Neurological Disorders

Kindness Fridays

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This week’s kindness spotlights the Women’s Fiction Writers Association (WFWA) a fabulous group for writers of women’s fiction. Most if not all the administrative staff is volunteer – the reason why their kindness is this week’s selection. As a member of this organization, I was given the opportunity to have a podcast recorded for their Hear Me Roar program because I’m a debut author. Although my novel, Requiem for the status quo was released a year ago, it was my debut publishing effort.

This podcast is approximately 30 minutes in length, and although my novel is certainly the focus, much attention was spent on the prevalence of Alzheimer’s and other dementias in the world. Perhaps this podcast will keep you company on your commute in the next few days; although it may seem a bit choppy, I think it’s worth hanging in there to hear my, and the host’s, provocative discussion.

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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.

 

Do Not Ask Me To Remember

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Distraught manI’m reblogging this article I wrote in April of 2013 because it comes up in my blog stats as being extremely popular to many of you out there. I can only conclude that it’s popularity remains high because there are so many caregivers in the world who are tangled up in a daily life that centers around those with Alzheimer’s disease or other dementia. I hope many more will be encouraged – and pleasingly challenged – by what I have to say in this post.

Walk in Their Shoes… Just for a Minute.  The attached article contains encouraging advice that caregivers worldwide need to read, and re-read, from time to time.

Those of us who have been caregivers to loved ones with Alzheimer’s or other dementia know very well the frustrations felt when we come to the realization that we’re not sufficiently equipped to handle that which this disease presents us.  We’re walking in caregiver shoes, fully incapable of walking in those of the person with dementia.  If we could, we would shriek at what we see and experience.

So we get frustrated – understandably so.  We raise our voices in anger – and feel guilty immediately thereafter.  We complain to others about the one we’re taking care of – because we crave to be heard and understood by someone!

English: PET scan of a human brain with Alzhei...
PET scan of a human brain with Alzheimer’s disease (Photo credit: Wikipedia)

Do not ask me to remember is a loaded statement and one which should give us pause.  We know the person with dementia is not able to remember the previous five seconds, so why do we ask them to remember where and when they were born?  Why do we think that repeating an answer LOUDLY AND WITH EMPHASIS will help the loved one remember this tenth time you’ve answered their same question?  Why do we think they will understand our logical explanations about circumstances when their ability to understand anything requiring organization of thought is a function forsaken long ago by the brain that they’ve been stuck with?

Because we’re human – and we want order out of chaos, and we want the one for whom we are providing care to finally “get it.”  And we want them to understand that this ain’t no cake walk for me so why aren’t you appreciating all that I do for you?

Because they don’t remember.

Life everlasting – is it a good thing?

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A recent NY Times article, On Dying After Your Time, poses many topics for discussion that must be addressed.  I knew before I even started to read the article that readers will have varying opinions on the matter of extending life beyond its appointed time to die.  These opinions will be based on ethics, biases, age of the reader, and religious beliefs, to be sure, but another factor that comes into play is the personal experience of each reader.

My father and my sister-in-law, both of whom have died from Alzheimer's in the past five years.
My father and my sister-in-law, both of whom have died from Alzheimer’s in the past five years.

If the reader has watched a loved one perilously balanced in limbo with a ravaged-by-disease body and/or mind, that reader might lean towards declaring that too much is being done to artificially prolong life.  In the past five years of my life, I have watched both my father and my sister-in-law die from Alzheimer’s.  Who they were at the end of their lives didn’t come close to resembling who they were pre-disease.  If the reader has had no experience with this aspect of life and death, that reader may feel more comfortable with the decision to throw every treatment possible at the patient with the goal of allowing that person to live as long as humanly – or scientifically – possible.

One of the issues presented in the NY Times article is the fact that as we live longer, there is an increase in the amount of chronic illnesses – a fact that certainly stands to reason.  “This rise in chronic illness should also give us pause about the idea, common to proponents of radical life extension, that we can slow aging in a way that leaves us in perfectly good health…The evolutionary theory of senescence [growing old; biological aging] can be stated as follows: while bodies are not designed to fail, neither are they designed for extended operation.”

The author of the NY Times article is an 83 year old man who closes out the piece by stating, “We are not, however, obliged to help the old become indefinitely older.  Indeed, our duty may be just the reverse: to let death have its day.”

If you haven’t yet formed an opinion on the matter of  life-extension at all costs – I encourage you to do so before it’s too late.  Life and death decisions are best made well in advance of the necessity of such decisions.

Sex in long-term care dementia units

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Bloomberg Businessweek posted a provocative article, Sex Among Dementia Patients Spurs Call for Policies, that will no doubt get the attention of professionals, and family members alike.  The attached article is well-worth the read, and I have a few comments of my own to add.

English:
(Photo credit: Wikipedia)

I acknowledge that sexual activities most likely occur in every long-term setting out there.  Consenting adults – even those with varying degrees of dementia – need touch and physical connection.  I think it’s fabulous that in spite of the limitations brought about by cognitive impairment, human beings still maintain the desire to give affection, and receive affection.  In some instances, affection may simply be expressed with hand holding or sitting next to someone, hip-to-hip.  Or perhaps a hug and a kiss are involved.  All of these actions are perfectly innocent without harm as long as all touching is consensual.

Some residents may express their need to give and receive affection with more intimate sexual activities, so if both parties are willing and able, I think intimacy is an important part of their well-being.

What about those patients who are already married to someone else?

English: Gender symbols for homosexuality (les...
(Photo credit: Wikipedia)

It takes an understanding and flexible spouse or partner to overlook the intimate activities of their cognitively impaired loved one.  The commitment made between the two parties years ago is a commitment that still resides within the deep recesses of that person’s being – but it’s a commitment that can not be drawn upon and reaffirmed because of memory impairment.  (I think it’s important to not assume that adulterous motivations are in play here.)  Marriage itself may be a concept that is no longer understood by the patient, and as is oftentimes the case – the visiting spouse exists as a friendly visitor, not the wife or husband that the patient used to know.

I can’t predict how I would feel if similar circumstances came my way in the future – my husband and I have not fallen into the cognitive impaired category – yet.  And you don’t have to agree with what I’ve stated above.  The sentiments I have provided come from my own personal beliefs, and from the perspective of having both worked in long-term care in my past, and having had family members who have lived in long-term care housing.

One last thing: As dementia care specialist Teepa Snow stated in the attached article, “No matter what you do, somebody’s going to see you as wrong.”  The issues of sex and intimacy touch many personal, religious, and ethnic biases and beliefs.  There are no completely right or completely wrong answers.  I’m simply thrilled that the long-term care industry has stopped pretending that geriatric sex isn’t happening, and that they are no longer treating it as a taboo subject.  I take comfort in that fact.

Putting a face on Alzheimer’s

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One Son, Many Voices – An Elegant Video About Alzheimer’s & Dementia.

The attached video, just 3 minutes long, showcases how very personal Alzheimer’s and other dementia are to those involved.  The toll on the patient – measurable, as you will see in this Shapiro family video.

The toll on the family – especially those caring for a member with the disease – beyond measure.  Imagine taking care of someone who has lost his or her faculties, who can no longer express themselves verbally, and who has become a shell of his former self.  Can you imagine it?

Imagine you must, because I sincerely believe that the only way people will stand up and take notice and do something about this disease, is to wear the mantle of a loved one with the disease, and/or the mantle of the beleaguered caregiver.

If you can help monetarily, please do so: www.alz.org.

If you can help within your community to relieve the stress of a caregiver with whom you are acquainted, that support is equally as needed and valuable.

Whatever you do, please do something to make a difference.

Alzheimer’s: it’ll never happen to me

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World Alzheimer’s Month (You Should Watch This Video).

The above public service announcement shines a spotlight on a disease that will affect you one way or another:

  • My father died of Alzheimer's 10/13/2007. I'm on the left - it could happen to me.
    My father died of Alzheimer’s 10/13/2007. I’m on the left – it could happen to me; my brother is on the right, it could happen to him.

    You may receive an Alzheimer’s diagnosis or I may receive an Alzheimer’s diagnosis

  • A loved one of yours may receive an Alzheimer’s diagnosis and you’ll be his or her caregiver
  • A good friend of yours; a neighbor; a coworker may receive an Alzheimer’s diagnosis

The point is – just as all of us know someone who has had, or currently has, cancer – all of us have some sort of connection to someone who has Alzheimer’s or other dementia.

None of us is immune to this disease that steals a person while their heart is still beating.