Monthly Archives: October 2014

The Gifts That We Share or Caring For My Parents With Alzheimer’s

In 2006 when I began to look after my father who had Alzheimer’s, I was not prepared for the journey of caregiving, and in fact, I struggled every day with its demands. I was torn between my more compassionate and loving side that wanted to “heal” my father and comfort my mother (who at the same time was struggling with her own memory issues), and my other side, my other me, that wanted to follow my own dreams (and caregiving was not one of them).

When my father died and my mother began to show obvious symptoms that she, too, had dementia problems, I made a choice: I chose to “do it better.” And once I made the momentous decision to “do it better” the second time around, everything shifted for me. Now I could see. I opened my eyes and my heart and all the lessons that I had struggled to learn while caring for my parents (in their own home) coalesced.

When I talk to other family members that have a loved one with Alzheimer’s or a dementia-related disease, some of them ask me point-blank, “What on earth can we learn from this disease?” My answer is this:

  • to love more
  • to be kind and more compassionate
  • to appreciate another’s “essence”
  • to connect with a person’s “essence” – sometimes just a simple smile and rubbing their hand connects us. Look past the symptoms, see the person.
  • to appreciate each moment, to pay attention to the moment and to savour it
  • to trust in the Universe
  • to trust in ourselves
  • to love and accept ourselves (exactly as we are)
  • to honour our body, mind and spirit
  • to appreciate our own basic abilities, such as dressing ourselves, washing ourselves, eating…all without another’s help
  • to laugh, play and engage with others
  • to write and share (when you have learned the lessons, tell others)
  • to forgive and let go of all the hurts
  • to accept our reality (what is…is)
  • to accept all others (that includes non judgment)
  • that acceptance of others leads to knowing that we are all connected
  • We are all one.

There is not a day that goes by without my expressing gratitude for the simple things in life that many of us take for granted. Life, itself! I wake each morning and say “Thank you. I’m here.”

Throughout the day I am thankful for my health, my family, my friends and my home. I try to see everything as a “gift” and as a miracle.

Walt Whitman said, “To me, every cubic inch of space is a miracle.”

When we begin to live our daily lives in gratitude, we begin to see everything as another reason to say thank you. My garden, the birds, our daily walk along the river, the wonderful personal support workers who look after my mother now, the residents in her long-term care facility…each a miracle!

In my heart and in my soul, I know without a doubt that I was supposed to be on this journey. My parents gave our family much love and support as my sister and I grew and it is now our turn to return the love and support. Caring for our parents has been an opportunity for both of us to receive so many lessons; an opportunity to grow and become more aware, more generous, stronger and more content. Throughout this on-going journey, we have learned how to love more and forgive; we have both forgiven ourselves for the decisions that we made in the past and we have let go of the guilt that we carried.  We truly recognize that we are doing the best that we can…and we are okay with that.

These are all gifts, my friends.

 

TheGiftsThatWeShare

“When you know better, you do better.” Maya Angelou

When I retired and closed my store (a children’s clothing store), I never dreamt that within a couple of months I would be caring for my parents who were coping with my father’s “sudden” onset of Alzheimer’s disease. Nor did I realize that exhaustion had exacerbated my mother’s memory “issues.” This was back in 2006 when I began my journey as a caregiver for both parents.
When my father died in 2009, we had barely returned home from his funeral when my mother, too, began her journey with Alzheimer’s. I decided, then and there, that I would “do better” as Maya Angelou often said. (Her quote is…”when you know better, you do better.”)
Since then I have written an ebook about my personal journey of caring for both parents with Alzheimer’s disease…a journey of acceptance, forgiveness, love and compassion – the many gifts that I have received and continue to receive while caring for a loved one with a dementia-related disease. Caregiving transformed me – it opened my eyes (and my heart) to a different way of accepting disease and illness – one that reminded me that when we accept our new “normal” or our new life, then, and only then, can we embrace each moment in life and find joy again in the small, in the insignificant, and in the simple things. Oh, the small, insignificant and simple moments…truly what I savour the most in life.
Since I wanted others who are new to this journey to be aware that we don’t have to “suffer” along with our loved one, that if we shift our energy to a loving, kind energy, then we can transform the journey from one of suffering and sadness to one of acceptance, kindness, and compassion. I have witnessed that our loving energy can transform a loved one’s energy. You can be a change agent! That’s what motivated me to write an ebook that I intend to be free and accessible to anyone. I want others to experience the shift – our energy, our perceptions, and our thoughts can transform those around us.
My intent is that readers will find comfort and support from my words and realize that we are all in this together.  We are all connected. Once we truly understand that we are all connected, our stress, sadness and grief can be shared by all. A lighter load!
My intent is also to dispel some of the myths about this disease; it’s a mysterious thing, the brain! And the wonder of it and its functions and dysfunctions inspire me every day that I sit with my mother and try to make sense of her stories. Sometimes the lesson is just to let go! Some days, the story has no sense. It’s just a story. Letting go is another lesson!
I also hope to dispel some of the stigma that is attached to dementia-related diseases. Most people shudder when I tell them that both my parents had Alzheimer’s. (My mother is still alive and living in a long-term care facility.) My risk of getting the disease increases because both parents had (have) it. I get that. But when I accepted my father’s disease, and then my mother’s, I accepted the Now. What is, is. I have embraced E. Tolle’s message to accept our reality and just live in the Now. And my Now is this present moment. So, no…I don’t fret about the future and my chance of getting Alzheimer’s. But I don’t ignore the facts, either. I lovingly care for my own body, mind and spirit…and I hope to blog about that, too.
At the end of the day I ask myself…Did I live my day in loving kindness? What am I grateful for? And then I say to myself something that I have been saying since my father’s death (since he appeared in my dream and said to me “Thank you.”) which is…
“I am doing the best that I can. And that is enough.”
And I say these words with kindness, loving kindness, because that is what I have learned…the greatest gift of all…loving kindness begins with me!

We “honour” our Mother at Thanksgiving and bring her home.

Last Sunday my family held Thanksgiving dinner –  my sister and her three adult children and one of my sons came home.  We love family gatherings which is the reason that my family brought my mother home for the afternoon. Now that she is in a wheelchair it is much more difficult for us to make that happen. It means that the boys (the young and strong!) carry her and her wheelchair up the front steps and into the house. Because our house is small with narrow hallways,  and our bathroom is not wheel-chair accessible, the bathroom “visit” becomes an issue! Since my mother resists any assistance from the “men,” the bathroom duty becomes my sister’s and my responsibility.  You would think after caring for my father for three years, and after all these years attending to my mother, that would be a simple task. But anyone who has cared for a loved one who has a dementia-related disease knows that this is simply not true. Bathroom duty is a fight with my mother, each and every time. She doesn’t recognize that she has a dementia and she has forgotten most elementary, basic abilities and skills; therefore, she resists our attempts to help her – she pushes us away and attempts to stand on her own, usually unsuccessfully, and hence, falls or other mishaps are the norm.

But in spite of the past (the past is no longer relevant now), each celebratory occasion or holiday you will find my sister and I ensuring that our mother comes home for the holiday meal. We do this for one reason: we honour that the very reason that we sit down and celebrate our holidays all began with our mother. She loved holidays and always cooked too much food, prepared too many desserts, and over-decorated the table. Because of our love for tradition (a tradition that my mother started), Sue and I try to bring Mom home to celebrate.

This Thanksgiving, as my sister wheeled her into the dining room and she approached the table, she let out an appreciative sigh, “Oh, Marilyn, lovely!” She especially loved the pumpkin display, but couldn’t remember the name of the vegetable. (Is a pumpkin a vegetable or fruit?) But she recognized the bouquet of simple zinnias and labelled them “pretty.”

It is moments like this that I wonder at the mystery of this disease called Alzheimer’s…she remembered that she loved flowers (she grew zinnias when I was a young child) but she couldn’t label them, or the pumpkins. But the pure delight on her face was still genuine!

During the meal she spoke aloud many times, always with the same inquiry: “When do we open the gifts?” Each time we would patiently explain that there were no gifts; gifts came at Christmas, not Thanksgiving. Finally, our kids announced, “Nanny, let’s have gifts next Thanksgiving! Your idea is a good one.” She understood that and grinned. Or, maybe she didn’t understand their words, but understood their “loving energy.”

After my mother returned to the long-term care facility that she has been residing at for two years, my husband announced that he felt that “things went well, this time.” I laughed. Yes, this was a good visit.

Once again I realized how important it is to live in the Now, and how important it is to let go of the memories of the other visits when we have brought Mom home and things did not go well. And how important it is to let go of the worrying thoughts of future visits…”What about Christmas?” (People with Alzheimer’s often get very agitated during the holiday season. There must be an energy in the air…many adult children of residents where my mother lives agree with me that our loved ones become anxious and over-stimulated. Some residents have refused to leave their rooms.)

There will come a day when our family cannot bring mom home to our house – we have too many stairs, and we depend on our sons and their strength to carry her. But in the meantime it is important to honour her as best we can. When she no longer appreciates or enjoys the homecoming because of her dementia, we will “let go” of one more tradition. And that day will come. We know that because we have learned to let go of other traditions, many times. Each time it does become easier…or maybe we have just learned to go with the flow. I hope that is the reason…because I believe that each of us is like a river – we flow gently along…or we hurdle along. To flow gently with acceptance is my daily intent.

“Trust is shorthand for going with the flow.” Marianne Williamson