November 16, 2015: Despite the tears and sorrow infused in passing years, I am grateful for the joy and tender moments I found, and continue to find, in the ebb and flow of the days, weeks, and months of our journey. This poem is about the changing seasons of life, experiencing sorrow, and finding joy in unexpected places. Even when the sun sets, beauty lingers in the afterglow.
in the afterglow
by punkie
in the afterglow
countless years
of laughs and tears
say yes or cry oh no!
the shell retained
a pearl remained
tied without a bow
yet joy was hidden
it rose unbidden
in daily ebbs and flows
spring came and went
fine times we spent
walking to and fro
summer bloomed
‘twas none to soon
get ready, set and grow
one season grieves
dead fallen leaves
the geese begin to go
now drink hot tea
‘tween two and three
waiting for the snow
it didn’t seem long
we sang our songs
some god controlled the show
one thing is sure
fate we endured
then cast aside our woes
we loved and shared
reached out to care
and found the afterglow
© Susan Macaulay 2013 – 2015. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.
November 16, 2018:
https://myalzheimersstory.com/2018/11/16/a-daughters-rendering-and-remembering/
November 16, 2017:
https://myalzheimersstory.com/2017/11/15/when-youre-put-behind-bars/
November 16, 2016:
https://myalzheimersstory.com/2016/11/16/the-day-our-best-wasnt-good-enough/
November 16, 2015:
https://myalzheimersstory.com/2015/11/16/joys-and-tears-these-last-three-years/
November 16, 2012:
https://myalzheimersstory.com/2012/11/16/moving-day/
#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */
My Alzheimer's Story 
For you it has been three years, for us it has been three weeks since we moved my mom to a memory care unit. And while it is devastatingly sad for all of us around her, I am convinced it is also an act of love. My mother knows on some levels and even told me once or twice she isn’t living the way she wants to, but for the most part she is making the best of it. Every time she returns to the ‘unit’ she hugs the nurses and aides as if they were long lost friends.
Being in one’s home is great, but not at the expense of the kind of care someone with Alzheimer’s needs, and certainly not at the expense of their primary care giver’s health. And that is what was happening for my mother.
It is a sad situation all the way around.
LikeLike
Heidi, I’m so sorry for all the pain you’re going through. I know this anguish, I’ve been through it too. And it doesn’t go away, but evolves into something else, or at least it has for me…
I don’t think placing someone is always an act of love. Each person’s and each family’s experience is unique. For me, it wasn’t an act of love. I had no choice because of circumstances, conditions, and barriers that had been put in place years before and were beyond my control. It was an act of self-preservation from my side, and I believe an act of greed from that of others.
I also believe it can be an act of love to care for someone in their own home, even with dementia, until the very end. It can also be an act of love to ensure they have proper care in a different kind of environment.
Further, I think that if fit and healthy family caregivers were better equipped with the skills they need to deliver care easily and relatively stress-free, people with dementia could be kept for a longer time in their own homes before being placed in some kind of care facility. I understand that’s not always possible; but I believe that in many cases placement could be averted, or at least delayed.
One thing is sure, we’re going to have to find better ways of dealing with the huge numbers of people that are going to have this disease. Either we will have to care for them in different ways, or we will have to consider options such as euthanizing so that healthcare systems are not completely decimated keeping people alive in semiconscious states for years on end.
That may sound bleak and dark, but I think that’s the reality of it. I’m fully onside with Atul Gwande and the opinions that he sets forth in Being Mortal and I’m so glad to learn you’re enjoying the book 🙂 I think it’s a brilliant piece of research and writing!
LikeLike
Never easy but done with love.
LikeLike
Thanks Michael ❤
LikeLike
Susan, my father has AD, that was diagnosed a little over 1 year ago. My Mother is the primary caregiver and insists she will take care of him at home. We visit every other weekend, as we do not live close, and Do video calls every night. He is moderate stage. I cannot convince her to bring help in the house. We watch her struggle in tears almost every day, as she mourns the person he no longer is, unable to accept how to cope in new ways. Based on your comments about in house care, how many people do you think it should really take to provide care? I worry about her health. And do you have any suggestions for how we can convince her to move forward with at least one person to come in. Currently she keeps a schedule that keeps him occupied with house chores and other activities to keep him busy, otherwise he sits and thinks, gets very confused about where he is, etc. he struggles with eating and showering as I see most do during this stage. Mom, tries to use your BANGS technique as much as possible to avoid many arguments, but he does get fixated on things and most of the time our white lies and subject changing don’t work to change his fixation. This is a very tough disease, and I agree that there are not enough support resources to help the millions of people that will try to do the same thing my Mother is.
LikeLike
Diane, you ask a bunch of questions to which there are no simple answers. However, I’m preparing a couple of posts that I think may answer some of them.
Asking for your patience… ❤
LikeLike