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Caregivers of children with disabilities or siblings with disabilities
Caregivers | Last Active: Jun 20 6:54am | Replies (16)Comment receiving replies
@ess77 Thank you the information! We cared for my husband’s mother until she passed and then about 5 years later for his aunt who had no children.
The one difference here is my sister is developmentally delayed. She cannot use handicap services like rides and shopping trips or trips to the dentist. She functions somewhere between a 5-8 year old. She cannot handle money or decision making for herself.
This thread was started to discuss similar issues of children or siblings with disabilities.
I’m hoping for sharing with others managing care for children who were born with disabilities.
Sounds like you did a fine job helping your mom, sounds very similar to how we managed care for our older family.
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@triciaot and all... Thank you, I did help my mother with love and respect. What I never mentioned is after her death, I had a few years of my own life to recover and heal, to actually meet friends again and socialize. However, I had to focus on improving my emotional, mental and physical health before I could again be active in the community.
Then, several years later, my 35 year old son who had started a law practice in another state and was doing quite well, was in love and hoping to marry soon... He was stricken by a rare movement disorder and was 100% disabled. He is now 57, 100% disabled, far worse, almost immobile, in constant severe nerve pain at times to the point of screaming in pain, etc...He moved to live with me for a couple of years then bought a place across the street to be as independent as possible. We now live across the street from each other, I have been and am still his helper. I handle all his medical needs. His appointments. His medications. His emergencies, His falls. He lives separately, but not independently.
I have no idea how he will manage when I die. And that will not be long in the future. I have multiple serious illnesses now. Am bedridden. Can't move into facility of any kind as I can't leave him.
So, yes I discussed my mother's care. But, I am now for the past 22 years my son's caregiver, assistant, helper, emotional support, and whatever he needs. I have for 22 years dedicated my life to helping my precious son survive living in true hell in constant pain and many other issues. Fighting the crazy medical system and doctors who don't understand, or don't have any knowledge of this illness, or have no way to help, or just want to throw heavy drugs at him.. for years and years and years... Until finally, I find one doctor. Then one more. Then a pain doctor. Then Mayo and Botox injections. Now more help from Mayo...
Finally... after 22 years of fighting for his survival! A brilliant man who lost everything at 35 years of age... Brilliant. Now, watches TV, YouTube, and can at time play games on his computer when the pain isn't too bad and his hand will work.
Yes, Ruby Slippers, I qualify to speak on this thread.
Be well. Elizabeth