My husband is at home in hospice and wants to regain the control he’s always had, (extremely) when it comes to his meds, regardless of the hospice nurses or my gentle suggestions for comfort care. Everything is available for him. He has a rare type of aggressive stomach cancer which has spread well beyond his stomach and was given 6-9 months to live which seems at best, considering how quickly he has gone downhill. It seems
like he must have had it for sometime. The doctor also said chemo, radiation, and stomach removal may extend his life a month he thought, and to call hospice. He hasn’t eaten any solid food in over a week and only sips very little water. His medical directives and attorneys papers state he doesn’t want IV nourishment. He becomes very agitated now it seems with any input from me. I know he knows he may be dying so I understand. I was wondering how to move through this constant feeling of wishing I could do something.
Do you mean he wants to administer his own meds, like regular medications that aren't comfort meds from hospice, is that what you're saying? That he does NOT want hospice care at this point but wants to extend his life no matter what? He wants chemo, radiation and stomach removal as well? I'm not sure what you are saying exactly, so you may want to clarify. Hospice probably will not allow him to take all those 'regular' meds, right? So what happens? You fire hospice?
I think you need to speak to him about what he wants, specifically, now that he has a terminal cancer diagnosis. Don't leave any stone unturned so that you know EXACTLY his wishes; then carry them out. It's up to him how he wants to proceed now, right? If he's very agitated, and understandably so, I'm sure hospice or his regular doctor can prescribe Ativan or Xanax or something similar to help relax him a bit.
Sorry this comment is all over the place, but I am not sure of your question. I am sure, however, that you feel helpless in this terrible situation, as would I. Feeling helpless, I think, is THE worse emotion of all b/c we are 'fix it' types of people. Up until now, there was a problem, we figured out how to get past it. But now, there is no 'getting past' this problem; there is only dealing with it, one day at a time, or one hour at a time sometimes. It's very hard for YOU as well as for your DH, I know.
Please come back and expand on your original question so maybe you can get better comments than mine. Sending you a hug and a prayer that God helps both of you through this difficult time.
Instead of wishing you could do something, DO something - be there for him. Let him do this his way and just support that and hold his hand etc.
(((hugs)))
You say that your husband “wants to regain the control he’s always had, when it comes to his meds”. Is there any problem about allowing him to control the meds he has always had, even if they won’t help – except to let him feel in charge of what was his normality? Hospice might not prescribe them, because they are useless now, but if you have a stock he may still be able to use them. He might be willing to accept the ‘comfort care’ if he feels that it is something ‘new’, not something ‘in stead of’.
It sounds from your post that this is likely to be very quick, so perhaps just do whatever he wants. If you can accept that he is dying, it may help you to get past your ‘constant feeling of wishing I could do something’. There is probably nothing you can do, and you are both facing a difficult time to cope with. When my mother died of cancer, four weeks after leaving hospital, my feeling at the end of it was that we both coped with it brilliantly, with great respect for each other. See if you can get there too. Yours, Margaret
The Serenity Prayer was written exactly for your situation. You don't have to be religious to understand and take in the message --
Grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.
There is nothing more you can do except move him out of the house so you will not have to deal with him 24/7, that is very stressful and if you are talking months. The stress may kill you first.
The last months of my husbands life I moved him into one of our rentals, hired nursing care 24/7, visited him daily for an hour or so to make sure everything was ok.
I had no choice, I had a business to run and he was keeping me awake all night and then sleeping most of the day, in the meantime I was stressed to the max.
Don't react, plan. Good Luck.