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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
God bless you both on your journey of love and support. I cared for my mom from the point she chose to not drive to her last breath-five years of twice daily multi hour visits and working two part time jobs. I got as much s possible done through Amazon delivering Boost, diapers, shampoo, detergent to a fabulous laundry service that used my unscented detergent, folded her clothes like new from the store and spent 15-30 minutes visiting her every delivery, CVS bringing her meds, Ralph’s delivering groceries, so I had time to shop and bring her under clothes to try on and then take back the rejects, find the right pjs and lounge wear, but mostly able to spend more quality time with her as I wasn’t washing clothes at home at midnight. I was blessed to live 5-10 minutes from every place I needed to move her to over time, Swedish Death Cleaning all the way, my brother was local too to bring her ice cream every day and visit…mostly had doctors I vetted, fighting to get her the pain meds to give her a mostly pain free all the way, 100 plus doctor appointments most years, and I wouldn’t change a thing. I would do it again-and, am here for my brother who is fighting glioblastoma of the worst kind if he decides/needs me. It was my joy to be with her through the most poignant times of our lives. Yes, it took away years where I might have found a partner, traveled, had a good night sleep even-But! I was there to give back to the nicest, most educated, dignified and warm person I have had the delight and privilege to know and share a life with-my mom.
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@judyandchloe and all... How lovely Judy. You sound like a kind, loving person your mother and brother are blessed to have in their lives. I feel the same about my mother, who was a true example of a lady, a precious woman who filled her world and everyone around her with light and joy. I'm not exaggerating - I know of not one person in her entire life who didn't like her or with whom she didn't get along. Well, maybe one in the Garden Club when she was president for the entire city... there was one person... but to my knowledge, that is the only one! An amazing woman in a difficult time for women, as was my generation with such societal upheaval in the work, interpersonal worlds. I miss her company, our chats, our shopping trips and whatever to this day!
I feel a great honor to help my son now. It's very hard to watch, again, the slow death over years of a loved one... but much different than the 12 years with Mom's Alzhiemers. She was healthy physically, thus the long 12 years of mental deterioration. His body is killing him with extreme pain and movement issues. He has many crises almost daily in his life, often needing my help either by phone or in person.
Thankfully, I can usually walk with assistance, cane, walker, wheelchair if I'm in extra bad shape. So, I can get to him if he falls or is in need of me. We even have for the last couple of years prior to my 2025 long hospital and rehab stays, enjoyed evenings at his place watching movies or series on his huge, wonderful TV with surround-sound, and chatting a tiny bit. He's having more difficulty talking due to the pain and effects on his face/jaws as well. But, we spend quality time together and it gives us both human companionship.
Now, since I'm still attempting to recover from last year's mess, we don't have those lovely evenings. But, I pray and am working toward beginning again soon as I'm stronger.
It is fantastic to live in this time, in a few ways, one being the online delivery services. My laptop is my lifeline to the world. I order groceries online for same day delivery! Can order take-out but don't because of costs and diet restrictions. Order all my clothing, home decor, garden and bird feeding supplies... everything I need I can order from some site on my laptop.
If I didn't have that capability, I could not survive, nor could he, living at home without paying an assistant/aid.
Over the years, assistance for the disabled has improved, although he is fiercely independent and has til now refused most outside help. Now, he is so much worse, I am researching, looking everywhere for any help available... non-profit, city, state, federal.
I suppose Ruby Slippers has done the same for her mentally disabled sister. I hope she'll let us know- hopefully she does now qualify for help for the disabled. That's a really difficult situation, but she appears to be in a good facility... What a blessing!
It is tough finding services for a 57 year old disabled man. But, I know they are out there somewhere so I will search and search and beg some more... That, the phone work to find help, is exhausting, both emotionally and physically. But, I enjoy research anyway, so if I can deal emotionally I will find somethings to help him...
Enjoy today and be blessed... Elizabeth