Last updated: April 2022
As his parents, we have walked with him through childhood, adolescence, young adult, and now moving into the next decade with all the years of being brave and fighting that is built into his character. All we could do as his parents is to admire the man he had become.
Now the reality of a person living with a disability is not always being brave and pleasant. Over the years, we did witness times of his anger with his body’s weakness.
Anger and depression
Unfortunately, he did experience times of depression also. Luckily those trying days did not become a serious problem. The motto always was to keep HOPE alive.
Our experience when Mike was expressing anger or depression was to step back and just allow him to feel whatever his emotions were. We tried some "pep talk" at times, but he let us know when to "back off."
Those days were his parents' saddest. Even though good intentions are meant to "help," the reality is only this person living with a disability understands the pain of it.
Now that Mike had moved into his 30’s, his parents were into their 60’s. The disease was taking its toll on his body and unfortunately, time was taking its toll on his parent’s strength also.
This was a new reality in the journey. Since his siblings were no longer living at home, Mike only had his two parents to rely on.
This is meant to be a precautionary tale to plan for. Again we weren’t prepared for how this disease would affect the family unit.
For 35 years, we were able to be his caregivers without much of a problem. But now we are realizing that in order to give Mike the assistance he needs, it’s time to think of an alternative plan.
We began to discuss the possibility of hiring a caregiver. This wasn’t a popular alternative from all in the family.
Seek help when it's needed
So for the next ten years, we continued to struggle by ourselves. Looking back at this plan reminds me that we should give advice to people living the same reality to seek assistance and not put it off.
As a result of his parents losing strength because of aging, Mike was becoming more insecure. This wasn’t a good scenario, especially for Mike. Obviously, when you are the person relying on secure help because that is what you have been accustomed to, this new reality is very worrisome.
Because of the financial burden of hiring an additional caregiver and after ten years of this tense reality, Mike did some research and found another program. This particular program is through the state of Pennsylvania.
Financial assistance for caregiving
I’m sure that other states have a form of this program also. They provide financial assistance for a caregiver. There is some paperwork and interviews after which an agent is assigned to him.
The agent will make the recommendations for hours per day needed for his care. The most empowering benefit for Mike is that he and he alone can decide who to hire as his caregiver. As an adult, this was the best for his confidence in being in control of his own care.
Have you shared your SMA diagnosis story with us yet?