Caregivers of children with disabilities or siblings with disabilities

I'm tagging a few members who care for a child or sibling who is disabled like @ihatediabetes @goldie01 @ess77 @lilyofvalley @bearbayou @jennyesp to get this group discussion going.

@triciaot, I can imagine that the paperwork involved in the transfer of care of your sister was overwhelming. Was the transfer of her care to you expected and planned or did it happen suddenly. How is she adjusting to the changes? How are YOU doing?

I can relate. After my mom died, my brother lived with my father with my oversight. It wasn't good for him. I tried care giving for a while, but I had a career that didn't allow me to be late to work because the bus came late, or to leave early because the day program bus came at 3pm, I tried carers, but it didn't work out. I got him into a lovely group home and he blossomed. I've missed him every day for the last 13 years, he taught me so much, patience, understanding, joy in what might be considered minor things, acceptance. A colleague remarked one day when I mentioned that my brother was intellectually disabled, she said "That's it" that's why you're different.....you treat everyone as they are whether the President or Chairman of Board or the messenger bringing you a package. In his eulogy I mentioned while we might not have internet or modern medicine or other things in this world, if more people were like my brother, we wouldn't have war, crime, hate, envy and other negative behaviors.

My older brother had been managing my sister’s care. But he was recently diagnosed with stage 4 lung cancer and her care was transferred to me.

She is in a privately run independent living group. She does not qualify for government assistance for developmentally delayed, although she is. My parents never wanted that label on her, until she was 45 and they realized it would be helpful. But too late, DD is not acquired later in life.
The enormity of the account transfers is that everything is separate, apartment, phone, cell, internet, and more. We all live in different states - and while many things can be handled from afar, the cancer/brain surgery/infusions make it difficult. Its now complete including DPOA and other legal docs.

What is happening now is handling the everyday issues - dental problems, broken phone, lease, her travel . . .
Its all doable but it is putting a bit of a load on my relationship with my husband as these issues pop up, must be looked into, decision made - and often becomes part of discussions we have. My husband is great about this all - but it has taken over what would have been a time to just sit on the back porch and enjoy our retirement.

@triciot and all... Yes, you are experiencing one of the multitude of inconveniences we face when we care for a loved one. My precious mother developed Altzheimers in her 60s, after she and my father divorced from a life-long marriage and partnership raising 3 children.
She was a lovely woman, beautiful inside and out, a true lady.

She was a community leader, wife/partner of a successful man, on several state boards, a leader of charitable organizations... She was a very special lady. I lived in the same city as she and we enjoyed sharing our lives. When she began her single life at age 60, I was her strength. She looked to me for support and assistance establishing her new life. As her only daughter and close companion, I did what I was able to help her through this struggle.

Then, as the dementia began raising it's head, I helped her with her daily living. We lived close to each other, I walked my dog every morning to visit her or with her, enjoyed breakfast together before going to work. Eventually, she moved into my home for a short period, after her dementia progressed and it wasn't safe for her to be alone. After she damaged my washing machine, flooded the laundry, almost burned the house down with the stove, drank a bit of plant fertilizer I prepared in a gallon water bottle, and so on, I found her a nice assisted living facility which she loved. She could socialize, be with folks and enjoy activities under supervision.

That arrangement lasted 12 years. She was very healthy. I deteriorated severely during that time as I watched the bright, lovely, precious woman disappear into an Alzheimer's fog and no longer recognize her daughter. My brothers and wives were so busy building their lives, enjoying golf and friends, vacations... they were pleased for me to handle mom's needs. One brother who lived states away was supportive, to his limited ability. So, our family was destroyed by this horrid illness... as so often happens. I was a lone caring for Mother with only my son who lived in another state and was beginning his career and personal life. He was always available, but...

Yes, there are inconveniences. I lost 12+ important years of my life. I was dedicated to my business, but with the caveat Mom's needs came first! She called at work needing help or upset. I left work to help her. She called at 2 am., 2:10 a.m., 2:25 a.m. frightened, scared, crying wanting to come 'home'. I went to work in the morning and handled the business, after getting up, dressed and going to her at 2:30a.m. to calm her for the night.

Yes, there are inconveniences. I lost those years when I surely would have met the person I could spend evenings with rocking on the porch. Or traveling. Or loving. Or enjoying companionship, or...

Yes, there are inconveniences. Yes, there are tragedies. My mother's illness was a tragedy. My life became a tragic story of pain, screaming in the car after visiting her daily on the way home from work, yelling at the universe for allowing her to suffer this way, crying at night alone as I missed my sweet mother and hated what was happening to her and mourned my loss of my dreams!

I watched my dear, precious mother die a long, slow, horrible death of her personality, her thought processes, her bright light inside... I watched her die for 12 slow, agonizing years. I will never recover from that emotional hell.

But, I did get excellent support and guidance from Mayo Clinic physicians and staff, eventually. I did heal. Eventually. Some. Mostly.

You, my dear friend, are blessed to have a husband who can be inconvenienced. Who can hold you when you need a hug. Who can be there for you to enjoy a meal together. Who can advise you when you have questions. You are blessed to be able to help your sister and brother at this time. And, she is blessed to be in a good living arrangement established and happy.

I know you are dealing with enormous challenges. Reach out to the staff and personnel at the facility where she lives. They are experts and can advise if you ask. There are volunteer agencies who offer driving assistance to appointments, grocery shopping, dental visits. There are councils on aging that offer multiple forms of assistance to all in need no matter income. Do your research. Find whatever is available in her city, state to help her and you make both your lives easier.

You are strong. You can do this. You have support. You didn't have to take care of your sister's needs until now, so this is your time to be her and your brother's helper. It is a good thing you are stepping in for her now, while your brother is able to lead and guide you to the resources he's aware can help. Another good thing.

And, you are so smart to reach out to this group and support groups in your community. There were none when Mother was ill. My support circle was quite limited. You have options. Take advantage of them, as you are now on this site!!!! Congratulations for finding us and reaching out.

Now, know you have folks here who have and are walking in your steps, who have experienced much of what you are now feeling. You are not alone.

I pray your journey through this time will be easier as you learn from others and feel the love and support from all of us. Blessings, Elizabeth

@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.

@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

@triciaot and all... One more thing... It is indeed an inconvenience. But, he is my dear, precious son. I am all he has. He and I are fighting, both of us, to survive in a horrid medical system that we have fought for over 2 decades for help. Only due to his amazing spirit and will, to my shear determination and stubborn personality, are we both still standing. Constant inconveniences. Constant. Every day. My needs are completely secondary in order for him to survive.
I can not truly understand your needs and your situation, as I have no partner, no husband on which to depend. Or hug. Or be hugged. Or from whom to get advice. I do understand your frustrations, although it is surely quite different caring for a sibling than a child. Whatever the age.
Be well, and be blessed. There are son many folks who are facing the same challenges... I hope you find some help for your questions and needs. Elizabeth

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.

@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

You are truly being challenged in every way. I really hope you and your son can get back to having movie nights! I’m so sorry to hear from you that he is getting worse-I had my jaw dislocated back in 1984-a guy that I had evicted decided to sucker punched me in the chin. I fell like I had been hit by a Mac truck! I know too well how miserable your son must feel. I’m 70 now so I have dealt with TMJ, neck and occipital neuralgia over forty years and counting. If you want Any advice on how to cope, sadly I’m somewhat an expert on what and doesn’t help. The products made for mouth discomfort by Biotene, Stellalife (stellalife.com) and this new one for dry mouth by WOADEE on Amazon called a probiotic dry mouth spray-all are awesome and taste good. Stellalife has a pain relief gel that has nothing chemical in it to have a bad side effect with meds, got me through having eight live teeth pulled at once! There is NOTHING ELSE that I tried that helped anywhere near to this gel. It’s not cheap but one tube got me through constant use for four months. It’s in my purse, all over my house.
Anyway, if you need help or advice researching for your son-let me know!