stuff is a lot harder to figure out.
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