Riding Through Autumn with Mother

One of my fondest autumn memories with Mother involved a ride over the back roads of Quaker Hill, NY, as we viewed the colorful leaves.  My husband and I made weekly trips from NH to NYS (a 275 mile journey) to care for Mother and her affairs.

When we arrived at her home this autumn afternoon, Mother, in the mid stages of Alzheimer's, suggested going for a ride.  We had just driven 6 hours, but there was still plenty of daylight and the leaves were so colorful. Also, Quaker Hill figured into my dad's family history, so I thought it would be a good time to explore this area, too. 

Mother "oohed" and "aahed" the whole trip as she admired the brilliant red, yellow, orange and bronze leaves midst the evergreens.  Sometimes it was a single tree along the road.  Other times the view consisted of a panorama spread out before us.  She talked about this ride for days afterward, even though there were other memories she couldn't pull together.

So...when I see the fabulous colors of autumn, I recall the pleasure this outing gave Mother and added a bright spot in her Alzheimer's world.

Newsletter & Quote from Richard Taylor, PhD

Richard Taylor has published another of his monthly newsletters, giving us insight into the life of someone diagnosed with Alzheimer's.  He travels and speaks around the country.

I found so poignant, this quote from Richard's newsletter: Please, just be, that is what we are trying to do, that is what we sometimes need your help to enable us to fully be who we are at the moment.

This is what I learned as a caregiver for my mom and aunt, even though they couldn't verbalize specifically what they wanted me to be.  I learned "to live in this moment in time," with Mother and Auntie and enjoy that moment...to be whomever they wanted me to be and to visit them wherever they might think they were.  I learned it could be an adventure, not one we may have wished, but one we were experiencing.

Wandering Minds and Feet of the Alzheimer's Patient

Wandering becomes a critical part of Alzheimer's and something families find difficult to cope with. 

The Alzheimer's victim's mind wanders off the topic at hand and reverts to the past or something they see or someone in the room does.  This isn't necessarily dangerous, simply very frustrating.

However, wandering feet can endanger the Alzheimer's patient.  They apparently have in their mind a destination but it isn't a practical one.  They may leave the house (or wherever they are) in all kinds of weather and in inappropriate dress.  You may find them (hopefully you or someone you know does) on a city street, in your neighborhood, in the woods, along a country road or on a busy highway.

Keeping Alzheimer's patients where you know their whereabouts becomes a serious challenge at some point in their care.

Mark Warner has some good ideas on this topic to help the caregiver, as well as the wanderer, in In Search of the Alzheimer's Wanderer: A Workbook to Protect You.

I was involved in the care of both my mom and my aunt (Mother's sister) who developed Alzheimer's and who reached the wandering stage.  They would try to (and occasionally did) leave the house in all kinds of weather when they made up their minds about reaching a particular destination.  They could not understand why you wouldn't let them.

Friends Sharing About Alzheimer's

Yesterday a friend asked me how I coped with caring for my mom who had Alzheimer's.  Her mom now is living in a nursing home and seeming to be battling the same disease.

• You cope by taking one day at a time with that person. 
• You cope by learning all you can about the disease to better understand.
• You cope by planning ahead...yes, you must consider that they won't get better, but will fall further into their Alzheimer's world.
• You give them pleasure by being whomever they wish for the day.
• You look at this as an adventure.

You find someone who has been there, with whom you can talk and share.

Alzheimer's Resource - Minding Our Elders

A very good resource for Alzheimer's caregivers, to enable them to understand their family member or patient, is Carol Bradley Bursack's web site, Minding Our Elders. As Carol describes it...Breaking the Isolation: Information and Support for Caregivers and Seniors.

Carol discusses many topics on a daily basis and offers many resources. 

She also is the author of the book Minding Our Elders: Caregivers Share Their Personal Stories.

Do you have a favoriet Alzheimer's resource that has helped you cope and to understand this disease?

Children's Approach to Alzheimer's

"I make Grandma happy," my granddaughter remarked (7-years old at the time), when someone asked why she visited when her great grandmother (my mother) didn't know her and couldn't talk well.

Kara's response made me realize I hadn't made a mistake to take Kara and her young brother on my visits to see Mother in the nursing home.  They were learning about growing older, forgetfulness, illness and being family.  Caring for one another would become part of their lives.

The youngsters enjoyed their visits.  We had various rituals that Mother enjoyed.  We shared meals or afternoon tea with her.  Kara and Alex joined in activities with the other residents.  (Mother's Alzheimer's was too advanced for her to do this now.)  They drew pictures for her and made cards.  We sang songs.

If you treat the visits as an ordinary part of life, youngsters generally won't be afraid to visit relatives in nursing and assisted living homes.  They'll show fear and reluctance mainly if the adults do. 

These may be Kara and Alex's only memories of my mother, but they'll have fond memories rather than scary or distasteful ones, just as I do.

(Image: sxc.hu)

Finding the Joy in Alzheimer's
Finding the Joy in Alzheimer's (Book II)
(I have essays in both of these books.)

Discover Glass Full of Tears

One of the very interesting and informative books for caregivers, written from a wife's viewpoint, is Glass Full of Tears, Dementia Day-By-Day by June Lund Shiplett.  Here June relates the frustrations and joys of caring for her husband as he developed dementia.

Whether your family member has Alzheimer's or some other form of dementia, June's account may help you get through each day.  You'll realize you aren't alone.

I met June when we taught at a writers' workshop and then attended a book signing for our books.  Coincidentally, I was caring for my mom, who had Alzheimer's, at the time June was promoting her book and speaking to groups.

Sharing Comfort Among Alzheimer's Caregivers

"Mary, I'm so glad we talked," Kay said.  "Now I know I'm not the only one experiencing these problems with Mom."

Even though my mom and aunt, both of whom had Alzheimer's, have passed away, I still find that sharing my experiences involving them helps to comfort others and enables others to understand the person they're caring for.  Kay has been caring for her 94 year-old mother, who now is in a nursing home, but seems to have developed Alzheimer's or some form of dementia.  Mom gets mixed up about who people are, suspects those around her of plotting against her, and in general becoming a different person from the one they've known all their lives.

Kay's talk with me seemed to reassure her that what she and her mom were experiencing was "normal" in the circumstances.

So many people don't want to talk about their experiences while caring for a loved one with Alzheimer's.  They want to put it all behind them once that person is gone.  However, if you can find the incentive to share, you just might be helping others.

Something to think about!

(In the above book, Finding the Joy in Alzheimer's, I share some of my experiences with Mother.  Other caregivers have much to share, too.)

More Posting Needed, I See

Since I'm gaining followers here at "Notes," I'd better give you some updated material.  Although my mom and aunt have passed away, I still find I should share with others in hopes of making your journey as a caregiver easier.

So...back to sharing here.  Also, I hope you'll share with me...what your needs are and how you're getting along with your caregiving.