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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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Happy 2024 to you, AlzWife!

Nice to see a happy update!
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Awesome news, Alzwife! Happy New Year!
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July question with August update.
And now so wonderful to hear from you, AlzWife. Happy 2024 to you as well. Hope you will continue updating us on your journey.
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Thanks so much for the update, Alzwife.

1. Medicaid paperwork.

2. Find a job.

You've got this!
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AlzWife Aug 2023
Thanks @BarbBrooklyn
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Sorry the trip didn’t work out. Get that Medicaid work submitted as soon as possible and do your research on memory care facilities.
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I thought I had updated everyone who was so kind here in giving me advice, but I guess I did not. It was all so disappointing. I cancelled my trip. My friends were disappointed. My older kids were relieved. The only silver lining is that the weather was bad and airports were a mess during the time I was supposed to travel so I told myself that at the time. Plus, I didn’t run up my credit card.

I have still not gotten the Medicaid paperwork submitted. I am pretty sure that I’m gonna go nuts if I don’t go back to work and reclaim my life.
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ChoppedLiver Aug 2023
Sometimes you have to do what you have to do.

(((HUGS)))

The decisions will get more and more difficult.

Even though you are not looking for it now, I suggest you start researching Memory Care facilities. The options are overwhelming and many have waiting lists.

It will be okay.
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It's good your daughter is okay with helping while you're gone.
Gosh you had 2 children by the age of 19!
Now you're 50 with an 80 yr old husband who needs watching.
It's no wonder you feel ready to have time for yourself and a life of your own. You've never had that! I raise a toast to your trip being all you're hoping for and more.
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@ AlzWife:

Your question to us has us all VERY engaged.

I think it's because you have been so responsive to us. Many post a question, get our answers, and never say a word back. We often wonder what in the world happened to them. But YOU answer us all, explain more, are delightfully engaging. In consequence, your thread is long.

I just wanted to let you know this. IF ever a responder is TOO responsive, annoying, or offensive, you can do the following without need of explanation:

A) if the person has opening messaging on their profile send a simple message telling him/her you appreciate his advice but would appreciate that they do not again respond to your current thread.

B) if the person has a closed messaging and you find them so problematic you cannot any longer just scroll on, then press the report button on all messages from them, and let the admins know, or post a message to the admins asking that they speak privately to the responder for you requesting they do not respond to your thread.

C) Just take what is of value to you and throw the rest of the luggage to the curb.

I personally wish you so well, and hope you will stay on the forum to help others.
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AlzWife Jun 2023
I just want to say thanks again to all the helpful respondents & clarify one thing because there was some misinformation posted. A score of 20 on the Mini Mental Exam indicates the high end of moderate dementia. My husband’s exam was administered by a top neurologist specializing in dementia & Alzheimer’s at Cornell. He explained that a diagnosis based on his examination & the test results is 80% accurate. The only way to be 100% sure of Alzheimer’s is to see the plaques which be can be done with an autopsy. In the last year, there’s a new radioactive tracer and brain scan that was developed which can be performed to confirm the plaques or you can perform a spinal tap.
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@MD1748

I have read this entire thread. I must say that I fail to see how patronizing and knit-picking the OP and everyone else who has commented on her post will have any benefit. Though I am confident that you will explain it to me in detail.
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JoAnn29 Jun 2023
Tried to PM u but turned off.
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Alz wife, you’ve gotten some great advice from experienced caregivers and the like. Enjoy your trip. Address future decisions and tackle the bigger issues with new clarity after you decompress.
You need this break.
Please don’t worry about asking for help.
It’s 12 days. Of course your daughter would rather not “do this”. It’s called sacrifice. That’s what it’s all about.
12 whole days.
Your children have inherited your compassion and good character. Don’t feel guilty. Appreciation is learned.
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AlzWife Jun 2023
Thank you for your advice Justwow123. I talked to my daughter this morning about the trip and she was very encouraging. We talked this afternoon about me going back to work and how that would look starting in the fall. She was very supportive of the idea. It’s a weird time for us all but we’re working as a team. This thread has been very helpful to me in being able to vent and get advice & support from other caregivers & not just my kids! sorting out next steps. Thanks again!
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AlvaDeer: You're right about 20 Y/O women and older men. I dated quite a few (some of whom, contrary to their claims, may not have been single!) although I married closer to my age. #1 was just my age at the time, 21--WAY too young to get married); #2, and #3 (current--and last) were 7 years older.

Also, about longevity in the '50s. I only knew my mom's mother as a child; she died when I was about 9 of what was then called pernicious anemia. She was 72 which was considered "very old" at the time. My dad's father died at 52 and his mother in her late 60s. Their parents (my great grands) were major outliers for their generation; both lived into their 80s, which may be where my father (died at 84) and I got the "longevity gene" for better or for worse.

Our closest son is 62 and, I agree, that seems SO young!
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I think you need to get help.
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georgiam Jun 2023
It's good your daughter is okay with helping while you're gone.
Gosh you had 2 children by the age of 19!
Now you're 50 with an 80 yr old husband who needs watching.
It's no wonder you said you're ready to have time for yourself and a life of your own. You've never had that! I raise a toast to your trip being all you're hoping for and more!
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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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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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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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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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You could put your husband in respite care in a memory care facility for part of the time you're away.
Medicare pays for I believe about ten days a year respite stay in a care facility.

Or you could hire a temporary caregiver to stay with your husband during your son's working hours then he can take over the aregiving for his father after work.

You say your children (I'm assuming this includes your daughter) wanted you to quit your job so you could take care of their father.
You did what they wanted.

Did they think they would never have to help out with their father's care? You need to have a sit down with your kids and have a serious talk. They need to understand that either they step up and start helping out with their father, or he goes into memory care. No it's and's or but's about.
Then you go on your trip and have a good time. In fact, don't even call home or take calls from your husband and kids while you are away.
If possible instead ask a trusted friend or relative to call you if something serious happens that you need to know about.
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AlvaDeer Jun 2023
My biggest worry for our OP, Burnt, is that she gave up her job. She has no salary from the decision to stay home with hubby. Her own assets are nil and not protected were they there. She has about two decades to save for age while still supporting herself. This is predictive of a horrific future, because if kids are unwilling now to help imagine where they will be with in in another two decades when she, herself, needs help.
OP needs to start thinking of her own protection in all of this imho. In my opinion kids are irrelevant to these decisions of us and should not be considered. No matter WHAT they say, the truth is that most of them have their own lives to live and want to live them.
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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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Glad you can see it! LOL
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1. Do NOT cancel your trip. You need a break,.
Let your daughter and other children see what you do on a daily basis. And knowing that caring for their dad will only get more difficult not easier.

Is your husband a Veteran? If so the VA may be able to help a little or a LOT depending on where and when he served. And if he is a Veteran YOU can get paid to care for him at home. (If he is a Veteran check with your local Veterans Assistance Commission (each County will have an office) or the VA and they can help determine what benefits he may qualify for.

Are there Adult Day programs in your area? If so sending your husband a few days a week will give you a much needed break.

Have you contacted your Area Agency on Aging or your local Senior Services Center to see if there are any programs you/he may qualify for?

You may also want to talk to an elder Care Attorney and begin all the paperwork you may need, maybe sooner than expected.

If there is an in person Support Group in your area it might be a good idea to get involved. On line forum like this is great but in person you can get immediate feedback and suggestions as well as building a network of friends that know what you are going through.
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AlzWife Jun 2023
Dear Grandma1954, Thank you! All of the support and advice I’m getting here is really helping me sort out the current conundrum and reframe the big picture.
Thank you for all the ideas. He’s not a veteran…he grew up in Europe. I will do all the things you’ve suggested. Have a beautiful 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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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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I think you need to place your DH and get back to work. You need those earnings for SS and every year you don't work, is less SS u will receive. SS only goes back 35 years from the time u apply. So if u retire at 67 at 100% your earnings will be calculated only back to age 32. And if in those 35 years you don't work 10 yrs, your SS is only calculated on the 25 yrs of earnings.

Your DH needed to be in MC but if there is no money, it will need to be a LTC facility with Medicaid paying and any SS he has. I would talk to an Elder lawyer about your options.
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AlzWife Jun 2023
You’re right. Thank you.
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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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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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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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Did your son pay for this trip?
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AlzWife Jun 2023
No, I paid for it with my last bit of savings. It was an impulsive thing to do.
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It sounds like you were blindsided by his Alzheimer’s diagnosis. But he is 30 years older than you, so did you go into this marriage knowing that he would have aging issues while you were still young?
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AlzWife Jun 2023
I was very young & alone when we got married. I was in denial about our age difference for years. He’s always been very youthful & energetic. The difference becomes more significant each year. I’ve always loved him & vice versa. He’s not a planner. He’s an artist. Lives in the moment. I’m more of a go-getter and now I am stuck. So, yes, I was blindsided even though I should have known. The knots have come to the comb!
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