I'm 29 y.o. & am the sole caregiver of my 86 y.o. grandma w/dementia which was put on my shoulders after my mom's sudden passing in early 2020 (we have no other family)...Over the past year, grandma's mental faculties have declined & she began exhibiting signs of dementia which have gotten worse over time. Since Sept, there have been 3 incidents (wandering & such) that ended with her getting admitted to a hospital after 911 was called due to safety concerns. It is now very clear that she can no longer live alone.
Unfortunately, I don’t have the ability or the resources to take her in so, over the past 5 months, I’ve been desperately looking for LTC placement...Sadly, there are several hurdles that have made it extremely difficult find placement (I've contacted 32 facilities in my state so far with no luck): not only does she not have any assets or income (other than monthly DTA payments), nor does she have SSI, pension, retirement savings or Medicare. Her only way to pay for LTC would be MassHealth (Medicaid). Additionally, she is unable to speak English so the language barrier has made it even harder...After the 2nd wandering incident in Nov, her landlord had apparently served her with an eviction notice on giving her a little over a month to vacate; however, since the notice was in English, she didn't know what it was and forgot all about it until she finally showed it to me on 12/23/21. She is now awaiting a hearing to be scheduled regarding the eviction…Long story short – not only is she not able to vacate her apartment due to the fact that she is still currently at the hospital because they don’t want to discharge her to go back to living alone (admitted for the 3rd time on 12/25) but also, she has nowhere else to go if LTC placement isn’t arranged.
I’ve tried almost everything – our state’s Family Caregiver Program through the Executive Office of Elder Affairs, local aging programs, endless research; even the Case Manager & Social Worker at the hospital where she's admitted have done absolutely nothing.
To make matters worse, she is the most cynical, negative, conniving, nasty, ungrateful person. She grew up during WW2 and lost her entire family in the war so she was put in an orphanage until her adolescent years. The highest level of education she completed was 3rd grade; that plus her innate pessimistic personality and all that life has thrown at her has made her into an impossible person to deal with…She loves to play victim and always lies about everything. When she doesn’t get her way, even for minor inconveniences – for example, she calls me during my workday to tell me that her computer “stopped working” (she accidentally hit the wifi button & turned it off) and expects me to drop everything and run to her to fix it (she doesn’t live close). If I don’t, she starts spewing hateful things such as “I’m going to kill myself then write a note and blame it on you”, “my death will be on your hands”, “your mom never wanted you” and so on until I break and give in to her demands. With the dementia, it’s gotten much worse…She has absolutely no idea of the things I have to do to make sure she’s taken care of like doctors’ appointments, paying her bills, making sure her annual recertifications for housing/health insurance/SNAP/etc. are in order, buying groceries, arranging for aide/nurse visits, ppwk and so on.
I am so exhausted and stressed that my health is taking a toll. I just recently got engaged and I want to live my life, grow my career and start building a life with my fiancé but I feel like I’ve lost the ability to feel happy. I resent her because I feel like I’m wasting my youth as she sucks the life out of me. I don’t even want kids anymore because I feel so depleted.
I’ve even thought about changing my number and just walking away…Is it possible for her to become a “ward of the state” while I am still around?
I just know I won’t be able to keep keep running on empty like this forever...
If grandma is in the hospital, go to the discharge planning unit and tell them that gma lives alone, no one to care for her, unsafe discharge.
Do not listen to any twaddle about getting her care at home.
They (discharge planners) need to find her a placement. Be hard as nails about this
If she is civil, you say, then you'll be around to help with the next thing the government puts her on. If she isn't, then it'll be up to strangers and not you.
Obviously, it’s no way to treat the elderly and there are people who really do have dementia. But there are some elderly who are simply hiding behind wrinkles, who know exactly what they’re doing and they will use you like a slave and chew toy, for their unhappiness.
These are often people who were narcissistic and only ripened, once they got older. No one wants the often typical effects of age so, I understand a certain amount of crankiness. But, when it becomes abusive and they are demanding, as if you have no life of your own, but to serve them, you must draw boundaries and there’s a book by that name.
Some do not want their loved one to become a ward of the state as, their assets, if they have any, will be seized in that effort, as far as I understand. The state and any other authoritative entities, as well as friends and family may feel that you’re doing the wrong thing to allow that to happen (and, perhaps, get your just desserts as, you will likely inherit nothing once they pass). But, nothing is easier than for the person that doesn’t have to do something themselves.
I have a neighbor who’s 3 children my age, tried to trick me into being their mother’s caregiver. She lives alone so, I don’t know what they would or wouldn’t inherit, once she passes. But, I’m pretty certain they wouldn’t even give me a thank you once she died, because they’d make it so they never “officially” asked me to do anything for her. That game is played, too.
Another neighbor is becoming I’ll but, even though she knew she might, it seems that she did nothing to mitigate it and she’s not even if retirement age so, the best to her.
Do not feel guilty about this. You are a grandchild starting a new life.
You are 29 and doing everything you possibly can for your grandma. You have been an absolute angel and now you are at a point where you can’t do anymore, with everything you’ve had in your life over the last few years I’m not surprised you’re on empty,
narcissm advice is to grey rock - don’t react don’t share. I have to do that at times, and it helps because I don’t get so angry with the crap I have to put up with
your grandma is 86 and has dementia, and she needs more support and healthcare than you can provide. The state needs to do this.
im wishing you all the best and sending hugs xxx
Now as to Grandma: Sweet little old lady, getting what she wants, despite not speaking the language.. yes she has worked out how to survive. After a life of war, lost family, the school of life showed her well how to get by. It was survival.
Her style is dramatic. Do as I say or I'll slit my throat, die in agony & haunt you forever.. or whatever line she comes up with next. I've seen these entertainers before. As non-family, I just watch the show.
Your reply can depend on your style: deadpan, "Go ahead but don't make a mess". Or play along! "No, no no Grandma dearest, don't ever hurt yourself, not one hair on your head!"
Then do whatever you want.
In fact, thinking your current situation over - it may be safer to watch this show from a little distance. Introduce Grandma to her nearest hospital social worker, advice they will need a medical translator, then bow yourself out. Take your seat in the audience & let it unfold.
It's either home with home services or if 'unsafe discharge' to rehab/or care.
You as NOK probably present as as smart, caring & ??female. Three things that make a social worker tick the Good Family Support box. However, if you were say a long distance truck driver.. well..? See? It can hinge on you even though you may lack the actual legal guardianship.
If you state a firm no, it can stop the show. This farce of independance. Maybe act one, maybe it takes a few more. Choose your lines & stay firm "No, I will not support her to live alone. I do not think it is safe. She cannot look after herself. She cannot arrange home care".
The hospital will get her admitted somewhere. Just make sure you tell them she's not safe living alone and you refuse to take responsibility for her. You have no legal obligation to take care of her.
You deserve to live your life and enjoy it.
She is probably telling the hospital SWs that you will help. I bet they start pressing you about that. Do NOT accept any promises of help if you "temporarily" agree to take her in. She will be of the SW's radar and responsibility. You will get no help.
The golden time to act is now, while she's in the hospital. Refuse to take on any responsibility for her. The hospital will have to find a place for her to go.
I am so sorry for the sudden loss of your mother in 2020. You have done an extraordinary amount in finding your grandmother help. The hospital can wave magic wands to get placement that you can't. Let them. Please fully embrace the wonderful life you have to look forward to with your fiance.
I am doing all I can to care for my bride, but it is difficult. I, too, am looking into a memory care facility. I don't want to place her, but her safety is a factor.
Do what you can helitua and don't feel bad about placement of a declaration of her being a ward of the state. You are doing her a favor. She may call you all kinds of names for doing so, but you are none of those. You are valuable and precious!
Have you been TOLD by a LAWYER that you MUST Continue?
What she “spews” or where she was born or ANY of the rest of her stuff MAY have NOTHING TO DO WITH YOU, since she is NOT your PARENT.
She can “spew” until she gets hoarse, BUT IF IT ISN’T YOUR JOB TO LISTEN (and it may well NOT be YOUR JOB) STOP LISTENING.
This awful sense of burden WASN’T “…put on…” your shoulders- YOU TOOK IT.
She can kill herself, blame you, blame Steven Spielberg, blame Jolly Old St. Nick- it’s all the same nonsense, and except for your core of misguided loyalty and innate kindness, she’s not NOT YOUR JOB.
CHANGE YOUR NUMBER. CHANGE YOUR HAIR COLOR. MOST IMPORTANT, change your perspective. If she was a nurturing loving Nona when you were a child, capture those memories and cherish them, then walk as fast as you possibly can toward your life and happiness and leave responsibility for her to whoever will take it.
YOU COUNT TOO! Give yourself permission to access what YOU DESERVE. It’s time!
Example: § 20-88. Support of parents by children (virginia.gov)
This is a link to an article from 2018 that (starting on page 6) provides a state-by-state list of those states that have such laws.
www.uhd.edu/academics/public-service/jcjl/Documents/05-V02-I01.pdf
This is another article that discusses filial responsibility laws and whether (or to what extent) they are enforced:
www.medicalalertadvice.com/articles/does-state-law-require-you-to-support-your-aging-parent/
It's beyond cruel for an elder (or anyone else) to hijack a younger person's life for theirs. Sad that gma had a rough time growing up, (truth is, many of us did!) yet we do not expect ANYONE to come flying in and make it all be OK.
DO step out of any CG expectations and let the state take over. They will not discharge her to the streets. They will find a place for her, and honestly? She's not going to be happy b/c like many people, happiness is a state of mind they cannot or will not acheieve. And it's not your fault.
Establish a relationship with her that YOU can handle, even if that means going grey rock with her and having little to no contact. It's OK to do that.
My mom kept us kids in line by a constant threat of suicide. It was beyond horrible and has taken me years to deal with. I DID do the "go ahead and don't leave me a mess"...and after that, she never threatened suicide to me.
It's hard when you are a person who cares. My 'caring nature' has landed me in a lot of hot water and messes it's taken years to get over. You can be caring and kind and still be a whole person in your own. Move forward with your LO and spend the time with Gma that YOU choose.
I wish someone had told me 45 years ago that 'I' mattered. I'm sure my life would be very different.
((Hugs))
Get her approved for Medicaid, get her placed and then you can look for a better fit.
Is she eligible to receive Medicaid? We have a poster that is stuck caring for her mom that is from another country, doesn't speak the language and can't get public assistance for years. So, no matter what is going on with her mom, she has to take care of her. Is this what is happening with your grandma?
I wish that people would read your story and others and make the effort to learn the language of the land where they live. It makes their care harder for everyone when they don't.
However, my mother has been beaten by her xhusband my father as was I. So my mother and I have a very close connection. She is very late stage dementia now. She can't feed, go to bathroom on her own anymore, she soils herself constantly, I have to change her out like an infant.
My personal life has come to a complete stop. I am fortunate however that I have a girlfriend that lives with me and helps out a lot, we plan on getting married but she also has a 86 year mother who takes care of her 56 year old mentally challenged daughter/sister. So it looks like our personal lives are and will be on hold for many years to come. I feel your pain.
I thought about having my mother placed in a facility, there are two good ones I know. My mother has no retirement savings but has ss monthly and is on medicaid/Medicare services.
BUT the thought of placing her there makes me feel like I had given up on her, she will not get the attention she gets from me and my future wife there.
However, other thoughts creep in and justify my thoughts of placing her in one of those good facilities, the thought of being able to "move on" and plan on vacations, on getting that job that pays a lot more and require a lot more hours out weight going to my boring af job and cleaning up after my mother everyday but I don't know right now. Oh and yes, my mother has sisters and an youngest son but they don't lift a finger at all to help at all. It's on me.
Im 57 years old, still have plenty of life to go but I don't know what I should do. It just seems that if I stay this path, I will suffer to because the job I hate I have to stick to and not consider anything else like free time for myself and my future wife.
Here's the other thing. Let's say I roll the dice and have my mother placed in a facility, I'm not out of the woods. My future wifes mother is 86.. her time is coming. My future wife has a mentally incapable sister that is being cared for by her 86 year old mother. My future wife's sister has been the one appointed to care for her sister but already has indicated she will place her in a facility my future wife has already stated she will not allow that. So guess what?
Sorry if I did not help. I'm in the same boat in regards to personal life. I hope you get the help you desperately need.. don't let it eat you away. If you have a future husband, he knows your situation, he still there for you? Then, you are lucky. If he is not? Not your fault. Keep trying to find somewhere for your grandmother. Pray..
You and your girlfriend need to stop putting your personal lives on hold because you never know how long your lives will be.
You can put your mother in a facility and still be her caregiver.
Being a caregiver is not just about changing diapers and being confined to the house 24/7 unless you find a baby-sitter for yoru elderly parent.
You can be a caregiver and have your mother placed. You can be an advocate for her to make sure she gets good care wherever she's placed. You can visit often and stay in her life.
You can do all of this and still have a life yourself.
Please marry your girlfriend. Please go on a vacation. Don't give up your life to the drudgery of caregiving. I'm sure your mother wouldn't want you to.
Walk away…save yourself.
She’s beyond your level of care.
What a life! First years of taking care of your dementia parents and now your dementia in-laws.
I hope you're getting plenty of help.
Have you reached out to Hospice? They are a wealth of knowledge and help. If your grandma is accepted, you will get some help. Also, Alzheimers.org is full of help. On their site, you’ll find support groups for caregivers. Please try to find one for YOU. Don’t give up checking with the senior organizations from your state. Call your local senior centers, too.
I just lost my aunt, 3 days ago, from dementia and complications. There were so many times I wanted to walk away and have a life. I’m so happy I didn’t. I’m not telling you what to do, but, know that those feelings are so normal.
Remember to do something just for you. Yoga, meditation, walks, anything that gives only yourself time alone.
Grandma’s personality isn’t going to change, at this point. She’s been scarred by a rough life. Try to accept that she isn’t going to change and may get worse, too. Dementia is a terrible disease that robs the people of themselves . Their world is smaller and scarier and more cloudy everyday.
Again, remember to breathe and know
that you are amazing!!! Caregivers have such a difficult job. You’re doing it! Hugs.
The hospital will keep the grandmother admitted and will find her facility placement if they are made aware that there's nowhere to discharge her to and no one to care for her either.
The poster if she's the only next-of-kin for her grandmother will likely not have to do more than sign some admitting forms at whatever care facility the hospital gets her admitted to.
If she's already been discharged, bring her back to the ER and ask for a 'Social Admit'. Make sure to use the term 'Social Admit' and explain her situation to whatever social worker they send to speak with you.
On my last care assignment trips to the ER were pretty common for client who was invalid from dementia. Every time we showed up a social worker would come down and ask if I needed help and if I was coping well. I finally told these people that I was going to put up a poster in the ER with my picture and write 'IT'S MY JOB' on it. There's no loss of social workers in the hospital who can help you. Talk to one.
You're young so I'm going to give you a little advice that comes from almost 25 years in the field of elder care. When the senior mouthing-off gets vicious and nasty as clearly your grandmother's is to you, I've had one GO-TO response that has worked for me all these years.
'Shut the hell up. Nobody cares what you think'.
Then follow it with a period of total ignoring. DO NOT give them a second of attention.
This response has pretty much shut down every nasty, vicious, instigating senior I've ever had to say it to. Try it.
In the meantime have a conversation with a social worker from the hospital and get that 'Social Admit'. Good luck.
Second -- you "have no legal responsibility for your grandmother". If your grandmom is in hospital now or even the next time she is there, I'd start my conversation with the hospital social worker in the ER with that statement followed by " She can not live with me. I do hope you can find her a placement somewhere." Do not let them try to guilt trip you into discharging her to your care. There is a lot wrong with our medical system in this country but one of the good things about it is............ hospitals and nursing homes, have to do a safe discharge. Discharging to the street is not safe. When grandmom is placed , I would not sign any admission papers unless you have PoA status, which it sounds like you don't. Let them make a her a ward of the state. If she has been already diagnosed with dementia and is considered non competent, she can no longer give PoA to anyone.
You need to live your own life. It may or may not include marriage and children - that's your choice but with or without that it should be good and fulfilling. Please PM if you need some more guidance about signing admissions paperwork. Peace on your journey and good luck in your future. I'm sure it will be amazing!
I had a friend that was in a similar situation and was able to find a nurse that was—for lack of a better word—"freelance"—they don't charge a lot and it's usually the good "helpers" who are out there doing it for cash money.
Though, I know that sounds a little scary—but generally you can ask them a ton of questions and interview them and have them come over and tell them what you need.
Sorry to hear your struggle.
Best of luck.
And, just tell them that you have it to watch your Grandma and it's not a privacy issue of you spying (per-se) more of a backup to see if anything happens while someone is in the bathroom or not watching her for a few moments.
Dementia is so difficult. It's similar to having a toddler kind of walking around and doing whatever in a blink of an eye. So, it is scary to witness. And truly exhausting to manage.
#yougotthis
Clearly has no concept of dementia being a broken brain and usually doesn't bother to read the original post (g'ma has her own apt, Riley - not living with gr'daughter. Gr daughter just trying to get her placed)
---- Give it a rest R.
As a matter of curiosity, what language does she speak?
Is there a community nearby of people with the same language and similar history? Does she have friends there?
I'm not suggesting you find someone to visit her...she might just fill their ears with garbage... and make things even worse. You don't need that!
But if there is someone among them, like a clergyman, and you think he might understand your plight, you might ask what others do if they don't have family. Be sure to emphasize that you've done your best, you've tried, but absolutely CANNOT care for her yourself.
Maybe not helpful, just an idea.... I wish you luck!
Your grandma needs nursing home placement for long term care. That is the only way to keep her safe. And Massachusetts has good Medicaid and it will be covered - once she gets a bed.
Patients in a hospital do not necessarily have a patient advocate in the way that adult protective services can help elders in community (including arranging for court to appoint a guardian for indigent elders and manage Medicaid application) OR the ombudsman who is the contact person for patient advocacy in residential care settings.
There are costs for getting her declared a ward of the court, and nobody wants to pay them. There are some professional guardians paid by the state, and often attorneys do a case 'pro bono'.
Right now she may be 'stuck' in the hospital due to COVID - you are refusing to take her to your home (right call, don't change your position), it is not safe to discharge her home 'with services" (and if the hospital does try, repeat that it is unsafe and insist on seeing discharge planning manager), and nursing homes are not even accepting back some of their previous residents, due to COVID.
Hospitals are hoping for some reimbursement for these extra hospital days from Medicare...but as she has no insurance at all, the pressure to get her out of the hospital is higher.
IF there is a geriatric psychiatric unit or consultant, meds might help and a certificate of incompetency can be done by psychiatrist.
She will be difficult to place, as you have found in your prodigious efforts to get help for her. There is not any other avenue to try, as best as I can see.
One other idea - call your local representative and senator at the state level, ask for constituent services, and explain all of the options you have tried. Maybe they can get something going.