END STAGE PARKINSONS

Dad was recently in the hospital for 2 1/2 weeks.  When he came home, the three of us who help with his care asked the brother who lives next door to come over and discuss the decisions we needed to make.  The three of us want to keep Dad at home as long as we can and asked the other brother if he would be willing to help out.  He emphatically stated that he had already told us that he would not help and had not changed his mind.  He stated that we could do whatever we wanted to do but not to include him.  As you said, there always seems to be one who does nothing.  He is the youngest of 5 of us.  He was always treated like a baby and was the one who was always in trouble.  Mom and Dad spent a lot of years worrying about him and a lot of money to help him out of his troubles.  Yet he is the one who has always taken advantage of them and done the least for them.

Right now, we have sitters that come in around 8:00 am and stay until 7:00 pm.  Then the three of us alternate spending the night.  So it's not too bad.  Dad is so appreciative of the things we do for him.  It is 88 but is very docile and easy to get along with.  It is hard to see the tole this disease is taking on his body.  He has difficulty getting up and down, walking without assistance and most day-to-day activities.  He has trouble swallowing and aspirates his food and liquids.  We know that it is only a matter of time before he develops pneumonia again.  He is under Hospice care and they provide aids to come in to assist with grooming and bathing him.  A nurse also comes out twice a week to keep a check on him.  He takes levodopa and I think it helps some.  His biggest problem now is the apirating. 

He really is not living at this point....just existing.  He gets up each morning, does his grooming, eats his breakfast and then "dozes in his recliner" the rest of the day.  He wakes up enough to go to the bathroom, eat lunch and dinner.  The sitters try to get him up to walk around in the house or use a pedal exerciser but he doesn't always feel like doing this.  Then he goes back to bed and starts over the next day.  Before his hospital stay, he was able to go out with us to shopping, watching tennis games, coming to our houses.  But since he has been out of the hospital, he is pretty much confined to the house.  The weather has been so cold since he got home that we are afraid to take him out for fear of the pneumonia.  He stays cold all the time.  He will have on his clothes, a robe and at least one blanket along with the heat in the hose and he is still cold.  Guess that goes along with PD and old age.

Oh well, enought said.  Thanks to this forum for a place to get things off my mind.  Best of luck and prayers to all of you who are dealing with this disease.

I was blessed enough to travel and stay with her last week, 24/7. It was a hard, but a wonderful week. She was still talking and cognizant then and we shared many good sister memories. She is in hospice, thank heaven for these wonderful people that show so much love and comapssion to her. She has refused any means of extended life measure, and I am thankful for that. I can't stand for her to be in such pain and misery. 

Last week, she was having hallucinations and terrible nightmares. Nights were rough and then she would sleep all day. She has not eaten or drank anything now for 2 days. It is hard for her husband and children to accept this as part of the end stage diesase, they keep asking the doctor to give her a new drug or get her into an exercise program. 

The doctor told my brother today that she may have had a slight stroke over the weekend and that would explain why she has declined sp rapidly. They talked last week about moving her to a long term care facility, but that was before she slipped into semi-consciousness.

It's very hard to see her so frail and helpless, when she has been my big sister as long as I can remember. She was always smiling and always encouraging to everyone. I am ready for her to be free of this pain and this frail body. She is ready, too.

I have never known anyone else to have this disease, and I hope I never do. It is awful and oh, so cruel. I will miss her every day, but I know that she will soon be in no pain and she will be with my dad, who she misses terribly and with her Savior.

I pray for a cure for this terrible, debilatating disease and I would not wish this on my worst enemy. I admire and embrace all those who take care of their loved ones that have PD. It is so hard to see your loved ones in such a sad state.

Stay strong and take one day at a time - that's about all we can do.