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The bed that changed everything - a caregiver's regret

My mother died in the early hours of Wednesday, aged 91 years, 10 months, one week, and four days old. She lived with me, and I spent much of her final weeks growing concerned about her health following a series of falls.

She was rather frail and struggled to get in and out of bed – hence the falls. She hated hospitals and refused to go there after the first fall. The ambulance service referred her to adult safeguarding, who, following a review, provided her with a hospital bed complete with a remote control that raised and lowered the bed at the touch of a button. This should have made it easier to get in and out of bed. It didn’t work – her arthritis meant that her fingers were not strong enough to press the remote control buttons.

She was upset at losing her king-size bed to such a poor replacement. With a large bed, she could at least position herself comfortably. With the new bed, she always faced the wall – which she hated. I’d help her into bed every night, but somehow, she always ended up in a less-than-comfortable position, and always facing the wall. With ruthless efficiency, I had donated her bed to charity, so reverting back to her old bed was not an option.

She started to dread going to bed. She didn’t like relying on me, but by now, she needed someone to help her back into bed whenever she woke up, which was often. She had heart failure, and her diuretics appeared to kick in whenever she was lying down. We only discovered the benefits of overnight incontinence pants when it was too late.

After the last fall, I was insistent that we go to the hospital, and the ambulance service willingly obliged. At the hospital, they later discovered that she had suffered a hairline fracture of the pelvis. The doctors were also concerned about the bruising caused by the falls. It was while treating her that her heart stopped, and they were unable to revive her.

This leaves me with feelings of guilt. At 91, she was as sharp as she ever was and would have been most upset at being treated like a child. I've seen ageism in its full force time and again when dealing with people – her doctor, the ambulance service. She could answer for herself, but they invariably ignored her, and insisted on talking to me instead.

It’s easy to say that she had a long (mostly) good life (except towards the end). It somehow feels as if this was avoidable – but that’s the thing about care: it’s often just one small misstep, one small oversight, that has a major impact. We think we’re doing enough, but sometimes that’s not enough.

In hindsight, I wish I’d pushed harder to make her more comfortable. I wish I hadn’t been so quick to let go of what she loved just because I thought it was the "right" thing to do. But I know now that nothing is more important than preserving dignity, and that means treating those we care for as partners in their own care – not as people to be managed.

If I could offer one piece of advice to anyone caring for an aging parent or relative, it’s this: Don’t assume that the solutions the system offers will work for them. Advocate for their comfort and well-being above all else. It may mean asking for something unconventional, pushing back on a system that doesn’t seem to have time, or even fighting for what they need when everyone else says it’s unnecessary. But our loved ones deserve more than just the minimum – they deserve respect, agency, and the right to live their last days as comfortably and independently as possible.

As for me, I’ll carry the lessons I’ve learned from my mother’s passing with me, and do my best to honor her memory by being a better advocate for others who are in need. I don’t want anyone else to feel the way I do now – as though something could have been different. Because, in the end, that’s all we really have left to hold on to: the knowledge that we did everything we could.#Caregiving

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What is your passionate hobby or interest that helps you while living with your chronic illness or MS?

"Never underestimate the power of believing in yourself and having the courage to give things a go. Now, to find an agent for my novels,” says Sharon Hier, whose short stories are winning awards and notice. Sharon has MS and attended creativity workshops through her local MS Society Cymru (Wales).

“The course introduced me to a tutor who gave me the confidence to believe in my abilities," she says. "That support helped me achieve my Creative Writing degree and multiple competition wins."

Shelley Elgin, director of the MS Society Cymru, says, "Sharon’s success shows what can happen when people are given the space and encouragement to follow their passions and it’s exactly why we remain committed to supporting people affected by MS across Wales.”

Sharon's latest award-winner captured the Oxford Flash Fiction Prize and can be read here: New Voice Award: Mrs Mabli and the Weather Committee by Sharon Hier

Read more about Sharon: Award success for Welsh writer with MS

#MultipleSclerosis #MightyTogether #ChronicIllness #newlydiagnosed #Disability #Caregiving #autoimmune

New Voice Award: Mrs Mabli and the Weather Committee by Sharon Hier

In the Welsh village of Tywydd, it was widely accepted that the weather had moods. If the sheep escaped, it would rain. If Dai the Butcher was late opening, it would snow. If Mrs Jenkins sang while…
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Yesterday I choked on a piece of water

I was never in any danger, but couldn't clear my throat for 45 min. Afterward, I swear I could have taken a nap!

Eating and swallowing difficulties, called dysphagia, are common with people with multiple sclerosis. Therapy and mindfulness helped me.

Caution: Jagged water. Hydrate safely, my friends.

#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

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I'm new here!

Hi, I'm Amy Leiker.

I never set out to invent anything. I just wanted to make life hurt a little less for the people I love.

My son was diagnosed with arthritis at only 9 years old, and his dad lives with multiple chronic illnesses, autoimmune disease, and daily pain. I’ve watched the two of them navigate the kinds of challenges most people never think twice about — bending, reaching, lifting, even getting through routines that shouldn’t require courage. When you live around chronic pain, you learn quickly that it’s not the big tasks that break you down. It’s the small ones.

The moment that changed everything for me came from my aunt’s neighbor, a wheelchair user, who told her he could no longer care for his cat because he couldn’t reach the floor-level litter box. He loved that cat. But the setup was inaccessible, and he didn’t want to keep asking for help. His story stayed with me — because I knew too many people who lived in that same quiet struggle.

That’s when I created LoftyLoo Elevated Litter Box. Not as a company, not as a business plan — but as an accessibility solution no one else was building. For me, LoftyLoo isn’t a product. It’s a mission to protect dignity and independence, to support people living with chronic pain or mobility limitations, and to make sure no one has to choose between their safety and the pet who makes their world feel whole.

I believe accessibility starts at home, in the overlooked details that shape our everyday lives. And I’m committed to making those details kinder, safer, and more possible for the people who need it most.

So happy I found this group! Elevate your day! LoftyLoo Love.

#ChronicFatigue #ChronicPain #Arthritis #EhlersDanlosSyndrome #Caregiving

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To help control chronic symptoms from MS, country music star Clay Walker feels improvement after receiving a small muscle-relaxant implant in March.

“The surgery gave me a lot of hope,” said the 56-year-old singer of "Live Until I Die" and other hits. “Am I walking perfect? No. Am I walking better? Absolutely."

After 30 years of living with MS, Walker said that the disease was starting to progress and affect his day-to-day life. Due to MS, Walker experiences spasticity, a chronic tightness in the muscles that often results in good fatigue, pain and mobility problems. MS causes different symptoms in every patient but spasticity is a common one.

“At the beginning of the year, I noticed I was having a lot of difficulty with balance and walking, and it really started to worry me,” Walker said. “I knew I had to do something.”

In a procedure that has been around for decades, the surgery implants a hockey-puck-sized baclofen pump that periodically releases muscle-relaxant medicine to help with muscle spasms and tension. The pump is set to individual, very personalized doses and schedules to release baclofen into the system throughout the day and night, as needed. Baclofen is most often taken orally in tablets, but when that is ineffective, the pump is a great alternative to get hold of out-of-control pain and spasticity tightness. While the baclofen tablets often contain 10 mg or so, the pump feeds baclofen directly into the spinal fluid and requires only very small but powerful doses.

For Walker, the results speak for themselves. "I got on a treadmill the other day without a harness holding me up to keep from falling, and I walked for five minutes," he said. "That is progress."

He acknowledges that he still has issues with balance, but he's working through with the resolve of someone who has managed remaining relapsing MS since 1996. His Clay Walker Foundation throws a huge benefit in Houston every year, helping those with MS afford the services they need.

Source: "Why This County Star Feels ‘Blessed’ as He Battles Multiple Sclerosis" by Gavin Boyle, Movieguide.com.

#PainManagement #Spasticity #Baclofen #BaclofenPump #ClayWalker #MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

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So, a thing happened... my son brought me an abandoned kitten. Funny thing is, I wanted to find my other cat a friend, but I wasn't expecting a little baby. She's maybe 7 weeks at this point (had her for a week), but I'll know more at her vet appointment. Anyway, I find pets with human names super amusing, so this is Winifred, lol. Have a great Tuesday y'all 💙

#MentalHealth #Depression #Anxiety #ADHD #Autism #Neurodiversity #PTSD #ComplexPosttraumaticStressDisorder #Caregiving #Anxiety #Depression #Trauma #MightyTogether

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💙🤝 Looking for a welcoming, inclusive place for your child or family member to play, connect, and grow?

Special Olympics Northern California is looking to welcome more athletes and families into the community in Redwood City, San Mateo, San Carlos, Burlingame, Belmont, Millbrae, Foster City, Menlo Park, Woodside, Half Moon Bay, South San Francisco, Pacifica, El Granada & Daly City.

Special Olympics offers structured, supportive sports experiences where athletes can:

🏅 Build confidence at their own pace

😊 Meet new friends in a judgment-free environment

🙌 Be encouraged for who they are

🎉 Celebrate strengths and individuality

Whether your loved one is new to sports or already enjoys being active — there is a place for them here.

And parents, caregivers, and siblings are welcome to volunteer too!

👉 Become an athlete: Become an Athlete in San Mateo County | Special Olympics Nor...

👉 Become a volunteer: Become a Volunteer in San Mateo County | Special Olympics No...

#Disability #Caregiving #Parenting #LearningDisabilities #IntellectualDisability #Autism #DownSyndrome #CheerMeOn #MightyTogether

Become a Volunteer in San Mateo County | Special Olympics Northern California

In San Mateo County, we have many volunteer opportunities available, and we’ve made it easy to find what you need. Choose your path below!
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💙🤝 Looking for a welcoming, inclusive place for your child or family member to play, connect, and grow?

Special Olympics Northern California is looking to welcome more athletes and families into the community in Redwood City, San Mateo, San Carlos, Burlingame, Belmont, Millbrae, Foster City, Menlo Park, Woodside, Half Moon Bay, South San Francisco, Pacifica, El Granada & Daly City.

Special Olympics offers structured, supportive sports experiences where athletes can:

🏅 Build confidence at their own pace

😊 Meet new friends in a judgment-free environment

🙌 Be encouraged for who they are

🎉 Celebrate strengths and individuality

Whether your loved one is new to sports or already enjoys being active — there is a place for them here.

And parents, caregivers, and siblings are welcome to volunteer too!

👉 Become an Athlete in San Mateo County | Special Olympics Nor...

👉 Become a Volunteer in San Mateo County | Special Olympics No...

#Disability #Caregiving #Parenting #LearningDisabilities #IntellectualDisability #AutismSpectrumDisorder #DownSyndrome

Become an Athlete in San Mateo County | Special Olympics Northern California

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I Am Mighty — Self-advocacy win = My doctors are getting a new bone density scanner accessible to me and ALL patients.

My medical group could not safely get me and other patients onto the DEXA bone scan machine, so last year I got no test. This year they wanted to send me on a 70-mile trip to the closest accessible machine. I spoke up for two years, and this year doctor backed me up, and since then I've followed up with phone calls and emails to a few administrators.

Today I received an email: They're funding an accessible bone scan machine for next year.

Groovy! I'm celebrating with a box of Cap'n Crunch Peanut Butter Crunch.

#selfadvocacy #MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

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Veterans and Active-Duty Support Group, Nov. 20, 5 PM CT

Including vets and service members living with MS, family, friends and carepartners.

On the Third Thursday of every month.

Contacts: Deanna Deschenes, veteran.ms.group@gmail.com, 910-508-8805. Ashley Lee, ashley.lee4518@gmail.com, 517-499-6400.

Do you have any vets in your life to thank today?

#Military #Veterans #MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

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