Lynne
Thanks for your input. It sounds exactly as I would want things for myself. My father in law passed, last July, with Hospice help, at a nursing home. It was a dreadful drawn out ordeal. He had Parkinson's disease, going on 25 years, and he managed pretty well at his own home for most of that time. Towards the end though, because he was incontinent, frequently choking, falling during transfers, and difficult to communicate with- I sold his house, and moved him to a nursing home. He was 87. Things went downhill fast at the nursing home- he fell out of bed, his roommate assaulted him, an aid rushed him during a meal and he aspirated food and developed pneumonia- went to the hospital, got a feeding tube, laid in a hospital bed for 10 days- developed bed sores. By the time he got out of the hospital, and back to the nursing home- he was a shadow of the man he was just a month prior. I felt helpless and angry at the nursing home. I called in hospice, and in a matter of 2 months, he passed.
I didn't know that hospice would have come to his house. It would have been so much better. I feel guilty whenever I think about him, and how I didn't do what was best. My husband left all the decisions up to me. My sister in law was far away, and not helpful. She made things worse by criticizing everything I did, but not physically helping.
Just after my father in law passed, my own father was diagnosed with ALS. He is 78, and has been told by doctors- that he has a "mild case", and if they had to have ALS, they would want what he had- not another form. So it is bad news good news. But since his diagnosis, August 2014, he has lost vital strength and is having trouble breathing. His ALS seemed to start in his trunk- he was all bent over for a good year before the diagnosis. His arms are weakened, and his hands, but it is his weak diaphragm that is most troublesome. He uses BiPap at night, and sometimes during the day. I myself, have a birth defect- pectus excavatum, that causes reduced lung function- so I know what it is like to feel breathless.
Even though my dad looks good- his reduced lung function will be his downfall. I feel do bad for him and my mom. My dad was like a super hero- well into his seventies, and still doing major home repair/renovation work, and sailing his 25' boat. He and my mom drove their huge motor home up and down the east coast frequently. Now he can barely walk, is easily winded, and can no longer do the simplest of home repairs.
I have a feeling he will go down fast with ALS, that he will run out of breath one night. My brothers and sister seem to be in denial- saying that Dad is OK, he has ALS, but he is OK. I was the one who got him the tolling walker, while my siblings insisted I was jumping the gun. He could not move without it just weeks later. Next I insisted on the power chair- my siblings getting angry that I was digging his grave. The chair gives him more freedom- not less. Now I'm going to bring up hospice. We shall see how that goes.
