Tag Archives: caregiving

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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An encore visit to the cat circus

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The Amazing Acro-Cats

This past weekend, The Amazing Acro-Cats returned to Atlanta for multiple “purrformances.” Of course, I had to go. It is such an entertaining, quirky show. It’s the only time you get to see “cat herding” in literal action. I highly recommend catching a show if they come to your town.

When I saw that the Acro-Cats were going to be in town this time around, my heart clenched a bit. If  you’ve read my book, The Reluctant Caregiver, there’s a darkly humorous account about the first time I attended an Acro-Cats show. The essay is titled, “That Time I Chose the Cat Circus Over My Dying Mother.”

I couldn’t help but remember seeing them in 2015, and how desperately I just wanted one evening free of caregiving duties (at that time, I was a long-distance caregiver, but in contact with Mom daily.) I arranged everything so carefully, got out of work early and called Mom before the performance to let her know I would be unavailable for a couple of hours. I had just settled into my seat in the theatre when my phone rang. It was Mom.

And here’s where the guilt pangs come in. I didn’t answer the phone. I didn’t wait to see if she left a voicemail. Instead, I turned my phone off. “I just want to see the cats,” I screamed inside my head. I was definitely in need of a break, but ignoring my mother’s call and turning my phone off is not my proudest moment as a caregiver.

Of course, throughout the performance, I kept thinking about Mom. Wonder if she had fallen? (She wore a LifeAlert pendant so she did have remote assistance.) Wonder if she was having shortness of breath?  Wonder if she needed to call 911 but couldn’t? Wonder if she was dying right at that moment and wanted to tell me one last time that she loved me? How could I be so selfish?

Immediately after the performance I turned back on my phone and with dread, listened to the voicemail. Mom was asking me to call her doctor in the morning to inquire about her pain medication. She was as “OK” as a dying person can be, and I was relieved my night out hadn’t ended in disaster.

This time, I could enjoy the cat circus without any interruptions, which was bittersweet. Mom would have enjoyed the cat’s antics. Check out a snippet of Oz’s stirring rendition of “Careless Whisper.”

In a sad coincidence, Samantha Martin, the Acro-Cats founder, is now battling stage III colon cancer, exactly what my mother had. She is raising money to offset the costs of not being able to tour while she is recovering from surgery. Martin has done so much to help needy cats, rescuing them and helping them get adopted. She’s also shown the world that cats can learn tricks through her clicker training method. I wish her the best in her recovery. The Acro-Cats will always hold a special place in my heart.

 

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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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The cruel progression of Alzheimer’s

While the progression of Alzheimer’s is different for each person, there is a progression, and it’s a heartbreaking one.

On Sunday, 60 Minutes aired its latest installment following the life of Carol Daly and her journey with Alzheimer’s. This year marks 10 years since the show first made contact with Carol and her husband Mike, a former NYPD officer.

It’s gut-wrenching to watch the mental and physical decline of Carol over the years, and how much Mike suffers as a caregiver. But Carol’s story is  important to tell, to help raise awareness of this devastating disease to a mass audience. I am grateful for Mike and Carol for allowing cameras to document the cruelest aspects of Alzheimer’s.

Watch the full 60 Minutes segment

The segment touches upon important topics, such as the high cost of Alzheimer’s caregiving and the lack of financial support, along with the physical and emotional toll dementia caregivers takes on loved ones. You know Alzheimer’s is a beast when the former cop tells the CBS correspondent that caregiving is the toughest job he’s ever had.

The sad truth of course is that there are many Mikes and Carols out there, fighting their own battles with dementia. And that’s why we must do better, as a government and as a society, to help families caring for a loved one with dementia.

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The Reluctant Caregiver wins a gold medal

 

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It may  not be a Pulitzer, but The Reluctant Caregiver earned a gold medal at the 2018 Independent Publisher Awards.

I know my parents would be proud of me, though maybe not so thrilled about what I wrote about them.

The award was a pleasant surprise. I entered a handful of book contests after the publication of The Reluctant Caregiver last year. The Independent Publisher Awards, better knows as the IPPY’s, is well-known, having been around 22 years. The award ceremony will take place on May 29 in New York City and I’m going to fly up for the day to attend the ceremony and hopefully track down a few of my dad’s old haunts.

There are some people who feel these contests are a waste of time and money. I understand the concerns and some are valid, but I choose contests to enter where I would appreciate the prize, even if it isn’t money. For self-published authors like myself, every bit of promotion is worth, ahem, gold.

If you want to learn more about The Reluctant Caregiver, you can visit my website, joyjohnston.com.

 

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