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Hello. I have been lurking here for a long time and have found it helpful. It’s my turn. In Jan 2021 my Dad passed away. He was the main caretaker for my Aunt with early onset dementia. I suspect some mental disorder as well because she’s been a little off her whole life. She has never been married or had children.


She came to live with me when he passed and it’s been very hard. She never worked only lived off inheritance so she never paid into SSI or Medicare.


We see now “spending down” her inheritance and paying a Medicare Full premium of $800/month. Last was the worst night we have ever had as far as combativeness and almost injuring my pet. I’m a married working 34 y/o with a teenage daughter. It is time for placement but I feel like such a failure and so sad. My sister tries to be supportive but has her own life. I was the one with an extra bedroom. I find myself sad, depressed and my “fuse” is nonexistent. All of my relationships are suffering bc of my burn out. I know what I need to do but I’m so sad. The price or Memory care is about $7k a month. I have to hope we can manage 5 years for the Medicaid look back. She spends money on Medicare, medical bills, Walmart, DoorDash because she can’t drive and a small storage unit. It is so much pressure not to screw up her spend down. My day job is personal attendant to my step sister who is legally blind with intellectual disabilities so going to work and then coming home to more caregiving is nuts. I feel hopeless and like I serve no purpose other than this. I’m scared my Aunt will hate me and my Dad would be mad at me (he refused to place her). Thanks for just reading it you made it this far. Many of you have really helped me not even knowing it.

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Many people don't place their loved one in managed care due to misplaced feelings of guilt, thinking/feeling they're doing something 'wrong' by having them cared for by professionals 24/7. It makes no sense at ALL, when you really think about it logically, putting emotions aside, and think with your brain instead of your heart. At home, there is nothing to do, nobody to socialize with except the primary caregiver, no scenic drives to go on, no organized activities designed specially for elders with dementia, no menu specially designed for them, and no teams of caregivers working in shifts who aren't burned out, resentful and exhausted either. Life in a Memory Care ALF is not the house of horrors many folks seem to think it is. There will be folks here who will argue and say "Oh but I DO design a menu & activities for my loved one, etc." But they can't give their loved one a social life with other elders to hob-knob with during the day and to share meals with, watch movies with and do arts & crafts with, etc.

My folks both lived in AL together until dad died, then mom downsized rooms and continued living there for 4 years until her dementia advanced to the point where she needed Memory Care in the same ALF. She was very well cared for there and very well loved by the staff, until she died in February. If I had it to do all over again, I'd do it the exact same way.

When my dad died, he asked that I take care of mom, which I did. There are many ways to 'take care' of a parent, too, not just 'in home' but also includes managed care. Don't let guilt stand in your way, and don't minimize your own health and welfare along the way here. YOUR life matters too. If all of your relationships are suffering b/c of your burn out, how are doing anything beneficial for your Aunt here? Take that into consideration as you make decisions moving forward.

You can seek out the advice of a Certified Elder Care attorney for guidance regarding the Medicaid look back process and how to proceed with that. It'd be worth the $$$ for peace of mind.

Wishing you the best of luck with all you have on your plate.
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You're assuming your caregiving is the best care your aunt can receive, and that's not the case. That isn't failure -- that's reality. Very few of us are trained caregivers, and sometimes placement is the better option. That doesn't mean you aren't still caring for her -- making this decision for her own good IS caring for her.

Try not to be so hard on yourself. You're doing the right thing, and your dad caring for his sister when she should have been in a facility means he was not making the best decision for her. I suspect his situation was much less difficult than yours is, though, since dementia progresses. There's absolutely nothing that says he wouldn't be making the exact same decision for her if he was caring for her now.
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SnoopyLove May 2022
Excellent point.
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Last night when I was crying in bed I sent myself a text message that said “When you wake up in the morning and everything feels a little less heavy do not let yourself back down. This is not OK. You are not OK. It is time.” I need accountability because I backpedal in guilt and stay miserable. She has developed some weird thing against my 14 y/o and snarkily ONLY will call her “the princess.” This is not ok.
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SnoopyLove May 2022
Damaged brain or not, you’ve got to get this woman out of your daughter’s home.

I’m sorry your father left you with this burden.
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You know what you have to do.

You have knowledge already + replies on the financial, Medicaid, POA/Guardian & placement options. You have the skills to find out how to proceed. Yet..

Are some family 'truths' standing in your way?

Read these statements through & decide which ARE really true?

* Family helps family.
* Moving Aunt in with you is the ONLY way to help her.
* YOU have to provide housing for your Aunt.
* YOU have to be the one to provide daily personal care for your Aunt.
* You can save your Aunt from her disease/illness.

Once you have done that list..

* Dad was Aunt's caretaker.
* Does this mean you 'inheirit' what he CHOOSE to do?
* Must you do it just as Dad did?

Finally..
* People get old.
* It is sad Aunt is old, alone & needs to move into care.
* It is OK that you feel sad.

Then see if you can re-write any of those statements until the list is TRUE for you.

I may add a comparison: your Father was probably retired & spot checking on his slightly odd but (mostly independent?) sister.

You are working, have child/children to raise & would need to be 24/7 caregiver for an elderly lady with menal illness/dementia?

This is not comparing apples with apples. This is apples with a rhinoceros.
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Placing doesn’t equate with “failure”.

What you’re aunt may OR MAY NOT think is a product of isn’t coming from reality, but rather from perceptions distorted by the one or more problems already part of her damaged brain.

When caring for a damaged, troubled relative that no one else assumes responsibility for, YOU become the boss by default.

Would it disappoint you to find that she may be MUCH HAPPIER in a residential care setting? Don’t be too surprised if you learn that it’s the case.

YOU deserve a pleasant peaceful life and so do your husband and daughter. And in fact, so does your aunt.

Do some research, today. RIGHT NOW. See what you can find that’s nearby and can accept someone with her disabilities. Make a portfolio, if you have the time, and compare the choices available to her.

Do you have POA? Does anyone, if you don’t? DO NOT continue to use money that is not hers, to support her. It will only make for more difficulties for you.

PROTECT YOURSELF, and treat yourself WELL. Many others in your position would have REFUSED to take on her care as you did.

You gave it a shot, and it didn’t work out. NOT YOUR JOB, NOT YOUR BURDEN TO ASSUME, NOT YOUR FAULT that you have to change plans.
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LostNeice2022 May 2022
Thank you so much for your response. I know you are right. I do have power of attorney. When my dad was in the hospital she added me to her bank account so I could help her manage her funds. We spend her money on things that she needs, meds and her Medicare premium. Right now it is just a matter of getting the guts to place her and see. My sister had the audacity to have reservations when I’m 24/7 and it really sent me for a tailspin.
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You are not a failure if you need to place her. Your father wouldn't be mad at you if you were becoming mentally, physically and emotionally exhausted. Based on what you say, I don't see how you can be providing your husband and teenage daughter the support they need.

I put my mother in care after my Dad died as she needed a high level of care, I had a full-time job and two teenage kids. I know my Dad would have preferred I cared for her but that is totally unrealistic as I would have to quit my job, face financial hardship, neglect my teens (one of which needs lots of support) and would probably end up divorced. She is also much better cared for in a home.

Don't feel guilty, she needs more support than you can provide.
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LostNeice2022 May 2022
Thank you and I agree with you. This forum is helpful and makes me feel less alone. Putting emotions side is a challenge.
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Your Dad isn’t alive now that things have reached the current state of affairs, just over a year since his death. He was “the main caretaker for my Aunt”, so things must have changed a lot, with a lot more pressure on you. Stop telling yourself that “my Dad would be mad at me (he refused to place her)”. Unless he was a stupid and uncaring Dad (and I hope that he wasn’t), he would now see that things have changed and the options are not now the same.

Your Dad and your Aunt had years and years to understand the realities of old age, and to organise things to take the load off you and your sisters. They didn’t. Aunt can be as ‘combative’ as she likes, but she doesn’t have a workable plan to look after herself. Her money is her own to look after her own old age. Trying to maximise the inheritance she leaves (who to? You? Sister? Cat’s home?) is not as important as getting your own household back onto an even keel, while making sure that she has the care she needs.

Do the best you can, without driving your household around the bend. For different reasons, neither you Dad nor your Aunt is now able to call the shots.
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LostNeice2022 May 2022
I would never try to maximize inheritance to myself. I understand people do and you don’t know me from Adam but ALL I want is my life back.
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It seems that you're trapped because of your own fault. Your severe "sense of duty" and your "emotions" are running your life. Use you head, put aside you emotions and get out of this mess. You can do it.
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LostNeice2022 May 2022
You nailed it. My Mom who knows me best said the same thing.
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You know it’s time to place her. Your daughter can’t be too happy with an Aunt who is developing an attitude towards her. And your pet is not safe with her in the house. Your own family of daughter and pet comes first!
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LostNeice2022 May 2022
I agree. Thank you
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Just to share a personal experience. When I was a teenager, my grandfather who had dementia came to live with us and my parents were all involved in his care and working. My siblings and I were neglected at a time when we really needed our parents and we became severely depressed and acted out. I am a grown woman now and will never forget how horrible it was to have my grandfather live with us. PLEASE think of your own family and go ahead and place your Aunt.
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LostNeice2022 May 2022
Thank you very much for this. She has always been mentally ill and it was hard for me visiting my Dad’s as a child. Now here I am wagering the same person with my own daughter. It seems like a no brainer but its difficult. We have a tour on Sunday and if all is well, will place the deposit.
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