Care Partnering, Hope, Joy, Life & Living, Love

5 good things alzheimer’s brought me more of

150615 Mom and me

Fellow blogger Rena McDaniel ran a post entitled I’VE BEEN ROBBED! on her blog The Diary of an Alzheimer’s Caregiver in which she described the devastation Alzheimer’s disease has wrought in her life.

I know where she’s coming from; so do millions of others. I strongly believe we need to change that. We need to change the way we think, write and deal with the disease and the people who have it. After I read her piece, I challenged Rena to write a follow-up about the ways in which being a dementia caregiver has been a blessing in her life. She responded with this list of blessings which include:

“I am blessed… that everyday I don’t have to worry that she is being neglected, abused or uncared for. That I am able with the help of my wonderful husband to provide…a safe, comfortable… environment for her to relax in with no worries.”

Me too Rena! I also wrote about some of the blessings I received as a care partner to my Mom who died on August 17, 2016:

1) Time

Had Mom not developed dementia, I likely would have stayed overseas for several more years. On my return to Canada, I would probably would have chosen to live in another part of the country, further away from her, somewhere far to the east or west. Because of her illness, I spent about three months a year with her from 2005 to 2011. I lived with her 24/7 in her own home for a year (2011/12) and saw her virtually every day after she moved into a nursing home in November 2012.

Dementia gave us the priceless gift of time. I’m grateful to destiny for this thing that was meant to be.

 

2) Depth

Many people experience dementia as the gradual and painful loss of someone they love. In fact, Alzheimer’s disease is often described as “the long goodbye.”

For me, it was a long hello. It afforded me the chance to more fully understand who my mother was as a person. I saw it as a peeling a way of layers to reveal the essence of someone I’d known my entire life and who I grew to know in a different way. Our decade together from 2006 to 2016 gave me the opportunity to know her better than I ever would have otherwise.

Diving deep into our relationship has been scary, rewarding and unexpected.

 

3) Healing

In the process of being her care partner and understanding her better, I was also been able to explore aspects of our relationship that were hurtful and harmful to me. I found ways to let go of those parts and to grow others that better served my higher self and I hope hers as well. I feel extraordinarily fortunate to have cleared negative feelings from my side of our relationship before Mom left this world.

We had some amazing conversations and incredible experiences together. Many of them profoundly touched my heart.

 

4) Practice

Living “in the now” gets a lot of lip service. Living with someone who lived with dementia forced me to practice the principles of being aware in ways I had never done before. Dementia has no past, present or future. It is this second, this minute, this moment in time. There are no yesterdays or tomorrows; there is only today. Now is it. No more, no less. The practice of being more present in pain as well as joy is a great gift. It creates a deeper connection with self and the universe.

 

5) Opportunity

The experience and the process I went through with Mom taught me a multitude of new things about dementia, music, compassion, conflict, communication and more. Had I known in 2006 what I do now, I would have done things differently. On the other hand, I now have a huge opportunity to help others do better than I did.

I can take what I’ve learned and use it to reduce others’ suffering. I can contribute to the pioneering movement to change the way we engage people who live with dementia. All of these things are great gifts, and I have still more to share — stay tuned.

In the meantime, take a look a Rena’s post to see how she’s been blessed in different ways than I have been.

 

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Poetry

we too are one

infinity symbol cropped and chromed

This poem wrote itself in a few minutes, as some do. Others take what feels like an eternity to be born as they cut, scratch and bleed themselves into life.

The choice of image was both accidental and deliberate; it is the infinity symbol, sometimes also called the lemniscate, to which I applied a “chrome” effect using photoshop that makes it look, at least to me, like an otherworldly guise from a masquerade ball.

In case you’re wondering, the spelling of “too” is also accidental, deliberate and perfect.

Finally, I firmly believe we remain spiritually connected to the ones we love whether they recognize us in this world or not.

we too are one

by punkie

i hope i will  remember you and

the look on your face
when you spot me
across the table
your fingers
fluttering
your mind
trying to find
my file amidst all
the others in disarray

i hope i will remember you when

you held my hand tho you
could not quite grasp
who i was or am in
the moments of
time i want
to capture
and embed
somewhere safe
and secure like a life
should be but clearly is not

i hope i will remember you as

the feeling i had when you
looked up and finally saw
the me you knew, then:
“are you my baby?”
you asked and
i said “yes”
freely after
denying it hard
for solitary and tender
years as i struggled to be
more separate when actually
we never can be discrete, can we?

perhaps that’s why i hope i will remember you

even as this broken heart mourns that one
day i won’t, and while you have let me
go we remain so entwined that our
living souls are at once together /
apart in ways i can’t fathom but
which cause me curiously to
gnaw on the mystery of
flesh and blood and
death and dying
knowing both
you and i
always
were
one

 

 

© Susan Macaulay 2016. 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.

https://myalzheimersstory.com/2018/09/15/ascendants-awakening-to-where-and-whom-we-came-from/

https://myalzheimersstory.com/2016/12/14/missing-you/

https://myalzheimersstory.com/2016/08/20/dying-with-my-mom/

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Life & Living, Poetry, Spirituality

7 poems to share because they’re there

women writing treated

 

I write because I must. But not always about my journey as a dementia care partner or to advocated for better care. Sometimes I write about other aspects of my life, and sometimes that writing takes the form of poetry, which I first began experimenting with in late 2012.

Here are links to seven pieces posted on my personal blog amazing susan, which I invite you to follow if you find it of interest.

Enjoy!
Continue reading “7 poems to share because they’re there”

Life & Living, Love, Poetry, Spirituality

some gods write plans

sunset painterly w logo

This poem demanded to be heard after I listened to a long-ago telephone conversation with a familiar refrain:

“When are you coming home? I can’t wait to see you.”

Both dementia and life make us all want to go home in one way or another.

destiny

a poem by punkie

download the past
the die is cast
brave souls get torn apart

i hear your voice
there’s little choice
it echoes in my heart

come home you say
to laugh and play
create a brand new start

walk down the road
where love once flowed
see skies that look like art

we’ll pay the price
and roll the dice
believe in dreams sweet tart

before too long
forget the songs
whose ends aren’t ours to chart

some gods write plans
in shifting sands
and grant us small bit parts

yet still we give
these lives to live
our blood, our tears, our hearts

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

These pieces explore similar themes:

 

© 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.

If you like what you’ve read, why not subscribe to my free updates?

Joy, Life & Living, Love, Memories, Poetry

joys and tears throughout the years

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/

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Care Partnering, Challenges & Solutions, Life & Living, Memories

still getting on with it

Night flight to London 2

 

October 22, 2015: Four years ago today I took my last night flight to London. Actually it was Frankfurt, but it could have been London. Frankfurt is home to one of my favourite international hotels, the Gravenbruch Kempinski, where I usually stayed for a couple of nights on my twice yearly back- and-forth trips to be with Mom. But four years ago I was on my way to my family “home” for good. My plan was to stay with Mom and take care of her for a year and then go somewhere else and restart my life. Things didn’t turn out that way.

I didn’t want to be an Alzheimer’s caregiver. I would’ve much rather continued my life as a businesswoman and entrepreneur residing in an exotic place on the other side of the world. I loved my work, the UAE, the travel, my freedom, and my big fat wonderful life. I had no desire to come back to live in rural Canada and do something I felt imminently unqualified to do. My caregiving skills were nonexistent, I’d never even had children to practice on, and what I knew about dementia in general and Alzheimer’s disease in particular could have fit in a thimble. But my mother was sick, she wasn’t getting the care I felt she needed and deserved, and I was compelled to make the decision I did.

I dried my tears, said “goodbye Dubai,” and got on with it. Four years later many things save one have changed: I’m still getting on with it for all the same reasons. There have been joys and healing, trials and tribulations. The journey hasn’t gotten any easier; in some ways it’s harder than it’s ever been. I’m the kind of person that must do the right thing when I see something wrong.

So I guess it was meant to be.

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Challenges & Solutions, Family, Life & Living, Love, Memories

some things are meant to be

Destiny in the palm of my hand 2
Destiny is tattooed in the palm of my hand…

On January 1, 2005, my ex-husband and I officially separated. I still feel sad about that.

We married on January 9, 1993, after having lived together for about seven years. He’s a great guy, and I was crazy about him. We were a partnership for almost 20 years in total, most of it amazing. We laughed, cried and partied. We traveled the world. We shared joys and sorrows. We created an abundant life full of interesting people, rewarding work, and intimate moments. We danced often. We rarely fought.

In January 2003, I suggested we renew our vows to mark our tenth wedding anniversary. I was as in love with him then as I had been on the frosty day we married a decade earlier. “Nah,” he said. “What for?” Over the next two years our marriage crumbled for reasons neither of us understood. I asked him to go for counselling with me. He declined.

I couldn’t fix whatever was wrong with us by myself. Had he acceded to my requests, I believe we would still be together. But he didn’t, and we’re not. When we split up, people were shocked because we were such a “great couple.” I was shocked too, and devastated. But splitting up, agonizing though it was, freed me to do things I never would have done had he and I stayed together – among them was caring in a special way for Mom.

From the time we moved overseas in 1993, my ex and I spent four to six weeks each summer with Mom at her home in Quebec’s Eastern Townships. We could do that because of the extended holidays afforded by his work, and the fact that I had my own business. After he and I separated in 2005, I returned to Canada to be with Mom for four to six weeks at Christmas in addition to the time I spent each summer. Essentially, I lived with her for a quarter of the year for the next six years. I couldn’t have done that had I still been married.

In 2011, I returned to Canada for good to care for Mom 24/7.  On November 16, 2012, Mom was placed in a nursing home. I saw her virtually every day after that until she died on Wednesday, August 17, 2016. I was free to choose to remain close to her because I had no other attachments or commitments. I was by her side, holding her hand, when she drew her last breath. None of that would have been possible if I had still been married.

The decade-long journey as Mom’s care partner was a tortuous, joyful, and painful roller coaster of emotions, challenges, loss, and healing none of which I would have experienced had my marriage not ended. I think about that a lot. I wonder about destiny, the Chinese characters for which are tattooed on the palm of my right hand; I had that done in the summer of 2004, six months before my marriage ended.

I’ve decided some things are meant to be. Others are not. Paradoxically, I believe some things are worth fighting for. Others, not so much. I also know from experience it can be devilishly hard to distinguish between the two.

Other times it’s as crisp and clear as a fall morning or a mid-winter night.

Family, Love, Tips, tools & skills

50 ways to love your mother

Mom and I November 11, 2014.

I’d been a daughter for 60 years when I wrote the list below with the help of friends and followers. You’d think I would have been and expert at it. Nope. I was still learning. Still exploring. Still discovering what it meant to me. The previous 10 years had changed the way I thought about daughterhood.

I asked friends and followers to share what it meant to them to be a “good daughter.” The diversity of their responses reminded me how individual our paths and relationships are. Inspired by their thoughts and Paul Simon’s tune 50 Ways to Leave Your Lover, I created a list of 50 Ways to Love Your Mother.

It would seem there is no one right way to be a good daughter. Only we can be the judge of our relationships.

50 Ways to Love Your Mother

  1. be caring, sensitive, and aware
  2. do well in school, don’t get into trouble with the law, stay clean and sober, don’t “sleep around” or have children out of wedlock
  3. know your daughterly duties and responsibilities
  4. question everything and be a rebel; question nothing and be a conformist
  5. keep in contact when you’re away
  6. do all you reasonably can lovingly
  7. take care of her when she’s sick
  8. understand her humanity and your own
  9. respect her wishes
  10. respect yourself
  11. advocate for her if she can’t advocate for herself
  12. do little things for her
  13. ensure she has good food, good shelter and good clothing
  14. care for her out of love, even when it’s not easy
  15. take what she taught you and build on it to become an extension of her with your own dreams, aspirations, and desires
  16. become a beautiful friend as well as a daughter
  17. stay close by her side to help her as much as you can
  18. travel far and wide to seek and find your own fortune
  19. be a good person
  20. understand neither of you is perfect
  21. forgive her and yourself
  22. grow into the person God meant you to be
  23. follow your heart’s desire and your dreams, and never forget who birthed you
  24. make her proud
  25. stick up for yourself and defend your rights
  26. stick up for her and defend her rights
  27. follow in her footsteps, replicate her life
  28. avoid making the same mistakes she did, lead a life unlike any she would have dreamed possible
  29. do stuff with her that brings her joy and pleasure
  30. protect yourself, even from her if need be
  31. know when to walk to away and know when to stay
  32. practice patience; practice more patience
  33. give her love and support when she needs it
  34. visit her regularly and spend quality time with her
  35. conquer your  fears
  36. share your joys and sorrows, laugh and cry with her
  37. speak your mind
  38. heal your wounds
  39. listen, listen, listen to her
  40. think, think, think for yourself
  41. see and appreciate her for who she is
  42. love yourself because of yourself and despite yourself
  43. be loyal and compassionate
  44. eat sensibly, call home and drive carefully
  45. be your own person; have your own life
  46. be a good girl; be a bad girl
  47. live purposefully and do your best
  48. get up and keep going after you fall or fail
  49. hold her hand when you cross the road
  50. tell great, funny and touching stories at her funeral

This is by no means an exhaustive list. What would your mother’s list for you look like? What would your list for your daughter(s) look like?

Thanks to these daughters who collectively have about 1,000 years’ experience as such for sharing their thoughts with me:

Sally M, Belinda B., Joan L., Tami Beth L., Alice J.D.Y., Mona N. Rosario V.B. Wyld H., Kathleen M., Sheila S., Helen J. M., Mary M., Joan L., Kathy B., Glenna C., Suzette S., Edith R., British D.S., Alice J. D. Y., Jan R., Kim A. S., Denise A., Siempre M., Stephanie R. J., Alison R., Rebecca B., Beverly D., Suzette S., Sally M., Kathy B., Debie O., Carolyn T., Molly C-K.

Thanks to Tami Beth L. for this particularly touching story. And oh yeah, thanks also to Paul Simon for helping us in our struggle to be free 🙂

https://myalzheimersstory.com/2015/11/16/joys-and-tears-these-last-three-years/

https://myalzheimersstory.com/2018/11/16/a-daughters-rendering-and-remembering/

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