Family Members Forum: Always Be Hopeful

  • I wrote the first Family Members Forum: Helping A Loved One a number of years ago.  I will continue to publish this column now and in the future.  This SharePost's topic is how to have hope for your loved one.

     

    I understand it can seem like the illness took away the person you once knew and replaced him or her with a ghost.  The old person seems to have died and the new person is different.

     

    I'm here to tell you that as long as there's life, there's hope.  There's a person inside the pain.  This person might have changed yet there is hope for that person's life.

     

    One thing you need to do is understand this change.  Did the behavior always exist before the person got sick, or did it start up afterward?  This will determine if what you're observing is related to the illness or is an actual character trait.

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    It can be hard to see your loved one sit on the couch all day so that's where "cheerleading" comes in.  In a positive, cheerful way you can set your expectations for an adult child that lives at home. 

     

    As soon as I came out of the hospital when I was 22, I attended a day program.  This was what was expected of me.

     

    I recommend your loved one do volunteer work if he or she can't work [at this time] at a regular paid job.  In addition to this, I recommend your loved one "make an appointment with himself or herself" to do something outside the house every week.

     

    I recommend using the local branch of your public library as a home-away-from-home.  Here, your loved one can use the computers, read newspapers and magazines, and attend programs.  A library is the perfect Third Place in the community for your loved one to interact with others at his or her own comfort level.

     

    I suggest you read Jill Bolte Taylor, PhD's genius memoir, My Stroke of Insight.  She's a neuroscientist who had a stroke and completely recovered with the help of her mother and her treatment team.

     

    Dr. Taylor's book is instructive to anyone recovering from any setback.  Yet it's particularly aligned to recovery from mental illness.  In My Stroke of Insight, the author gives this insight that applies to individuals with mental illnesses.

     

    First, she tells us:

     

    "I needed people to love me not for the person I had been, but for who I might now become."

     

    Next she tells us:

    "I desperately needed people to treat me as though I would recover completely."

     

    This is brilliant so I urge you to buy her book for greater insight on every page.

     

    You can certainly ask your loved one: "What do you need from me?" or "What do you need me to do to help you?"

     

    Take an interest in any hobbies or activities your loved one expresses an interest in, even if this is surprising.  Encourage your loved one to get out of the house and do the things he or she loves every week if not every day.

     

    Now I will recommend an alternative to a traditional day program. 

     

    The Affordable Care Act or your own health insurance might have a provision that enables your son or daughter to stay on your health insurance until he or she is 26.  This window of opportunity can enable your son or daughter to go to school or do part-time work with an eye towards full-time employment with employer health benefits.

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    So instead of putting their lives on hold: they might be able to more quickly return to having the kind of life any young person has without collecting SSI. 

     

    Collecting SSI for the rest of their lives doesn't have to be their fate.  The average monthly SSI payment is only $729 thus it doesn't cover most rent and the cost of living in most places.

     

    A lot of public libraries offer job search assistance.  Where I work, I help people create better resumes and search for employment geared to their strengths and talents and what they might like and want to do.  Numerous people have gotten interviews and been offered jobs after I helped them with their resumes.

     

    So don't be shy: inquire if your local public library offers this service for your loved one.

     

    Remember what Jill Bolte Taylor wrote:

     

    She needed everyone to believe she would recover completely.  You can certainly set this bar for your loved one: that he or she can recover and have a full and robust life.

     

    Aim for total recovery.  Settle for a comfortable life and the ability to function if total recovery is not possible.

     

    I'll tell you this: research studies offer hope for long-term results.  A number of studies indicate that at the 20-year mark individuals with schizophrenia work and play in the community and have normal lives on par with people that don't have disabilities.

     

    Try not to think in terms of one year or only the next three or five years.  At 10 years is when you will see the best results.  After 15 or 20 years, it's possible your loved one will have a normal life. 

     

    It can be hard to believe this right now.  Yet the future can be better for your loved one.  Just remember, finally, that your words and actions can influence your loved ones in a positive way.

     

    Something you do or say, a private Facebook message or an e-mail today, might not result in a light bulb going off in your loved one's head [or not one that you can see] right now.  Yet five months from now or a year from now or whenever it happens, these things can inspire your loved one.

     

    Always be hopeful: because where there's life there's hope.

Published On: February 24, 2014