About living with a partner who has an intractable illness

Hello. Please tell us what you think about living with an intractable partner and caring for him.

Three years ago, when I was living with my partner, he was designated an intractable disease and became disabled. Since I was overseas, I had no relatives I could rely on, and as a result of taking care of him alone for about six months, I also had the experience of getting sick both mentally and physically and collapsed together. Currently, he is recuperating at his parents' house and they are living separately.

Recently, however, discussions have come up about whether we should live together again.
His wish is to reduce the burden on his parents' house and to have his own private living space.
On the other hand, I would like to live with him again, but I have a feeling that I am afraid of being alone with him (I have to take full responsibility) because I have been traumatized by nursing alone in the past. Three years ago, when his mental state collapsed due to his illness, I relied on his family, but in the end, they didn't get any help, and it became a serious situation, so I'm afraid of the possibility that he will fall into that state again.
Incidentally, I'm not married to him. We've been in a relationship for quite a long time, and it's not a romantic feeling anymore, it's a relationship connected by love.

I told him that if we live together again, I don't want to take care of him or take care of his surroundings, and that I can't do it alone. They want to live together as independent people in a relationship with each other. I want external services and his family to take care of nursing care and outpatient support. I told him that I didn't want to be the person in charge of making up for his handicap and that I couldn't do it. You might think he's a pretty ruthless person, but from my experience, this is reality.

So I have a question. Does the position that you live with a partner with an intractable illness but don't take care of them at all actually apply socially? Or, if you don't feel like taking care of your partner, shouldn't you live together?
When there is a family with physical disabilities, there is a tendency that it is natural for everyone to cooperate in any household, and I think that responsibility will be pursued even more if there is a marriage relationship.
However, we are not married, nor are we a family.
I would be grateful if you could give me your opinion, even if it is a harsh word.

4 Zen Responses

Don't sacrifice yourself

If your partner wants you to live together again, it probably means that they want you to help with nursing care, so they won't accept the offer to take care of them even if they live together.
Rather than that, they are told that it is enough to just live together, and I'm worried that you will be forced to take care of yourself in an unruly manner in response to that.
It's a different story if living with your partner again will make you happier than your current life, but if there is a risk of sacrificing your life even a little, then you should flatly refuse.
This isn't ruthless or anything.
Once upon a time, King Pasenadi of Khosala asked Princess Matsurika while climbing a tall building with Princess Matsurika and enjoying the majestic scenery.
“Is there anything more dear to you than yourself?”
Princess Matsurika answered, “There's nothing more dear than myself,” and asked King Pasenadi the opposite.
“Is there anything more dear to you than yourself”
King Pasenadi answered, “There's nothing I love more than myself.”
Shakyamuni, who heard this story, nodded deeply that it was true, and explained, “Therefore, those who love themselves must not harm others.”
No one has the right to sacrifice people.
There is no obligation to be a human sacrifice.
Whether or not you have a marital relationship with your partner is an irrelevant story at this time.

Does he love you as a partner and not as a caregiver

I want him and you to be happy, and I think it would be ideal if we could live a way of living with the people we love. In the current state, all the people around us are burdened. In fact, when you lived together, you were burdened, and your parents were burdened and exhausted at your parents' house. This is the current situation, right?

That's why we have welfare for people with disabilities. Depending on the intractable disease, 24-hour helpers may also be provided. Therefore, he and his parents should know and use welfare for people with disabilities in order to properly protect their families, including themselves.

This isn't an issue you're worried about. What you think is whether you love him that much. Do you want to live together? Would you like to be his partner? Does he also love you not as a caregiver, but as a partner?
Let's think carefully about what kind of existence we are with each other.

The attitude of living with an intractable boyfriend

Thank you for your hard work. You must be tired after being in a relationship with his intractable illness for so many years.
Even though I live with a partner I'm not in a marriage relationship with, I always feel like taking care of them
Isn't it okay to also think that it's not necessary?
His relatives and your relatives may be promoting and saying a lot of things. There's no need for you to get hurt by that.
If you're thinking about living with him, it's important that you keep yourself healthy. Please think that your health and kindness will work to heal him, even if it is not an awareness of nursing. Please read the poem “To Me Now to You Now” below, and close your eyes and take a deep breath for a while. Once your feelings have gradually calmed down, please treat him with that kind feeling. Both he and you,
You'll be able to heal each other.

＜To me now to you now＞
Please look at anger and suffering with awareness.
By observing, that feeling will disappear naturally.
Don't look for the source, and don't make an effort to get rid of it.
The serenity and calm that is born there are children there It provides the peace you want. 
Both the feeling of being happy and the feeling of being sad are in your emotions.  In other words, unless you heal yourself, you can't heal anyone else. 
So let's do it. Let's go back to our true self by observing our breathing. That's how you can save not only yourself, but others as well.
It's important that you really love him. If that feeling is true, you'll be able to be kind to him. Also, your kind feelings will be the most important nursing care for him. I pray that you can be his goddess. I think what is most necessary for nursing care is a deep love for the client. That kindness will heal him from his intractable illness. Please take good care of yourself, too.

In response to the question of whether to live with a partner with an intractable illness

You're torn between living with your loved ones and your own mental and physical health. The thought “I don't want to repeat the same thing again” is very natural because I was in charge of nursing alone 3 years ago and have the experience of almost falling down together. I want you to take that not as coldness, but as a sincere feeling based on reality.

1. Does the position of “not nursing” apply

If you're married, it's easy for your spouse to be strongly responsible for caregiving, but you are not a legal family member. Therefore, there is no “obligation to take responsibility for nursing care” either socially or institutionally. Therefore, putting forward the condition that “they can only live together on the premise that they rely on external services or family” is a sufficiently reasonable position.

2. Criteria for deciding whether or not to live together

However, if they actually live together, an implicit expectation may be born from him and his surroundings that “since they live in the same house, it's natural to help them a little bit.” So,

Clarify who is responsible for nursing care, hospital visits, and emergency response

Make an agreement by leaving it in writing or on a memo rather than a verbal promise

Establish a system so that the burden is not concentrated on one person in the event of an emergency

Whether or not these can be realized is a major dividing line of judgment.

3. The limits of relationships formed by “feelings”

On the other hand, it's hard to leave because you have feelings for many years, but if that is replaced by a “sense of responsibility or guilt,” your own mind will wear out. There are many people who were unable to continue nursing care even when they had love.

4. How to face the future

Declare conditional cohabitation in advance

Use of external services is mandatory

Prioritize your own life (both of you will be unhappy if you are exhausted)

If conditions aren't met, choosing to keep a distance is also an important form of love

conclusions

“Living together without nursing” is not impossible. However, the main premise is to properly arrange those conditions with him, his family, and the service, and create a system where no one person takes responsibility. If that doesn't come true, keeping your distance is also a way to be considerate of him.

Gassho

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