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.
Have you consulted with Aunt's doc about increasing her Seroquel?
I watched as my Father attempted to move his elderly Mother in - best intentions from love but impractical & would have put my own Mother in caregiver spot as he went on his way to work. Us children watched.
I watched again as my mentally ill sibling was supported to live alone. Best intentions from love again. I see the house of cards ready to topple the minute he cannot hold the reins. I will not stand in the way of the logical path straight into supported accom. I will not let it fall to my own daughter to arrange.
Biggest hi-five Niece.
Please keep your daughter front and venter where she needs to be.
Since aunt has some money to be spent down, why not hire someone to tend to her and do some housekeeping for you late in the afternoon prior to coming back home from your work day. It might make the pressure on you a little easier and even get aunt used to other people doing thing for her and around her. And the expense would be noted on her bank statements (for look back) but documentation of the hired help could be easily explained.
If she still has money left when you can no longer take care of her, the 'spend down' can be her room rent at a memory care. When she gets close to running out of money is when you would apply for the Medicaid.
https://4theseniors.com/services/pawaiver/?gclid=Cj0KCQjw1ZeUBhDyARIsAOzAqQKk5fWy8BapqQLJ93aOeB-Q1Olewrq-TCQuhSN9UHCANuhquNL90bMaAglsEALw_wcB
In the U.S.: Call the Alzheimer's Association helpline at 1 800 272 3900 or the Alzheimer's Foundation of America at 1-866-232-8484.
+1 866-273-5704 24/7 alzheimers association helpline. ***(Open 24/7. )
https://www.nia.nih.gov/health/getting-help-alzheimers-caregiving
https://www.alz.org/alzheimers-dementia/what-is-alzheimers/younger-early-onset
https://www.helpguide.org/articles/alzheimers-dementia-aging/tips-for-alzheimers-caregivers.htm
https://memorycare.health/?gclid=Cj0KCQjw1ZeUBhDyARIsAOzAqQJKEs5CUPBj1jIb_I6Uo8pbJlXm42DlSWOK3UMNLW8Wv89G2-fGZ10aAn6bEALw_wcB
Also contact your county of aging and even medicare/medicaid and talk to someone there. Maybe they can help with steering in the right direction, or suggestions for future. Cant hurt.
You said she had to spend down her inheritance. Can you 1. Get her meds adjusted with her doc. Do not sugar coat how combative she gets. She could be anxious at certain times. Make a mental note or write down when episodes occur. See if there is a pattern. Maybe there is a way to ease out of it, or alter the conclusion of the meltdown/s.
2. Are you poa? If you get her meds adjusted, maybe you can get help in your home to give you a break. She pays for it. It is for her care. If you put cams up, then you will always know what is happening 24/7. Then you can get a break. You deserve a break too.
There are ways caregivers get paid, but I don't know about that. Maybe someone else on here, can speak to that. And get you some money for that.
Maybe you can get some carer help, so you get some downtime too. Spend time with your daughter/husb, get a meal, a walk. Anything that decreases pressure on you. Good luck.
This must stop ASAP. None of this is fair to any of you. I fear you are in this muck so deep that you don’t even realize how toxic the whole mess is.
You must get this woman out of your house for everyone’s sake, including her own sake.
Regarding your DAUGHTER: You report that your Aunt “… has developed some weird thing against my 14 y/o and snarkily ONLY will call her “the princess.” More than uncool, that is entirely unacceptable and if it doesn’t quit stat, your daughter will come to the conclusion that no-one is in her corner and that she is alone in this. It can truly screw up her life. Your daughter should be priority #1. You must protect her against bullies and abuse of any sort, and yes that includes the stinging verbal arrows of your addled Aunt. Your daughter deserves better.
Regarding your PET: You report that yesterday Aunt showed “… combativeness and almost injuring my pet”. I believe you would not willingly let abuse of your pet start or continue after yesterday’s shock but probably are so exhausted you may not be vigilant. Please set up cameras wherever the Aunt hangs out in the house to ensure she isn’t abusing your pet secretly while you work all day, and take all other steps to protect your pet until Aunt is permanently out of your house.
Regarding your vulnerable STEP SISTER: “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”. Your innocent step sister deserves your energetic, creative love and care, and until the Aunt is out of your house, I fear your step sister will only get your exhausted and distracted efforts. Step sister deserves better. You deserve better.
Regarding YOU: tell your sister to butt out, or to step up to the plate. You referenced looking for placement for Aunt, and report that “My sister had the audacity to have reservations when I’m 24/7 and it really sent me for a tailspin.” I’m sympathetic and sorry you are stretched so thin time-wise, energy-wise, and emotion-wise that your selfish sister could put you into a tailspin. Try to get angry and energized instead, and put that energy into throwing off sister’s opinion (forever if necessary, or temporarily: just don’t loop her in anymore), and throw your energy into moving Aunt’s toxic presence out of your household.
Finally, regarding your HUSBAND: you barely mention him, and then only in passing. I pray he isn’t just an afterthought in your life, while you throw your all into unsuccessfully trying to make dementia-Aunt happy, to the obvious detriment of everyone else. Place dementia-Aunt in a facility so you can aim your efforts and love and attention to your husband as well as to your daughter, pet, and vulnerable step sister…and aim those same loving efforts to you yourself. You matter, too.
GOOD LUCK.
What stops her from hurting the pet when you aren't there? How does she manage to be alone while you aren't there?
Does she have a doc? I'd tell them she is getting more dangerous. Maybe they can adjust meds so she isn't as combative or anxious.
Also get in touch with your county of aging. Ask for help.
Can you take your animal with you? It isn't fair to leave the animal alone with her. You already know her mind is not right. How do you know she won't hurt the animal while you are gone? Trap it in the corner to hurt it. How do you know she hasn't done that already?
You are worried about your being able to cope. Why aren't you worried about your animal? You can speak out. You can leave. Your animal is trapped there 24/7. It can't tell you, she was abusing it. That is cruel! Do you have cams at home so you know what she is doing all day?
Id get her into placement. Get a geriatric lawyer if you must. You and your animal need help. Take your animal with you to work for safety reasons. Why are you leaving a defenseless animal with her that cannot escape?????
You have no idea if she is capable of burning the place down. I'd make sure the stove is turned off,and the microwave, and she can't turn it back on.
You need to get help for this situation immediately and help for your poor animal. If you are under extreme stress, so is the animal.
You are cruel to leave an animal in the house with her! She already proved she is capable of hurting it. Why don't you care about that????
You are concerned about your mental health and safety.
Stsrt making phone calls and get as much info as you can. And PROVIDE SAFETY TO YOUR PET AS WELL!!!!!!
Suggestion: Be your own best friend and choose LIFE!
You are bright, you know this so lets get the show on the road so you can visit as a fond niece and not a drained caregiver. Sounds like Aunty is going to hate you at any rate. Let her hate (as you remember she almost hurt your pet) and keep rolling on. Check in with a certified (make sure they are certified - search for one at https://nelf.org) eldercare attorney who specializes in Medicaid because unless Aunty has millions that inheritance is going to run out fairly quickly. DO NOT use your personal funds to pay for any of her needs. Talk to her PCP about the violence. She may need medication for that (always tricky) but it will be the one thing other than lack of money that will keep her out of a facility. You want to choose a facility while she has private funds to pay but............. make sure you get one that has memory care (long term care would be nice also but that may not happen) and that will accept Medicaid when she is eligible. Make sure that they will guarantee her a Medicaid bed when she needs it (some facilities have Medicaid beds but if they are occupied when Aunty needs it they can, at least in N,J ask her to leave) so get that guarantee written into your contract. I actually recommend that the family have the contract reviewed by their eldercare attorney. Understand that all guarantees and contracts go out the window if the facility is sold. New owners, new rules, new policies, new contracts. So much fun! Try to get with a facility that is long established with a good financial record. Non-profits don't look as fancy but generally have better care in my experience.
The five year Medicaid look back is to make sure that she did not gift money to anyone in order to become eligible for Medicaid benefits. When you speak to your attorney, you can ask him when you should apply for the Medicaid benefits. In NJ the threshold is $2000 but Mercer County always liked people to apply long before that limit was reached because it gave them time to do paperwork and investigate thoroughly. They will then be able to give you and estimate of when Aunty will be qualified for Medicaid.
Wishing you Peace and love on this difficulty journey... you will get through it.
I know this is water over the dam but from what you write if I understand it correctly perhaps Auntie should have been on SSDI for some reason many years ago but there was some type of trust fund or $$$ left for her to live on. It sounds like some things may not have been dealt with to put her (and family) in a better situation later on. But there's always an answer to everything.
Now you have clean up this situation. Can you contact a social worker. How can you possibly keep up this schedule. What about day time respite programs in your neighborhood. Some are medical models with p/t, o/t, a nurse and activities. You could find one with transportation and usually meals are included.
Many people lived in our family home growing up. But this was a time when most women I knew were home full-time. They had large families so working outside the home wasn't an option. There was always a lot of people in and out of our house. Nowadays no one is home.
Maybe just start your Aunt out with one day a week at a respite. Get her feet wet. Things change and you have to make the changes so that you are still standing. Find out "for sure" what your options are. And maybe while you're at it find out about services for your step-sister too. You can't burn the candle at both ends. You don't want to wake up in the morning with dread and say, oh no, another day."
You need to call on the troops. Tell your story. There are a lot of wonderful medical personnel people out there who want to help. They know which programs which benefit who. Don't be stoic about this. This way here if you get sick the house of cards doesn't crumble.
You find what you are looking for in life...you are in my prayers!
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.
Your dad was a very poor planner.
The Medicare issue, no special needs trust, clearly no "smart moves" (she should have qualified for Medicaid before--a disabilities lawyer could have done this)....his and her lack of a plan has left you in this mess.
You don't have to and SHOULDN'T have to shoulder this...mess.
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.
For a total of $669 a month. She could check into a Medicare Advantage plan in her area that has a monthly Part B "give back" - usually around $150 or so, to help get her premiums down to around $520 per month, as opposed to the $800 you stated.
Maybe this will help her stretch her money a bit longer with a savings of almost $1,800 per year.
Did the lawyer explain that to you?
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.
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.
A family therapist can help you sort through it all. Your Aunt can be spending down at an Assisted Living facility. Call "A Place for Mom" and find out what is available, so that she can reach her goal faster than the way you're doing it.
Is your step sister getting professional help, too? What do you have left at the end of the day for your teenager? Perhaps it's time for you and she to go on a vacation together and just planning it would bring you closer!
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.
My husband takes 150mg per night JUST for sleep.