Tag Archives: caregivers

Win a FREE trip to the National Caregiving Conference in Chicago

Please share this with any current family caregivers in your life. It is so inspiring to be in a room with fellow caregivers, sharing the ups and downs of the caregiving experience.

The Imperfect Caregiver is honored to be among those who will be presenting at the Third Annual Caregiving Conference in Chicago, November 9th and 10th. For a sneak preview of the presenters Caregiving.com is having a virtual summit May 14 – May 24. Virtual Caregiving Summit Our virtual summit, featuring conversations with our National Caregiving […]

via Win a FREE trip to the National Caregiving Conference in Chicago — The Imperfect Caregiver

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Sharing the voices of Alzheimer’s caregivers

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I’m always open to sharing my caregiving story with individuals and organizations who are championing causes near and dear to my heart. Alzheimer’s is, of course, one of those causes. My father’s brutal experience with the disease prompted me to create The Memories Project blog.

Being Patient is an independent news site dedicated to sharing the latest and most accurate developments in Alzheimer’s and brain health research. It was founded by Deborah Kan, who was an executive producer at the Wall Street Journal before creating the site after her mother’s Alzheimer’s disease diagnosis. I love the idea of serious journalists covering the important developments going on in the world of Alzheimer’s research, so I was happy to help the cause when asked.

I contributed an article about the challenges of rural caregiving for the site’s Voices section, which puts the spotlight on family caregivers. I saw many familiar faces in that section, as the online world of Alzheimer’s caregivers is a tight-knit group. It was good to see my fellow caregivers sharing their unique perspectives. It’s so important for people who are past and present caregivers to tell their story. There are so many areas where caregivers need greater support, and there’s nothing like a heartfelt story to prompt people to take action.

What are your favorite websites for news about Alzheimer’s and caregiver support?

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Finding the rainbow as a caregiver

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It can be hard for some caregivers to find moments of joy in their daily lives. Optimism can be in short supply when one is coping with loved ones in declining health. Mental, emotional and physical exhaustion leave little time for self-reflection or appreciation of the world around us. For those like myself who naturally lean on the pessimistic side, it’s easy to allow the clouds of despair to smother us like a blanket.

What I discovered is that even after one’s caregiving days are behind them, those clouds can linger. Having experienced such moments of despair, we live in fear of those days returning in one form or another. But by doing that, we may fail to recognize the beauty and the wonder that has always existed, even in our darkest days.

I was reminded of this while listening to “Golden Hour,” the new album by the critically-acclaimed country music artist Kacey Musgraves. The closing song of the album is titled, “Rainbow,” and its heartfelt message is for anyone who has gone through troubled times. I think many caregivers could relate. The chorus goes:

Well the sky is finally open, the rain and wind stopped blowin’
But you’re stuck out in the same old storm again
You hold tight to your umbrella, darlin’ I’m just tryin’ to tell ya
That there’s always been a rainbow hangin’ over your head

I know springtime has yet to reach some parts of the country, but here in Atlanta, everything is blooming and the birds are singing. My mother died during the spring so the season is now tinged with sadness. But I’m going to work on loosening my grip on the umbrella, so I don’t miss out on what the present has to offer.

If you’ve been a caregiver, have you dealt with the “waiting for the other shoe to drop” mentality? How did you learn to live in the present more?

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This year’s bad flu season even worse for seniors

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Photo: David Lat/Freeimages

It’s the time of year when you can expect to hear a lot of coughing, sniffling and sneezing in public spaces. I just came back from the dentist and the receptionist sounded like she had flu symptoms. As my parents aged and developed health issues, I became more aware of the flu being a serious concern and not just a pesky ailment.

I’ve been reading a lot about how bad this year’s flu season is in the U.S. The flu deaths of children as well as young adults who were otherwise healthy have captured news headlines. While older people are more susceptible to experiencing severe symptoms when it comes to the flu, this year’s dominant strain is particularly of concern.

The H3N2 flu strain has reared its ugly head this season, STAT reported. Referring to H3N2 as the “problem child of seasonal flu,” this strain tends to strike seniors particularly hard, and usually leads to a spike in flu-related deaths. While it hasn’t been proven that H3N2 is actually more virulent than other strains, its ability to mutate has made it difficult to create a successful vaccine. Researchers also pose a theory of imprinting, in which a person’s ability to fight off the flu is associated with the person’s earliest experiences with the flu. Since H3N2 first emerged in 1968, our elder population would not have been exposed to the strain during childhood.

Another vulnerable population when it comes to the flu is people with dementia. It can be hard to enforce preventative measures such as washing hands when someone has memory issues. Those in the mid-stages of Alzheimer’s may wander and pick up objects, or put things in their mouth.

In the last year of his life, my father was only partially verbal. If he was experiencing pain or any other symptom, I’m not certain he could have expressed it. Family caregivers are forced to look for secondary symptoms and related behaviors, such as a person’s appetite wanes because they don’t feel well. Certainly things like a cough or runny nose are obvious, but other symptoms may be more difficult to spot. Their throat hurts so they don’t want to consume food. Their nose is stuffy and they can’t smell food, impacting their appetite. They feel exhausted so they don’t want to get out of bed.

Treating flu symptoms of those with dementia can also be difficult. Anything that disrupts the routine can be a challenge for those with Alzheimer’s. My father was paranoid about taking pills or any kind of medication. Caregivers have to be creative when it comes to treatment. Don’t hesitate to take your loved one to the doctor if you are having difficulty managing symptoms. For those of you with loved ones in facility care, be extra vigilant in observing for flu symptoms when visiting, and make sure issues are addressed promptly by staff.

Here’s to hoping we can all stay healthy and avoid the flu this season.

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Touching wish from woman with Alzheimer’s

As National Caregiver Appreciation Month winds down, I came across this touching video from a women with Alzheimer’s. Pam Montana is in the early stages of Alzheimer’s, and knows what lies ahead. But she is not as concerned about herself as she is about her husband. Watch below as she explains her wish to family and friends.

Pam’s heartfelt message is a touching reminder for all of us to not forget about the caregivers of those with Alzheimer’s and dementia. As Pam says, Alzheimer’s caregivers often feel isolation and suffer from depression. Don’t abandon them. Offer a sympathetic ear, check in on them to see how they’re doing, or offer to stay with their loved one so they can escape the house for a bit.

As Pam poignantly states, there will come a time when she will likely forget who her husband is. She doesn’t want their family and friends to do the same.

How do you stay in touch with caregivers in your life?

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Dealing with a natural disaster as a caregiver

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As a caregiver, every day may seem filled with disasters, both small and large. Caregivers constantly are dodging landmines, whether it’s working with a difficult patient, controlling pain, managing new symptoms or handling finances. That’s one reason why I referenced the metaphor in my new collection of caregiving essays, “The Reluctant Caregiver: Missives from the Caregiving Minefields.”

Back-to-back major hurricanes in the U.S. revealed another area where caregivers must be prepared: natural disasters. Most of you probably saw the heartbreaking photo of nursing home residents sitting in floodwaters in Texas during Hurricane Harvey. Fortunately, they were all saved, and staff risked their lives to stay with them all night long.

Still, I couldn’t help but wonder what, if any, were the evacuation plans for the nursing home? From what I read, it was located near a bayou, so the flood risk was real.

As people prepared for Hurricane Irma this weekend, I heard multiple reports about care facilities, including those for Alzheimer’s care, making the decision not to evacuate. It may seem like a no-brainer but there were complications. Gov. Scott of Florida implored for more nurses to step forward to volunteer in special needs shelters. At the time, they were understaffed, making some care facility managers leery of evacuating and not having a safe space for those with complex care needs.

Dementia caregivers know how any disruption to the normal routine, along with a chaotic atmosphere, can exacerbate symptoms. Can you imagine trying to deal with wandering patients in the chaos of a shelter? I’m not trying to judge those who made the decision to stay, but I do think it is a good reminder for anyone who is caring for a loved one right now to make an emergency plan.

If a natural disaster strikes your area, are you prepared to evacuate with your loved one? Do you know where you will go? How will your loved one’s medical needs be met? Do you have friends or other family members that would be willing to take you in temporarily? If you make the decision to stay behind, do you have a safe, accessible place in your home that will offer protection?

My parents never had to evacuate, but a wildfire did get pretty close to their neighborhood at one point, and I remember my parents being uneasy about the thought of evacuating. Fortunately, they were both in good health at the time and the fire was brought under control. I can’t imagine trying to keep track of my father at a shelter once he developed dementia, because he wandered. When my mother was recovering from colon cancer surgery, trying to change a colostomy bag in the very public realm of a busy shelter would have been a challenge.

While the images that have come out of Texas and Florida over the last couple of weeks have been heartbreaking, it is a good time for the rest of us to make sure we are prepared when Mother Nature’s fury comes our way.  Sometimes, the worst moments can bring out the best in us, as when this man at Lowe’s gave up his generator to a woman who needed it for her father who requires an oxygen tank.

Consider giving to a hurricane relief fund established by Caring Across Generations. All proceeds will go directly to local organizations in Texas and Florida who assist caregivers.

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My collection of caregiving essays is now available

I’m excited to announce that The Reluctant Caregiver, my collection of caregiving essays, has been published and is available on Amazon and most digital bookstore platforms. It will be available as a paperback soon.

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Those of you who have followed The Memories Project for awhile know that I’ve been talking about publishing such a book for quite some time. It was very satisfying to hit the publish button.

I hope you’ll consider reading the collection, and telling others about it. Do keep in mind that the book presents a nontraditional perspective on family caregiving, and does contain some profanity. There are some graphic details about caregiving included in the essays, but also some humorous moments.

I think many caregivers will be able to relate to the roller coaster of emotions that accompanies any caregiving journey. I try to capture the good days and the bad days, the inspirational moments and those trying times that have sparked my interest in being a caregiver advocate. My ultimate goal is to reassure those caregivers who may be struggling, and to encourage caregivers to reach out if they need help.

Where to buy The Reluctant Caregiver:

Amazon: http://a.co/82c41dY

Other digital bookstores (including iBooks): http://books2read.com/u/3L9DnN

I’m available as a guest blogger and if you are promoting a book yourself, please reach out to me for cross-promotion opportunities.

Thanks for your support of The Memories Project. The feedback I’ve received from the blog and the connections I’ve made have helped turn The Reluctant Caregiver project into a reality.

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