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I am Sandra. My husband, Bill, died November 1, 1999 from CBGD (or rather, the complication thereof). In regard to needing help and where is the church when you need it - The Bible says Ask and you shall receive... A friend of mine set up a support network for me with my church called Funny family. She called about 30 people active in the church who had worked with Bill in various ministries and asked them to come to our house for a meeting- 25 showed up. They were told what the situation was - that I needed someone to come in at various times to sit with Bill (who was total care by then and having great difficultly communicating) so I could go to church services- run to the store for milk and bread- or just go for a walk. Everyone filled out a form indicating what days and times they might be available and what they were capable of or willing to do. No one was scheduled for anything- but if I needed someone, I could just check the list, see who would do what and when and give them a call. Since they had already committed to something there was no hesitation on my part to call them. I knew that if they were not available, they would say so. I got the information on how to set this up from a book called Share the Care: How to organize a group to care for the seriously ill by Cathy Caposella and Shield Warnock.
I also had a caregiver that I hired to work while I worked part time
(approx 20 hours a week). I paid her $7 and she was God-sent. I paid her
straight cash which worked out best for both of us, although I could not
deduct the expenses from my taxes. She was faithful and excellent with
Bill and I could not have existed without her.
The thing about this horrible disease, in my opinion, is that while there are many similar symptoms from person to person, there is no course or direction. Bill had no other health problems, his heart and blood pressure were great - never had a serious illness, so that probably prolonged his existence ( I cant bring myself to say life because for the last 18 months, he did not have one.) His death came from starvation and dehydration (not as bad as you might think). He had made important decisions long before he lost everything - no feeding tube, no antibiotics, no anything. Just let him go. And letting him go was the easiest part of the whole ordeal. I had the privilege of keeping him at home - not so much an altruistic move, but mostly lack of finances to do anything else. And I was with him when he died. I held him and told him I loved him. I told him how lucky he was to be walking into the arms of Jesus, and I prayed with him. He watched me to his last breath and I saw his eyes go blank and knew his soul was gone. I always felt I had lost Bill in May of 1998 when he became total care and the first few weeks were based on that- but I find now, after two months, that I even miss taking care of him. I am OK, though. My family, my friends, and my church are still my support. I think the hardest part is realizing that I can stay home if I want. At first, I was going everywhere because I had been a prisoner for 18 months. I am beginning to slow down and take care of ME.
There is only one good thing I can think of about this horrible disease. It has connected me to many wonderful people throughout the world who have helped me and whom I have been able to help. It showed me the depth of the love of my family, my friends, and my fellow parishioners at my church. I experienced their concern, their care, their pain at our suffering. I have been truly blessed.
If I can be of any further help, please ask. My email address is firstname.lastname@example.org