So I’ve already written in how my dad’s decline had floored me. The last few weeks I’ve cried a little every day, watching him struggle for each breath, staring at the darn oximeter like it’s a Magic 8 ball and not putting the pieces together himself. He’s on 4 liters so not maxed out on the home unit but every little thing takes his energy: brushing teeth, putting on his clothes, standing up. I know he’s been trying because I’ve asked him to (but not demanded and if he said he couldn’t try I’d have already had this discussion) but a few days ago I asked him what is taking the most energy and he said walking to the living room. I asked him does he still want to get out of bed and do things and he said yes but he’s just so tired and everything takes up his energy. He has been using a walker since June 3, but had developed muscle shakes in his arms and legs, what he calls “fumble-itis”. I’ve been there for every little step, helping him dress, go to the bathroom, doing body wipes for bathing etc; he goes nowhere alone and I leave him at whatever place (toilet, sink or desk) no more than a few minutes at a time as he’s a major fall risk now. Only in bed and falling asleep can my eyes leave him for awhile; I’ve a baby monitor in my room so I can hear him at night and he has two phones (cell and landline) by his bed to call me even if he can’t speak much at this point I told him just call me and I’ll answer and tell you I’m coming. He’s having hallucinations about all sorts of things but can still be talked around them and soon forgets he had them. He sleeps over 16 hours in a day: goes to bed at around 10-10:30p, up at 9-9:30, eats a little breakfast (like cupped palm of your hand little), goes back to sleep generally by 11 & sleeps until anywhere from 3-5pm, stays up if he can but usually has another 45-60 min nap in his chair around 7, a small dinner then back to bed for the night.
Anyway, I said I’d start using a wheelchair to transport him wherever in the house & in and out of the dialysis center. I had spoken with his PCP on Tuesday and she said he’s definitely having end of life signs and referred me to a hospice company. I’ve spoken to two of them and chose the one that made me feel like they would care for him better. Now the thing is telling him. I saw in his eyes and body today he’s troubled by his not getting better despite medication for his main problem of COPD and that his BP isn’t improving but his heart is very strong per his cardiologist. He’s trying to sort it out but he can’t see it. I need to tell him tomorrow that he’s going to have his last dialysis on Tuesday and that he won’t have to struggle to get up and out of bed and do things. With him, it’s not real until it’s said aloud so I have tried to keep steady in routine and not press logic on him and just let him go on his own pace. I’ve told him several times it’s not his dialysis not working or his heart that is the reason he’s not getting better but he just can’t connect the dots.
How do I tell him that his struggle is done with? He already knows that family has been coming to see him because his health is failing but they aren’t helping by telling him he looks great and to ‘get well soon’. I know I’ve been skirting the issue but at least I’ve not told him to get better. He’s not in any pain, thank the Heavenly Hosts, but I don’t want him to suffer an extreme like a heart attack or aneurysm from all the effort. He’s not comfortable and his comfort and peace are my responsibility. Please help.