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.

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Alzheimer’s Affects People Around the World

Their innovations include artificial intelligence systems, one of which is a “smart or talking bathroom.”  One goal is to develop techniques that will enable people with dementia or Alzheimer’s to be independent longer.

Dr. Alex Mihailidis, who is a biomedical and mechanical engineer and lead researcher at Toronto Rehab, explains, “We are using artificial intelligence to support aging-in-place so that people can remain in their homes for as long as possible.”

This computerized system, with verbal prompts,  assists the Alzheimer’s patient with simple tasks such as handwashing, turning water on and off, using a soap dispenser, and a towel.  (This is a simplified description.  The article gives you more details about this very interesting innovation which could be of great assistance for the Alzheimer’s or dementia patient and the caregiver.)

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Talking Aids to Assist Alzheimer’s Patients

1. One of my favorites was the story I wrote at Christmas time, originally published in an Australian church magazine several years ago.  I felt it has a continued message of encouragement to caregivers who can’t bring their loved one home for Christmas.  This also would apply to any holiday.  Laura’s New Home for Christmas (An Alzheimer’s Story) could live for years to inspire families caring for loved ones with this disease.

2. An Alzheimer’s Autumn brought back bittersweet memories but made me realize how much small gestures and events meant to Mother in her world that was becoming a non-functioning one. 

3. As I’ve learned more about Alzheimer’s, in my continued study of this disease since Mother’s death, I’ve often wondered, “Would I be a better Alzheimer’s caregiver today?”  I know I would have done some things differently, but I realize, too, that I did the best I could considering what I knew at the time.  It’s what we can do…our best with what we know.

4. I’ve realized the value of scrapbooking our own memories with and about our family members.  I also experinced an enjoyable time helping early Alzheimer’s patients compile scrapbook pages.  They became so animated as they looked at pictures of themselves, selected colors and stickers, and relived some of their memories.

5. Humor for the Alzhiemer’s patient and ourselves is important in our lives if we’re going to have patience with one another.  Looking at situations with laughter and putting ourselves in the patient’s world, enables us to cope.  “They better sweep up those teeth,” relates one of these situations in Mother’s world.

I hope you enjoy these selections, if you haven’t read them already, and even if you have.  May they bring you inspiration, encouragement, and courage.

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5 Favorite Alzheimer’s Notes from 2006

I don’t know if Mother knows, I thought, but I do.

I liked to see her looking attractive, with a touch of make-up, her hair styled, and wearing a pretty dress or robe.  When I would tell her, “Mother, you look so pretty,” she smiled and seemed pleased.  The staff also commented to the residents on their appearance.

This also was an activity that made the ladies feel special.  Those who could chose colors, looked at their nails, and showed them to one another.  Mother hardly ever wore nail polish before that and said she was too busy.  However, here she didn’t mind. 

You also might have fun doing your family member’s nails or giving her a facial.  Grandchildren like to be included in this, too.

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Make-Up for Alzheimer’s Patients

How true, I agreed.  We never know what they may understand when that window of lucidity that unexpectedly opens.  We think our Alzheimer’s family member is “out of it,” unable to  understand and comprehand what we’re saying.  However, Marie said she was certain her patients often had times when they responded to what they heard around them.  Perhaps they also responded in ways we don’t expect because they relate those words to something in their life we don’t know about.  Other times our words might bring comfort and pleasure.

I recall one day during the last months of Mother’s life, when she hardly ever responded to my talking with her.  I usually thought she didn’t know who I was…or that anyone was there with her.

That day the nurse was brushing her hair and Mother’s back was to me as I entered the room.  I said something to the nurse, who immediately responded, “Mary, your mother knows you’re here.  Her face brightened and she smiled when she heard your voice.”

By the time I walked around in front of Mother, her window of recognition had closed.  However, the nurse, who cared for her regularly was sure Mother had responded to a familiar voice. 

I always tried to remember that Mother unexpectedly might realize I was there.  Marie’s words reinforced this idea and validated what the nurse had said regarding Mother responding to my voice.

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Be Careful What You Say Around Alzheimer’s Patients

Poll question: What is or was your role as caregiver?

Results: 10% professional caregivers

70% family members

10% friend of family or patient

10% other

Thank you for taking time to participate.  A new poll has been posted.  Scroll down the right side of this page.

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Results of Alzheimer’s Caregivers’ Poll?

Why not give them a “gift certificate” for a day or evening out with you taking care of the Alzheimer’s patient?  Make up a card with a “certificate” for time away. 

Perhaps you can even arrange for their spouse or another family member to take the caregiver out for something special.  Or organize a gathering of some friends at a restaurant or for a show. 

Decide what the caregiver or caregivers (if husband and wife) like to do and get together with friends or other family members to arrange care for the Alzheimer’s patient. 

You may be able to do this on a periodic basis and find it’s one of the best gifts you could give…time away from caregiving for the caregiver.

*

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A Gift for the Alzheimer’s Caregiver

We had enjoyed the lovely foliage on our drive from New Hampshire, so when we arrived in mid-afternoon, I said, “Let’s take Mother for a ride.” Jim drove us on a tour of Quaker Hill, an area where my grandmother had grown up.  Amazingly Mother recognized some of the landmarks, particularly after I mentioned their names.

However, her most joyous aspect of the trip was the foliage.  She kept “oohing” and “aahing” over the spectacular colors.  We stopped so she could gather leaves.  (She often pressed these between the pages and covers of books.)  I could see that we had brought her so much pleasure, and through this, ours was increased as we journeyed the autumn countryside over winding back roads.

The next day I drove Mother to see her sister, who also had Alzheimer’s, but now lived in a nursing home.  It was 45 miles away, also through areas of colorful foliage.  She kept remarking on the colors of the leaves and began telling the story of Jack Frost who painted them.  Years ago, she enthralled us children with tales she made up about Jack Frost painting the countryside with colored leaves.

For a long time afterward, as winter swirled around the house and kept Mother inside, she would reminisce about the drives we took that autumn and the colorful foliage. 

Sometimes just small gestures will bring pleasure to an Alzheimer’s patient.  I look back and am so glad Jim and I took time to do these things with her.  The joys I remember help obliterate the frustrating times.

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An Alzheimer’s Autumn

Alzheimer’s disease results in the breakdown of the victim’s ability to communicate and leads to frustration, anger, and bewilderment.  This condition affects more than the victim.  There are ramifications within the family. 

When we cannot understand what an Alzheimer’s patient is trying to say, then we cannot understand why they’re acting as they do.  We find it difficult to understand their feelings and to express ours to them.

As our ways of communication change with the family member we’re caring for, we sometimes find communication difficult with other family members.  By everyone trying to understand what the Alzheimer’s victim is going through, perhaps we can better communicate.  If families can do this together, whether through a support group and/or reading about the disease and how it affects our loved one, perhaps they can better work together to care for them…enjoy them…bring joy to them.

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Alzheimer’s Changes the Way We Communicate

One evening Mother and I sat in the living room while I was doing some hand sewing.  Suddenly Mother glanced up at the patio door and remarked, “There are a lot of people in my store.”

Her store, I wondered.  It was years ago that she operated a country general store in another state.

“Where?” I asked.

“Over there,” she pointed.  “And they’re moving around.”

Then I noticed our reflections in the darkness of the glass.  Whenever we moved, they moved.  Somehow the movement gave Mother the impression of many people just beyond the glass on the deck.

Rather than contradict her, I simply reminisced about her storekeeping years.  It was an era she thought she was living at that moment, that day.

This was just one of the delusions Mother experienced as she journeyed through Alzheimer’s.  Fortunately she didn’t become violent, but occasionally frightened by what she thought she saw that set her imagination working or took her back in time to an unpleasant experience.

When Alzheimer’s patients develop delusions, it’s almost impossible to convince them what they’re seeing isn’t there.  So we help them cope in a number of ways:

*Divert their attention with another activity or discussion.

*See if something has upset them that day to cause this delusion.

*If delusions persist, determine there are no health problems to cause them, such as fever, dehydration, etc.

*Also with continuing delusions, check with the doctor to see if any medications the patient is taking might result in this.

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When the Alzheimer’s Patient Develops Delusions