Caring for terminally ill spouse with a twist

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.

Nadine, hun, It breaks my

Nadine, hun, It breaks my heart that you're going through this, my story sounds so much like yours, except my husband finally decided to go on hospice, he's been on hospice for a week, the anger has been worse, today was especially hard, one of the worst days, ever. He was diagnosed January 2019, very cirrhotic, stage 4, he has done well, up until about a year ago, he started saying inappropriate things. He said something to my Mother, she never forgot it, but she forgave him. She passed away Dec. 13th, my husband was still driving and going to his friends. I stayed with my Mom, when she got bad and helped my Dad as much as I could, but like you, I am 100% disabled, I only weigh 105 pounds and I was bedridden for almost a year, I had to learn to walk, again with pt, and ot, I started walking almost a year ago. My husband never helped with my physical therapy or occupational therapy. He brought some young boy to stay with us to help me, I'm 57, I didn't mind the young man doing things around the house, but I would call my husband, to come talk to me, when I was in excruciating pain and he would send the young man to talk to me. I needed my husband for emotional support. I got none. I had 3 surgeries from behind knocked down by a horse and kicked in the ankle. It broke my fibula, my tibia, and dislocated my foot. My orthopedic surgeon wanted me off of it. She said it might take 2 years to walk. Then I developed complex regional pain syndrome. A rare disease that has no cure and Drs. really don't know how to treat. It is more painful than childbirth or amputation.  The pain never goes away. It's debilitating, but I am now my husband's caregiver, when I should actually have a caregiver. Complex regional pain syndrome doesn't kill you, it's just torture, non stop.  It's called the suicide disease.  I love my husband, but he is verbally abusive, he has called me every bad name under the sun, told me he hopes I burn in hell, talks about my daughter, gets mad if I don't know what he wants, even if he doesn't tell me. He calls me a liar, told me I was white trash.  We've been married for 17 years. I have never called him names. He told me to get the F out, today and started trying to poke me with his cane in my leg.  He said he was going to get his ex-wives to come and live with him, they would take care of him. He said I've never helped him, I was a lazy b. The Chaplin called wanting to do his 1st visit, I had him on speaker phone, he asked what my relationship was to the patient? My husband said, she's a stripper, she stops by occasionally. He has had outbursts, before, they only lasted a little bit. This was all day, so I called his hospice nurse, she said, that's just part of it. When he talked to someone on the phone, he was nice as could be. I tried to call one of his friends to see if he could come talk to him. He didn't answer. So, I called 911. He became infuriated, he said tell them to come on, and he put the shotgun under the bed. 5 police officers came, I told them, this was not normal behavior, one of them was familiar with stage 4 cirrhosis, his grandfather passed away from it. He said it's only going to get worse. They told me to get the guns out of the house and hide all the knives. I am still really scared, he is fuming because I called 911, but I didn't know what else to do! He is still telling me to get the F out of his house. Both our names are on the deed. I now have a horrible migraine and my foot and leg feels like it's on fire.  I hope your situation gets better, I really do understand and I know how hard it is!