My mother has psp, her husband has a heart condition. My mother-in-law Sue has had "parkinsons" for 15 years now. Her health has deteriorated greatly this last year. She went to a specialist in Jan 2014 who said she has progressive supra-nuclear palsy. She has about two years in which her sight, mobility, ability to speak and swallow will one be one be taken from her. She will be in a bed unable to see or move with a feeding tube in her stomach until she starves to death or has pneumonia. I am told people with this disease pray for pneumonia. Another specialist told her she has bladder cancer and needs surgery every 6 months to remove the cancerous growths so she can keep her bladder and not need a permanant bag stuck to her back
Understandably her 77 year old husband with a heart condition and paranoia issues has freaked out.
He sold their home, bought an RV and has been traveling the country so they can visit grand kids and she can see the country before she goes blind.
The trouble is
1. vehicle only gets 14 miles to the gallon, they spend $600-$1000 between each child's home. (AK, AZ, CA, OR, FL). They are rapidly losing their savings
2. At each child's home they either have to be admitted to the hospital or have car trouble. 3 times while visiting me she had a two week stay in the hospital and he twice had a one week stay in the VA hospital.
3. Friday he fled our home because he was a angry I suggested she see the specialist for the bladder cancer, because it is time for her surgery. yesterday 5 hours from their daughter and 14 hours from mine on a empty bit of road with no one on it, He had a pneumonia attack. He stopped the RV to get out . my mother in law wanted to get out too. He was helping her down the stairs, because she can't walk by herself, he blacked out and they both fell to the ground in an empty field.
I have been praying for them. and at that precise moment, on a dinky road with no cars a paramedics van was passing by, saw them fall and went to help them. They took them to a hospital where he refused to be admitted because no one could take care of sue, At least the paramedics got them up off the ground and into an actual town. The road between redding CA and medford OR has been closed because of a fire so their daughter can't reach them. They are in a Walmart parking lot waiting for a miracle. He does not want us to help them.
We have taken care of Sue many times through the years, I was her sole caregiver one month of the summer while he was visiting his own children because sue hates them and swears at them when she hears their names. When I ripped my transverse muscle trying to get her in the shower, My husband was the sole caregiver for the next three weeks during his vacation period.
John's (her husband) paranoia issues are getting worse. He believes that our side of the family are trying to get her money. What money? All the money will be gone in about 6 months and she still has a year and a half of needing intense around the clock care. She will need a LOT more care every month that passes.
My questions are
1. I don't know if I need to go the legal route in order to keep her safe from his paranoia. Every time he gets mad at someone he puts her in the RV and they drive to the next house.
Considering the horrific death that is facing her, does he in someway think that dying in a fiery car crash would be a better death? What if he dies and she doesn't, and she is lying in an empty field waiting for help? Maybe going the legal route would just make it worse. I don't know
2. None of us have the money, strength or time to be %100 caregivers, 24 hours a day. We all live faraway from each other.
We do have a room for them and my sons can help between 6 and 9 p.m. When her husband is around he takes the night shift. When he drops her at our house to visit someone else, What scott my husband and I have done is take turns with the night shift because she is awake half the night crying, needing medicine, wanting to walk around, even though she can't really walk she just stands there being frustrated and swearing at me.
Now i have ripped my transverse muscle so badly I can barely stand/walk/take care of myself let alone even help her out of a chair. There is no money to put her in a nursing home. 50% of the time she is completely lucid, erudite and has many intelligent things to say. 50%of the time she is a crying 6 year old who is scared of everything. When she is lucid she has asked us not to put her in a nursing home because she does know who she is and she couldn't stand to be with people who drool.
Question-if she stays at our home, we provide the roof, bed and meals, and she has no money can medicaid send in home health nurses to provide her intense medical needs she is going to have?
When John sees that she is in a catatonic state he always brings her to our home, so she can go to the hospital near us. so we know when things get worse he will bring her here. At least we hope that will continue