More decisions/more caregiving
Been a rough few weeks. Dad has had some memory issues for the past year or so. But, he went with us to every one of Tyler's football games, including the State Championship at Camp Randall; and to every one of his basketball games except when they wen to State because basketball tournament was 3 days and he did not want to spend a couple nights in the hotel (football was one day - down and back - no overnight stay). This was the end of March.
The first part of April, Dad began showing more signs of dementia - more confusion, etc. I wanted him to go to the doctor but he refused. Then he began falling. He lives alone, not far from us. DH is retired but working about 6 hours a day because of the expense of raising our teen grandson. But I took Dad his breakfast, DH went over there about 11:30 to check on him and get his lunch, then he brought him to our house about 4:00 and he visited, I gave him is medications (high blood pressure & cholesterol), we had dinner, he would visit longer, then we took him home about 9:00 - 10:00.
DH began finding him laying on the floor sometimes because he'd fallen and he could not get up by himself. He still refused to go to the doctor. Then the hallucinations started - DH found him wandering around outside saying his mother called and told him to take money to his grandmother and he was walking to her house but could not remember where she lived. One morning I found him laying on the floor when I took him breakfast and THANK GOD Tyler had not left for school yet because I could not get him up alone. I called Social Services and a doctor begging for help but was told there was nothing anyone could do. He needed to be declared incompetent before they could activate my POA but until then no one could force him to go to the doctor or hospital, and nothing we said would convince him to go. I sat in my car and cried.
Finally, on the 5th of May I convinced him to go to the doctor and they did activate my POA. They also ran blood tests and made an appointment May 20 with a Memory Clinic for evlauation. Dad continued to decline rapidly, losing bowel & bladder control, hallucinating more, falling more, etc. My brother moved in with Dad then. Donny has Huntington's Disease, the same disease that killed our mother. He is disabled also, but he is able to use a microwave to warm food and call for help if Dad fell.
My brother's daughter moved in a few days later and said she would take care of Dad at his home if we wanted (we would, of course, need to pay her as it would be a full time job). When he went for the appointment at the Memory Clinic, the neurologist admitted him to the hospital for more testing because he was deteriorating so rapidly. The tests do not show anything difinitive but they think it might be NHP or a comination of NHP and Alzheimer's but they said the damage to his brain has been done and nothing will undo it. They are moving him to a nursing home rehab tomorrow for the 20 days that Medicare will pay for.
I had to make the decision about whether to move Dad to a Memory Care facility or hire my neice to take care of him in his home. I struggled so with that decision, but then realized that if he was at home I would always worry and would never have a moment of peace. DH and I have not been able to do anything together for the past year because Dad lives in the country and we have no one else to help with him, so one of us always had to be there to take care of him. The Memory Care facilities I toured said the average length of stay for residents is 15 years!
Also, my neice is a nice person, but she is the poster child for ADHD and caring for both Dad, her father with Huntington's Disease, and her 6-year-old is beyond her capabilities in the long term. If Dad is released from rehab before there is a room open in one of the Memory Care facilities (he's on the waiting list for two of them), he might need to go home with my neice taking care of him for a bit. The Memory Care facilities require the person be able to pay for the 1st 6 months of care and if I spend the $7,000/month for a nursing home until there's a room for him, he would not have the funds to pay for the 1st 6 months. I also need to set up an irrevocable burial trust for him and apply for MA for when he runs out of funds. The Memory Clinic social worker told me to apply NOW, not wait until he's out of money as the aging options counselors had told me to do, because even though he will be turned down for MA because he has too many assets, it will put him on the waiting list for the MA beds at the Memory Care houses. Otherwise, if we wait until he's out of funds then apply, he will be at the bottom of the waiting list for an MA bed and they might just put him in a nursing home. Once he's in a nursing home, the odds of his ever getting moved to Memory Care are nearly zero.
I'm really pretty much on my own caring for Dad. My mother died from Huntington's Disease - Dad and I cared for her at their home (with assistance from home health workers) until her death 3 years ago. I only have one brother and he's disabled from Huntington's Disease, and DH and I are raising our grandson. It's going to be a tough few weeks/months - depending on when we can get everything ready and Dad settled into a better environment. I HATE being in limbo like this. I do not handle uncertainty very well.
The first part of April, Dad began showing more signs of dementia - more confusion, etc. I wanted him to go to the doctor but he refused. Then he began falling. He lives alone, not far from us. DH is retired but working about 6 hours a day because of the expense of raising our teen grandson. But I took Dad his breakfast, DH went over there about 11:30 to check on him and get his lunch, then he brought him to our house about 4:00 and he visited, I gave him is medications (high blood pressure & cholesterol), we had dinner, he would visit longer, then we took him home about 9:00 - 10:00.
DH began finding him laying on the floor sometimes because he'd fallen and he could not get up by himself. He still refused to go to the doctor. Then the hallucinations started - DH found him wandering around outside saying his mother called and told him to take money to his grandmother and he was walking to her house but could not remember where she lived. One morning I found him laying on the floor when I took him breakfast and THANK GOD Tyler had not left for school yet because I could not get him up alone. I called Social Services and a doctor begging for help but was told there was nothing anyone could do. He needed to be declared incompetent before they could activate my POA but until then no one could force him to go to the doctor or hospital, and nothing we said would convince him to go. I sat in my car and cried.
Finally, on the 5th of May I convinced him to go to the doctor and they did activate my POA. They also ran blood tests and made an appointment May 20 with a Memory Clinic for evlauation. Dad continued to decline rapidly, losing bowel & bladder control, hallucinating more, falling more, etc. My brother moved in with Dad then. Donny has Huntington's Disease, the same disease that killed our mother. He is disabled also, but he is able to use a microwave to warm food and call for help if Dad fell.
My brother's daughter moved in a few days later and said she would take care of Dad at his home if we wanted (we would, of course, need to pay her as it would be a full time job). When he went for the appointment at the Memory Clinic, the neurologist admitted him to the hospital for more testing because he was deteriorating so rapidly. The tests do not show anything difinitive but they think it might be NHP or a comination of NHP and Alzheimer's but they said the damage to his brain has been done and nothing will undo it. They are moving him to a nursing home rehab tomorrow for the 20 days that Medicare will pay for.
I had to make the decision about whether to move Dad to a Memory Care facility or hire my neice to take care of him in his home. I struggled so with that decision, but then realized that if he was at home I would always worry and would never have a moment of peace. DH and I have not been able to do anything together for the past year because Dad lives in the country and we have no one else to help with him, so one of us always had to be there to take care of him. The Memory Care facilities I toured said the average length of stay for residents is 15 years!
Also, my neice is a nice person, but she is the poster child for ADHD and caring for both Dad, her father with Huntington's Disease, and her 6-year-old is beyond her capabilities in the long term. If Dad is released from rehab before there is a room open in one of the Memory Care facilities (he's on the waiting list for two of them), he might need to go home with my neice taking care of him for a bit. The Memory Care facilities require the person be able to pay for the 1st 6 months of care and if I spend the $7,000/month for a nursing home until there's a room for him, he would not have the funds to pay for the 1st 6 months. I also need to set up an irrevocable burial trust for him and apply for MA for when he runs out of funds. The Memory Clinic social worker told me to apply NOW, not wait until he's out of money as the aging options counselors had told me to do, because even though he will be turned down for MA because he has too many assets, it will put him on the waiting list for the MA beds at the Memory Care houses. Otherwise, if we wait until he's out of funds then apply, he will be at the bottom of the waiting list for an MA bed and they might just put him in a nursing home. Once he's in a nursing home, the odds of his ever getting moved to Memory Care are nearly zero.
I'm really pretty much on my own caring for Dad. My mother died from Huntington's Disease - Dad and I cared for her at their home (with assistance from home health workers) until her death 3 years ago. I only have one brother and he's disabled from Huntington's Disease, and DH and I are raising our grandson. It's going to be a tough few weeks/months - depending on when we can get everything ready and Dad settled into a better environment. I HATE being in limbo like this. I do not handle uncertainty very well.
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