MY partner, a 47 year old woman, has a son that is almost 19, whom is severely disabled. Autism, neurological impairments, essentially no functioning intellect at all, etc etc. His behavior at best is that of a 3-4 year old. He is verbal, physically healthy, and now, is as big as me and twice as strong, as I approach my senior years and struggle with my own physical disabilities.
He can become aggressive at times although not often, yet the very idea of a grown man with no control over his emotions or behavior, literally no functioning intellect at all, loose in my home leaves ,me in a state of constant tension anxiety and stress, unable to even sleep from the moment he arrives until the moment he leaves. Although he is mostly harmless, he is rude, obnoxious, thoughtless, clumsy, is constantly repeating meaningless nonsense phrases every second he is awake (which drives me nuts) and requires constant attention and care. He cannot reliably wash his hands, or use a handkerchief when he sneezes,or get dressed or bathe himself, yet his Mom, whom is an angel, and has cared for him alone his entire life, for the most part is either oblivious to his behavior at this point, in denial about or doesn’t care how he affects others, or just simply has the ability to ignore him.
Of course she loves him which no doubt helps. I do not. I try so hard not to despise him knowing he is not responsible for his disability and its symptoms, however, in all honesty, down deep I do despise him because he has brought nothing but suffering , drama, arguments and tears into my life, and do not want to be involved with him or with his care. He is to me,…. a nightmare who has destroyed every dream his Mother ever had for life, and has cast a dark cloud over every minute his mom and I have spent together. Politically incorrect as it may be in these days of fearing honest dialogue, his disability results in a human that is in my mind a destroyer of all things, a constant burden with no redeeming qualities at all…..a nightmare.
You can imagine how his Mom feels. She has indicated hopes that I will learn to love him, yet as far as I am concerned , he has no endearing qualities at all which would make that an unrealistic expectation, and down deep I do not even like him, with the resentment at his constant presence growing every day.
I hate ever second he is around and resent having him involved in our relationship. I have compassion for him and others like him which manifests as a wish for his happiness and an end to his suffering, but I do not feel as though that makes me responsible as his mothers partner to tolerate him as a constant presence in our relationship.My partner is a great woman, smart, well educated, fun to be with, and a SUPER MOM and we would like to spend our remaining years together,( hard to find at our age !) but she intends to care for her adult son herself as long as she can, (which is taking its toll on her health after 19 years) and actually claims she enjoys being with her son.(Impossible for me to understand because he is both withdrawn mostly and otherwise obnoxious)
I would prefer to not have anything to do with him other than the normal level of involvement seniors have with their kids, (holiday visits mainly) We spend every weekend together in my home which I enjoy, but it is a never ending babysitting job with little or no hope of any end in sight. I do not want to spend my senior years babysitting a grown man who spends most of his time looking at a single repeated (strobed) frame of a Barney cartoon, talking to himself, drooling and farting.
My opinion is that there are facilities for people like him, and they exist for a reason. The reason is because no one wants them around because they are so obnoxious, dangerous to themselves and to others around them, but no one wants to say that or hear that ugly truth. (P.C. strikes again ! )
MY partner of three on and off years, is not capable of having an objective discussion about her son. Any attempt to address the issue results in tears, emotional outburst,anger, and eventually outright arguing. In three years we have broken up several times, always because of her son, and have suffered way too much arguing and emotional drama, always because of her son. We have never had an argument ever about any other subject. We, otherwise get along tremendously and enjoy each others company, however we get along because we avoid talking about the issue at hand.
We love each other very much, but I do not want her son in my life or home beyond an occasional visit. Every thing we do, every plan for the future, every dinner date or wish to do something fun, the ability to ever move somewhere else as I age all ends up being controlled by the needs of a man who drools on himself and talks to his Squid doll. It seems like madness to me.
I realize this is a relationship I simply probably shouldn’t be in, but its not that easy when you truly love someone, and you are already in deep.. I am hoping to find a good argument to present to my partner supporting my position that it is neither appropriate, necessary nor healthy for anyone involved, for her son to be a constant part and presence in an adult relationship, and that appropriate care and housing for adults with autism is not a bad thing. I want her to realize that its alright for her to actually have a life for herself, but mostly I want her son out of my hair.
Thanks for listening !
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.
Dr. Marie
