Caregiver Support

Dementia caregivers: 21st century heroes

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Those family members who have had, or who currently have, a family member or close friend with Alzheimer’s or other dementia, you are my hero.

You took on the task of showing your love and compassion by signing up to become a family caregiver which at its best is a learn-as-you-go, long-term commitment. Your efforts make a difference in the life of your loved one. They may not be able to express their appreciation for all that you do, but please know that the essence of who they are acknowledges your kindness.

Your name and/or identity may be lost to them, but you are still a vital part of their lives, and your friendly and loving demeanor goes far toward affirming them and making them feel valued and loved.

Thank you for all that you have done, continue to do, and will remain doing in the future. It is an honor to be in your company.

Requiem for the status quo was released by Black Rose Writing on July 20th. You can order Requiem at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.

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Reader discoveries

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To celebrate my novel’s release, I held a giveaway on a Facebook readers group, A Novel Bee, and made some extraordinary reader discoveries.

I gave the members of that group 24 hours to leave a comment on my giveaway announcement if they wanted to be entered into my contest to pick one lucky (hopefully lucky) reader to receive a complimentary copy of my novel, Requiem for the status quo.

I received 37 entries, and a considerable percentage of those readers’ entries made mention of their own personal Alzheimer’s/dementia caregiving journey. Here are just a few of those comments:

  • I am a geriatric care manager, can’t wait to read it!
  • My friend just had to put her mom into a caregiving rest home because she could no longer handle her. She was becoming quite violent. It is a horrendous disease.
  • I love that you are writing inspiring stories! Many of us are or were caregivers and the hopelessness we feel when we dont see them getting better can be overwhelming. Your compassion is so sweet and much needed in todays world. Im really excited to find a new author I can enjoy!
  • I would be honored to read this book, my father had Alzheimer’s disease. I want to tell you that the cover is totally amazing !!!!!
  • I would love to win. My husband has Alzheimer’s/ dementia so it is if special interest to me.

Even as familiar as I am with the statistics for this disease – 44 million diagnosed worldwide as of this writing – it still astounds me to hear the personal stories associated with it. Like every terminal disease known to man, Alzheimer’s and other dementia are very personal diseases. The brain – the very essence of a person’s being – is the initial body part affected. What we say, how we behave, and who we are resides in the various, vital parts of our brain. Our brain is the grand traffic director of all things me.

It’s no wonder the very long goodbye associated with this disease is so devastating to the one diagnosed, as well as for the one caring for her or him. It’s very personal, isn’t it?

I am of the belief that family dementia caregivers are 21st century heroes. Additionally, all caregivers, not just those on a dementia caregiving journey are the best of the best. They are:

Ordinary people, doing the ordinary right thing, at an extraordinary time.

I am honored to be in your company.

Requiem for the status quo will be released by Black Rose Writing on July 20th. You can order Requiem at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.

 

Support for my readers

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I’ve mentioned in previous posts that my “book tour” may look more like a senior center tour than a literary one. The reason: I want to reach those who could use a bit of what I have to offer. As my Author Bio states, I want to make a difference in the lives of others by writing novels that encourage those who just might need another cheerleader in their corner. At the bottom of each of my site’s pages is a section titled READERS CORNER. Each week I provide a new element of encouragement as my simple way of standing in my readers’ corner.

Yesterday I witnessed one small way in which someone was reached by my novel.

I had a haircut appointment with my wonderful stylist, Molly, of C.J. Salon. Molly has followed my entire publishing journey and is very familiar with the topic of my soon to be published novel, Requiem for the status quo. She finished up with her previous client and welcomed me into her chair. I did the reveal of my published novel which I had brought with me for a much anticipated Show and Tell moment. I also gave her several copies of my marketing brochure that provides a peek into the storyline and the lives of the characters. “Please hand them out to women who could possibly benefit from reading my novel.”

She grabbed one of the brochures, said, “I’ll be right back” and ran out into the parking lot to flag down her previous client. Turns out this client is fully-involved in a family member’s dementia journey and Molly felt she could benefit from reading my book. Turns out she was right. Her client was so excited, she hugged Molly and basically said, “This is what I’ve been looking for!”

That, my friends, was the highlight of my week – someone who wanted what I had to offer and just might benefit from the read. But you wanna know something else? My appointment was initially scheduled for 3 pm. The day before I found out I had a change of plans for my Friday, freeing up my morning, so I called C.J. Salon, asked if they had an earlier opening, and I grabbed it.

Molly’s client benefited from my change of plans – a change that initially was upsetting to me, but turned out to be just what was supposed to happen.

My oh my, I love how the Universe cooperates when its occupants are just going about their lives, oblivious to its whiles!

In less than two weeks, Requiem for the status quo will be released. It is currently available for preorder at Black Rose Writing; enter discount code PREORDER2017 before July 20th for a 10% discount. You can also preorder Requiem at Barnes & Noble and Amazon. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.

Caregiver Stress – no one is immune

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Life as a Caregiver and Dealing With Stress Caring for Aging Parents – AARP.  The attached article, written by Dr. Nancy Snyderman, chief medical editor for NBC News, shows us that even doctor-caregivers are not immune from the stress brought on by caregiving.  A year after Nancy and her siblings moved their parents to live near her, Dr. Snyderman became “one of almost 44 million U.S. adults caring for an older friend or family member.”

My dad and I, five years before I became his caregiver; 13 years before he died from Alzheimer's.
My dad and I, five years before I became his caregiver; seven years before he died from Alzheimer’s.

Statistics show that caregivers tend to patients who are loved ones, an average of 20 hours each week – many times on top of part-time or full-time employment.  Before long, Dr. Snyderman came to the realization that she had forgotten to check in on how she was doing.  She gained weight, she slept only a few hours a night, and she experienced burnout – not unlike what many of us have felt as caregivers – or former caregivers – for family members.

In my article, Caregiver: put on your oxygen mask first, I address the importance of caring for yourself first, and the patient second.  “No way,” you say, “my mom/dad/spouse come first; they need me!”  You’re absolutely correct – they do need you, but if you get sick or disabled, you can’t be there for them.  That’s why you need to place the oxygen mask on yourself first, and then on the person for whom you are providing care.

Most of us learn the hard way.  We get burned out and emotionally or physically incapacitated, and then we start taking care of numero uno.  Do yourself – and your loved one – a favor.  If you’ve been ignoring the signs of stress that are enveloping you, stop being such a hero and start taking care of yourself.  You will benefit from such care, and so will your loved one.

Caregivers – this message is for you!

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No Matter What, I Simply Cannot Get Sick!.

Fellow blogger, Don, talks about his caregiving journey with his wife in which he swore off getting sick because – quite frankly – he couldn’t afford to be sick when his caregiving duties required that he be healthy and available 24/7.

One could argue that just being worried about getting sick might make one sick, but fortunately, that was not the case for Don.  Having read many of his articles, it appears that he knew what was required of him as a caregiver – the same thing that is required of all of you who are still on your caregiving journey: assemble a team, spread out the duties, and seek emotional and physical support in whichever form you need.

First and foremost, please read Don’s article attached above.  After you have done so, I hope the three articles below will also prove beneficial towards providing direction on how one might assure a successful medical and mental health caregiving journey.  When you take care of yourself, you’ll be better equipped to take care of your loved one.

Caregiving: The Ultimate Team Sport

Solo Caregiving

Caregiver: put on your oxygen mask first

There’s an App for that!

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A recent article by Jim Fitzgerald of the Associated Press focuses on a few electronic methods that might relieve some of the struggles experienced by caregivers who try to balance their frantic personal lives with the oftentimes emergent needs of their loved ones.  For the purposes of my article, I am only looking at the type of monitoring put in place by a family member to check on an elderly person’s well being; primarily a family member with Alzheimer’s or other dementia.

Beleaguered caregivers getting help from Apps is an eyeopening look at how Smartphone Apps, and other electronic devices, can provide some sort of relief to lessen the caregiver’s load.  Many of those who are long-distance caregivers, such as I was for my father several years ago, might benefit from being able to monitor their family member’s safety and well-being from a distance.

But does such monitoring invade the loved one’s privacy?  Of course it does; but I guess one could say that the benefits outweigh the disadvantages of such monitoring.  Or do they?  What comes to my mind is the elderly person’s gradual loss of independence – an aspect of life that many of us would equate to being a requirement for our own quality of life.  But I digress.

At best, I think electronic monitoring serves as a stop-gap or interim measure of caregiving before hands-on care is put into place.  The Pillbox App keeps a very tentative watch on whether or not a loved one – say a parent – has taken his medication properly.  If the parent does not have compromised executive function, it’s certainly easy to “fake it” so that the daughter can feel as though all is well ten miles away.  In reality, however, medication mismanagement might be taking place, carried out by the parent.

Elderly People - sign on Warwick Road, Olton
(Photo credit: ell brown)

The Alzheimer’s Association Comfort Zone program requires that a loved one wear a GPS device at all times so that family members can monitor their comings and goings throughout the day.  The system is of no benefit if the person doesn’t wear the pager; and if the person has dementia, there’s a strong likelihood of that happening.  I’m being the devil’s advocate here, simply pointing out that the system is only as good as the cooperation required to use it.  HOWEVER, and this is a demonstrative HOWEVER, it appears to be a very worthwhile system that provides numerous benefits.  Other than taking away ones right to privacy, it definitely serves as a safety net for when mom, dad, spouse, or other loved one, are heading into trouble.

I’m skeptical of Comfort Zone but I’m also its fan.  I’ve linked the Comfort Zone website above so that the reader can determine if such a system is worthwhile in his or her situation.  My skepticism comes about because I wish more attention and financing would be spent on a cure for Alzheimer’s and other dementia so that these current monitoring methods become a thing of the past.  A world without Alzheimer’s sounds just as desirous as a world without cancer, or MS, or Lou Gehrig’s disease, to name a few.  More disease control financing = more cures.

One final word: I’ve already experienced two family members with Alzheimer’s and all the caregiving migraine headaches associated with those experiences.  So please know that I’m a proponent of worthwhile practices that ease the caregiver’s burden.  Unfortunately, there is absolutely no fail safe method out there that will give caregivers true peace of mind.  Even placement in a long-term care facility is not a 100% guarantee that mom, dad, sis, or gramps will receive the best care possible.  I’m sorry to burst your bubble – but it’s true.

Being a caregiver or being cared for: there’s really no escape hatch.

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In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come.  I also talked about caregiver statistics.

One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds.  In actuality, the stats are far greater than that.  Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one.  I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.

The following statement is attributed to former First Lady of the United States, Rosalynn Carter:

There are only four kinds of people in the world – those who have been caregivers,

those who are currently caregivers,

those who will be caregivers, and

those who will need caregivers.

I really don’t think there’s any way around it.  How about you?  Have you dodged the caregiver or being-cared-for bullet yet?