Caring for a husband in a facility hours away

fergus

I have a husband on Hospice in a HCF that is 2-1/2 hours away. He has recently started ignoring me. Turning his head away from me, if I try to hold his hand he will not hold my hand. He acts like he is in severe pain, but the staff say he is great for them. I'm having a hard time with this. I try many things like take him outside, show pictures, play his favorite music. For 3 weeks he hates it all. Wants nothing to do with me. The staff say he chuckles and says words to them. However, when he was doing this with me, he was ignoring them. I think he understands, I don't know. He has dysphasia, is wheelchair/bedbound, on Hospice. He has pain meds and anxiety meds, but the staff do not see this behavior. What dan I do? This is very upsetting, embarrassing, I'm so depressed, I dread going to see him as I'm always ignored. No emotion to me except anxiety and pain. Is this common and what can I do?

towhee

I am so sorry this is happening. Having a LO go thru the Hospice stage is always a change for us and for them. Sometimes the changes come and go, and sometimes they stay. What is important to remember is that it is not you and it is not him, it is the disease. We have tried so hard for so long to make things better for our LOs, and it is so hard to accept that there is so little now we can do. What is going on in that deteriorating brain is impossible to understand. Of course you will be upset and depressed, but you know you have tried and so does the staff and somewhere in his soul so does he even if he cannot show it now. Please be gentle with yourself. Hospice usually has a grief counselor or chaplain, please reach out to them, they are not just for after your LO passes.

fergus

Thank you for your kind words. I know it is his condition and try very hard to not let it affect me. I somehow have to accept this without anxiety and frustration. He is in the last months of his life. I'm trying so very hard. We were so very close. People tell me to remember the good memories. I cannot do that right now, it is too painful. I'm just surviving without breaking.

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