How caregivers cope with stress

Coping with stress is a constant challenge for caregivers. Coping mechanisms that are actually realistic for caregivers is a pretty frequent topic of conversation. Here are some of the suggestions that came up recently. Small treats After the day I had, tonight it was...

Confessions of a backseat caregiver

Like so many children, I'm simultaneously exactly like and nothing like my father. One of the things that's very different about us is that he's very much a caricature of the absent minded professor while I have a life that's planned weeks in advance in a color-coded...

Going home

I've always felt like an outsider. Growing up in the suburbs I always stuck out. I didn't fit in. I didn't belong there. My parents always described me as the black sheep. When I was little, they tried to get me to play nice, wear dresses, do the things little girls...

Home modification tips and tricks

We asked the community if they'd modified their home in order to better accommodate the person they cared for. The most common additions were: Shower bars Grip tape on stairs Bed rails Shower seat Stair lift Elevated toilet seat Video baby monitor Wireless doorbell...

Fly, fly away

There are a hundred reasons why not to holiday abroad with David freezing and lurching as he does. An unwelcome stowaway, Parkinsons finds a way to show up wherever we travel. Guaranteed. So he’s not reported INBBRIATED. Unfit to travel, a constant fear of mine I...

The yellow umbrella

Rain. Not the kind rain kids like to run in and lovers like to walk in, but the unkind rain that kids run from and lovers shun. The hard-driving cold rain no one wants to be out in. They were out in it. A mother and her young daughter, alone, at a bus stop, arms...

When caregiving begins

Caregivers come from all ages and walks of life. So many of our community members have been part-time, full-time, long-distance, and professional caregivers over the years. But as Cathy put it so perfectly: It isn't a competition regarding when we started caregiving,...

When I’m 24

When we said "in sickness and in health" we envisioned supporting each other through old age. https://www.youtube.com/watch?v=_uk2LkW2tm8 Even 64 seems pretty young these days. The world has changed since the Beatles were at the top of the charts. When did we expect...

Exhaustion

Exhaustion.  It can hit out of the blue.  You think you’re doing well and handling everything, and you have a hopeful outlook.  It’s not always physical exhaustion.  It can be mental or emotional exhaustion.  But, mental or emotional exhaustion definitely adds to the...

What’s your type?

Moms of special needs kids come in all shapes, sizes and types. What kind of (super) mom are you? https://www.youtube.com/watch?v=dpFfP_m6X2s&sns=fb Rabbi Rebecca Einstein Schorr blogs at This Messy Life. This former career-driven mother of three became a reluctant...

Sometimes people don’t know what to say

Sometimes people don't know the right thing to say. In fact, they put their foot in their mouths pretty often. But sometimes they say just the right thing and it makes a world of difference. I asked our community: Was there a time someone said the wrong thing? What do...

Where can you find caregiver support?

We asked our community members what the best source of caregiver support they've found is. While we could all use more support, here's what's helpful. Facebook I am the lone wolf taking care of her now. I feel just left to completely be in a silent world.can't get out...

What do I have to complain about?

Moan, moan, moan. YOU’RE NOT ALONE, friends soothe. It doesn’t help, you know — telling me. I know friends mean well offering pop-in help and I am grateful, truly, but fact is David and I are adrift alone in a sea of day to day survival. Try a caregiver’s life for...

Finding my reset button

It has taken me almost 10 years to figure out that I actually have a reset button and that I'm allowed to hit it when needed! My husband has a C4/C5 spinal cord injury and as his primary caregiver for going on 10 years, along with caring physically (alone) for our...

Moments

I want to do this. I don’t want to do this. I love doing this. I hate doing this. I can do this. I can’t do this anymore. The Caregiver. By choice. Or no choice. You will be frightened. You will be alone. You will have doubt And you will want out. But only you will...

A stolen childhood

I know I'm not supposed to feel guilty, but I do. When we were told that the baby I'm carrying would have severe disabilities, we knew abortion was an option but didn't seriously consider it. This was our baby, no matter what. But that choice won't just affect my...

When is enough, enough?

I walked in the door at 7:30 tonight after being out since 8:15 this morning. My day consisted of working with kindergarteners for 7 hours, picking my daughter up from track practice, driving 40 minutes to her voice lesson and 40 minutes home, and a stop for Chinese...

Caregiver frustration

No matter how rewarding caregiving can be or how much we love the person we're caring for, caregiving is frustrating. Frustration just comes with the package. We're human and caregiving inevitably involves situations and tasks that are inherently frustrating. So many...

Filial piety and the rural/urban divide

Caring for the older generation Qi Jianguang feeds his father Qi Wenjiang at the farmhouse he rented near the construction site where he works.Du Huaju / Xinhua Son honored for looking after his partially paralyzed father For many young Chinese living in the country's...

Loneliness

I believe that one of life's greatest tragedies, now, and perhaps from the beginning of time is, loneliness. I doubt that there are many people that can say they haven't been lonely at some point in their life. Sometimes we're simply victims of circumstance,...

Up, up, and away…

Up. Up and away… not in a balloon, though that would be fun, but in a chair lift scaling a precipitous mountain in the French Alps. Lake Benit lay hidden in a crater out of reach to David and me. We’d called ahead to find out if the chair lift would take somebody so...

Don’t underestimate the power of caregivers

The first session at the Aging in America conference that I attended last week was titled, "Is family caregiving the next public health crisis?" I'm sure all of you can guess what the answer was: a resounding yes. After attending this year's conference in Chicago, I...

It’s Normal for Things to be Shitty

Once upon a time I thought that tragedy only happened to people on TV. I think many of us millennials were taught to think that nothing bad could happen to us. We were normal, we all won awards, we were protected from the world. It was all butterflies and rainbows. I...

How I keep going

Resilience. Tenacity. Strength. Toughness. Whatever you want to call it, caregivers need it. It's that thing about your personality where shit is exploding all around you and you just roll with it. Roll up your sleeves and get to it, every day, no matter what. Inner...

Getting help: Is it really possible?

So many caregiving guides make it sound like there's plenty of help to be had, if only caregivers would ask. We know that's not quite how it works. Yes, some caregivers don't ask for help and your chances of success improve if you ask the right way, but it's a fact...

Hello? Hello! Anyone home?

Anybody home? It’s lonely here outside your world. I trace your profile with my gaze, the familiar silhouette on the pillow beside me for more than thirty years. One room, two chairs we sit together of an evening in the rumble of television’s tunnel journeying ever...

My Life: Mimi L

What's keeping me up at night? Worry about finding a good fit for my son in the community. Somewhere where he will be accepted, appreciated, and feel good about working for. It's a hard struggle. Worrying about my dad. When he gets the hiccups at night. His really...

ALZ isn’t just a disease for the elderly

Rebecca Doig's Alzheimer's reached the point of needing constant care when she was only 31. https://www.youtube.com/watch?v=mbtLUChdUlc Amy Norton was diagnosed at only 43. https://www.youtube.com/watch?v=Lb5Z4LBl7II At the age of just 39, Laura Borrell is one of the...

One question that changes everything

The other day I was in an ER far from home. The woman in charge of triage was refusing to move forward with triage because we didn't have insurance they'd accept. The fact that we had insurance and had even gotten pre-approval to go to the ER wasn't enough -- she...

Why do we accept this behavior?

This isn't going to be a popular opinion. I'm not here to get you angry. If you don't want to read about carees who are emotionally abusive, skip this post. Why is it somehow acceptable for people who need caregivers to be emotionally abusive? Some care recipients...

My Life: Colleen R

What's your life really like? Really, day to day, nothing to write home about. I am blessed that my husband requires only a small amount of care during the day and my job is close by. So I can run home at lunch and feed/toilet him if necessary. Then back to work,...

Lessons in caregiving

Evelyn Corsini and her family allowed photographer Francine Orr to document the final months of her life, to observe caregiving. Orr's interest was journalistic but also personal: As the caregiver for her father, she had been living the story herself for more than a...

When does the glad start?

How many times i risked leaving mom alone ...she was still capable of walking and her dementia was still not that bad... To get an hour away at the local coffee house located in Silicon Valley's Mountain View. I remember being in coffee houses trying to strike up a...

My Life: Jerry S

What keeps me going, and it is the hardest task I have ever had, is knowing that true love is rare. Deb and I met in 1984 when she was 28 and I was 33. We married a few months later. We had both had prior marriages and were blending families of 2 kids each. We knew it...

Grown Up Pains: The Beginning of My Story

I first heard of Huntington’s Disease when I was 20 years old. A frantic, hysterical phone call from my mom told me that she was certain that she had an incurable, genetic disorder called HD that involved the slow deterioration of cognitive thinking, muscle...