My mom has early onset Alzheimer's. I live with her at her home and for the past two years, I have been caring for her because my non existent brother only shows up for food and money. He keeps telling her there is nothing wrong with me and that I'm robbing her blind yet he is no where to be seen unless he needs money for his overdraft bank account. I have health problems as well but I have to put them on hold to care for her. I love her more than life itself, but the daily screaming at me is hard to deal with. I have become so depressed at the things she says to me. She accuses me of stealing her money, spying on her son, really bizarre behavior and other things. I have no other place to live because I gave up everything to be with her. I just don't know what else to do. Should I just throw my hands up in the air and walk away and leave her to her son or should I stay and fight for her? My emotions are all over the place and I cannot even think of dating or even marrying for that matter. I am 53 and she is 75.
It's really challenging to support and care for a person who has dementia. They are sometimes difficult, abrupt and resistant to care. I would think hard about the challenge of the responsibility.
I would get legal advice from an Elder Law attorney. If your mom ends up needing financial help from Medicaid for long term care, her house may be considered an asset and a lien place on it. I'd check to see if there are exceptions for keeping the house in the family, if an adult child resides in the home for a certain number of years providing care that keeps the patient in home. Someone learned in Medicaid rules will know all about that. I'd find out what the rules are, before making my decision. Some other poster around here probably know about that rule. Maybe they will chime in here.
Whether you stay is up to you, but I would learn a lot about what the disease entails and how difficult it is to provide around the clock care in the home for a dementia patient. I'd explore what help she may be entitled to and make plans for the future, with her help, if she still able to assist you. Is there anyone else in the family, who might be able to help you, besides your brother?
Here is my final thought. My father nearly died last week. I thought he was gone. BUT in that moment when I thought it was over I knew that all the struggle had been worth it. The pain of it faded away. The memories of the horror faded away.... and I felt peace. So now I can keep going. PLAN while you are in this. PREPARE while you are in this. You will still be here when she is gone. Love to you.
Before you take on the responsibility of caring for a parent be sure and have all legal documents your parents made reviewed by an attorney. Do not end up in the role of caretaker only to find out an uninvolved sibling can make the final health or financial decisions because of previously drawn up documents by your parents. Only take on the care taker role if you have full control over all decisions. I learned this lesson while taking care of my mother. Caring for your mother will be a full time job that family members usually do not appreciate. Get all the help you can.
My mom is safe, and engaged, and cared for. I am still her main family caregiver and her best friend. We have good days and bad days. Just do the best you can and ask for help. God Bless‼️‼️
I thank God every day for the scientists slaving away in their laboratories to develop these meds.
Now, having said all that, the issue with your brother is part of why dad handled things the way he did with grandson; he had been the one, so maybe that's an answer in itself, but in dealing with hub's aunt and uncle that was an issue there, they were giving their money away that they could have been using for homecare but would not get their legal stuff in order for the one they were giving it to who was living with them and helping them, at least somewhat, but either someone else didn't feel they were or didn't think they should be getting money for it, but anyway, it began to seem as if they got uncle to get the legal stuff in order for them without aunt knowing it but somebody - like the one who was staying with them - may have found out because they quit, maybe like the advice you've been given, why should they keep on if they weren't going to be allowed to do it legally; they weren't allowed to have their money on their accounts - again, like dad; he wouldn't put his grandson on his - they'd put their son and dil on their accounts way before and had taken her checkbook away but she'd demanded it back, saying she would get a lawyer; she'd always handled it, ordered more checks and the last pack disappeared, being written out of, so at least checking account almost bankrupted, but that did get stopped; she is on Alzheimer's meds but just from her regular doc not a psychiatrist, so she says he's not qualified to diagnose her; uncle's a vet so they've gotten him the money from there for home care and have been supposed to have started that but doesn't seem to have happened but agree what needs to be done but you seem to be without means to do so, so much as we sympathize, not sure what to say, except agree it could cause you issues, dad's grandson was at that point, sounds you did give up house and job, like dad's grandson did, to move in with and take care of dad and he was even younger, which maybe did help; he was at least able to get a job later with social security thinking of retirement later on and at least dad was a vet as well, so got he got paid but in hindsight, not sure it was worth it; maybe just should have used it to hire somebody else so he could have at least worked, especially since the job he was able to get later didn't really pay all that much, maybe not even as much as he was getting for taking care of dad; I'm assuming your mom's household bills are being paid by her? also, the money she's giving to your brother could count against her if you try to get her Medicaid, although there are usually ways of working that out; dil's grandmother going through that right now; she was doing that and Medicaid or nursing home took them to court but also do you want the responsibility of making your mom's decisions; when it got to the point with dad, as much as grandson wanted to be included in will, etc., he either didn't want to make those decisions, or....did he not because he wasn't included, didn't want the responsibility without authority? which can understand, which led to some real issues; would your brother interfere at that point? even though grandson didn't want to make the decisions, he didn't like the ones I made either and created some real problems over it. Do you have children?
Not sure how well you'll be able to follow any of this; the situations I've been involved in these others were not able to because the relative would not go along, which puts you in a hard spot, I know
I watched my wife through the very things you describe and looking back years, realize that the onset was happening for over 10 years before it really became full dementia. Then I struggled with her for 5 years, before I discovered the Congress intended assistance. My wifes' exreme dementia is now managable, and it is extreme. She can't communicate, an autistic toddler who can't reason or learn. She is on her feet all day and only sleeps intermittently. She is passed the stage of being mean and accusing of everyone. She barely acknowledges the existence of other creatures, family, pet's. She has to be watched 24/7, by a person within reach, because she doesn't understand things in this world, including her own body. She has this manifestation, called 'alien arm'. Her brain doesn't think her left arm belongs to her, so she often hides it behind her back and when really agitated she will twist the wrist and act like she is tossing it away.
My heart goes out to you with the accusations and hatefulness. I went through that for 5 years and I much prefer this 24/7 of hand feeding, toileting, bathing, and constant watch. Medicaid provides home attendant care in my state.
Ignoring your own health (I did the same thing for 10 years) is not good. The anxiety and depression is bad enough but down the line other health issues will surface. Seven months after my partner went into a nursing home in another state closer to his family I had a heart attack. I was so depressed during the last 3 years that the last year I spent paralyzed on my sofa or in bed with the covers over my head. I prayed. And prayed. And prayed some more. I felt guilty even though I wasn't doing anything but trying to help. Lose the guilt. You are still young. You can recover from this but the first step is making the decision to take your life back. She sounds ready to be in assisted living or a nursing home. If you are a praying woman I would start there. Struggles in life always be worse right before God sends you a blessing and relief. Take care of yourself for a change. Go have dinner with a friend which you haven't had time to see. God bless.
Crying relieves tension for me. Don't give up and just realize that your mom doesn't mean to yell at you even if it hurts you and tears you up. If you need extra help, talk to her doctor abour finding a social worker to get an inhome care for your mom.
that can deal with patients who are losing their grip on reality.
And the long-term plan must ask
what would be the best pathway towards death for this patient.
How close are any families in such circumstances
to writing (with a terminal-care physician) an End-of-Life Medical Order?
http://www.tc.umn.edu/~parkx032/ELMO.html
The Elder care lawyer is always recommended, but if you can't afford to go that way, call your local council on aging. Get the process started to be her power of attny. Financial power of attny- medical power of attny. can she still do a living will. If you can make the changes to the financial issues, you can get your brother out of her finances.
Best of luck, you made a good first step, by asking for help here. there are a lot of people that have been through the same scenario.
1. Your Mum
2.Your brother.
So what do You feel would help you out immediately?
Short Term
Medium Term
Long term.
Personally: there are some Awesome suggestions here.... I like what Babalou writes and a few others.
Immediately: I'de look up a good advocate who can link you up with a good attorney.
Someone before explained that.
Good luck, I hope that you get what you deserve: immediately that would be a cuppa tea and a good night sleep right ??
I have a few thoughts, related to taking care of yourself. I also cared extensively for my disabled brother for years, and don't regret it - BUT my doing so, informally - left the rest of the family with their old, uninformed interpretations, so comments were made, help and support were refused, that left me with scars.
I agree with the person who suggested that you get a close friend - or I would say, a paid helper - to come to the home on a regular basis, at least 3 times a week. This extra set of eyes and help, is really important for you, so you don't take on the whole roller-coaster of emotions following those of your mom, without relief. I'm struggling now to learn to live my own life, now that my brother's emergency needs are taken care of, since he lives in a nursing home now - and it is NOT easy. There is an organization called Underearners' Anonymous which has phone meetings, and one of them helps people shift from dependence on support from family, to building one's own support.
I also recommend, in terms of self understanding, the great movie, "Hello, my name is Doris" - about the major challenge of a caretaker for years - major challenge to enter a social world after years of separation as she did the care for her mother.
Life is so fast paced and complicated today, as people have moved so far apart and our world separates generations, genders, races, and relegates "therapy" to offices, where real life constrictions, opportunities and constraints are not so easy to address in such separate settings.
So my version of an answer for you is to affirm that it matters to get the paperwork in order, get help with that part - over time, not overnight, but plan for files to store information. Talk with senior centers and say you need help, and look to family resources - or help to apply for entitlements - to pay for regular help. Promises from friends or neighbors are very hard to sustain today, you have to know someone very special who can allot dependable time commitments - otherwise, everyone shows up when they can, often not enough to help as needed, and needs evolve.
Start looking at separating your needs from your mom's or else you will have your family assume you are sponging off of her, not realizing how much help she needs regularly. In terms of her behavior - review your own schedule monthly, and decide how much time you can cheerfully give, without resentment. Plan to give that schedule, and practice ways of saying, "Love you! Glad I'm here! See you this afternoon...." . And leave.
And keep writing here, find support groups for those who help folks w Alzheimers, and consider what form your life can develop, when your mom is gone. All the best!
I would get advice from a social worker or an attorney. In this case; you may want to seek guardianship - or you can get a court appointed guardian. POA is good, but your mom can change it at any time. Guardianship granted by the court is approval that your mom cannot manage her affairs; and it protects her and you from family members that would take advantage of her.
You say you have no where else to go; there are always other alternative. Maybe social services can help you find affordable housing. Dementia is hard on a caregiver and usually early onset progresses more rapidly. Caring for my mom did affect my health (long story). I recently placed my mom in memory care and I am finally learning how to relax again - I don't have to worry about mom any more.
It is really important that you embrace the services out there. You can call the local agency for aging and start there.
The other's suggestions are very valid. You cannot continue to do this without assistance. In order to be the best advocate for your mom, you need to care for yourself as well.
I hope that these links are helpful:
http://www.alz.org/care/alzheimers-dementia-suspicion-delusions.asp
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