Anonymous wrote:OP, I just read your post from November. Have you two re-evaluated or given more thought to hospice? It has been about 6 months since your last post and you say he is doing worse now.

No. He's moving home to be with his parents. His mom will care for him.

OP, I just read your post from November. Have you two re-evaluated or given more thought to hospice? It has been about 6 months since your last post and you say he is doing worse now.

OP from your pp it says your boyfriend is dying from liver failure. I am so so sorry you are going through this. I just lost my father to liver failure and I know it is a horrible way to die. My only advice is to make sure your boyfriend knows how much you love him before he goes. I put off talking to my father because I was upset with him and I thought he had more time. Then he died suddenly and I hadn't talked to him for a month. The guilt has made the mourning process so much harder, sometimes I feel like I will never be able to move on and be happy again. If he does move back home with his parents just try to make sure you leave things and a good note.

Anonymous wrote:OP, is this you? http://www.dcurbanmom.com/jforum/posts/list/343211.page

Yes

OP, is this you? http://www.dcurbanmom.com/jforum/posts/list/343211.page

Anonymous wrote:There are no support groups for it. I have scoured the earth looking for a support group. I have nobody to talk to who actually understands. Feel very alone.

There are support groups for caretakers of those with terminal illnesses. It doesn't have to be specific to his disease.

There are no support groups for it. I have scoured the earth looking for a support group. I have nobody to talk to who actually understands. Feel very alone.

I am so sorry too.

I have been seeing a therapist for about 6 months. I was also put on anti-depressants, which has helped.
He has hemachromatosis. With treatment, people can live a full, symptom-free life. He was misdiagnosed and then his insurance company refused to cover treatment. Now he has severe liver damage, osteoarthritis (he had to have a double hip replacement 2 years ago) and many other horrid symptoms.

See if there are support groups for patients and caregivers with his particular illness.

I'm sorry OP. Have you posted about this situation before? If not, there was someone on here with similar circumstances. In a weird way, I hope there are two of you so you can support each other.

Wow. That's so sad. What does he have?

I'm sorry Can you talk to a professional to help you sort out all the complicated feelings around this?

I am very sorry, OP.

I am 32 and have been dating my BF for 6 years, living together for 1.
He has a degenerative disease. When we met, he had very few symptoms and his doctors had a handle on everything.
Over the last year, his health has gotten much, much worse. He is in almost constant pain, can barely walk and his memory and cognitive abilities are being affected. He is in a bad mood everyday, which is understandable. I spend my days worrying about him. It has taken over my life. As a result, out relationship has suffered. We are very rarely intimate and live more like roommates. I love this man but this disease is taking everything away from us.
We were laying in bed and he told me that he feels horrible guilt for robbing me of my life. He said that I deserve to be with someone who can give me the life I deserve, someone who I can live a full life with. He then told me that he is planning to move to his home state to live with his parents because he knows he can't work for much longer and because he knows he doesn't have much time left.
My heart is broken. I don't want to be away from him.
I worry that I will never find love like I had with him. I worry that I will compare future partners to him.
I'm afraid of facing a world without him in it. I feel so sad for him.
I don't really have a question. I could really use some words of encouragement or advice from someone who has been through something similar.