My essay about dying at home posted on The Caregiver Space

I’ve been reading posts on The Caregiver Space for quite some time, but never had time to submit my own writing.

Now that I find myself in a post-caregiving phase of my life, I’m really trying to focus on writing a series of essays that have been stewing in my brain for awhile.

hospital bed

Last week, The Caregiver Space published my essay, “Why dying at home is not all it’s cracked up to be” and the reception has been quite positive. The post was published on The Caregiver Space Facebook page where it generated several hundred likes and many heartfelt comments.

The essay is not an attack on hospice care workers; I admire most of them and think they do a phenomenal job. Hospice care is truly a calling in my opinion, and one can see the benefit of the loving, compassionate care they provide.

My essay is a look at dying at home vs. dying in a facility from the family caregiver’s perspective. After my dad died in a skilled nursing facility, I was all for my mother dying at home. But the reality was a bit different. It was an emotionally brutal experience that I wouldn’t wish on my worst enemy. That’s not to say that her death would have necessarily been better in a hospital, it would have been difficult in a different way.

My main point of the essay is to bring awareness to family caregivers in rural areas. They may find that the local home hospice agency is understaffed and overworked, and cannot provide the around-the-clock care that is often touted by die-at-home advocates. People should be aware and prepare themselves for taking on more of the nursing duties of caregiving. If they feel they cannot do it themselves, they should seek out help from family, friends or professional caregivers.

If you have the time, please read the essay and let me know what you think. Also, please share with anyone who you think could benefit from the information.

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A birthday missing a song

Today is my birthday, and I have to say I don’t mind being a year older. At least it offers me a symbolic new start, as 40 was one of the most difficult years of my life.

I’m having a lovely time in the mountains, but there is of course one thing missing. As I’ve mentioned previously on this blog, my parents always made a big production out of singing “Happy Birthday” to me over the phone.

I have a poor recording of Mom singing “Happy Birthday” to me last year, recorded from my cellphone. It’s only barely listenable, but I’m glad I have it.

I do have a good video and audio version of my parents singing “Happy Birthday” to me, but sadly, it was when Dad was rapidly declining in the care facility. The staff had him so drugged up that he could barely stay awake, and he mumbled through the song. Mom tried to compensate by being overly cheery, but I know her heart was breaking inside.

Just the year before, Dad belted out the best version ever, and even sang another classic crooner song. That is the recording I wish I had.

While I sometimes feel that in today’s world, people are so busy recording their lives to post on social media that they forget to be in the moment, the upside is that they will have all of the moments recorded to cherish later.

So my birthday wish is for everyone to experience and if so desired, record loving moments with their family. It truly is something we often take for granted, until the opportunities no longer exist.

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White House Conference on Aging: Great discussions, now we need to see action

Update: I was moved by many of the stories and statistics shared at the White House Conference on Aging. How little paid caregivers earn and the rallying cry to pay them a livable wage of $13/hour. A woman who juggles the demands of motherhood and her father who has Alzheimer’s, yet sits on hold or gets the run-around when calling for help from government agencies.

There were many programs and initiatives unveiled at the conference, and while many sound promising, the proof will be in the results.

Original post:

The White House Conference on Aging is happening today. I think it will be of interest to many who follow this blog.

I wish I could be in Washington, D.C. to participate in person, but I am following along with the live stream of the conference and taking part in the conversation on social media by using the hashtag #WHCOA.

whcoa logo

I hope the conference will help generate greater awareness for the issues impacting caregivers in America, both family caregivers and professional caregivers. The fact that the government is taking a day to discuss aging issues is progress, but of course, legislative action and government funding is ultimately what is needed.

If you catch any of the conference, share your thoughts below.

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Mom’s first birthday without her

Today would have been my mom’s 78th birthday.

Last year, Mom was still doing pretty well but the pain that would plague her for the rest of her life had already reared its ugly head. It was not yet the chronic, acute pain that would agonize her final months, but it was a sign that illness had rejoined the family.

I had a feeling this time last year that it would be my mom’s final birthday. At the time I feared the cancer had returned, but hoped it was just another hernia that could be surgically repaired.

My mom on her 77th birthday.

My mom on her 77th birthday.

We never did get a confirmation as to whether or not the cancer had returned, thanks to a whole host of roadblocks, from my mother’s surgeon suddenly leaving town, to appointments with the new surgeon getting bumped, to bad winter weather forcing her to cancel appointments. None of the scans that she had performed repeatedly showed a tumor, but by the time a colonoscopy was ordered, she was too weak to have it done.

I’m glad for her last birthday on this earth that I was with her and was able to present her with the Chicken Soup for the Soul book that included my submission which was inspired by my mother. She loved it and read it aloud over and over.

Today I went to an energy healing session. It was a fascinating and insightful experience and I highly recommend it if you feel like you are emotionally overwhelmed or emotionally blocked in some way. I’m an open-minded skeptic when it comes to such things, but the insights provided gave me plenty of food for thought and self-improvement tips for the mind, spirit and body.

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Brush with death while reflecting upon death

Today, while walking to the park, I was almost hit by a car. I had for the first time in my life the overwhelming fear at facing my own sudden demise.

The street I was crossing is a major road in my neighborhood, with one side being the beginning of the park. I was approaching from the other side, and was crossing at the crosswalk, which has a flashing light that by law requires cars to stop for any pedestrians.

crosswalk

Sadly, very few Atlanta drivers obey this law.

On top of that, all of the metal barriers were left up from the marathon that had been run the day before. I positioned myself in front of one of these barriers, and waited for the cars to either stop or clear the intersection before crossing.

Finally, a large SUV stopped for me. I could not see around it, but waved thanks to the driver and began crossing. That’s when I heard a horn honk, and the car behind the SUV pulled out and suddenly was barreling straight at me.

I froze, fully expecting to be struck by the car. I put my hand out, I guess hoping to launch myself on the hood instead of going under the wheels.

Fortunately, the impatient driver had good brakes. My hand landed on the hood of the car as it came to a halt.

To say the least, I was shaken. I had wanted to go for a long walk and brainstorm some of the ideas I have for essays about taking care of my mother. Instead I spent most of the time shaking off that brush with death.

I guess the takeaway is that you never know when you are leaving this world. It could be crossing a street you’ve crossed safely a hundred times in your neighborhood. Try to make each day as satisfying as possible.

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Glen Campbell documentary ‘I’ll Be Me’ a powerful, profound look at Alzheimer’s

I finally had the chance to see the documentary about Glen Campbell called, “I’ll Be Me.” I highly recommend seeing it, even if you are not a fan of Campbell’s music.

The documentary is an unflinching yet loving look at how Campbell and his family have managed his Alzheimer’s diagnosis. The film once again confirms the power of music. It was amazing to see how long Campbell’s music ability endured, even as he entered the late middle stages of the disease.

The film, made in conjunction with his family, doesn’t shy away from the ugly aspects of Alzheimer’s. Viewers witness Campbell’s temper, repeating questions, communication difficulties, wandering, discussions of incontinence episodes and paranoid outbursts.

Viewers get a behind-the-scenes look at the sometimes chaotic backstage scene before shows. As we all know, those with Alzheimer’s have good and bad days, until they end up with more bad ones than good ones. When you are performing in front of hundreds of people, the good and the bad are magnified.

Campbell is now in the final stages of the disease and lives in a residential care facility.

For Campbell fans it will be difficult to watch one of the greatest guitarists of all times deal with such a debilitating disease, but his phenomenal guitar work is on display throughout the film, as is his sense of humor and his fighting spirit.

If you’ve seen the film, please share your thoughts.

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A double whammy on Father’s Day

Not only is today Father’s Day, but it is also the one-month anniversary of my mother’s death. So both of my parents are weighing on my mind heavily today.

I can’t believe it has already been a month since Mom passed. Of course I think of her every day, but I especially thought of her when the tragedy in Charleston occurred. Mom was always so heartbroken to hear news like that. She truly could not understand why some people choose hate over love.

family pic

So just like with any death, life goes on, the good, the bad, and the ugly.

To honor my mom today, I’m getting my hair done, which was one of her favorite activities. She loved going to the salon, and sadly, she had to cancel her last appointment because she wasn’t feeling well.

To honor Dad on Father’s Day, I’m going to take a long walk in the park, one of his favorite activities.

How are you spending your Father’s Day?

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