our lives have been turned upside down (1 of 3)

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This is part one of a three-part piece. Part two is herePart three is here.

November 21, 2011: Our lives have been turned upside down and inside out.

Mom’s by Alzheimer’s disease, mine by the decision to abandon my business and home, and return to Canada to care for her. It’s late November 2011; I’ve been back for three weeks. My bags are finally unpacked. Mom lives in rural Quebec eight miles from the nearest town. I left my friends and community on the other side of the world to be with her; I have no safety net. I also have virtually no support from my brother who was in business with Mom for years and lives a few miles down the road. In fact, he and I are on the cusp of war over Mom’s care.

When I arrived at the end of October I discovered wheels in motion to have her placed in a facility, something she explicitly said she did not want. My return threw a wrench in the placement works and deepened the divide between myself and my only other sibling. It’s not pretty. Besides the family conflict, there are other challenges. I am ill prepared and poorly equipped for the caregiving task at hand. I have no training, and no natural caregiving skills to speak of. Being childless by choice is both a handicap and a blessing. It means I don’t have any parenting experience to draw on. It also means I’m unencumbered by a family of my own and thus free to devote myself to Mom’s care.

My understanding of Alzheimer’s disease is limited, so is my access to resources. I’ve read a handful of books (Dancing with Rose: Finding Life in AlzheimersThe 36-Hour DayThe Majesty of Your Loving; A Couple’s Journey Through Alzheimer’s, and Still Alice), and done some online research, but I’ve barely scratched the surface. I have a lot to learn. I am like hundreds of thousands of people worldwide who find themselves thrown into the caregiving deep end without swimming lessons or water wings. I lack most of what it takes to stay afloat; there’s a substantial risk I’ll drown. But it’s not all doom and gloom. I have a clear goal, lots of courage and unmatched determination. I want to do whatever I can to alleviate Mom’s suffering and make her life as joyful as possible for as long as possible.

Fortunately, Mom has the financial resources she needs to have the care she deserves; many others do not. More important than money perhaps are perseverance and strength, we have good measures of both. I also have an untapped wellspring of patience and compassion of which I am becoming increasingly aware and for which I’m eternally grateful. Stress and anxiety top the heap of our daily struggles, but Mom and I have begun to settle into a routine, or as much of a one as we can under the circumstances.

The best bit is I’m surprised to find inherent joy in performing simple acts of service. This is a huge gift. The prognosis? I think we can make it. If not, we’ll die trying.

This is part one of a three-part piece. Part two is herePart three is here.

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17 Comments

  1. Anne Marie Abraham on

    Hi Susan. I also have been following your story of Alzeimers. I lost my mother last year to dementia and although I stayed in the UAE, we went thru much the same. I was struck how difficult it is to maintain the dignity, deal with the mutual embarrassment you speak of in Part 3, and yet deal with essentially a return to child care. And yes, families torn asunder. Really difficult. Thank you for sharing so much, bless you and take it easy on yourself when you can’t do any more.

    • Thanks Anne Marie, blogging is kind of strange in that one puts one’s story out there with no idea who is following, reading, listening. It’s always great to get comments and feedback – thanks so much for yours and for sharing that you have some of the same struggles. I am learning to be easier on myself and yet I’m still learning so much… <3

  2. Dear Susan, I have been following this story, your mother’s Alzheimer’s and your various posts, for some time now, and have been meaning to write and tell you how terrific it is. The first one I read was about your mother’s friend, and their singing together. I watched the clip and cried.

    I want to thank you for writing,and tracking this honest, moving story, and sharing how it affects you and your life. I am in awe.

    Carol Denker

    • Dear Carol,

      Wow! Thanks so much for your feedback, support and kind words.

      Honestly, I never thought my life would take this direction, and it’s not something I wanted. But once I stepped into the new chapter, I had to find a way to give it meaning and purpose. Now I wish had taken more daily notes, but I was too busy living on a roller coaster and trying to cope. Nevertheless, I have lots of images, audio, video and a reasonably good memory on which I can draw; there’s plenty more story to come.

      Thanks for sticking with me and holding on tight.

      Susan <3

    • I’m glad you’re out there listening <3

      This still won't be the full story which I hope one day to also tell; let's see how it all evolves.

      BTW, I left a comment on your blog about creativity, but I'm not sure it stuck...Did you see a comment from me on creativity on your blog?

      Also, I subscribed, but haven't received any notifications yet...

      • I saw that you subscribed. In general I send out once a week, although I’m hoping to get back to twice a week at the beginning of the year. Did you receive the post from this week? About an unexpected thanksgiving? Let me know and if not I’ll look into it. I appreciate your comments immensely! Thought I had responded to all comments. Will have to go back and look.

  3. Hi Susan, I am as you know a devoted follower of your story and all you stand for. Keep it all coming! Much Love Rona.x

  4. our family has a parent that is suffering from dementia — some members refuse to use the name – alzheimer’s. i think you for posting this. you’re the best.

    much <3 and blessings

  5. I was unaware of how you started caring for your mom. Seems as though you’ve learned a lot and have been a huge part of her life for the past 3 years. Your story is an inspiration to others who are faced with the same situation.

    • Thanks Mike.

      The story actually goes back to 2006 when I first took her to the gerontologist to be evaluated, but I chose to start the telling of this part with my return to Canada from Dubai in autumn 2011.

      I may get back to the “prequel” sometime in the future depending on how my life evolves. It’s all unknown from day to day isn’t it? 🙂

      Thanks for your ongoing support and comments <3

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