When Someone You Love Is Disabled

Alison & Barry    I confess. I was one of those people who never thought much about disabilities. Although I have had health problems through the years, none has left me unable to do the things I wanted to do. So my focus on disabilities was more about placards on cars and signs in parking lots.

Then 16 months ago my husband had a stroke. It left him unable to use his left arm or leg, but we were lucky that his mind was fine and his speech, initially a little garbled, recovered quickly. Suddenly, things that hadn’t been important to me became critical. I noticed when people pushed past us as he was in a wheelchair, or when all the handicapped spots were taken at a doctor’s office. I was suddenly aware of how people treated him differently or looked at us out of the side of their eyes.

My husband has worked hard to recover from the stroke, and now he can walk with a cane although he is slow and a little wobbly. He can only use his hand a bit. While this has been great, in some ways it has made others more thoughtless. The other day we were going down a few steps and a young teen rudely pushed past us, almost toppling my husband over. He did not apologize and his parent snarled “Why don’t you move a little faster.” Even I expect more from him and find myself saying “Come on, you can do that.” (Am I encouraging him to do more, or being a nag…sometimes I am not sure.)

He may never play golf again, or go fishing, although he is optimistic and continues to work hard in therapy.  I am reminded every day that he and I have to recalibrate not only our plans but our relationship. We need to examine our emotions and figure out what hurts and what feels good. And we need to find ways to be in the world and do things that are satisfying. The tips below are often a challenge, but they also represent a path forward that we can work on every day.

*Acceptance – We both need to accept that our lives have changed and that we can still grow and have fun, but in a different way. There are days when that acceptance is hard to handle, and one or both of us lament what has been lost. Trying not to dwell on it and to find other goals is where we land, sometimes after a few tears.

*Expressing Feelings – there are going to be sad, frustrating, or angry times. Learn to let your feelings out, if not to one another then to a friend, a family member, or a mental health professional. Keeping them inside just keeps them growing and then it feels like a roller coaster of negative emotions.

*Create Goals – If you were going to travel, figure out how to do it, even within your partner’s limitations. If your partner can no longer ballroom dance, find something else to do together. It is important to have something to look forward to or, as my brother said, “You have to live the life you have now, and not wait for it to get better.” Finding things to do that give you purpose and fulfillment can change how you see the world.

*Ask for Help – As a psychologist, I am used to helping people, not asking for help. But I have had to learn to ask friends, family, and doctors for help. It gets easier over time, and I am no longer embarrassed to ask.

*Deal with Depression and Anxiety – Yours, mine, ours. In the last 16 months, we have both experienced depression and anxiety. Medication, seeking professional help, and making use of support groups can all help. Finding out how others handled a situation like yours can be empowering, and knowing that you are doing something right can be encouraging. Learning all you can about your loved one’s disability and how other caregivers cope can also be beneficial.

If you or someone you know is a caregiver, please feel free to share this blog. And if you are interested in participating in a caregiver support group, please contact me via my website at: Send Alison a note via her website or call her office at 732-933-1333.

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