My father has Parkinson's with autonomic failure.
"Autonomic failure is a very tough disease that kills and devastates the lives of thousands of people," says Roy Freeman, assistant professor of neurology at the Medical School. "Without treatment, every vital function eventually stops working."
Autonomic failure is a progressive deterioration of the nervous system that controls such involuntary but vital functions as heartbeat, blood pressure, breathing, and bowel and bladder functions. It is common among elderly people with a variety of diseases including diabetes, Parkinson's, and some less-well-known maladies.
Dad has had this disease for almost five years now. The doctors have all said he is the worst case they have ever seen. He went downhill almost immediately. He didn't get to spend his retirement like he thought he would. He loved to travel, tinker around the garage, spend time with his grandkids and be involved at church. Instead he has spent the last few years inside his home. The only travelling he has done is to and from the hospital. He has got to spend alot of time with my kids though! Just not in the way he had hoped.
But dad has never complained~not even once. He is a fighter. For a soft spoken, gentle caring man he is very tough. He is the bravest man I know.
Every day brings a new problem for dad. Every day brings a new challenge for mom to take care of. She is his constant companion and nurse. She never leaves his side unless one of us comes over so she can take her shower. She loves him more than anything. It's obvious the way she rubs his head and kisses him every few minutes telling him what a wonderful husband he is and what a good provider he has always been. She reads the Bible to him everyday. They listen to hymns. They watch games shows together. They listen to audio books often. Dad even likes Lori Wick novels! Mom has done her very best. She is very tough. And she is the bravest woman I know.
This past week has just brought on too many new challenges for mom, my family and the hospice nurse (that only gets to some once a week) to take care of dad. His bed sores on his bottom have gotten (is that a word?) so bad and now he has diarrhea . Today brought on yet another problem.
My dad went to the hospital today by ambulance. He will be in the hospital a few days so they can try to get his sores a little better, his bowels under control, his blood pressure up, his temperature down, and the list goes on and on.
When (or if) he gets out he will be going to a nursing home. My mom says she can stay with him from early morning to late at night. This was a tough decision for her I know. I guess because we know that he won't be coming home again. Oh, I know I don't know the future. Only God knows. I know He can still perform miracles, but I also am in touch with reality.
Please just be in prayer for my family at this time. If you've faced this same situation then you know exactly how to pray. If you haven't, than just please pray for God's will to be done in this situation. Pray for my mom to know that she has done her very best. Pray that my dad is comfortable. Pray that I can be strong for the both of them. My heart is aching and I can barely breathe today.
Thank you.
I can do all things through Christ who strengthens me. Phillians 4:13
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8 comments:
You have my prayers in abundance, Amy. My dad died 6 years ago in a nursing home from alzheimers, after it became impossible for us to look after him at home. I have been there. Never for one minute feel you, or your mum, have failed him. God is always good. You are never alone. Nor is your Dad. Sending a big hug.
You and your family are in my prayers. I worked in a good nursing home and took care of several clients with Parkinsons, ALS and other horrid diseases. I think the hardest part is the loneliness. Make sure you visit often and encourage others to do so.
It is a shame that hospice/homehealth can't come more often but taking care of someone with these diseases is so very, very difficult. No one has failed. God is in control and how blessed your parents are to love each other so dearly. They are very, very brave as are you.
Hugs in abundance and many, many prayers. God Bless You!
Amy, I will certainly be praying for your dad and the rest of your family. My grandfather had Parkinson's for many years, and he and my grandmother lived with our family for most of it, so I know the load that puts on caregivers and how difficult it is to see your dad that way. There DOES come a time when it's not best for anyone to continue at home though, as hard as that decision is. I pray you all will have a peace about it.
I'm sorry to hear that about your Dad. :( I can't imagine how hard that must be. Hugs! You are always supportive of me and my struggles, I hope that by keeping you and your family in my thoughts that it will give you some of the support that you've given me back.
Oh Amy I'm so sorry to hear of your dad's condition worsening to the point of needing a nursing home now. How hard of a decision that must have been for your mom to make after all these years of caring for him herself.
My grandfather has Parkinson's (although I haven't heard of anyone saying he has the autonomic failure too). He's had a stroke (actually 2 I think) which has left him much weaker on the left side of his body. He has outlived 2 wives. His 2nd wife took care of him much like your mom has done, until cancer took her a few years ago. There was a home nurse who lived-in with my grandfather for awhile, but my uncles finally had to make the decision to to put him in a nursing home as well. I know how difficult this was for all of them- grandfather included - he went from having his own place to sharing a room. It's hard on everyone, but it was a decision that had to be made.
Please know I'm praying for your parents, for strength to get through this time, and also for peace.
Amy, your dear parents are so blessed to have such a wonderful caring Daughter such as yourself.
Please have the faith and courage to be there for your Mom. Assure her that she has been a loving and faithful wife and that by making this difficult decision to entrust your Father's care to that of a Nursing Home is not a poor reflection on her part by any means.
By being able to rest and take care of herself she will be that much better company for her husband. I know from caring for my Gma and seeing her wither away there came a point and time when God's loving mercy was all I could think of, I just didn't want my Gma to suffer. At times it just seemed too much to bare. I pray that they are able to tend to your Father's bedsore and make his life more comfortable and that your loving Mother finds peace and comfort in her decision and that you all remain steadfast and faithful and suportive of one another. Take care of yourself too Amy, your family needs you and the kids need to know everything will be okay. ((hugs of encouragement dear friend))
Great list! Thanks for shareing!
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I'm so sorry, Amy. I had no idea. Your poor, poor mother must be heartbroken. I'll keep them both in my prayers. And you, too.
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