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Posts Tagged ‘Alzheimer’s disease’

Caregiving a parent with dignity

In Children and Family, Economy, Education, Health, Opinion, psychology, Senior Lifestyle, sociology, Uncategorized on October 5, 2017 at 3:03 pm

Deer In Headlines
Gery L. Deer

When you’re a caregiver of a senior parent one of the most difficult things is maintaining the dignity of your charge. When we’re kids, our parents wipe our faces free of food, help us in the bathroom, even spoon-feed us. But, decades later, when those roles are reversed, it’s important to keep in mind that the person you’re helping isn’t a child. He or she is an adult with a mature sense of dignity and pride.

It took me a long time to get used to helping care for my parents. To say it was uncomfortable to have to help my mother dress or manually feed her would be a massive understatement. Alzheimer’s had long settled in by the time she broke a hip, but not being able to walk created further challenges. Her mind was like that of a toddler and she didn’t initiate speech or really understand anything going on around her. So, it was different than it is with my father now.

Deer In Headlines author, Gery Deer, with his father, Gary Sr.

My parents were proud people and didn’t like taking help from anyone. Now, the man who was always looking after everyone around him needs more care than he’d probably ever imagined he would in his golden years.

Like many seniors in this situation, Dad is fully cognizant of what is going on around him, but he needs a great deal of physical help in managing his day-to-day activities. One thing it took a while to understand is that his sense of personal privacy and dignity must be preserved, though it seems to outsiders like it wouldn’t matter as much anymore. It does.

Which brings us to the first point of what you can do to maintain self-worth for your senior parent, whether you’re caring for them all the time or just helping out once in a while. First, you can help maintain personal privacy and dignity by closing the door when you help him or her to bathe, dress or change clothes.

You wouldn’t think twice about closing the door when you do those things but put yourself in their place. What makes you feel awkward probably makes them feel that way too.

Don’t make a show of things. Try your best to avoid drawing unwanted attention to your charge whenever possible. Adult children sometimes have a need for outside validation of the caregiving task they’ve undertaking and can be overly dramatic in public. I can assure you it’s unlikely your mom or dad or whomever you’re caring for really wants any of that attention. They want to feel as normal and inconspicuous as possible so help them.

The more prepared you are the better. Keep a care bag packed to travel with, even if just going around town for the day. Load it with spare clothing, tissues, a towel, facial wipes, a bottle of water, specialized eating utensils, whatever your senior may potentially need, both commonly or in an emergency. Remember that their comfort comes first. Be ready for anything.

Sometimes the best way to help is to do nothing. As frustrating as it can be as a caregiver to sit by and watch your charge struggle to do something like button his shirt, there are times when you need to do just that – nothing. Although it can be part of the individual’s therapy to do normal, day-to-day things like getting dressed, it can be challenging.

And, as caregivers, it’s tough not to jump in and just do it for them. But, from the standpoint of respect, you have to let them do their best to tackle it on their own. It’s when their own frustration level peaks you might need to take over.

Naturally, there are things you have to do to care for them that they’re not going to be happy with. He or she may not want to use the cane or walker they’ve been provided. You will probably need to be firm with them on this because sometimes safety must outweigh pride.

Finally, be patient. I struggle with this one daily. Remember that this is hard for them too. Remember you’re not alone. If you need help, go find it.

Gery L. Deer is an independent columnist and business writer. More at deerinheadlines.com.

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Music shines light through darkness of dementia

In Health, Local News, Opinion, Senior Lifestyle, Technology, Uncategorized on August 18, 2014 at 12:20 pm

DIH LOGOAccording to statistics, one in three senior Americans now suffers from some type of dementia. My mother, Lois Deer, was one of those unfortunate millions who had an advanced type of Alzheimer’s disease. As it progressed, she lost the ability to communicate on anything more than a passive level, responding to very little, short of a head nod or facial response here and there. When she spoke, it was in whispers and then only gibberish.

One thing that did seem to register, however, was music. Each Saturday night we would move her wheelchair to the band room at my parents’ farm where our family band, “The Brothers & Co.,” would rehearse. We would feed her dinner – a manual task since she couldn’t do it on her own – and she’d spend most of the rest of the evening listening to us play and sing, surrounded by family in a room she created for us.

Gery Deer discusses Music and Dementia on WDTN-TV2's Living Dayton during a "Deer In Headlines" segment. Click to watch the video clip ...

Gery Deer discusses Music and Dementia on WDTN-TV2’s Living Dayton during a “Deer In Headlines” segment. Click to watch the video clip …

Music was an important part of my mother’s family growing up, with virtually ever member playing some kind of instrument, many of them without the aide of formal lessons. She even sang in an “Andrews Sisters” type quartet with her own sisters in the late 1950s.

By this time, however, Usually, she had a kind of empty, blank expression on her face, a typical Alzheimer’s manifestation. But one evening during our practice, she was sitting near my piano and I caught sight of a slight smile in her eyes and looked down to see her toe tapping on the footrest of her chair.

Since Mom needed 24-hour care, and because we had no intention of leaving her to rot in a nursing home, we cared for her at home and she came along with us to every performance. She had a specially-outfitted seat on our tour bus, complete with an oxygen tank and all of our portable medical supplies. My cousin sat with her in the audience and she would sing, “You are my sunshine,” with us at some point in every show. Music got through, when nothing else would, and I’m relieved to know that I’m not the only one who noticed.

Lois Deer (center) with The Brothers & Co. members Gary Deer Jr., Gery Deer, and husband Gary Deer Sr. at the Jamestown Opera House in 2010

Lois Deer (center) with The Brothers & Co. members Gary Deer Jr., Gery Deer, and husband Gary Deer Sr. at the Jamestown Opera House in 2010

A friend recently told me about a National Public Radio news story related to this phenomenon. The piece focused on a documentary featuring social worker Dan Cohen and his creation of custom music playlists on iPods for elderly dementia patients. Titled, “Alive Inside,” the film explores Cohen’s exploration of the connection between music and long term memory.

“Even though Alzheimer’s and various forms of dementia will ravage many parts of the brain, long-term memory of music from when one was young remains very often,” Cohen told NPR’s Melissa Block. “So if you tap that, you really get that kind of awakening response. It’s pretty exciting to see.”

That all makes a lot of sense when you think about the kinds of music my family band plays and the relationship my mother had to it. There’s no question we were reaching an area of her mind that the Alzheimer’s hadn’t yet shorted out.

After I noticed my mother’s reactions, I paid more attention whenever we performed at nursing facilities where a great number of the residents were suffering from similar illnesses. I can’t tell you what a heart-wrenching experience it always is to see these poor people in such a state; doubled over in wheelchairs, closed off, withdrawn into the isolated torment of their own disease-ravaged minds. And then …

And then we start playing and something would happen, a toe would begin to tap here and there, or a silent face would begin to mouth words to a song. Although it might seem like there’s nothing left of the people they once were, here was a sign that they were still in there – somewhere – and we were reaching into that one place the disease couldn’t penetrate.

All I can imagine is that the music we were playing took my mother somewhere else within a mind that’s organization had long since scattered, as if someone rearranged all the drawers in a wardrobe chest.  She was in another place and another time, a better time.

Christina Corallo, North Shore LIJ Orzach Center for Rehabilitation, Valley Stream, N.Y., tells MusicandMemory.org, “Patients with anxiety and depression are less agitated and appear calmer. The music transports them to a happier place in their minds.”

"The Sutton Sisters" singing family, Lois Deer (far right) and her sisters, (from left) Ruth Rowe, Isabel Jones, and Regina Marshall, ca. 1958

“The Sutton Sisters” singing family, Lois Deer (far right) and her sisters, (from left) Ruth Rowe, Isabel Jones, and Regina Marshall, ca. 1958

Cohen’s idea of customized iPod playlists for each patient is still plagued by one major hurtle – money. Nursing care, particularly long-term dementia care, is incredibly expensive and iPods aren’t cheap. It’s the same financial roadblock encountered by virtually every other progressive therapy for dementia ever proposed.

With that, I am challenging one member of the family of every dementia patient to buy an iPod for their loved one and load it with music from their life. Give them a moment to feel who they once were in the most personal, powerful way possible – through music.

 Learn More About Music and Memory…

Click here for a link to the full NPR story,”For elders with dementia, musical awakenings,” by Melissa Block.

Click here to watch the trailer, “Alive Inside: A Story of Music & Memory” featuring Dan Cohen.

Donate to Music & Memory: Monetary or iPods 

 

 

What was the “crucible event” that changed your life?

In Opinion, psychology, Religion, sociology, Uncategorized on October 30, 2013 at 9:15 am

DEER IN HEADLINES

By Gery L. Deer

GDEERDIH3Some people believe one is destined to become whatever is predetermined by their god, with all of life’s events planned in advance by some divine manifest destiny. For others, that destiny is in a constant state of change, altered by the ebb and flow of cause and effect, guided not by the hand of a supreme being but by our own choices.

Generally, however, there are some events in life that we can pinpoint as our time of transformation; a crucible, if you will. Within it, parts of us are burned away leaving a changed, newly-formed person, sometimes for the better, sometimes not.

Divorce, extended health problems, the loss of a home, personal income or a job, can all bring about emotions and primal reactions for which we are rarely well prepared. Perhaps the most powerful events that permanently change us are related to the death of someone close such as a family member, mentor or good friend.

For many the death of a loved one can be a crucible, forcing to the surface thoughts and emotions perhaps long buried, or never before experienced. How we deal with death is at least as important as how we deal with life, but we seldom take that concept to heart.

Even as a topic of conversation, death is to be avoided. Its unmistakable finality has so marked humanity that coping with the end of life has served as a catalyst for the formation of enduring religious beliefs, some of which comfort, others frighten.

What may be surprising is that a ‘crucible event’ does not necessarily have to be a negative or unhappy experience. The same kinds of life-changing occurrence can come from positive influences as well such as the birth of a child, a marriage or sudden financial windfall.

The events themselves, however, aren’t what change us; we do that on our own. Most people don’t realize they have the power, for the most part, to alter how they react to outside influence. Feelings are generated by thoughts, so if we control our thoughts, we can better manage our feelings and make more productive decisions during difficult times. That’s a tall order though when it feels like the world is collapsing around you.

I’ve had many challenges in life, from an early age, but the most influential times were during my mother’s long struggle with Alzheimer’s disease. The role reversal (the child becomes the parent), watching helplessly as the illness ravaged her mind and body, and helping to do everything from administer medication to hand-feeding her took a toll on me emotionally that I probably have yet to fully realize. But it did change me; in ways I can’t even imagine yet.

I look at the world a little differently now, having experienced for myself, largely for the first time, the fragility of life. But it was the experience of caring for my mom over the course of a couple of years that slowly burned away layers of my rigid exterior, making me “feel” more than I had previously been accustomed.

It’s really what we do with those feelings that make the difference in the long run. While an experience like I had with my mother could have left me bitter and resentful, I ended up taking to heart a more positive side and a greater appreciation for my family as a whole. Others aren’t so lucky.

Many people emerge from crucible events in a much darker place, filled with resentment or guilt or other emotions that eat away at their core, keeping them from seeing the good that came out of whatever had happened. And, there is always some good – sometimes it’s just very hard to see. Either way, we are changed, different, but it’s up to each of us to decide how those events ultimately affect our lives.

 

Watch independent columnist Gery L. Deer monthly on WDTN-TV2’s Living Dayton. More at http://www.gerydeer.com.

Author Shares Journey of Love and Despair as Caregiver for a Mother Ravaged Dementia

In Books, Education, Entertainment, Health, psychology, Senior Lifestyle, sociology, Uncategorized on May 30, 2013 at 1:43 pm

Elaine Pereira yearbookGREENE COUNTY, OH –  Author Elaine Pereira shared the seemingly never-ending journey of caring for her mother stricken with dementia in her newly-released book I Will Never Forget: A Daughter’s Story of Her Mother’s Arduous and Humorous Journey through Dementia (ISBN 978-1-4759-0690-5). The award-winning author will be visiting Xenia for two public events, June 6 and 7.

I Will Never Forget is a powerful true story of the author’s talented mother, Betty, and her poignant and humorous journey through dementia. As their mother-daughter relationship evolves, Elaine copes with her mom’s uncharacteristic verbal assaults and watches as her brilliant mind is slowly destroyed by dementia’s insatiable appetite for brain cells.

Elaine Pereira earned a BS in Occupational Therapy and an MA in Family and Consumer Resources from Wayne State University and worked as a school occupational therapist for more than 35 years before retiring in June 2010. In this moving account, Pereira shares warm and humorous incidents as well as tragic and overwhelming encounters from the death of her father, sister-in-law, brother and her mother’s journey through a new world after her familiar world fades from her memory.

“This is a true story which validates the incredible events that happened in my mother’s life,” says Pereira. “From writing nine checks to the same payee, on five consecutive days, and later on the Great Houdini Escape when she nearly froze to death, Mom’s journey through bewildering dementia is real.

Cover I Will Never Forget 1-15-13I Will Never Forget is educational and therapeutic but is a journal full of insights that will provide helpful assistance and tips to other caregivers of dementia patients. “I want newly-commissioned caregivers to learn from my unwitting mistakes, to realize that reasoning and logic are rarely helpful dialogue techniques with a dementia patient,” explains the author.

“That approach is confrontational and often creates agitation and a fear response in someone. Redirection, re-phrasing, waiting and patience are the most helpful response strategies to diffuse potentially hostile situations.”

During the year long writing process, Pereira was able to put the troubling incidents in her mother’s final years in perspective. “The little problems faded away and the core of her wonderful life surfaced for me. That is how I want to remember her, as she was in my eyes as a child.”

Pereira’s book was named a finalist in the Best New Non-Fiction category of the 2012 USA Book Award and was an honorable mention finalist in non-fiction in the 2012 Hollywood Book Festival and was bestowed a ‘Rising Star’ and ‘Editor’s Choice award by iUniverse. The book most recently won the aging category in the 2013 National Indie Excellence Awards.

At 7PM, Thursday June 6, Pereira will speak to the members of the Western Ohio Writers Association at  Blue Jacket Books, 30 S. Detroit St. in Xenia, Ohio, with an emphasis on how and why she wrote the memoir about her experience. The event is $5 per person, open to the public, and RSVP is requested by emailing the organization’s director, Gery L. Deer, wowainprint@gmail.com

The next evening, Friday June 7, beginning at 7PM, the author will be at Blue Jacket Books, 30 S. Detroit St. in Xenia, Ohio, to speak about the experiences so many people now have in caring for a parent or other loved one suffering the ravages of dementia and Alzheimer’s disease. There is no charge for this event and seating is first come first served. For information call 937-376-3522. The author will be selling and signing books at both events.