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Posts Tagged ‘elderly’

The invisible side of caregiving.

In Children and Family, finances, Health, Jobs, Local News, National News, Opinion, psychology, Senior Lifestyle, sociology, Uncategorized on January 10, 2017 at 9:32 pm

Deer In Headlines
By Gery L. Deer

12191385_10153464406329342_2088873762632508759_oWhen you think of the term “caregiver,” you might have the image in your head of the dutiful family member looking out for an elderly parent or disabled child. What you see in public or on the surface is someone helping a senior citizen do her shopping or teaching a child with limited mobility to use an iPad. But, it’s the stuff you never see that is really the hard part of the job.

Caring for a family member is not something that comes with many benefits. Actually, there is only one benefit – looking after your loved one. Yes, there are some people who get paid to take care of a family member, but that’s rare and extremely difficult to

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Shower prep for caregivers can be like gearing up for battle. Helping a senior parent with every day personal care can be hard to get used to – for both – but extremely necessary.

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Medicines must be cataloged, dosed, and set into daily dispense containers. Tracking of administration is also necessary to ensure proper care, safety and financial maintenance.

Personal care is one of the hardest parts of caring for a senior parent. Different than helping a child with these issues, an elderly adult has a different perception of self-sufficiency and personal dignity. I can’t even imagine how hard it is for my father that he now needs help just to do something as simple as shaving or taking a shower.

As a Parkinson’s sufferer, Dad can’t hold his hands still enough to shave with a safety razor and we’ve had to go to an electric model. He does his best to try to do it on his own, but his hands can’t apply any pressure to the razor on his face so it misses, well, pretty much everything. So once a week, we do a complete, clean shave starting with a trimmer.

Showers also require some consideration to personal dignity while trying to ensure complete cleanliness. When I help Dad with a shower, it’s like gearing up for battle. It’s tough to get used to, for both of us. But we do our best. I just try to make sure he gets in and out without injury, get him clean and get him dressed. How would you feel if, suddenly, your children had to help you with trimming nails, combing hair, or washing? You have to be aware of your charge’s discomfort while still meeting the needs.

Managing medications is also a challenge for caregivers. I’m actually pretty lucky in our situation because Dad’s meds – for now at least – can be divided into two daily packets. Every Sunday, I refill a daily box dispenser and we have a record book to record every dose administered and by whom.

14192078_10154177027939342_4999691246789055042_nMoney is probably the biggest sore spot for many caregivers as well because we end up having to handle our own homes as well as the finances of our charge. It wasn’t long after my mother became ill that I learned who the money manager of the house was as I grew up.

As is common with many elderly folks, Dad was letting bills go unpaid, utilities were being cut off, debt was mounting and statements lay unopened, piling up on the kitchen table – Never again. My siblings and I took over managing his money and paid off all his major debt so we only have living expenses, medicines and doctor bills to worry about.

The problem is that things won’t stay that way. People don’t understand how little Medicare and its supplements really cover and the expenses continue to mount as a senior’s care grows more complicated because things like Parkinson’s continue to progress.

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Adjusting work to caregiver life is rarely easy, sometimes it is impossible. Many caregivers have to choose one over the other.

Naturally, The U.S. Congress is far too busy voting itself another ridiculous raise and cutting Social Security to bother considering how to better spend money to care for its citizens. After all, it’s “our” money. And there is no outside financial support for caregivers.

So, the bills continue to roll in – co-pays, lift chairs, vaccinations, home care (yes, it’s mostly self-pay), unforeseen changes in the health of the patient and the understanding that with Parkinson’s, diabetes and glaucoma, my father will get worse, even with the best possible care.

Tons of other things come into play too. When you’re a caregiver, you’re often the housekeeper, accountant, chef, chauffeur, nurse, clothes and dishwasher, and much more. The rest of the world doesn’t see the countless hours spent making sure the things like cracker packets and juice bottles are stored in a way he can easily open them with limited mobility.

Over the years, I’ve written many times about my experiences in helping to care for my parents. But people I meet always seem to be shocked how much we have to do that no one ever sees. So, when you see someone out in public dealing with something like this, just remember how hard it is and open a door for them or be patient when they’re sorting groceries for two households at the checkout. We appreciate it.

 

Gery L. Deer is an independent columnist and business writer. Deer In Headlines is available as a podcast at MyGreeneRadio.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