Post from: Blisstree

Interview: Author Lauren Kessler of ‘Dancing with Rose: Finding Life in the Land of Alzheimer’s’

 In her post, Don’t Let Loved Ones with Dementia Watch the News!, Ms. Marcell gives the example of how watching the news about southern California’s fires affected her.  Then she mentions when seeing the events of 9/11 on television saddened her, but confused and alarmed her mother.

Movies and television shows will do the same…when what they see gets “twisted into their reality.”

“Put on a beautiful romance or an uplifting comedy [instead of the news], so if they incorporate what they see into their distorted reality–it will only be love and laughter,” just as her parents did after watching a Clark Cable movie.  They thought they had a job caring for his horses.

Post from: Blisstree

Don’t Let Alzheimer’s Patients See the News on TV

                   

Carol O’Dell visits us today at Alzheimer’s Notes to share her thoughts concerning Mothering Mother, a humorous and heartbreaking memoir about caring for her mother who developed Parkinson’s disease and a heart condition.  Carol faced situations many of us have in caring for a family member afflicted with Alzheimer’s.  The world of caregiving has many commonalities and brings us together to share, to cry, to laugh…and then realize, “It’s okay.  Someone else felt like this, too.  I’m not alone.”

(If you’d like to read an excerpt from Mothering Mother, visit her web site.  )

Mary Emma – People often ask me why I wrote a specific book or where I got the idea.  So I’ll ask you, Carol, why you decided to write about your experiences with your mother during her journey through Parkinson’s and yours in caregiving?

Carol – I already had begun writing and had published many short stories, essays and articles — and had two finished, but unsold novels before my mother moved in with my family and me.  I decided that writing, speaking and teaching was what I wanted to do “when I grew up.”  So, of course, my mother needed full-time care and the commitment to my writing career was tested.  It was both natural and necessary for me to write about my experience as a caregiver.  I write to understand others, myself and work out life.  I thought long and hard before choosing to become open and vulnerable with my life and the life of my family.  This was not a flippant, casual decision.

Of course, I wondered what people would think, particularly family and friends, and if my mother, even though she had passed away, would object.  In the end, I decided that my story could do more good than harm.  Being real and honest and helping others feel less alone, less heartbroken has been a privilege.  I’ve received countless emails and letters expressing reader’s relief and peace after reading Mothering Mother.  In my heart, I truly believe I made the right decision — and that my mother would have been proud.

Mary Emma – I’ve often had caregivers say they want to forget those difficult times caring for a parent or spouse.  Did you find it difficult to relive some of these memories as you wrote your book?

Carol - Yes, and no.  After you revise and edit a book more than a dozen times, the sting begins to wear off.  I found that even the revision process was carthartic.  I also found that perhaps because I had journaled the entire time, and I had looked at it as carefully as a writer, I had processed some of the pain and was able to move on with my life easier and with greater joy.  Avoiding pain and sorrow is often referred to as denial, and denial is just postponement.  Eventually, you have to take that deep breath and learn to embrace and incorporate your experiences.  I don’t say this lightly.  It wasn’t easy, but I’m grateful.

Mary Emma - Have you found since the release of your book that you’ve been introduced to people who’ve needed the help and comfort your book might provide? 

Carol - Yes!  I’ve met wonderful, wonderful people.  I’ve stood in bookstores, seminars, and support groups and laughed and cried and hugged.  I’ve heard heart-wrenching stories, and side-splitting hilarious stories, and connected with people very quickly on a very deep level because of our shared experiences.  I have so many stories – at my very first booksigning, I chatted with this one woman who had recently lost her mother to Alzheimer’s.  She bought my book, I signed it, and then after she left the store she rushed back in, her eyes filled with question and sorrow.  She asked me, “When will I start to look and feel like myself again?”

Mary Emma - How have you coped since your mother’s death?  Someone I talked with said she had a very difficult time after her mother, afflicted with Alzheimer’s, died. 

Carol – As I mentioned before, I truly believe journaling helped tremendously in the healing process.   I definitely felt lost at first, then euphoric (it’s an odd sensation, but happens after losing a loved one – all that adrenaline), then sentimental, and then after a year perhaps, I started to feel a little more steady.  Today, just over three years later, I’m amazed at how very much I’m still learning — from my mother (I swear, she “talks” and teaches me more now than she ever did — and I listen more now, for sure) and from talking with others about caregiving.  I find new revelations all the time.

Mary Emma – What would you like readers to learn or take away from Mothering Mother?

Carol – How very strong we are, as a family, in our ability to love, and as a caregiver.  That they’re not alone, that they can ask for help, that they can not only survive, but thrive in difficult and challenging times.  How very important and necessary caregiving is to society, and honored it is to be an intimate part of a loved one’s life – and how necessary all this is in their own life, and the continued maturing and transformation of self.  Some people “get” this while others are scared – to be vulnerable – to give so much of themselves, and to let others care for them.  I hope Mothering Mother gets them talking — about what they think they’ll do and  not do.  Open dialogue, that’s that I hope for.

Mary Emma  - Is there anything else you’d like to share about your book, your life, your writing?

Carol – The prequel to Mothering Mother is now under consideration at my publisher’s.  Feel free to visit www.kunati.com and drop an email to the publisher and let him know you’d love to read Said Child.  It’s about my adoption at age four, about finding where I belong, about finding my birth family at age 23, and then learning to love and accept two families.  Again, it’s about forgiveness, family, faith, and belonging.  (And it’s grittier, meatier, and in some ways, deeper than Mothering Mother. )

Carol also is running a contest in conjunction with her virtual blog tour.  There are three ways to enter.  Visit her webpage at www.mothering-mother.com for the details or e-mail carol at writecarol@comcast.com .  You won’t want to miss the opportunity.

Thank you, Carol, for visiting Alzheimer’s Notes.  You have so very much to share, as well as comfort and understanding to offer. 

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Carol O’Dell, Author of Mothering Mother, Visits Alzheimer’s Notes

However, the adventure had its positive aspects as well as its frustrating ones.  I look back, with the years separating me from the frustrations, and now see the rewards.  Time somehow has a way of filtering our the negative, if we’ll but let it.

*We learned to laugh at ourselves and circumstances we couldn’t control.

*We learned to laugh with Mother and Auntie instead of scold them.

*I learned to be two people…Jim’s wife and the woman Mother thought was stealing him from me.  She thought up various strategies to keep that woman under control.

*We learned to live in whatever moment in time Mother and Auntie were experiencing.  Those adventures gave us a sense of stepping through a time warp.

*I learned to sit with Mother in our living room and take time to watch the birds at the winter feeder.

*We even watched the people reflected in the sliding glass door (us) and wonder where they were from and why they were visiting us.  Sometimes Mother recognized them, so I “chatted” with people from her past!

Find the adventure in your life with your Alzheimer’s family member.  The frustrations, the saddness, the tiredness, the sense of being overwhelmed also will be there.  Take time to make enjoyable memories that will remain long after that person has gone and your healing has begun.

  Creating Moments of Joy for the Person with Alzheimer’s or Dementia by Jolene Brackey enables you to learn how to do this as well as journal those moments.

Post from: Blisstree

Life is an Adventure with an Alzheimer’s Patient

Monday, Sept. 10, Yvonne Russell , from Grow Your Writing Business, will write a guest post.  After I posted, Would You Like to Open a Home-Based Alzheimer’s Bookstore,  there were questions regarding the establishment of one.  So Yvonne is answering some of those in her post.

On Friday, September 14, I shall interview author Carol Odell.  She wrote the book, Mothering Mother, and is on a virtual blog tour this month. 

Incidentally, Carol is running a contest connected with her blog tour.  Learn more about this and how you can enter by visiting her web site, www.mothering-mother.com . 

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Coming this Week at Alzheimer’s Notes

I so often tried to discover what it was like inside Mother’s mind and thus understand what she was facing…where she was (what era) that day, who she thought I was, what she liked and disliked.  If we could have talked about her disease while she was able to communicate verbally, it would have helped us both.  But I didn’t know to ask her at that time and she didn’t know to tell me.

I did try to learn as much as I could about Alzheimer’s and found one book, Living in the Labyrinth, written by an Alzheimer’s victim, available at that time very helpful. 

Liz’s post, People With Alzheimer’s Disease Speak Out , got me thinking again about the

 necessity of caregivers learning from the patients, whether the caregivers are professionals or family members.

Post from: Blisstree

Learning from Alzheimer’s Patients

Joseph started writing a journal about his thoughts and experiences with his grandmother’s disease. And from this, a hand written book ‘My Grandma has Alzheimer’s too’ emerged.

The manuscript has yet to find a publisher. But if you want to see a page or two, check out the full article Helping Kids Cope.

Post from: Blisstree

11 year old writes book about Alzheimer’s Disease.

Liz has called attention to people and projects around the globe in previous posts here, such as You Are Not Alone: Alzheimer’s Stories from Around the World.  I posted about Queen Silvia of Sweden addressing Alzheimer’s at a conference in Japan.  Some of her concern stems from the fact her mother had Alzheimer’s.

So we see this disease is not merely the concern of one country or one continent.  As it gathers widespread recognition, we discover that Alzheimer’s affects people everywhere, whether they’re a patient or a caregiver. 

Researchers in many countries have been looking for causes and cures, such as that mentioned in this post on recent research.  Better and more effective care constantly is being sought.  Liz mentions how, in the Netherlands, they are attempting to help Alzheimer’s patients with care that calms them, in Snoezelen Rooms.  I even reminisced about how patients care for one another as my mom and aunt did.

As recognition of the challenges caused by Alzheimer’s becomes more widespread, I see much more awareness of how this disease affects people (victims, families, caregivers) around the world than when Mother and Auntie developed it.  To me this is a giant step forward and leads to hope that causes and cures will be discovered in future years.

Post from: Blisstree

Alzheimer’s Affects People Around the World

A – Unfortunately there isn’t an absolute answer or diagnosis of Alzheimer’s.  However, if these symptoms persist and aren’t something occasional, check with your doctor, an organization like the Alzheimer’s Association, www.alz.org  (for further information), or other Alzheimer’s specialists.

My mother at first exhibited absentmindedness which my father recognized as something different than merely forgetting.  Because I didn’t live with her and saw her about once a month at that time, I simply thought it was the forgetfulness of a very busy 80-year old woman.  (She took care of my dad who had physical disabilities, cared for her sister who had Alzheimer’s, and took are of managing their rental properties.) 

However, after my dad died and I became responsible for helping Mother, I realized this was more than occasional forgetting.  I also saw that she exhibited some of the symptoms of my aunt.  So I then consulted her doctor.

One of the most difficult realizations family members face is the fact that their loved one may have Alzheimer’s or some type of dementia.  So they tend to ignore the symptoms, even when numerous symptoms are present.

Not all forgetfulness leads to Alzheimer’s.  This book, What If It’s Not Alzheimer’s?, discusses other dementia symptoms.

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Q & A – Alzheimer’s Symptoms

I wrote this book while Mother was alive and hoped, by sharing her sister’s and her story, I could encourage others coping with Alzheimer’s in the family.  It also was a tribute to these valiant ladies, Esther Rider and Mary Place, who lives I wanted to be significant and remembered.

So I’m in the midst of working on the book to get it to my editor at Global Authors Publishers (GAPublishers) as soon as possible.

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Request for Alzheimer’s Book Update