Tag Archives: caregiving

#WeKnowYouCare recognizes male caregivers

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In a week in which a razor ad triggered an online discussion about “toxic masculinity,” a new campaign is highlighting an often overlooked group of caregivers: men.

Caring Across Generations launched the “We Know You Care” campaign, to raise awareness of the loving devotion of male caregivers, along with the unique struggles they face. I’ve met many wonderful male caregivers through my years of caring for my parents. From professional caregivers to devoted husbands and fathers, men have proven that they are tough enough and compassionate enough to handle the role of caregiver, in spite of lingering stereotypes that assume only females can provide care.

As Caring Across Generations’ co-director Ai-jen Poo points out, approximately 40 percent of caregivers are male.

Meet Ivan, who shares his caregiving experience. I appreciate his honesty, and his ability to be vulnerable when admitting the ares of caregiving that are a struggle for him. I certainly could relate. My struggles inspired my book, The Reluctant Caregiver.

The movement was prompted by the film, On the Basis of Sex, which looks at a case involving a male caregiver named Charles Moritz that a young Ruth Bader Ginsburg argued and won, long before she was appointed as a Supreme Court Justice.

While women have long assumed the caregiving role, and been expected to, we are moving into a period in which more people, both men and women, will need to serve as caregivers. Our population is rapidly aging and there are not enough caregivers in the workforce to meet the demand. It’s time to break down traditional stereotypes and equip everyone, regardless of gender, with the tools and support they need to be the best caregivers they can be.

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Make 2019 a year for caregiver intentions

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For caregivers, a new year doesn’t always feel like a new beginning. The grueling 24/7 responsibilities of caring for a loved one can temper the enthusiasm for a new year.  Caregiving can be isolating, especially during the winter months, and its easy to feel like there is no light at the end of the tunnel. New year, same old blah.

If you are caring for someone nearing the end of their life, it also can be difficult to embrace the optimism that a new year is supposed to bring.

While I can’t guarantee that your caregiver journey will be better in 2019 (I wish I could!) there is one thing you do have power over, and that is your mindset. I know the last thing I wanted to hear when I was a caregiver was well-meaning advice about taking charge of my attitude. When I talk about mindset, it’s not about finding the silver lining in everything or making lemonade out of lemons or whatever tired cliche you want to choose.

This is where setting intentions come in, versus the typical new year resolutions. Instead of making a hyper-specific goal, such as losing 20 pounds, you could set an intention for eating healthier food in 2019. This could include things like cooking healthy recipes at home, going to a farmer’s market, or tending to a garden at home.  By setting this intention and taking action on it, you may discover that you lose a few pounds along the way. If not, that doesn’t mean you failed. Eating more nutritious food has benefits beyond what you find on a scale.

You don’t need to attach numbers or due dates; intentions don’t expire but are often lifelong aspirations worth the time and effort invested.

For those caring for a loved one with dementia, consider an intention centered around collecting memories, which could include filling out the family tree and creating scrapbooks.  Self-care is another important intention that all of us should focus on in the new year. It’s one of those annoying buzzwords, but that doesn’t take away from the fact that caregivers have to find a way to recharge.

Those embarking upon the end-of-life phase as a caregiver may find that an intention centered around what a good death means to your loved one and family is useful during this challenging time.

Whether you call them intentions or resolutions, I hope that 2019 treats you and your loved ones well.

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When You Should Say “No” in Caregiving — The Purple Jacket

Caregivers, try practicing the art of saying “no” during the increased demands of the holiday season. Not only is it acceptable to say no, it is healthy and necessary so that you don’t get burned out. Saying “no” can be the beginning of an equally important conversation: “I need help with caregiving.”

We welcome back guest writer, Kayla Matthews to The Purple Jacket! Caregiving for an elderly relative is a role that falls on different family members and professional caregivers depending on the family and expectations. And many families often fail to discuss how much responsibility a caregiver should take on and for how long. When the […]

via When You Should Say “No” in Caregiving — The Purple Jacket

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December 18, 2018 · 6:21 pm

Everyone has a caregiving story

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Keynote speaker Walt Mossberg shared his insights on the future of technology.

I’m at Digital Book World in Nashville this week so this post will be brief.

I’m always amazed at just how universal the experience caregiving is, and how everyone has a story to tell about that experience. It’s so interesting to attend a conference and come into contact with so many people from all walks of life, and when they find out I write about caregiving, they are typically eager to share their own stories.

As Rosalynn Carter to eloquently said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Just wanted to share this observation for caregivers out there who may be isolated and are feeling alone. You are most definitely not alone. There is a large, passionate, imperfect but striving to do their best tribe of family caregivers out there.

Don’t be afraid to share your caregiving story.

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Caregivers facing tough financial times need better options

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No one likes to talk about money and that’s why so many of us have money issues.

Caregiving can leave one financially devastated. I found myself in this position over the last few years, and I finally took concrete action to rectify my situation. Why did I put it off so long? I thought I could fix it on my own, pay down my credit card debt the old- fashioned way, through dogged dedication and hard work.

The one thing I’ve learned in the post-caregiving phase of my life is that life doesn’t go on pause while you are tending to an ill loved one or grieving over a family member’s death. In my case, I’ve had legitimate expenses like replacing a rotting porch and replacing a busted water heater (that my home warranty wouldn’t cover unless I replaced the pipes in the ENTIRE house.) I took a few trips, but no fancy overseas adventures. I didn’t live on rice and beans, but I wasn’t slurping down caviar, either.

I’ve always been pretty good at managing my debt, but things were not going in the right direction, and I had to set aside my ego and look at my options. I decided on a personal loan, to consolidate my credit card debt and establish one reasonable monthly payment. I had a lot of trepidation about doing it, but the process went fairly smoothly and I feel more in control of my financial situation. In hindsight, I probably should have done it sooner.

In an ideal world, caregivers would have greater access to financial support, so they wouldn’t have to go virtually bankrupt just because they are taking care of a loved one. It’s insane that the government thinks the average, middle-class person can be a full-time or even part-time caregiver and still earn enough to pay the bills without sinking into debt. And that’s if you are able to care for your loved one at home. Facility care can run thousands of dollars per month, and only the wealthy can afford that on a long-term basis.

There are no easy answers, but as more people find themselves taking on the caregiving role, we are going to have to find some practical solutions. Finances are one of life’s most stressful issues and the last thing a caregiver needs is any more stress!

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“Into the Night: Portraits of Life and Death” a fascinating documentary

Leave it to me to find the heartbreaking, gut-wrenching yet powerful documentaries. While films about dying are always an emotional experience for me, I also find them thought-provoking, which is why I keep watching them and sharing with others.

The latest film I watched is titled, “Into the Night: Portraits of Life and Death.” It aired on PBS earlier this year, but I caught it on Netflix. What I liked most about the film was the diverse range of subjects who were interviewed about their perspectives on death. From people of faith to scientists to a former member of an Islamic extremist group, those interviewed were candid about their thoughts on the meaning of life, death and the afterlife.

I loved the imagery captured in the film, such as a son finding an acorn in the pants pocket of his recently deceased father, or a favorite family photograph of a parent and child on the shore of the beach. There was also an interesting discussion of near-death experiences.

One of my favorite death positive advocates, Caitlin Doughty, is also interviewed for the film. A traumatic brush with death as a young child greatly influenced her life.

The most moving segments were with those who were actively dying. Anyone who has spent time with a dying person knows they often offer an insightful take on their imminent demise. Some people fight death until the very end, but others make their peace with death in order to better appreciate the time they have left.

The overall message I took away from the film is that each of our lives are unique stories, and all stories must come to an end eventually.

Watching such a film made me reflect upon my own views of death, as well as those of my parents. My father, a staunch Catholic, had an intense fear of death. Did his dementia offset that fear, or intensify it? There is no way for me to know. My mother, on the other hand, had a more positive end of life view. She thought we “go to a good place, and a right place,” based upon whatever our views are of the afterlife.

For me, I’m more afraid of terminal disease and the dying process than death itself. I dread the idea of pain, misery and loss of self-control. I also dread the loss of mental faculties, but know that is a distinct possibility, as Alzheimer’s is all over my family tree. I admire those that make peace with death, as I think it is the best way to go. At some point, the fight to live is over, but I don’t see that as giving up. I see that as focusing remaining energy on the life you have left.

If you’ve seen the documentary, I’d love to hear your thoughts.

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Alzheimer’s and agitation: How caregivers can cope

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Photo by Gabriella Fabbri/Freeimages

Among the most disturbing and difficult behaviors for caregivers of those with Alzheimer’s to manage is agitation and aggression. Unfortunately, agitation and aggression are quite common symptoms, with almost half of those with Alzheimer’s exhibiting such behaviors, according to a 2008 study.

infographic-4_editedI witnessed the effects my father’s aggressive behavior had on my mother. Even though my dad was slim, when agitated he proved to be far more than my mother could handle. He still could pack a punch, literally, as when he hauled off and hit my mother in the chin with his fist. He claimed he was shadow boxing and she got in the way.

My father was eventually placed in a memory care center, in part due to his aggressive behavior.

Over the years, I’ve learned tips on how to best manage Alzheimer’s agitation and aggression. The key is that not every solution works for every patient; each case is unique. Here are some suggestions I found helpful:

  • Determine if agitation follows a pattern: For some people with Alzheimer’s, they become more agitated at dusk (sundowning) or during specific tasks, like getting a bath or taking medication. (For my dad, it was the bedtime routine.) Consider that the task may be frustrating to complete for the person with Alzheimer’s. If a certain event is a known trigger, it can be helpful in reducing agitation. Distract with an activity to reduce the effects of sundowning. Have an aide help with bathing. Try to disguise medication in food or a smoothie if possible.
  • Create a calm environment: Those with dementia tend to do best in calm environments that reduce the risk of overstimulation. Noise in particular can be overwhelming. Try soothing, familiar music and lights that are bright enough to maintain safety in the home but that don’t create a harsh glare. Limit caffeine if that is determined to increase agitation. Natural remedies, such as soothing teas and herbs may be helpful, but always check with a doctor first.
  • Stay active: For those with Alzheimer’s who are ambulatory, exercise can help reduce aggression and agitation. My dad loved to take long walks, and as his dementia progressed, he spent more time indoors, which was a source of frustration for him and increased his agitation. For those who have difficulty walking, doing simple household tasks like folding towels can be useful in preventing boredom, as can activities like simple jigsaw puzzles and coloring books.
  • Medication: While medication is not effective for some patients, it can be a useful tool when combined with the above suggestions. Consult your loved one’s physician to learn about options. Consider enrolling your loved one in a drug trial if they qualify.

One important factor to keep in mind is that agitation that appears suddenly may be related to a physical ailment your loved one is experiencing but cannot communicate their discomfort. For example, urinary tract infections are common in those with dementia, and can create very uncomfortable symptoms, which can increase agitation. A new medication can also increase aggression. Share any concerns with your loved one’s doctor.

What methods have you found to curb aggression and agitation in those with Alzheimer’s disease?

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