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I SPENT MANY HOURS reading articles and books about retirement before I actually retired. I knew I’d retire eventually because of how often I found myself out of work. Studying retirement became one more thing I needed to do so I could be successful.
Under the category of retirement, grandparenting was a frequent subject. This is understandable since many retirees are or soon become grandparents.
My situation is different. My special-needs son will not get married or have kids. My son is not financially self-sufficient, and so is unlikely to be able to support a wife and children.
I see my future as three’s company. My son will continue to live with my wife and me until we die or we need to move into an assisted living facility.
We’re blessed to have a child who is self-sufficient, for the most part, with personal maintenance. He can take a shower by himself. He can make his own breakfast, lunch and dinner, too, so long as it involves opening a package, and then either eating the meal directly or first heating it in the microwave.
Anything more and he needs to wait for his mother, since his father is no more skilled at cooking than he is. He’s self-sufficient as long as someone will do his laundry and any cooking. And that someone would be either his mother or me.
I play tag-team with my wife. During the months that she was called upon to take care of her dying parents, I stayed with my son while she went to South Carolina and Long Island, New York. When I wanted to go on a solo road trip, she stayed with our son.
While our day-to-day activities resemble a house with three roommates, we don’t feel comfortable leaving my son alone in the house for any length of time. My wife and I can go out on a date, just not overnight.
Many retirees take advantage of an empty house to recapture the single days before they got married. They also take vacations by themselves, without kids or grandkids. This is not easily doable for us.
We’ve never set up a formal babysitting arrangement for my son. His default babysitter is my wife’s sister—his aunt—who’s retired. But she has grandkids who need watching, and a retired husband who wants a travel partner.
That means that wherever we travel, our son goes, too. Three people can’t travel as cheaply as two. Accommodations are usually quoted for two. Additional members of the traveling party are added at a higher price.
That added cost is fine when we go to an amusement park. It wouldn’t work if we wanted to take a couples-only cruise. Two’s company. Three’s a crowd.
It can feel the way I felt in high school, when I didn’t have a girlfriend. All my friends went on dates while I sat at home. Now all these smiling, happy retirees in the brochures are on their fun cruises, while I’m home with my son. As much as I’d love to travel with just my wife, that’s not in the cards.
We did go to Italy by ourselves once. My son spent the week with his aunt at a Lutheran summer camp on Lake George, New York, where he’s spent many summers with his cousins. It was great for him, as it was for us.
To paraphrase a famous line from Casablanca, my wife and I “will always have Italy.” Remembering that one trip is a very economical way to vacation.
David Gartland was born and raised on Long Island, New York, and has lived in central New Jersey since 1987. He earned a bachelor’s degree in math from the State University of New York at Cortland and holds various professional insurance designations. Dave’s property and casualty insurance career with different companies lasted 42 years. He’s been married 36 years, and has a son with special needs. Dave has identified three areas of interest that he focuses on to enjoy retirement: exploring, learning and accomplishing. Pursuing any one of these leads to contentment. Check out Dave’s earlier articles.
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Dave: The comments seem well advised about finding caregivers and others who can give you and your wife some time together. I encourage you to do so. Four years ago, I flew out to the midwest to take care of my fiance thru her brain surgery. She’s outlived the normal 9-18 months of a glioblastoma. A side effect of the radiation, however, is that she cannot walk. I’ve been with her 24/7 with a 3-4 hour break every for or five weeks. Not a retirement I envisioned. We had many wonderful vacations over the years so we share some wonderful memories. You have a hard life that won’t get easier. You should make some more memories.Best wishes. Rex b
I worked at the L’Arche community, a faith-based community and non-profit that runs group homes for adults with developmental disabilities. Several of our residents had parents and siblings living nearby. Those with families frequently spent weekends at home. All the residents had daily activities outside the home, either in supported jobs, sheltered workshops or “day hab,” similar to senior centers with a variety of activities. Living with peers gave the residents the opportunity to have friends and be part of a family-type home environment. The majority of the funding came from NYS and the individuals’ Social Security Disability. I had great respect for the highly involved parents whose love and care for their children was very evident. I know, David, that you and your wife have surely considered options and, for now, the three of you together is the best one, so I hope you will accept my comment just as an observation from someone who saw the benefits of a well-run, high quality residential program. Best wishes to you, your wife and son during this holiday season.
David,
I have nothing to offer except my profound respect for you and your wife’s dedication to your son.
As others have mentioned, now is the time to look for alternative living arrangements, so that when your son no longer has the two of you, he will have already experienced living “on his own,” in whatever circumstances those may be.
God Loves you and so do I!
I have a relative with a special needs child. He is an adult now.
They found an adult community for him in the next town. He works to his abilities, lives more or less on his own in a supervised environment with others similar to him and has made friends.
They see him all the time, he comes for dinner, all holidays and more. He goes to church with them every Sunday. It has given him a sense of independence and the parents well into their 80s now a bit of freedom and less worries about his future.
Dave, is it possible to find a paid companion who could stay with him for a day or two or over a weekend so you and your wife can spend some important time together? Local churches/synagogues may have some people they can recommend. Neighbors may know of friends and relatives who may be interested in making some extra money. College students might be interested. There are plenty of good and trustworthy people out there. You just need to find one. You and your wife deserve this. Happy Holidays.
David, thanks for an interesting story. I have a few friends and colleagues with special needs children planning for their future is a big challenge. It would be even harder if there are no siblings. Happy Holidays.
With all due respect for your efforts and intentions:
“My son will continue to live with my wife and me until we die or we need to move into an assisted living facility.”
This might be too long. What will happen to him thereafter?
Have you researched options for him to move into assisted living, specialised in younger handicapped persons, already now? You could help him integrate and get used to the place. I am sure there are discussion groups for parents that might help you to find a place he likes.
Please excuse if my reply is too blunt. I understand that you and your wife care a lot about your family and are in a difficult place.
Best wishes to you all.
These are absolutely the right questions to ask: Where will he live when you are no longer able or living? Who will have legal authority to make decisions on his behalf? How will his long term care be paid? In my working career, I ran into this issue numerous times and I was often disappointed by the lack of planning (or outright denial) on the part of parents with disabled children. Answering these questions can be expensive and frequently require the help of a lawyer, but the lack of such planning can be devastating to a disabled child when their parent guardian is no longer able to provide the care and support they need.