How do I handle my boyfriend's terminal illness?

[Anonymous]

My long term boyfriend has a genetic disorder that causes organ damage over time.
When we met, he was pretty healthy. Over the years his health has declined.
He is in chronic pain, has horrific nausea and is in liver failure (a transplant is not an option).
Worst of all, he has developed another disorder that causes memory loss due to his liver failure.
He has trouble forming short term memories and frequently struggles to recall very simple things (words, names, how to get somewhere he has been many times).
I always tell him that I am there for him, that I love him and that I'm not going anywhere.
I don't know what else to say or do for him. Has anyone been in this position? Any advice will be appreciated.
I don't know what to do. The thought of losing him terrifies me. He is the love of my life.

[Anonymous]

Have you thought about a counselor? Also, what about hospice care?

I am sorry you are going through this. What a tough situation. My thoughts are with you.

[Anonymous]

Are you seeing a therapist? If not, you should do so immediately.

[Anonymous]

Have you asked him what he would like to do at the end of his life? Is there somewhere he's always wanted to go, something he's always wanted to do that he has not been able to do thus far? If I was in your situation, I would see if there was anything like that and then I would work my ass off to figure out a way to make that happen.

If there was not a specific thing, I would work my ass off anyway and plan something very low key and special for the two of you, as often as you can manage.

How long does he have?

[Anonymous]

OP here. I am in counseling and it's helping. He will absolutely not go to hospice care. He would refuse and I could never put him there. That's not really the issue. I just want to know from those who have been through it what more I can do to support him and how I can handle this for myself. It's very difficult and I'm having very intense emotions about everything.

[Anonymous]

There is really no way of knowing. He could live a year or 10 years. He's gone downhill so much in the last 6 months that I don't have much hope.

[Anonymous]

So sorry OP. Hospice will come to him, in his own home. Hospice is necessary as they make him comfortable.

[Anonymous]

OP, it sounds like you and your boyfriend do not understand what "hospice" really means. Hospice is a designation that allows for a particular kind of care to be provided to a patient who is terminally ill. My experience with hospice care (for 2 grandparents with various issues) was essentially as follows:

When my grandfather decided that he wanted to discontinue treatments for bone cancer, he, our family and his doctor worked with the hospice company to get him care in the home. Two doctors must declare the patient to be terminally ill with less than 6 months to live (which was the scariest part for him). It did not mean that after 6 months, they would discontinue care. It did not mean that they would not treat his symptoms, that he would be denied pain medication (quite the opposite) or that the system would "give up on him". It just triggered another network of support services that he would not previously have had access to. A hospital bed was installed in his living room so that he could raise and lower his torso. A hospice nurse came to the house every day to assist him with personal hygiene matters (my grandmother was 4'10" and unable to assist her much larger husband in this capacity). In terms of his treatment, the only thing that really changed was that they stopped trying to fight the cancer and focused their efforts on reducing his suffering - which is important with a cancer patient as radiation and chemo have side effects and surgery often requires long recovery periods that do NOT reduce suffering. Part of the hospice care he received was also related to his psychological and spiritual process of coming to terms with dying. I honestly have no idea how that was for him as he kept those conversations intensely private. He lived about about 4 months at home and died peacefully in his sleep.

I don't know if your boyfriend would qualify given the nature of his illness, but the thing that I learned from my experience with my grandfather (and later my grandmother, which was slightly different in that she was on a ventilator and needed to be in a home for that) was that hospice does not = death sentence. It just means that you are focusing on a different kind of treatment. It is actually peaceful and quite comforting and can make a quality of life possible that was not previous possible.

Thoughts and prayers with you. I'm glad you're in counseling. Sounds like your boyfriend could also use some counseling.

[Anonymous]

I am very sorry for your situation OP. No, I have never been in a situation like yours, but my best advice would be just to continue on doing what you already are.

You are already doing an amazing job w/him. There really is not much else you can do for him. Or yourself at this point.

The most important thing right now is just to BE there. Keeping your word like you are is a very beautiful thing...

[Anonymous]

You need to get hitched so you can get his SS benefits when he dies.

[Anonymous]

Anonymous wrote:You need to get hitched so you can get his SS benefits when he dies.

You are a horrible, horrible person.

[Anonymous]

Anonymous wrote:

Anonymous wrote:You need to get hitched so you can get his SS benefits when he dies.

You are a horrible, horrible person.

The fuck is wrong with you, calling me horrible? Shut the fuck up. Don't you think he'd want that for her? Please don't post anymore. Jesus.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You need to get hitched so you can get his SS benefits when he dies.

You are a horrible, horrible person.

The fuck is wrong with you, calling me horrible? Shut the fuck up. Don't you think he'd want that for her? Please don't post anymore. Jesus.

OP here. Please stop. We have discussed marriage. He doesn't want me to be legally held responsible for his medical debt.

[Anonymous]

OP, you need hospice to come in now. They will provide a lot of the support you need. But other than that you sound completely normal for someone watching/helping a loved one die. It is the hardest thing you will ever do. It is supposed to hurt. You are supposed to be emotional. The only thing that "helps" with that is time and still then it will hurt. We have evolved into these people who think there will be a pill or therapy to stop the hurt instead of accepting that the pain is a normal part of life.

Hang in there.

[Anonymous]

OP here. Thank you for all the kind words and support. He is not quite at the point that he needs hospice. At this point, he can still care for himself.