Quality of Life

Celebrating Community

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I started this Blog over seven years ago. This is my 986th post. I recently told a blogging friend, Jill Weatherholt, that my blogging changed over the years, especially as it relates to steering clear of topics that divide, e.g., political, religious, and the like.

In my very first post on September 20, 2011, I stated that I wanted to bring some sort of encouragement and light into the lives of, not just Baby Boomers, but everyone. I wrote hundreds and hundreds of essays centered around caregiving and Alzheimer’s, reflecting on my personal experiences with my father, as well as my professional experiences working in long-term care (LTC). But I wrote on other topics as well…

Back in 2016 – a very contentious year in US politics – I made the decision to stop writing anything that would ruin someone’s day because as many bloggers will admit, having a forum to speak your mind is a heady and powerful responsibility – about which some of us have been irresponsible. Thus the reason why, on September 12, 2016, 5 years after I started this blog, I wrote this post, Good Starts With Me – Irene’s About Face.

I am a columnist for Grandparents Day Magazine, an online publication based out of Adelaide, Australia. I wrote a piece for their July 2018 issue in which I suggested we might all do well celebrating our similarities rather than allowing our differences to divide us.

Community is so very important, more important to me than ever before. I hope that along with me, you will acknowledge our differences, celebrate our right to be individuals, and look for the good that binds us, rather than the bad that tears us apart.

 

 

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Grandma and Grandpa pods

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I wrote this article five years ago and I’m posting it again today because it is one of the most viewed posts on my blog. Financial figures are five years old so current, 2018/2019 figures will be considerably higher.

I read a fabulous article in the “Home” section of today’s Seattle Times newspaper.  It’s a throwaway section that I always read before I toss it into the recycle basket.

Publicity photo of Will Geer and Ellen Corby a...
Publicity photo of Will Geer and Ellen Corby as Grandpa and Grandma Walton from the television program The Waltons. (Photo credit: Wikipedia)

All of us are getting older – there’s no cure for that other than not growing older by leaving this earth before you’re ready – so where are all of us going to live – especially Granny and Pappy who can no longer safely live on their own?

Long-term care (LTC) facilities have priced themselves out of most households’ bank accounts and the alternative solution of having grandparent sitters is cumbersome and expensive in itself.  What’s an adult child to do?  If you have space on your property to have a guest house newly built or better yet, if you’re willing to turn your sunporch or guesthouse into accommodations for mom and dad, the original outlay of funds will pay for itself because you will have avoided the need for a facility’s ultra-expensive long-term care services.

One company that makes the pods spotlighted in the Seattle Times’ article is called Home Care Suites.  Disclaimer: I am not advocating for this company’s product.  I am merely pulling information out of the article and presenting it to the reader so you can do research that applies to your situation and your budget.

The pods made by this company range in size from 256 to 588 square feet with prices ranging from $42,000 to $83,000.  This is no drop in the bucket but let’s consider the cost of facility care.  Genworth (who sells long-term care insurance) states that the average monthly fee for assisted-living (AL) was $3,300 in 2012.  I think that’s a very naive figure based on my experience of having worked in the LTC housing industry.  Maybe Genworth’s lower number is just the cost for monthly rent – but what about care services?  Cha-ching!!!  Now you’re looking at double that amount and the cost will only go higher as care needs increase.  But even at only $3,300 per month, that amounts to $158,400 for a four-year period.  See how do-able the pod concept seems now?

Many of the AL service needs are simple monitoring of a resident – tasks that you can do for your loved one: waking them up, helping them get dressed, a certain amount of medication assistance, meal provision.  Many seniors living in AL facilities don’t need the massive hands-on care of bathing assistance, toileting services, physical therapy, etc.  I know for a fact that if a family member has the time – and a little patience – they can provide these lower acuity services on their own for quite some time before securing hands-on medical care for the elder member of their household.

Skipping ahead to after Grandma and Grandpa/Mom and Dad have passed on, you now are left with an added structure on your property which you can transform back into the porch or game room of its earlier existence, or simply leave as is as a guest room that may accommodate someone else in your family.  I have to believe that your initial investment in constructing a pod is an investment that you won’t regret.  And don’t forget – the costs for such a project aren’t necessarily out of your own pocket.  Perhaps Grandma or Grandpa are willing to pull some of their savings out from underneath their mattress and contribute to the cost of this alternative living arrangement that would certainly be more attractive to them than a lengthy stint at an AL facility or nursing home.  Just saying.

The Alzheimer’s Community

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I have been closely involved in matters regarding Alzheimer’s disease and other dementia for eighteen years now: long-term care (LTC) housing, memory care, Alzheimer’s support group facilitator, and Washington State LTC Ombudsman. But it took me becoming a published author of a novel that focuses on a family’s Alzheimer’s disease experience before I finally found my Alzheimer’s community.

AlzAuthors is a group comprised of over 170 published authors (as of this writing) who have published fiction and non-fiction books reflective of their personal Alzheimer’s experience. The six members of the AlzAuthors Management Team (Team) is the Alzheimer’s community about which I speak.

The Team’s motto says it all:

We can sing a lonely song, or form a choir and create harmony.

Without exception, the authors featured on our site and each member of our Management Team had the experience of struggling with the learn-as-you-go-task of caring for someone with cognitive impairment. We all made mistakes, and we learned from them, but we also had successes, and we celebrated them.

As a recent addition to the AlzAuthors Management Team, I became even more convinced that my personal Alzheimer’s community resides within this group. The support, the kindness, the giving nature reflected within the Team is incomparable in my experience, and we are not just keeping it to ourselves. AlzAuthors is spreading their influence into numerous parts of the world…which is kinda why they asked me to join the team as their Global Outreach Coordinator. The six of us know our presence is evident in more countries than just the United States, but our imagination and passion is boundless so we have set out to become a household word in small and large communities throughout the world.

Why AlzAuthors? Because this 100% volunteer group has brought together some of the best books on Alzheimer’s and other dementia in one central location: our bookstore. We’ve categorized those books to make the personal caregivers’ or professionals’ shopping experiences an easy one with categories such as: Caring for Parents or Grandparents, Caring for Spouses or Partners, Living with Dementia, and Children and Teen books, to name a few. We know a caregiver’s “free” time is limited or non-existent, so we’ve done our best to make their shopping experience an easy one. They simply click on the cover of the book they’re interested in and they are taken directly to Amazon to make the paperback, eBook, or audiobook purchase.

We’re working hard so you don’t have to.

And finally, we understand the journey of unpaid (family & friend) caregivers because:

  • We have experienced the loss of a loved one with dementia.
  • We know the pain of being forgotten.
  • We all have witnessed decline.
  • We have provided countless hours of caregiving.
  • We know many others have experienced the same and we believe in the power of sharing those stories.

Sorrow Passes and We Remain

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I found a letter dated July 28, 1883, written by Henry James to his friend Grace Norton, in a reference book. He wrote a letter of encouragement to her as she was desolate, depressed, and determined not to live. I post portions of it here should anyone out there feel as Grace did, in need of life-saving encouragement.

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You are not isolated, verily, in such states of feeling as this – that is, in the sense that you appear to make all the misery of all mankind your own; only I have a terrible sense that you give all and receive nothing – that there is no reciprocity in your sympathy – that you have all the affliction of it and none of the returns.

I don’t know why we live, but I believe we can go on living for the reason that life is the most valuable thing we know anything about and it is therefore presumptively a great mistake to surrender it while there is any yet left in the cup.

Sorrow comes in great waves, but it rolls over us, and though it may almost smother us it leaves us on the spot and we know that if it (sorrow) is strong, we are stronger, inasmuch as it passes, and we remain.

My dear friend, you are passing through a darkness in which I myself in my ignorance see nothing but that you have been made wretchedly ill by it; but it is only a darkness, it is not an end, or the end.

Don’t think, don’t feel, any more than you can help, don’t conclude or decide – don’t do anything but wait. Everything will pass … and the tenderness of a few good people, and new opportunities, and ever so much of life, in a word, will remain.

You are marked out for success, and you must not fail. You have my tenderest affection and all my confidence.

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.

Dynamite storybook for seniors with dementia

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I was asked to write a story or two for an anthology of short, short, stories that would be read to seniors with cognitive impairment. I jumped at the opportunity. That anthology, The Mighty Ant, is now available in paperback on Amazon.

I am one of 33 contributors to this collection of short stories for seniors who suffer from dementia and other related memory or cognitive disorders. This book is the culmination of a project from editor and contributor, Jessica Bryan, who is a caregiver and advocate for caregivers. Several years ago she began to notice that her mother, who suffers from Alzheimer’s disease, lost focus and could no longer read lengthy books. Jessica began reading to her mother and found that simple, short stories were easier for her to understand. The Mighty Ant is filled with these kinds of fiction and non-fiction stories.

The proceeds from the sales of the books will be donated to a local Council on Aging. The generous contributions of authors like myself have come from all over the world. The result is a book with different perspectives, reminiscences, and tales that reflect not only local culture, but a variety of customs, ethnicities, and lifestyles.

I am honored to have my two stories titled, A Neighborly Friendship and A Sweetheart of a Story included in this collection. A Sweetheart of a Story was selected as the final story in the book because the editor felt it was the perfect selection to provide a sweet ending to the anthology. Buy a copy or ten or more for yourself and others…perhaps your local memory care community would love to include the reading of this book to their senior activity schedule! Currently only $12 for this 322-page large print storybook.

 

My sister, Mary

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It’s National Sisters Day so naturally, I need to write about my sister, Mary.

Gosh, I wish my sister and I didn’t live 765 miles away from each other; this photo expresses exactly how I feel.

We visit each other, but not often enough, and when we do visit each other, it’s just not the same. If we lived next door to each other we could pop into each other’s homes, take walks together, and talk face to face instead of by telephone.

We’re not getting any younger, nor are our husbands. Having close proximity to each other would guarantee in-person support for when life takes a toll on our bodies and minds, and let’s face it, regardless of how healthy you think you are, life happens when you least expect it. Our mother’s death, while she slept, is proof of that. So is our father’s diagnosis of Alzheimer’s disease that took his life four years later.

My sister, Mary, and I are creatives: she’s an artist (paints and such) who holds gallery events, and I’m a writer and a published author. In so many respects, Mary is just about my most ardent supporter, as I am of her. When we’re neglecting our craft, we remind each other of the passion that brought us to this place, and that what we produce needs to be in the hands of others to benefit them.

Yep, Mary is my best friend and best friends should live closer to each other so they can have a front row seat to what life sends their way. I don’t at all predict my imaginary neighborhood will ever come to pass, but what I can predict is how close Mary and I will remain on this unpredictable and impermanent journey called life.