Caregivers of children with disabilities or siblings with disabilities

@judyandchloe and all... Thank you so much for your kind and helpful message. I will check into the Stellalife. It sounds as if it might help when his teeth and jaw are bothering him. It sounds like you've had and are experiencing a difficult time. I am so sorry. I have TMJ and may find that drug helpful as well.

His disability is cervical dystonia with multiple additional diagnoses that go along with this rare movement disorder. It is not like anything else. It is rare, legitimate experts in the field are rare. There are doctors who will try to treat it but know nothing about what to do, so for years they threw Oxycontin, Fentynal and any other heavy narcotic at him even though they helped only slightly. Then, the anti-Oxycontin rage began and he couldn't even get that medication to help with pain. I went to 5 pharmacies to try to fine Oxy to refill his prescription. One night, 5 pharmacies... either not enough, or none, or wouldn't give it to me because they didn't know me or whatever. Doctors and hospitals thought he was pill shopping, faking to get oxy... The man never took Tylenol for goodness sake! Yes, we have had quite the struggle, constant battles for 2 decades.

Things are better on that front for him. His pain doctor implanted a pain pump in his lower back with a catheter running to his neck to the major nerve causing most trouble. He's had that for a couple of years now, with Dilaudid and Backlofen constantly going to the nerve giving him some relief. He can give a boost of meds when things are even worse, but the number and times are limited. It's the only reason he's still alive. He also gets the maximum amount of Botox injections every 8 weeks... It is rare for a doctor to give them every 8 weeks rather than the required 12 weeks, but he can't go longer than 8 weeks and his Mayo doctor has authority to give them more frequently. Coupled with the pump, he has a base of pain relief that keeps him sane. He still has screaming episodes when the pain or muscle spams or cramping are too much, or his body jerks out of control, but he has more legitimate help now than previously.

Mayo consulted about a new brain surgery that goes into the skull to the place in the brain causing the spasms and muscle issues, etc. But, it does nothing got the nerve pain, so he can't have the surgery. Even though his mobility would improved... his pain would still be the same.

He regularly has several different procedures that help some... nerve ablations, trigger point injections, steroid injections, and others. These fill in the gaps between his big treatments. The ablation is a biggie as the nerve is injected with a chemical that burns the nerve ending. Extremely difficult for him to get through this one due to the burning pain and the position he must be in for the procedure. It's tough! Wildly painful!r But, it does give him some relief.

We're talking a life-long minute by minute nerves shooting electricity through parts or all of his body - he's being electrocuted constantly. Muscle tightness that's painful. Cramping. Spasms. Loss of use of left hand and arm now. Left leg is losing it's ability to function without pain and cramping and causing falls. Severe arthritis in his knees and hips, additional pain and loss of strength, mobility. The list is so long. My heart breaks often. When I hear his screaming or am near him comforting him when it's the worst, I feel I can't breathe, my heart is breaking into pieces!

I have had excellent counseling through the last few years that enables me to process these issues fairly well, most of the time. But, I do get overloaded, and when I'm not feeling well or working on my own health issues, it becomes unbearable. I can't be there for him. I hit an emotional wall and that's it.

So it goes... This is our lives and it will get worse by the day for us both. I have a strong faith that holds me up, comforts me, keeps me able to move forward. As does he. But, when there is no hope and we seen daily deteriation of his body, it is difficult to take the next step.

Such a downer. But truth can be. I realized recently there is no joy in our lives anymore. We love and cherish our therapy animals... a precious dog for him, a stray cat who adopted me years ago for me as I can't maintain a dog now. It's getting very hard for him to walk the dog, pick up the poop, etc., but he does it! She saves his life. She is joy! My cat is dear and sweet and a spirit cat for me. She saved my life a couple of times waking me when I was having an emergency during sleep! Swallowing blood after surgery, heart stopping, stopped breathing.

I do hope this story will give some folks going through times helping siblings or children with serious health issues. I do a lot of online research, ask every doctor he sees for advice for additional help. Am now searching for social services help to find anything available to help him in any way through non-profits, city, state and federal programs. It takes a lot of time and energy. It's emotionally draining. But he must get some support. I will not be here in a fairly short time and he will be alone. He won't survive that, so now I must find him help.

That's true of all our situations, isn't it. Parents or family may not be available. Then what?
Take those steps now to hunt for help. Beg. Plead. Do whatever we must to find anything!
You continue to take good care of yourself and be blessed... Elizabeth

The Stellalife is homeopathic and vegan. I don’t know how it works but it dies! I have known people in my life I told them of it who get real relief. The Biotene dry mouth gel is a game changer. I have extremely dry mouth from meds I’m on and sinus trouble…trust me it does a lot!

I’m on oxycodone myself and have had for a year since rotator cuff surgery. Have had everything from methadone to morphine…the latter worked but the side effects were debilitating. I have had a gazillion trigger point injections TENS…bla bla…I have arthritis everywhere from genetics and sports injuries. I get relief from strong hemp cream and even tattoo pain cream.

I am so very sorry for your son and your predicament … I just think about my brother and I cry. I’ve actually wished it was me as I’m very good with handling constant pain for forty odd years. I imagine you feel the same.

In my humble opinion the surgery that would improve his movement might give him relief from angry muscles and stiff tissue or fascia (sp?)…stiff muscles pressing on nerves in my own situation makes me feel I’m made out of wood.

I’m glad you are there with the support from Mayo. Do you have good insurance? Public or private or both? I’m good at research and crushing through data. If you need help, please let me know. So often drugs meant for one problem are relief for another. For example, I take gabapentin which was for seizures but helps with nerve pain…I just found that there are clinical trials for gabapentin and brain tumors! I had to really dig deep to find that. I have read six books on brain cancer, some even self published by doctors…I’m often down the rabbit hole.

Hope you and your son find peace through belief in heaven every day! It has kept me sane through some bad, bad pain.

PS. I understand feeling like my nerves are on fire-it is absolutely a wretched misery.

@judyandchloe and all...Alert to you... watch for Gabapenten side effects. I took it for a few years, and Lyrica, and found some relief. But, brain fog became severe. Personality changes, slow muscles and other issues. A marvelous Mayo doc helped me reduce my medications, at my pleading. Begged docs for years... he helped! Took 2 years of tapering to reduce the healthy drugs-side effects, overlapping, and I am a new woman... with some long-term issues caused by the meds. I'm thrilled to be off those chemicals and found I could regulate my pain and issues better off the biggies. Yay!
Just a thought to consider as you travel this road.
Elizabeth

I am 57 and firmly in my "Sandwich Generation" years.

My MIL is 89 and had a bad fall a few months back, followed by increasing cardiac issues. PVCs that are likely brought on by a combo of her psych meds and the increased anxiety they cause. She has excellent care in a Cadillac of an assisted living facility, but it still emotionally dependent on and manipulative toward my husband and SIL. So he has a lot of weekly care there. I help only occasionally.

My parents are much younger, 77, but my mom and stepfather aren't in good shape. My stepfather really, really let himself go. Hugely obese. Former smoker. History of alcoholism. Brain aneurysms, triple bypasses, repeat infections, etc. etc. I'm trying to get Mom to do their estate paperwork and start (way too late) protecting her financial assets. Theirs is not a healthy relationship and she has a lot of anxiety around upsetting him because he used to be pretty intimidating with his temper tantrums and verbal abuse. It's PTSD, basically. I did get their POAs done. And I did get them home health through the VA a few years back after one of many health scares. He's back in a rehab facility now after a fall.

So, already a LOT going on.

We also have a 21 year old daughter with Level 3 autism and severe intellectual disability.

She is in a two-person Medicaid waiver homes, staffed by recent immigrants who do not speak English. We have trouble coordinating her care, can't get information out of her direct caregivers. She can't understand much of anything going on around her on a daily basis and now the state has removed even her right to have her own language, which she can understand quite a bit of, in her own home.

You are supposed to create a care plan reflective of the individual's support needs, but the state won't allow that. They hide behind "patient's rights" and refuse to implement doctor-recommended lifestyle interventions to treat serious autoimmune diseases (like suspected Crohn's). She and her roommate mindlessly destroy all their personal property because they have severe ID. And staff say they can't take things away from them, even while thry are biting apart electronics. I wish to heck I was kidding.

She has a few more months of high school, and school is just as bad. She's been flopping at the end of the day, refusing to get in the van to go back to her house. Grown adults let her remain flopped for 3 to 5 hours after school because they say the state won't let them move her. Worse? They don't have a fire safety plan for her. Their general fire safety plan involves making staff stay in a burning building with kids who won't move. And they do not force kids who don't want to move to leave during fire drills. They assess whether the infraction of their "rights" is worth it to teach them to leave a burning building.

Disability care in Maine has gone utterly insane.

So much of my time is spent advocating. And, of course, medical appointments. Her caregivers can't communicate effectively with doctors. And making sure she has the clothes and personal care stuff she needs. We see her every weekend, taking her to see family, out to lunch and shopping, or to our home for overnight visits.

My entire life is caregiving. I want to go back to work, but I'm really not seeing how.

@triciaot If your sister was disabled prior to age 18, she can be eligible for many government monetary supports, medicare/medicaid, SSI, etc.
Many not-for-profits connected to her disability have staff social workers and financial benefit professionals who could help you get these benefits for your sister......as much or as little as you want.