The online definition of Ankylosing is so far from the reality...some cases are mild and aside from a penchant to bone fragility and occasional flare ups of exhaustion and pain...they're OK. Others can go blind, get paralized, get fused into pretzels that they never get straightened out of. Shatter bones left right and center, constant fatigue, bed bound and immobile...all kinds of fun stuff.
If he is refusing all kinds of care, then there isn't anything you can do.
The ankylosis is really more of an 'annoyance' than a life threatening illness. I have a whole body full of ankylosed joints and while it is annoying and chronically painful, I live a full life.
Diabetes should be treated by the person who has it. My DH has diabetes and simply refuses to treat it. I tried for a couple years to really help him, but he fought me on everything. Finally I accepted that he doesn't CARE and I can't make him. Until he cares more to live and have quality of life, I can't do anything. I learned about diabetes and the management and was very hands on for the first 6 months post-dx. Now he is heavier and less active than he has ever been. It makes me mad and sad at the same time.
You don't mention what kind of cancer he has--and that could be huge or small, depending on the treatment for it.
You literally CANNOT do things for your BF that he doesn't want done. I'm sorry, truly.
Wrong about Ankylosing. It can be far more than an annoyance. While it rarely causes death (which usually involves the fusing of the rib cage and stifling the heart) it makes life unbearable in many cases and causes you to be unable to fight off many illnesses. It can lead to blindness, shattered bones, absolute fusion into bizarre and painful positions that you cannot get out of ...it is horrible and exhausting. It needs constant monitoring and treatment.
The caregiver role changes the relationship between couples even if the couple is married. That's not the only thing. At least, the married caregiver has legal standing. The unmarried caregiver does not. Please consider this and be careful.
He is entitled to not getting help. I would think he is in pain. If he doesn't want treatment, you may want to call Hospice in. At least that way he can be kept comfortable and pain free.
You can support his decision to receive no treatment. You can suggest Hospice. (Hospice is not necessarily 6 or fewer months, if he is rejecting treatment he should qualify) With Hospice you will get support from a Social Worker as well as a Chaplain. You and he will receive care from a Nurse as well as a CNA and there are other Disciplines that can be offered. OR If you do not agree with his decision you have to be honest with him and tell him. At that point it is your choice to remain with him or you can choose to leave him.(that sort of sounds heartless I do not intend to be so it is being honest with yourself and him as to what you can manage) There are Support Groups for each condition that you can contact for information and support.
My own mother has numerous co-morbidities she’s not treating for. She has invasive squamous cell skin cancer, inflammatory breast cancer that is spreading, and end stage congestive heart failure. She is on hospice. Hospice provides comfort care for her and she is managing well - considering what she has going on. Your boyfriend’s diabetes can be controlled by eating a proper diet. He can help out with that. If not, what can you do if he chooses to eat poorly? Hospice can just do their best to make him as comfortable as possible. And you will watch a slow and painful decline. Some people are just stubborn and there’s nothing any one can do about it. None of this reflects on you or your love for him. You can not love him enough to make him well if he rejects the help that is known to make him more comfortable.
Some good responses. Talk to the AgingCare organization in your area. I'm sure they will have some good ideas for you. I'm a 24/7 caregiver and fortunately one of my HHA taught me the ropes.
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How old is he? How old are you? What type of cancer does he have? What is his prognosis? How much daily care does he need currently?
More info would be very helpful, thanks.
The ankylosis is really more of an 'annoyance' than a life threatening illness. I have a whole body full of ankylosed joints and while it is annoying and chronically painful, I live a full life.
Diabetes should be treated by the person who has it. My DH has diabetes and simply refuses to treat it. I tried for a couple years to really help him, but he fought me on everything. Finally I accepted that he doesn't CARE and I can't make him. Until he cares more to live and have quality of life, I can't do anything. I learned about diabetes and the management and was very hands on for the first 6 months post-dx. Now he is heavier and less active than he has ever been. It makes me mad and sad at the same time.
You don't mention what kind of cancer he has--and that could be huge or small, depending on the treatment for it.
You literally CANNOT do things for your BF that he doesn't want done. I'm sorry, truly.
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You could be subject to a ton of abuse. Good luck...hugs 🤗
You can suggest Hospice. (Hospice is not necessarily 6 or fewer months, if he is rejecting treatment he should qualify)
With Hospice you will get support from a Social Worker as well as a Chaplain. You and he will receive care from a Nurse as well as a CNA and there are other Disciplines that can be offered.
OR
If you do not agree with his decision you have to be honest with him and tell him. At that point it is your choice to remain with him or you can choose to leave him.(that sort of sounds heartless I do not intend to be so it is being honest with yourself and him as to what you can manage)
There are Support Groups for each condition that you can contact for information and support.
I am terribly sorry that you are in this situation.
Do you know why he is reluctant?
Has he spoken to anyone else about his condition, such as a social worker?
Maybe it would be easier for him to speak to someone objective and not as close as you are to him.
Is he trying to protect your feelings by holding everything inside?
Personally, I refuse to help someone who is unwilling to help themselves. Yes, this applies to family members.
Give some serious though to what this relationship means to you? How long have you been together? Has he ever taken care of himself?
What care giving or support does he expect from you?
What is he doing for you? What are you getting out of the relationship?
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