Caring for terminally ill spouse with a twist

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Caring for terminally ill spouse with a twist

In a nutshell, I am the primary & only caregiver for my husband.  He is 66 years old and developed Crohns' Disease when he was in college.  He received a tainted pint of blood  in one of many transfusions when he almost bled to death on Mothers' Day in 1970.  That tainted blood , as far as we can tell, produced the Hep C he now suffers from.  In Jan 2002, we were told he had 10 to 15 years left to live.  He has Crohns' Disease, Hep C, emphysema,  cirrhosis of the liver, and other forms of COPD. He calls himself 'a do it tomorrow type of guy'.  He has said he would call Hospice for an assessment to see if they could help us now but then said he wanted to wait until our back porch was partially rebuilt.  It has now been partially rebuilt, and he says he will get around to calling Hospice - which means he won't.   The more I ask about something, he says I'm nagging or arguing and he won't do it. His behavior has become absolutely horrible and I don't know if it is due to the illnesses, our relationship or what.  I admit freely I am no angel.  But I have verbal abuse heaped on me every day, have had him nose to nose with me yelling and spitting in my face, and been pushed by him.  He either can not, or chooses not to, do most everything.  If something has to be done, I get to do it.   I wish I had some way to tell when he acts like a child due to his illnesses and when he acts like a child because he chooses to. He told me tonight he is sleeping out in the screened-in Florida room with  nightime low temps near or at freezing as he is trying to get pnemonia and die. There is a twist in my being the caregiver.  I am 100% physically disabled myself, on disability and medication, with limitations on me set by my own body.  So I am trying to care for a terminally ill spouse in a 2 story home while needing a caregiver myself with no family or friends available or willing to help.  The nearest in-person caregiver support group is 2 hours away from us.  I can handle only short, local trips as a driver as I have limits like I cannot twist to check on traffic, and I have to stop about every 30 minutes to walk around for  5 to 10 minutes before resuming the trip.  The meeting is 2 to 3 hours long, so you can see the travel would be approximately 5 hours roundtrip for a 2 hour meeting.  My husband is not physically able to make the trips.  I hope this group will be able to offer some guidance for and to me, and I hope to offer a broad shoulder back.  Am I hopeless?

mlhaynes02's picture
It gets better

I wish I could help. It's unbelievable what you're going through. Hang in there. It gets better with time.