You’ve written a painfully honest letter. I hope writing it helped you at least get your feelings out so you can think more clearly about what to do.
Your partner’s relationship with her son is longer and deeper than her relationship to you, which makes it difficult for her to hear your confusion and frustration. It is often the case that a parent of a disabled child is more committed to the care of her child than to her own life moving forward. There are many good reasons why parents are unwilling to accept services that are available — some good reasons, some not so good.
Many mothers in her situation have already explored residential options that will become available for their adult disabled children and have found them less than desirable. The care in such programs varies enormously depending on where you live and what agencies are in operation there.
Sometimes parents are convinced that no one will love their child or care for him the way they do. They are right about that. Mother love can’t be replaced by staff care. Your partner isn’t convinced she can still love him if he lives or works elsewhere and let staff do more of the daily care. However, if services in your area are good, placing him with people who are equipped to help him in ways she can’t may be the most loving thing she can do.
Sometimes parents find new meaning and mission for their own lives in caring for their disabled children.
And sometimes parents believe they would feel so guilty for turning care over to someone else they can’t bear it.
Or there may be something else going on for your partner that you have yet to understand.
As you already know, arguing with your partner doesn’t help the situation. Instead, try walking more in her shoes. Turn away from resentment and move to compassion. Try your best to understand her position instead of just being upset about it. Assume that she does have good reasons of her own for wanting to take care of her child personally. If you have a better understanding of those reasons, you may be able to come up with other ways to solve them than keeping him at home 24/7.
Then turn your energy to supporting her in exploring options. There may be services available now or in the next few years that would ease the daily care the boy requires and perhaps teach him more skills.
Your partner’s son is probably not eligible for adult services until he is 22. In the meantime, there are usually services available to transition a person from children’s services to adult services. Your partner may be frustrated by the transitional process and may have given up on getting help. I certainly hope that isn’t the case but sometimes getting help for an older teen can be discouraging. You can help her renew her efforts to get more supports for him. Start with the local school department. In most states, it is the school system that funds supports until the child goes into adult services.
I’m going to guess that your partner’s son is already case managed by the state agency for people with developmental disabilities. (In your state, the office that serves people with disabilities is the largest agency in the state.). I encourage you to go to the website for the state agency and to educate yourself about what is available and when so you can have a knowledgable discussion with his mother.
There are probably periodic meetings with a case manager to discuss his care. If you haven’t already, consider talking to your partner about attending such a meeting with her. There may be a day program her son could attend or respite services that would at least give her (and you) a daily break from total care. If she hasn’t already, I hope the two of you will tour the programs that are available to her now and that will be available when he turns 22. Accompanying her may help you better understand the decisions she has to make.
If she is adamant that she will not accept any outside help, you have a very, very difficult decision to make. Your love for her may not be enough for you to sign on for a life that includes her son. But I hope it doesn’t come to that. I hope exploration of service options will open up ways for the two of you to be partners without 24/7 responsibility for her son while still making it possible for the woman you love to be the loving mother she wants to be.
I wish you well.