If all goes according to plan, we will be back in our condo tomorrow at aprox 3:00 pm.
The ALS symptoms are getting worse. Also Neil has had several heart issues this week. Hospice feels his stymptoms are being "controlled" and we are going home. This is not a long term stay facility. We have been here for 2 weeks.
He is anxious to be home in his own bed and familiar surroundings. We will have help in the house.
He has bad days and worse days lately. The morphine makes him hallucinate, but it is the only thing that helps him when his heart acts up. I have been sleeping on a airbed next to him at the hospice house; that is a comfort to both of us. He is emotional and weepy at times (who wouldn't be?) He has been in bed for over 48 hrs straight. The hospice people here at the facility mishandled the hoyer while gettting him in and hurt him badly; he was in pain for 2 days and now he is afraid to try it again.
The hoyer is the only way he can get into his wheel chair. A new hoyer was delivered to our home today; I will learn how to use it tomorrow. We both hate what is happening, but it is our reality and we are dealing with it as best we can.
Neil feels bad that he has put this burden/worry on his friends and loved ones, but that's Neil. I reassure him that he did not choose to have this disease.
Our friend Terry Haines, whose husband Jack died of ALS, says it is known as the nice guys disease. Small comfort.
Join me in helping to find/fundraise for a cure. Let no one suffer like this.
It will be one of my life's goals.
Cheryl
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