My sweet, beautiful, vibrant sister has had this terrible disease for about
15 years. She is only 59 years young. Just in the last few months, she has declined rapidly. She is bedridden, cannot feed herself, cannot move or talk and doesn't seem to recognize anyone or anything. She stares into space, not really seeing anything. She has fibromyalgia too, (arthritis of the muscle) so she is in constant pain. Drugging her helps her pain, but zones her out.
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.