Caregiver for 42 yr.old son with C.P.

suzandpej · ‎11-02-2017

I am 75 years old and have taken care of my son,Pat, for 42 years. He is in a wheelchair, has Cerebral Palsy. Pat's I.Q. is above 130, but he is trapped in a body that doesn't work. His arms and legs fly around. His speech is difficult to understand. Last year his Dad died, and now I am doing all the caregiving myself. I would love to find a respite day now and then. I have major back problems, fibromyalgia and arthritis. (Not complaining, just stating). I do not have a lift on my car ($$$$) so I cannot take him with me to the grocery store, etc. Working on saving in order to get a lift, so he (and I) can have more of a life. God bless all the caregivers out there!

cindygordon · ‎11-08-2017

It seems that we are in similar circumstances. I am 77 and caring for my 53 year old daughter who, because of four cancerous brain tumor surgeries has to have almost 24 hour care. I can leave her for an hour or so keeping my cell phone ready in case I need to hurry back. She too is very smart and had taught English as a second language in Poland for two years and loved every minute of it. However her father had some health problems so she came back to care for him. She was able to teach locally until her first seizures when she found out that she had a cancerous brain tumor and she was unable to drive to do teaching anymore. Her father continued to get worse until he was completly bed ridden. Through two more seizure attacks and finding out that the cancer had returned, she continued to care for him, as he wouldn't allow any other caregivers or nurses to come in. My other daughter tried, I even tried but he insisted on her, and she loved him so much that she wouldn't refuse. A year ago, he passed. He left the house to her and she sold it and shared the sales with her sister. She moved in with me and was able to share some of the expensives with me for a while, but with another surgery, meds,and all that goes with treatments she has run out of the inheritance. Now we live on my Social Security, which as we all know isn't much.

I'm sorry to spill out my problems to you when you need encouragement, but it is very seldom that you find a situation like ours. It's usually the other way around. Like you, it would be nice to have a break every now and then. I'm sending good thoughts and blessings your way. A little saying that I continually repeat as I go through my day is. "I am healthy, I am wealthy, I am happy, I am positive, and I am THANKFUL. It keeps me going when I'm to the point that I don't know how much longer I can go on. By the way, I love my daughter with all my heart and wouldn't have it any other way, but just a little break every now and then would help.

JaneCares · ‎11-08-2017

@suzandpej wrote:
I am 75 years old and have taken care of my son,Pat, for 42 years. He is in a wheelchair, has Cerebral Palsy. Pat's I.Q. is above 130, but he is trapped in a body that doesn't work. His arms and legs fly around. His speech is difficult to understand. Last year his Dad died, and now I am doing all the caregiving myself. I would love to find a respite day now and then. I have major back problems, fibromyalgia and arthritis. (Not complaining, just stating). I do not have a lift on my car ($$$$) so I cannot take him with me to the grocery store, etc. Working on saving in order to get a lift, so he (and I) can have more of a life. God bless all the caregivers out there!

Now that your husband is gone, you do have a lot of care to provide, and it sounds like you are not in perfect health either (who is, not me.) Have you looked into help? here's a definition of what ADRC's do:

Aging & Disability Resource Centers

Aging and Disability Resource Centers (ADRCs) serve as single points of entry into the long-term services and supports (LTSS) system for older adults, people with disabilities, caregivers, veterans and families. Some states refer to ADRCs as “access points” or “no wrong door” systems.

The vision behind Aging and Disability Resource Centers (ADRCs) is to establish, in every community, highly visible and trusted sources of information where people of all incomes and ages can turn for the full range of long-term support options and smooth access to public long-term support programs and benefits.

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You can find which ADRC could help you by entering your zip code into www.eldercare.gov and call them. There might be help for him, or for you, or both. I would imagine you are also wondering what will happen to him when you are gone. Planning for this is complicated, as you know better than anyone. Someone at the agency you find should be able to direct you.

Your son, being smart, must be a source of companionship for you. Is there a local Cerebral Palsy Chapter near you? I looked up the foundation website at http://yourcpf.org/. Other people in the same boat?

Forgive me if all of this is old news. I'm hoping you and your son can be a happy team. I also know it isn't going to be easy, and i hope you can find, or already have, the support you need.

Write more?

Jane