Caregiving

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

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