Dementia and Disagreements: No one wins

Joy Johnston:

I’m sure this post will ring true for many family caregivers. Behavior changes can also occur with other diseases, like cancer. I struggled mightily at times trying to navigate the emotional roller coaster my mom was on during her battle with cancer.

Originally posted on Dealing with Dementia:

unwontictactoeFor me, morphing from adult child to caregiver has taught me much. One of the hardest adjustments is leaving behind your past and learning that as the disease progresses, no one ever wins disagreements. If a discussion is getting contentious, it needs to end without anyone emerging “right”.

This was tough for me to learn because in our family, debates and the exchange of ideas was a tradition at our dinner table – even into adult hood. As mom’s disease progressed, frank discussions, or any disagreement brought out the lion. She would just become combative. Medication has helped and she is much less suspicious and disagreeable now.

It took me time to learn, but I began to redirect, let go and change the topic when a disagreement was coming. I’m not perfect at it, and on a bad day, I still struggle to overcome the old patterns of our…

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Home care workers raising hell for a good reason

One of the only positive things that has come from both of my parents suffering from serious illnesses is that I discovered the importance of home health care workers. Notoriously underpaid and given little respect, home health care workers in multiple states across America are finally raising their voices and demanding better treatment.

It may not take a college degree to help feed a patient or take care of their toileting needs, but it does take a certain amount of compassion, patience and emotional strength that many people seem to lack. Many home care workers are supporting families, and in America, it would be difficult for a single person to survive on the current minimum wage. Current laws in the U.S. allow home health care workers to be paid less than minimum wage. There is already a growing number of workers in the fast-food and other retail industries that are demanding the minimum wage be increased from a paltry $7.25 per hour to $15 per hour.

holding hands

While I feel $15 per hour is not going to be feasible in our economy, I could support increasing the minimum wage to at least $10. In addition, I would like to see some kind of tax break for home health care workers as an extra incentive to join this profession that is only going to grow in demand as our population rapidly ages.

I remember the kind, yet exhausted home care workers that helped care for my parents in their times of need, and I learned a lot from them. They offered practical, time-saving and thrifty solutions that I never would have considered. They were good-humored but firm when necessary, such as when providing care instructions. They negotiated difficult personalities and never seemed to take a break.

While raising the minimum wage for home care workers will have financial consequences and will require some retooling of already-strained state budgets, it is something that this country needs to understand is a priority. We’ve heard the unfortunate cases of home care workers who physically or mentally abuse their patients, and even steal from them. If these workers continue to be ignored, their resentment will only grow and our loved ones will suffer. Let’s reward those who are providing quality care to our family members and not allow this part of our workforce to remain invisible any longer.

If you are interested in learning more about the cause, Caring Across Generations is a great place to start.

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We Have Now

Joy Johnston:

A beautifully written piece reminding us caregivers to find joy whenever possible in the present. I also love the idea of using past positive memories to connect with our loved ones with dementia.

Originally posted on Georgia Chapter Blog:

IanDKeating_MotherandChildWalkingDownaPath

Courtesy of Flickr/Ian D. Keating

Faithful readers may have noticed there’s been a lot more talk of goodlifery than homesteading lately. There’s a good reason. Two reasons, actually. My Mom and Dad.

Both are battling their own long-term illnesses, and I feel fortunate that my sisters and I are able to look after them. While caregiving can be all-consuming, I never cease to be amazed at the lessons my parents are still teaching me. Especially my mother, whose Alzheimer’s has stripped life to its very essence.

  • There is no past or future. Only the present. Your previous successes or failures don’t matter. Regret and guilt are a waste of time. There is only this moment, maybe sitting in a swing, holding the hand of someone you love, someone you suddenly realize won’t always be here. Savor each moment and live in it fully. Memorize it. The rest of the world…

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Fascinating study regarding cancer and Alzheimer’s

Because I had one parent who had Alzheimer’s and another parent who has battled cancer, I was intrigued by this study that explored the low rates of cancer in those with Alzheimer’s and vice versa.

maze

Researchers may have found a defect in a critical brain cell pathway that can lead to Alzheimer’s or cancer depending upon which way the imbalance of cell activity presents itself. This may help explain why Alzheimer’s patients have a lower risk of cancer and cancer patients are at less risk for Alzheimer’s.

Further studies will try to determine if activity can be boosted in the damaged cell pathways, which could potentially reduce the cognitive impairment in Alzheimer’s patients.

I always thought my dad was destined for cancer because of his smoking habit, yet he remained cancer-free, while my mom, who doesn’t have typical cancer risk factors ended up with colon cancer. While I’ve read of people who have had both diseases at the same time, it does seem pretty rare. Instead, we hear more about the cruel irony of the dementia patient who is otherwise physically healthy.

After all of the deaths and misery both of these diseases have caused, it would be wonderful to find an effective treatment for both of them.

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“Person-Centered Matters” is a beautiful and compelling 16-minute video

Joy Johnston:

I’m a strong believer in person-centered care for those with dementia as I’m sure many of you are. Please share this video with your readers to help spread awareness.

Originally posted on Alzheimer's Speaks Blog:

Dementia, Including Alzheimer’s

Has Become A National Challenge

In The U.S.!

Over 5 million Americans are currently living with dementia – or one in nine people age 65 and older – and the number will escalate at an alarming rate as the baby boom generation ages. It’s very likely you know someone in your extended family or community with this condition.

Dementia costs now exceed those for cancer or heart disease. Despite the high expenditures, dementia care in the U.S. is fragmented, the quality of paid care is uneven, and most services and supports are NOT following the gold standard of person-centered practices. Person-centeredness nurtures well-being by supporting one’s dignity, individuality, personal preferences, and choices.

Person-centered care is the gold standard and can help make life better for people living with dementia and for those who care about them.     “Person-Centered Matters” is a beautiful and compelling 16-minute video produced by the…

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“The Genius of Marian” an emotional, intimate look at Alzheimer’s

It may seem odd to say that a documentary about Alzheimer’s is beautiful, but there is much beauty in the family-made documentary, “The Genius of Marian,” as well as a great deal of love.

That’s what makes the devastation that Alzheimer’s unleashes on this one close-knit family so utterly heartbreaking.

Photo: geniusofmarian.com

Photo: geniusofmarian.com

The documentary is about two remarkable women, mother and daughter, both who end up with Alzheimer’s. Marian Williams Steele was a talented artist and vibrant woman. She was diagnosed with Alzheimer’s in the late 1990’s and passed away in 2001 at the age of 89.

Her daughter, Pam White, is equally fascinating. She is a beautiful woman with an amazing smile who was an actress and model. After her mother passed, White planned to write a book about her called, “The Genius of Marian.” Sadly, Pam herself was diagnosed with early-onset Alzheimer’s at the age of 61, just as she was getting started on the book.

Her son, Banker White, decided to make a documentary about these two remarkable women. He doesn’t hold back, showing the ups and downs that occur with Alzheimer’s, and how the family struggles and copes with the situation.

White’s husband is a testament to the power of love. He does an incredible job as caregiver for his wife, a role he was thrown into with no experience, like many family caregivers.

I don’t want to give anymore away because you really should see the film. The good news is that you can do so for free thanks to PBS, through Oct. 8. I watched it on the PBS channel on my Roku box. You can also watch it online. If you can, please consider donating to the filmmakers’ charity, The Genius of Caring.

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Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s by Meryl Comer

Joy Johnston:

Another book to add to our reading list. There is always something to learn in the experiences of others.

Originally posted on Sociological Ruminations:

Book Review: Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s (HarperOne, 2014) by Meryl Comer

Slow Dancing with a Stranger was published earlier this month, and all proceeds will be donated to Alzheimer’s research.  In this memoir, Meryl Comer writes about taking care of her husband, Dr. Harvey Gralnick, who developed early-onset Alzheimer’s and has been living with the disease for the last nineteen years.  slow dancingMy dad has been living with Alzheimer’s for ten and a half years, so I was very surprised by how long it took for Comer’s husband to initially be diagnosed and receive treatment after he started showing signs of Alzheimer’s.  It took at least 4 years.  This was due, in part, to denial and pride — her husband was a doctor and researcher who worked for the National Institutes of Health.  Alzheimer’s was also not really part of the…

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