Arthritis

Create a new post for topic
Join the Conversation on
Arthritis
31K people
0 stories
4.9K posts
About Arthritis Show topic details
Explore Our Newsletters
What's New in Arthritis
All
Stories
Posts
Videos
Latest
Trending
Post

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

Most common user reactions 3 reactions 5 comments
Post

Emotional patterns behind chronic pain (resources)

Could you recommend any books or resources about the emotional side of autoimmune diseases / chronic pain. Why stress or emotions make symptoms worse, and how to heal or work through that? #AnkylosingSpondylitis #ChronicPain #Arthritis #Pain #psichology #MentalHealth

Most common user reactions 1 reaction
Post

I'm new here!

Hi, my name is Bryan Bloom. I'm here because I would like to submit a story for Rare Disease Day, February 28, 2026. Our granddaughter, Emmie, battled Systemic Juvinelle Idiopathic Arthritis (SJIA) for eight years. Her younger sister, Ellie, was a perfect 10 for 10 bone marrow match and saved Emmie's life. The story highlights rare disease awareness, family resilience, and hope - perfect for your audience.

#MightyTogether

Most common user reactionsMost common user reactionsMost common user reactions 6 reactions 1 comment
Post

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

Most common user reactionsMost common user reactions 9 reactions 2 comments
Post
See full photo

Happy Friday and November 🧡

Already a week into November! 👀
The year is moving right along. This is a month of giving thanks and gratitude. Hope you have things to feel thankful for. Happy November 🧡🍁🦃
#MentalHealth
#Anxiety
#Caregiving
#PsoriaticArthritis
#Migraine
#DistractMe
#Arthritis

Most common user reactions 13 reactions 2 comments
Post

I'm new here!

Hi, my name is Cheryl and I'm here, because I would like to learn about my disorders, illnesses. 🤓Also I'm interested to see/hear/read how others live with them and maybe pick-up advice, recommandations, tips and tricks. 🙂

#MightyTogether #Anxiety #Depression #Fibromyalgia #PTSD #EatingDisorder #OCD #Grief #AnkylosingSpondylitis #IrritableBowelSyndromeIBS #Arthritis #SpinalStenosis #Scoliosis #PanicAttack #PanicDisorder

Most common user reactionsMost common user reactions 12 reactions 4 comments
Post

Yet another Autoimmune disease! #litchenplanoplaris #HashimotosThyroiditis #LichenSclerosus #Diabetes #Psoriasis #Arthritis #PTSD

I went to a new Dermotologist yesterday, after waiting five months to get the visit! I thought the skin reaction on my head was due to scalp psoriasis, but because I’m not a doctor I was unsure. It turns out I have another auto immune disorder! A rare type of skin disease (scaring alopecia) known as Lichen planopilaris.
I started crying in the Dermatologist office! Damn stressful. I have several different autoimmune diseases now! Many of them are skin related. I pictured myself bald as a cue ball and I couldn’t help but cry..
The Dermotologist said I’d had it for a while because of the front hairline loss. It’s at the rate of about a 1/4 inch a year! I swear I just noticed the odd patchy redness on my scalp, and scales at the hair follicles back in May.
I thought it was perhaps stress related.? We moved to a new community in 2023, and we were doing so much construction daily on our home.
I also thought of the stress my daughter has created within me, by estranging us three years ago. (She has stage four cancer, so I have no idea.Her cancer is definitely part of her estrangement of me and her dad.)
According to the internet:
“While stress isn't the sole cause of lichen planopilaris (LPP), it is considered a potential trigger which can exasperate the condition..”
It helps me to be able to write about this. I’m trying to clarify my feelings and emotions regarding having yet another autoimmune disease.
I told my husband I felt like my body was eating me from the inside out!

(edited)
Most common user reactionsMost common user reactions 9 reactions 7 comments
Post
See full photo

Happy Fall 🧡🍁

Never forget that change can be beautiful! The Fall shows us that! Hope this finds you well, and remember to take care of YOU! 🧡
#PsoriaticArthritis
#MentalHealth
#Anxiety
#Arthritis
#Caregiving
#AnkylosingSpondylitis
#ChronicPain
#Migraine
#DistractMe

Most common user reactions 13 reactions 3 comments
Post

Epilepsy and Arthritis?

I’ve got drug resistant Epilepsy and I had brain surgery five years ago (I still continue to have seizures as it was in two areas). Anyway, a few days ago I started to experience pain in my face and right hand. For the past year I have had swollen feet (I’ve gone up a shoe size) and it really hurts to walk on them so much!! I was told by the pharmacist to put ibuprofen gel for the pain which has helped a bit and to call my consultant tomorrow morning to speak to a doctor sooner (as one of my anti-convulsants may causing the swelling). Get my bloods done quicker.
I just feel so uncomfortable it hurts and when I spoke to my Gp a few days ago she said she would run a few blood tests to look into why my feet were so swollen.
There is Epilepsy and Arthritis in a few of my generations (my mum and nan both had these conditions)
I’m just really worried!
#Epilepsy
#Arthritis
#MentalHealth

Most common user reactions 5 reactions 4 comments