As usual, Beth, you are doing more than an army of soldiers. Sweetie, your example of strength and patience and your courage and endurance, puts me to shame........ and I almost jumped in my car and came to you. A few choice three and four lettered words came to mind as I have read your posts..... and I'm not one to swear.
Long have gone the days where you got a backrub and a thorough bedbath daily in the hospitals........anywhere. Talk to anyone who has had a hospital stay and you'll hear grief. I think we must avoid doctors and hospitals at all cost.
My sister died on Dec. 5th in her last stages of leukemia. Neither the GP, the oncologist, nor the hospital staff would authorize hospice for her at home. She was discharged from the hospital without help, and didn't even send her home on oxygen when she had it on 4 litres there. They said she was fine and in remission. Less than a week later she had two strokes and went into respiratory failure. Finally she got hospice and they cried (literally) about her condition and what we were dealing with.
We were given a rickety bed. No one knew how to get a catheter into her, and we were scheduled for outpatient appointments yet! Thank hospice for finally making available the morphine and other meds to give her comfort in her last days. Her husband was in denial that she was even failing because of the doctor's reports to the contrary. It was difficult dealing with his emotions.
I knew that her dry cough indicated congestive heart failure or blood clots. She had both. She was also bleeding internally from the bone marrow failure to produce platelets etc. We as amater caregivers knew more than the doctors I guess (We also had the internet to search information on.)
There's more I could tell, but I won't bother. You get the picture.
I guess we must try to count our blessings where we can find them.... the equipment we do have and for the people who know what they are doing.
Rick recently had a swallow test and was told that he could swallow fine but that there are spasms going on. It was recommended that he take a muscle relaxer... yeah right, give an ALS patient who is on a bipap with low diaphragm function muscle relaxers. I know better than that!
Oh, and the technician said he doesn't think Rick has ALS or he would be gone by now. He thinks it is likely Parkinson's... and we know he doesn't lack dopeamine(sp) and the symptoms are far away from that.
Oh boy life is great is you can bear to live it! Bless you Beth!