My mother is 76 and was diagnosed with Alzheimer’s about six years ago. I have taken care of her in her home for that entire time, completely by myself. I am about to turn 50 and am completely burnt out, so I decided it was time to obtain in home PCA’s, as her siblings refuse to help in any way. My mother has been nothing but hateful and belligerent to every caregiver I have brought here, and told me that she will continue to berate and and act hostile towards *anyone* that comes into our home to care for her-unless of course that person is me, and me alone, because she cannot fathom why on Earth I would need any help at all taking care of her. She no longer will bathe willingly, she refuses to change her clothes, eats only vegetables and potato chips, and constantly gives caregivers dirty looks and ignores their questions and offers for help. I have explained to my mother that this is in fact the last straw, and I’m doing everything I can to keep her *out* of assisted living. Her response? “Do it. Put me away because you just want to kill me!!!” She claims that it’s her belief that she’s insane and “needs to be locked up,” yet she refuses any type of help at all, even refusing to see her primary care doctor because it involves putting on shoes and a coat and leaving the house, and that “he can come HERE if he wants to see me so badly!!!” I’ve explained to her that in order to afford a spot in a memory care unit, I would need to sell her house and both of our cars, and that her cats would not be able to live with her, nor would I. At that point, she will scream hysterically that I just want to kill her and just want to take her cats away from her, and if the conversation persists further, she will storm out of the room and cry hysterically. I will then wait till she is more calm, and then try to continue the conversation, whereupon she will stare into space and completely ignore me, going so far as to pretend to be asleep. If I wake her up, she tells me to leave her alone. When her current caregiver told her that she had a poor attitude and that she felt that my mother was being mean to both of us, my mother told her that it was because she “smelled.” The caregiver offered to leave, whereupon my mother shrugged and said “I don’t care who comes here, you didn’t ask for my permission first!” I tell her that a caregiver is coming everyday at noon. I’ve lived in this house for 15 years, twice as long as she has, and have explained to her that I have rights here as a tenant. That will usually involve her reacting by storming out of the room and again crying hysterically until she calms down and again pretends to fall asleep. If I put her in memory care, it’s going to coast every last penny she and I have to keep her there, and I will probably end up homeless as a result. She gets a monthly pension until she passes away and social security, so she doesn’t qualify for any type of state aide nor will she qualify for Medicaid, so I’ve been paying her lot rent, utility bills and medical bills, and they’re piling up. If I ask a question or ask her to stop doing something at night, she completely ignores me and just continues as though I’m not even there. Finally, my question is this: is it time? Do I just do what I can to keep her in a memory care unit, thereby rendering me homeless (I’ve got a GED and have washed dishes all my life) because I also don’t have much in the way of skills? I’m in this house with her 24/7/365 and she refuses to leave it for any reason, except for leaving to live in memory care. I’ve explained that because I won’t have a home or vehicle, I won’t be able to visit her and it’s likely we’ll never see each other again. Her reply is usually vigorous clapping of her hands and smiling while yelling “YAAAAY!” I really don’t know what I did to deserve such a horrible person as amother. It’s my feeling that she’s been misdiagnosed, but every hospital she ends up at just tells me “that’s how the disease is sometimes.”
You cannot pay for her facility care. This will impoverish you now and in the future. There are other solutions, although you (and your Mom) may not like it they are solutions nonetheless.
If you are not her PoA I would talk to social services for your count to discuss court assigned legal guardianship. If she gets a 3rd party guardian then they will make sure she gets the care she needs and will figure out how to pay for it. First you should talk to a certified elder law attorney or estate planner to figure out the entanglement of your assets with hers.
I think you are correct that she is misdiagnosed. I looked up year 6 symptoms of ALZ and none of it sounds like your Mom. She may have some other form of dementia, or she may be mentally ill. I'm not sure it matters because there's no cure or treatment anyway, except meds for her agitation.
You should consider recording her behavior and when she is particularly unhinged, call 911 and tell them she is "not herself" and may have an untreated UTI and is refusing to cooperate with any care. You do not mention ALZ or dementia at all because this is not considered a medical emergency. The point is to get her into the ER.
If they succeed in getting her to the ER, make sure the discharge planner knows she is an "unsafe discharge" as she is not performing any self-care or cooperating with any care offered by you. Then you ask to talk to a social worker and tell them you are not her PoA and she is not cooperating with care and she is creating chaos for herself and you. Maybe she will become a 5150 admit (psych ward) where they might keep her to get her on meds. It varies by state and hospital. FYI they do not diagnose dementia in the ER.
Refuse to take her home if they try to discharge her. Make sure she doesn't have any ability to call anyone to come get her. Do not believe any promises by the hospital that they will help once she's home. This is a lie they tell in order to get her out of the hospital. Don't answer their calls. Don't go get her. Maybe the social worker will put the wheels in motion for emergency guardianship and direct discharge into a facility.
Also stop trying to talk to your Mom about anything. She is not cognitively or emotionally able to handle it and it just exhausts you. Save your energy to problem solve. It will feel really hard for a while but then there will eventually be a solution, which is not you.
Look into a QIT for your Mom. It's a Qualified Income Trust that is set u p so that the "overage" amount that is disqualifying your Mom from Medicaid goes into this trust so that she then becomes financially qualified. When she passes away, the funds that were funneled into the trust go back to Medicaid to help cover the cost of her care. But in most states Medicaid only covers LTC. Your Mom isn't to that point yet and it may never be your problem if she can get assigned a guardian.
I wish you success in getting her the care she needs and peace in your heart as you move forward.
Start looking at homes to place her in.
You matter and you need a break. She is only going to get worse.
When you put her in a home, there will be no discussion. Don’t create more anxiety for her and she doesn’t get to make this choice. Just go find a place and work with them on how to get her there.
You need to consult an elder law attorney for information NOW. You haven't said, or it was lost in all the stories, whether you are POA or not. But if you have doctors letters with diagnosis of dementia, then you will easily obtain temporary guardianship to place your mother.
You need now to educate yourself as to options. To be honest, in this country, NO ONE has to stay in a home bickering until one or the other dies. To put your money toward anything at this point is a huge mistake, though if you are in your 50s with no skills it is likely far too late to save for your own old age. You may need to consider, with the attorney, becoming rep payee for your mother's SS so that you can manage HER funds to pay for HER care so far as possible. When care in home, however, becomes too steep a mental/physical/emotional price (sounds like you are there!?) placement is necessary.
I wish you luck, but there is no magic wand out her to cure dementia. It has to be managed. And ARGUING with it is certainly the worst and most hopeless management of such a condition.
This woman is no longer anyone's relative. She may be misdiagnosed, but that has no bearing on her present behavior. She is who she is and you don't to apologize for your feelings or feel guilty
It is futile for you to continue trying to persuade her to agree with your plan for her care. Quit trying to explain it to her, and stop trying to please her. You don't need her approval to make decisions for YOUR life.
Who owns the home? You should not be paying her bills. But, it seems you have put yourself in a position where you are living in her home and have nowhere else to go. If it's her home, how have you lived there twice as long as she has? I'm not quite clear on this living arrangement. How are you paying for PCA's to come to the house? That can be expensive. If you need to sell the home and her car to pay for assisted living, do so, but you do not sell your car. You will need your car.
I think you should consider placing her instead in a skilled nursing facility with a memory care unit designed for Alzheimer's patients, with safety features in place such as locked doors, so they can't leave and wander.
You are too enmeshed in your mother's life. I wish you would simply leave, find another place to live, and get a job, dishwashing or whatever you can. You don't have to place her in a care facility, you don't have to pay any of her bills, and you don't need to manage her care. Let her fail. It's not your problem to solve, unless you have POA, in which case you are obligated to make decisions on her behalf.
Call APS if you are worried about her.
You and your mother have a co-dependent abusive relationship. While she does indeed sound like an unpleasant person to live with, I'm also considering that while her mind and body are deteriorating from a deadly disease, you are burdening her with guilt and worry about how you are going to get by without her. You've threatened to take her to assisted living; and she's ready to go, but you don't follow through, because you are worried about where you will go then.
You need to cut ties. However challenging it may be for you to find a job and a place to live, it is time. Unless you change your mind, decide you are not too burned out to continue taking care of her at home for the rest of her days - which could be years, giving you a place to stay in the mean time. You are then just delaying the inevitable move. What happens to the house when she dies? Do you plan on being able to take it over and stay there?
You have to make a choice. And it has nothing to do with your mother. Only you can decide how to move forward with your life in the way that best suits you.
The other respondents here have offered some great suggestions to help you move forward. I wish you well in whatever action you decide to take.
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