I am 57 years old and have been my mothers primary caregiver for 17 year. I believe that my mother has been bipolar all of her life. She and my father adopted me when I was 4 days old and my younger brother when he was 11 months old. My father passed away from a complications of working in the Uranium Mines. My mother blew through most of her money in less than 5 years. She never had to have the responsibility of taking care of money as my father did all of the financial business. My mother had 2 operations to replace her knees and they were botched as she got an infection and had to stay in a nursing home for 90 days with a spacer ball in her knees. She now has no weight bearing capabilities. She has refused physical therapy and is very hateful, stubborn and thinks that she knows everything. She cannot even wipe herself. My husband (God bless him) will do this for her when I am not home and will even give her a shower, which is an adventure to say the least as she does not move very well and weighs over 280. My mother has never taken responsibility for anything that has gone wrong in her life. When I was a little girl she would fight with my father and then somehow blame me. This has not stopped. I never had any privacy as a child or teenager. She would go through my purse the minute that I came home from school. One day in anger she told me who my real mother was (which I really did not want to know). Turns out that my biological mother was a cousin. I was crushed to learn this as I realized that my whole life seemed like a lie. It was all such a big secret even though I was a grown woman and having given up a child for adoption myself due to mistakes made in the past, no one seemed to think that I could understand. We put my mother in a nursing home for some rehab for 100 days and between the nursing facility and my mother she almost died. She refused to take her medication and just wanted to come home. Her ammonia levels built up in her system and caused her dementia to kick in. My husband and I decided that we needed to bring her home. She also developed bed sores on her bottom the size of 50 cent pieces. We now have her healthy again. My husband and I cannot get away together as we have no one in the family that can take care of her. We bought a house and my mother contributed the rest of her money to help with the down payment. She insisted that because she loaned us part of the money for the down payment that we put her name on the mortgage as well. This was a very big mistake. My husband and I do not have a life. She is the center of our universe, knows it and takes full advantage. My job is hanging by a thread as I have had to take so much time off from work and have run out of FMLA. I have had to take a leave of absence and am not sure that I can return to work without getting fired as they are tired of me having to take so much time off. My husband does what he can. We cannot put her in a nursing home as her name is on our house and mortgage and the nursing home will take everything in order to pay for her care. I am so frustrated and feel so stuck. I don't think that it would be so bad if she was not so mean. She makes me feel that my whole life is worthless and that no matter what I do for her it is not good enough. If I don't answer right away when she calls she will be very hateful and state that she has been calling me for hours. My husband and I need a vacation and a break and I want my life back but cannot loose my house. She has ruined my credit as we have had to take so much time off cannot afford to pay all the bills. My husband has more patience with her than I do and that is also wearing thin. We do love her and feel that she deserves to die at home. We made the decision to become her caregivers but it is so hard as she is so hateful and demanding. We have quit arguing with her as it is a no win situation. My children are afraid to take care of her because she requires a hoyer lift to move from bed to commode to power chair and she is hateful to them as when they do try she makes them feel like they are hurting her (she is a good actress). She will talk to my sister in law and brother about how she feels frustrated with us and my brother cannot help as he lives to far away. She makes to much money for us to get any help for respite. There is not a therapy center that will even take her on as a client as she is mean to them and refuses. We have home health care come in to change her catheter and draw blood as she is on blood thinners. Thank God that my husband and I have a strong relationship and that we love each other as much as we do but we also have lost alot of our marriage to my mother. I think that this is more of a vent that a question but I really don't know what to do. I am taking tranquilizers and sleep aides and hate it. I also am not in the best health but my mother does not care as long as she is taken care of. I AM STUCK AND HURTING.
Carol
I suggest that before you conclude this is hopeless and you have to keep this difficult demanding woman in your house in order not to lose it, you should consult an Elder Law attorney about ways for your mother to spend down and qualify for Nursing Home assistance. And find out the real situation about the house, don't just assume you'd lose it.
If your mother makes too much money to qualify for respite care, then perhaps she has enough money to pay for it herself. But I'm not sure respite is the answer at his point.
You have taken on a HUGE job and are to be congratulated for caring for your mother for so many years. Wonderful job! But quite apart from her personality, a 280 pound person requiring a hoyer lift, especially one who won't/can't contribute to her own healing, is not a good candidate for home care.
You are not stuck. You do have options. Realizing that is the first step.
I suspect that almost everyone would like to die at home. It is not the dying that is the problem ... it is the months and years leading up to it. It is the nature of the world that we can't always have what we'd like. You have done a valient effort in giving Mother what she wants for many years. It is OK to make other arrangements now.
In spite of what your mother has told you for years, none of this is your fault.
Good luck, and keep us informed.
This is simply not accurate. How NH gets paid is dependent on the persons assets (private pay, LTC insurance or Medicaid) or if family private pays for NH.
If they were in the hospital prior to the NH and were discharged into a NH for rehabilitation, then Medicare will pay for a few days (maybe 28 days?) of their NH stay. Most elderly get placed into a NH from the hospital with Medicare paying for these first few days - this gives you time to get the documents needed to do the Medicaid application for the current NH or find a NH that will take her.
If your mom is at or below her state's Medicaid asset ceiling, then she can qualify for Medicaid to pay for a NH for her and it doesn't matter if she owns, or partially owns a home. If the homesteaded property is 50/50 (Mr & Mrs Smith AND Mom) or 1/3 each (John Smith, Jane Smith and Mom), Medicaid estate recovery can only try to recoup the portion of the home that was hers after her death. But you and your DH (he sounds like a gem!) are paying for 100% of all maintenance/taxes/repairs, etc for your home while she is in the NH, so those costs are deducted from whatever Medicaid recovery (MERP) wants after she dies. MERP can't force you to pay (as it's not your debt) or to sell the home.They could put a lien or claim on the property but that isn't likely on a property without a clear single title.
Now if you sign a document at the NH that says you will personally pay for you mom's care, then it's different. But you do not have to do that. You do whatever paperwork for the NH as your mom's DPOA and sign all documents as that.
Each state manages Medicaid slightly differently. And each state does real estate law and probate slightly differently. It would be well worth it to go a see an elder law attorney regarding all this and come up with the correct paperwork now.
Good luck.