My New Alzheimer's Blog

I'm writing a new blog about Alzheimer's, Alzheimer's News & Notes , at the Advice and Info network.  I shall discuss this malady, as well as caregiving,  and answer questions from readers.  I hope you'll find it helpful.

Do stop by Alzheimer's News &Notes and give your input. 

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.

What Would You Like to Know?

As I get back to writing here about Alzheimer's and caregiving, I'm wondering what my readers would like to know. How can I help you as you deal with Alzheimer's in a loved one? I can't make the situation go away, but perhaps I can help you understand and to encourage you as you go through each day.

Perhaps I can be someone you can share your frustrations with and help you realize you can survive.

Getting Back to Writing about Alzheimer's

Just noticed I have some followers to my blog, so I'd better get posting again! I've been busy with other blogs, one on Parenting at Blisstree, which does contain some Alzheimer's posts.

However, I'll share some more words of encouragement here at Notes from an Alzheimer's Caregiver.

Although I no longer actively care for a family member (both Mother and Auntie have passed away), I do have memories of the trials and joys and hope I can encourage others by sharing.

I also give talks on Alzheimer's and caregiving and provide information about scrapbooking and journaling activities with those experiencing memory loss.

(Image from sxc.hu)

Obama's Proposed Health Care - Euthanasia for the Elderly & Infirm?

In all the excitement over health care for all, as proposed by Barack Obama and his team of White House administrators and Congressional colleagues, will people look carefully at what it contains? Or will they blindly accept what seems like a good deal without scrutinizing the details, like refusal of treatment for the elderly and those deemed uncurable (by administrators, not doctors and medical staff)?

Check out the article at Alzheimer's Notes, Obama's New Health Care - Will It Result in Elder Neglect & Euthanasia?

March Blizzard Memories of Alzheimer's Patients

Does your Alzheimer's patient have memories of blizzards and snowstorms, either in their childhood or yours? My grandfather often told us about his experiences in the March 11th Blizzard of 1888 in New York State, when he worked on a farm. Those have become ingrained memories for me, even though I wasn't around in those days. My mom often related the stories Grandpa told of those days. Even in her Alzheimer's years, a big snow storm would set her to reminiscing.

For some reading about the catastrophic Blizzards of 1888, first in the West and then on the east coast:

City of Snow: The Great Blizzard of 1888 by Linda Oatman High.
In All Its Fury: A History of the Blizzard of January 12, 1888 by W. H. O'Gara.
Blizzard! The 1888 Whiteout by Jacqueline A. Ball.
Blizzard!: The Storm That Changed America by Jim Murphy

More recent blizzards & storms:
One to Remember: The Relentless Blizzard of March 1966 by Douglas Ramsey
Northeast Snowstorms by Louis W. Uccellini

Fiction:
Lost in the Blinded Blizzard (Hank the Cowdog) by John R. Erickson

Books About Daylight Saving Time & Spring

Discover facts and figures (the curious and the ordinary) about Spring and Daylight Saving Time

Seize the Daylight: The Curious and Contentious Story of Daylight Saving Time by David Prerau
Spring Forward: The Annual Madness of Daylight Saving Time by Michael Downing
Crafting Springtime Gifts: 25 Adorable Projects Featuring Bunnies, Chicks, Lambs & Other Springtime Favorites by Tone Finnanger
Time for Change: Setting Clocks Forward by One Hour Thorughout the Year by Mayer Hillman
The Divine Hours: Prayers for Springtime by Phyllis Tickle

Learning About Alzheimer's from Richard Taylor, Ph.D

Learning first hand what it's like to experience dementia or Alzheimer's unables us caregivers and family members to be more understanding and helpful. I often tried to realize where Mother and Auntie were coming from, what world they were living in on a particular day, what was motivating their behavior and thought processes. Putting myself into their world (at least the best I could) enabled me to be more understanding and patient...and even enjoy my foray into a time past. Hopefully this made an increasingly difficult life easier for them, too.

Richard Taylor has been diagnosed with dememtia, probably of the Alzheimer's type. His purpose now is writing and speaking to inform, help and encourage others, both victims and caregivers, as well as the general public.

Richard maintains a web site complete with videos, provides a monthly newsletter, and has written the book, Alzheimer's from the Inside Out.

I wish I'd had something like Richard's web site, blog, newsletters and videos to help me when Mother and Auntie were ill.
(Amazon image)

Valentine's Day in Alzheimer's World

Do you and your family participate in Valentine's Day festivities? Does your Alzheimer's patient join in? Does this bring back memories for them?

This was a fun family day when I was a youngster because Mother made it so. She had been a school teacher and held parties for her students. Thus, she incorporated some of these ideas into festivities for my sister, two brothers and me, even though she was a busy farm wife.

*Mother often decorated a cake with white frosting and red hearts. When we were old enough, sister and I did this for her.
*She helped us with making and addressing valentines for family members. When we were in school we had exchanges there, too.
*Mother planned a special night meal for Valentine's Day, with the cake and fruit for dessert. There was only our family...four children, Mother, Father and the hired man...but we had a joyous time.
*We made decorations to hang around the kitchen (the warmest room in our farmhouse during winter), and name cards for each place setting.

Suggestions:
The Night Before Valentine's Day (picture book)
Where Is Baby's Valentine (lift-a-flap book)
My Fuzzy Valentine (Sesame Street Board Book)
Be My Valentine, Charlie Brown (DVD)
Disney Valentine Assortment

What do you and your family do for Valentine's Day at your house?

Check Out the Giveaway at Quilting and Patchwork

Giveaways

If you're a quilter or simply like giveaways, why not stop over at Quilting and Patchwork and participate in the Giveaway of a Mini Quilt Book.? It's in progress over there.

Perhaps you're not a quilter yourself, but know of someone who would enjoy this book by Patricia Mainardi. Maybe your Alzheimer's family member is a quilter and still enjoys reminiscing about the quilts in her life.

Enjoy the Small Triumphs of Caregiving

Caregiving Triumphs

As you go through the day to day tasks and frustrations of caregiving for an Alzheimer's patient, you may not think you're experiencing triumphs. However, train yourself to look for these, write them down, and share them.

At my Alzheimer's Notes blog, some of my readers have shared theirs in the post, Enjoying the Small Triumphs of Caring for Alzheimer's Patients.

What have been some of your triumphs?

Novenber is National Alzheimer's Awareness Month

Alzheimer's Awareness

This month - November - we raise awareness of Alzheimer's disease and give recognition to all those involved - patients, caregivers, supporters, researchers and everyone who cares.

I shall be writing about this topic here and at Alzheimer's Notes, where I also blog.

What would you like to read about and learn about regarding Alzheimer's?