At a Crossroad
I'm not sure what I'm going to do. Lauren just continues to decline. He ended up in the hospital in early June. It was UTI and constipation. His strength and stability were getting really bad. My daughter from two hours away had to come and spend the weekend before he went into the hospital. It took two of us to transfer him. On June 6 he went back into the nursing home for skilled care, getting PT and OT. He has good days and bad days--mostly bad. He twists his back something awful when he stands and gets to be almost a dead weight while PT is trying to hold him up. I look at that and know I can't manage it. At this point they are saying they will discharge him from skilled services as of July 3. Next Wed. This is because he is not making enough progress to continue therapy.
Now I have to decide whether to chance it at home or transfer him to nursing home level. I know he does better with me and he does better at home. However, I have to be able to manage him by myself and no one at the nursing home, including the PT, is willing to do that now. I also have to consider whether the private duty aides I have can or should be asked to work with him. Without them I know I will fold in a heartbeat.
I talked to him today after a particularly bad session with PT. I told him that I was considering the possibility that I couldn't take him home and that he would have to stay there. It was just truth telling, not trying to be mean at all. I told him that right now he is just not gaining enough strength and I could hurt myself or him if he was transferring that way at home. I asked him what he thought of staying there, how he thought it would be for him. He said, "Awful." Makes me want to cry. I want to try bringing him home but I really don't know if it's the wise thing to do. This is, without a doubt, the hardest decision of my life. I am quite convinced that if I place him there (or anywhere) permanently, it will be the beginning of a lasting decline and there will be no return from that.
Struggling right now. ~~Donna