Another Way of Understanding Alzheimer’s

The Never Never Land

 Grace Kearney of Baltimore, Maryland is the grand prize winner of the 2012 AFA Teens for the Alzheimer’s Awareness College Scholarship.  Recently she contributed the essay she submitted as part of the competition to Care Advantage magazine, a free publication for caregivers of people with AD and related disorders.  You can contact the magazine at: info@alzfdn.org.  Their website is http://www.afacareadvatage.org.  The magazine is published quarterly.

The topic of the essay was to be a reflection on how Alzheimer’s disease has impacted the applicant’s life, family or community.  Kearny wrote the essay after spending three years as a research assistant at Johns Hopkins Hospital in the Department of Geriatric Psychiatry.  As part of the research practicum course at her high school, each student has the opportunity to find a mentor at a nearby research institute and complete an independent research project throughout their junior and senior years of high school.  Kearney plans to attend Stanford University in Palo Alto, CA in the fall and hopes to become a physician specializing in Geriatrics.

In her essay, Kearney described observing a nurse administering a diagnostic test to a new patient and compares what she learned then and later at her work at the clinic to The never, never land of Alice in Wonderland in Through the Looking Glass.

The nurse asked the man, “Where are we today, Mr. Perkins?”*

“Appling, Georgia.  I wouldn’t dream of leaving.”

“What day of the week is it?”

“Tuesday.”

“What day was it yesterday?”

“Tuesday.”

She thought of the Red Queen’s words: “Now here, we mostly have days and nights two or three at a time, and sometimes in the winter we take as many as five nights together—for warmth, you know.”  Later, Kearney says it hit her that this is not a fictional character speaking; it is a person, one for whom multiple Tuesdays is reality.  “Like the guests at the Mad Hatter’s tea party, Mr. Perkins is trapped in time, trapped in an inner world that clashes with his surroundings, yet he is not aware of the dissonance.”

Her insight is remarkable.  She says that gradually she came to understand the world inside each patient’s mind is as legitimate as the world inside hers—that our interior reality is the only on that matters.

When Mr. Perkins returns to the clinic six months later, Kearney does not attempt to bring him to Baltimore, but instead, she travels with him to Georgia.  When he asked her to close the windows, because “the flies are ruthless this time of year,” she does it, because she knows that the flies are as real to him as the Baltimore heat is to her.  In doing so, she accomplishes what she as an eight-year old reading Through the Looking glass could not do;  she manages to join his tea party.

Kearney wrote about what she leaned working in that geriatric clinic.  The day she realized that the clinic receptionist who had snapped at her was the wife of a dementia patient, she learned compassion.  She said you never know what sort of pain a person is concealing behind their “plastered” smile.  She learned patience when she had a conversation with a man who needed several reminders to keep his shoes on and his shirt buttoned.  She said that Alzheimer’s patients may often seem and stubborn and confused as young children, but they prove invaluable source of wisdom if you only pause to listen.

But, most importantly for one about to pursue a career in medicine, she said, she learned that caring for those with Alzheimer’s is not about ridding them of their disease, but helping them live in a way that is dignified and graceful until the very end.

In the course of her visits to the geriatric clinic, there was one phrase that she heard more often than any other.  When patients were asked for their most fervent desire, she heard again and again, “I just want to go home.”  Kearney said that a doctor’s main object for these patients should be to find that place where a patient can feel at home, and he or she should do everything possible to help patients get there.  A worthy goal for all of us entrusted with the care of dementia patients.

* A Fictitious name is used to protect privacy.

Conversation Starters

Sometimes You Just Don’t Know What to Talk About

The other day I was talking with someone who was finding it hard to get a conversation going with a person with Alzheimer’s disease.  I told her about a group of ladies at an assisted living all of whom had significant memory loss and who used to sit around the fireplace and doze off until a group of wonderful high school girl volunteers started coming, and the Activity Director gave them a small deck of cards.  Each card had a question on it to evoke a memory and start a conversation.  I remember a sample of those questions:

• What did you used to keep in your refrigerator?  (The ladies mentioned eggs, milk, lettuce, etc.  After quite a long time listing various foods and a pause in the conversation, one quiet lady who hadn’t said anything up to that point, in a very soft and hesitant voice, said, “mold.”  Everyone just broke up laughing.)
• Baby animals often have names that are different from the grown up animals; what are some of them?

Below are some more memory-evoking questions:

1. Did the house where you grew up have a front porch?  What did you do there?
2. Did you ever ride on a train when you were growing up? What do you remember about it?
3. Did you mother or grandmother have beautiful candy dishes?  What did they look like?  What kind of candy was in them/
4. What was it like at your dinner table when you were growing up?
5. Did you go on picnics when you were young?  Where did you go?  What sort of things were “in the picnic basket?”
6. Did your family play games when you were out riding in the car?  Do you remember any of them?
7. 7.   Did you ever go to drive-in movies?  What do you remember about them?

The Importance of Taking Medications as Directed

Medication Reminders Are a Valuable Part of Care Giver Service

Taking medications as prescribed and directed by one’s physician can improve one’s well-being and ability to live independently.  Because short-term memory loss is one of the initial symptoms of Alzheimer’s disease, verbal reminders by care givers are critically important.  By taking medications at directed, you:

• Lower the chances of hospitalization.  For seniors, almost 3 of 10 hospital admissions result from incorrect use of medications.
• Avoid deterioration of health.  Many seniors (estimates range from 10-25%) either take only part of their prescription medications or forget to take them all.  Poor adherence can have serious consequences including increased discomfort, inadequate disease prevention and even death.
• Reduce the risk of falls.  Thousands of seniors suffer hip fractures each year from falls caused by medication-related issues.
• Extend the time seniors can live independently.  25% of people who enter nursing homes do so because they are not able to manage their medications when living on their own.

Your pharmacist is an excellent resource when you have questions about medications.

Minnesota Care Givers Ask What To Do With A Person With Alzheimer’s

Creative Collages–A Bit of This and a Bit of That

Many who care for loved ones with memory loss have a difficult time filling the hours of the day. As cognitive ability decreases, there seem to be fewer and fewer possibilities. Here’s one activity that not only fills the time, but helps fulfill both care recipient and care giver, and additionally, serves a few other purposes.

Making a collage is an enjoyable way to spend an afternoon. All you need is a large sheet of colored construction paper, some old magazines, glue, scissors and a felt tip pen. The idea is to make a collage with your client using pictures that are meaningful to him or her. The goal of the process is to facilitate self-expression, communication and social interaction.

To begin, just look at old magazines together. The care giver cuts out pictures that seem appealing to the care receiver. He/she tells (or points to) where he or she wants the picture pasted on the sheet. If the person is verbal and able to give you a title or caption for the picture, you write it under the picture. If not, suggest one and watch for a “yes” or “no” response (it could be a nod or a smile. Instead of writing with a felt tip pen, you could also cut out the words you need from the magazines to make captions. (They look rather like a ransom note!)

This pleasurable activity has been successfully used in skilled facilities even with patients who were barely able to communicate, who wandered, avoided eye contact, and who did not appear to recognize family members. In one instance, a wife (Mary) found that when she sat down with her husband James and began to page through a magazine in search of items to use in the collage; her husband surprisingly seemed interested. Mary would point out pictures and talk about them, and though James would often turn away, he remained seated and actually listened. Eventually he bagan touching pictures he seemed attracted to. His selections seemed to reflect elements the couple shared in their life together, and Mary would talk to him about the memories they triggered. James would sometimes remain engaged for more than an hour.

One day, Mary began to sob as she showed staff their collage. It depicted a car, a tractor, basketball players and the words, “I’m OK, I’m Alive” that seemed to leap off the top of the page. Mary tearfully explained that James kept touching these words even though she had been reluctant to cut them out for him. It was the message that helped her realize that she hadn’t lost him completely.

Besides encouraging communication and social interaction, the collage process also increases self-esteem and enables the individual with dementia to express thoughts and feelings. This often improves speech and cognitive ability, which can help reduce depression and difficult behavior.

The process is beneficial to the professional caregiver because it helps pinpoint an individual’s interests, making it easier to create discussion by finding common experiences. We are social beings and our emotional and often physical well-being depends upon our ability to interact and communicate with others. Collage communication is a simple tool that enables access to both.

–From an article in Care Advantage by Katya Luisa, Cost Rica and Los Alamos, NM., who developed the program. An exerpt from this article was included in one of the monthly newsletters sent to all Seniors’ Choice employees. For information about Senior Care in the Twin Cities of Minnesota, call 763-546-1599, or check out our website at http://www.seniorschoicemn.com

Give Me This Day

A Poem from Minnesota Nurse/Consultant Cheryl Biel’s booklet, “Give Me This Day”

When you look at me, what do you see? A person still with dignity?  For though my mind is in harm’s way, I am still me.  Give me this day.

I may not know what was for lunch.  My words may come out in a bunch.  But I still need to know from you that I am real and have value.

I feat the loss of all control.  The pain is deep within my soul.  I need your love.  I need your smile.  Your hugs and laughter go a mile.

Don’t ask me”Why? How can this be?”  I do not need your sympathy.  I’m still alive.  I am still here.  I have the right to be held dear.

My worth is not in what I was.  Or what I have of the extras.  I long for you to see inside the worth in me that I deny.

For you’re my mirror; you have control.  And from your love I can feel whole.  I cannot do the things once done, But see me as a worthy one.

Tell me I’m real, that I’m OK.  Be patient with me on this day.  For though I don’t do what I should, I would if only that I could.

Cheryl Biel wrote this inciteful poem that concludes her booklet, Give Me This Day.  It’s a wonderful compilation of gifts that a care giver can give to a person with memory loss.  Cheryl lives in Plymouth, Minnesota, and is a well-known consultant and trainer who gives those who work with the memory impaired gems of wisdom and ways to work well with dementia patients.

All new employees of Seniors’ Choice at Home receive a copy of Cheryl’s booklet as a resource when working with their clients.  For more information about Seniors’ Choice at Home, call 763-546-1599 or check out our website at:  www.seniorschoicemn.com

Dealing With Challenging Behaviors

Challenging Behaviors–There’s Usually a Reason

As dementias like Alzheimer’s disease progress, sometimes care givers are faced with behaviors that are difficult and puzzling.  There is usually a reason.  Difficulty with communication sometimes causes frustration that may lead to acting out in unexpected ways.  Alzheimer’s is a disease that actually causes destruction of brain cells.  Sometimes the  damage occurs in the part of the brain that helps us understand that there are consequences to our actions, so in some instances, people with memory loss lose their normal inhibitions and act inappropriately. 

Most of the time looking for the cause of the discomfort or frustration and eliminating it is the best way to change the behavior.  Sometimes people are too hot, too cold, hungry, tired, bored, over-stimulated, under-stimulated, dealing with clothing that is uncomfortable (too tight,) and very often dealing with some sort of pain they are unable to describe.  Grimacing, or rubbing a body part may be an indication of pain.  If all else has been checked out, talk with your physician about a regular regiman of a pain reliever like Tylenol.  In studies, this has been shown to decrease discomfort and improve the behaviors.

Or, try one of the following:

*  Tell the person what you are going to do before you do it and allow him/her enough time to process what is going to happen.

*  Give the person something to put in his/her hands to keep him/her occupied and not able to use for hitting.  This is a helpful technique, when people with memory loss are striking out during bath time–a washcloth in each hand keeps the hands in use.

*  Try to establish a routine for the things you do with the person.

*  Reinforce positive behavior.

*  Ignore or walk away from negative behavior for a short time–5 minutes.

*  Do NOT touch the person if he or she indicates he doesn’t want to be touched.  Watch the body language.  They may not indicate this with words.

*  Minimize environmental stimuli–turn off radio or TV, lower lights, use soft soothing music, take the person away from other people to a quiet room.

*  Keep you voice quiet and low.

*  Make use of a distracting pleasure you know the person enjoys–food, a walk, a cup of tea.

*  Try some aromatherapy–a very good quality of  the essential oils of Lavendar or Chamomile have calming properties.  A drop or two can be placed on a cotton ball for the person to smell.   8-10 drops of the oil can be used with 1 c. of water (along with a drop of dish detergent) in a spray bottle.  Just spray the air above and in front of the person, or place a drop or two on a cotton ball and place it in a man’s shirt pocket or on a silk flowers pinned on a lady.  Good quality essential oils can be purchased at Food Coops and Health food stores.  The best I’ve found is from a company called Young Living.  They grow their own oils without pesticides or herbicides, they distill them under the best of conditions and they meet the therapeurtic grade A standards of European oils.

If you have questions, or would like more information about Seniors’ Choice at Home, call us at 763-546-1599, or check out our website:  www.seniorschoicemn.com.  Seniors’ Choice provides practical help for seniors in Minneapolis, Minnesota and surrounding counties.

The Music and Rhyme of Poetry

Help The Person You Care for Thrive

Many care givers, family and professional, say they wish they knew of ways to better spend their time with people who have memory loss.  We would all like to have those we love thrive, not just survive.  In an earlier post, I wrote about the magic of music.  Poems, like music, seem to be a source of great enjoyment for people of all ages.  Sometimes you can simply start the line of an old familiar poem, “I think that I shall never see…” and the listener will say the next line, “A poem as lovely as a tree.”  (Trees, by Joyce Kilmer.)  Poetry, like music, may be stored in the long-term memory of a person with dementia and can be easily recalled.

In the early stages of Alzheimer’s disease, poems can help people express their own emotions.  They can help initiate conversations and reminiscing.  Later in the disease process, just the sound and rhythms can be soothing and can help a person connect with the long term memories that often remain in tact. 

There is something about the rhythms of both poetry and music that help organize the brain;  both can somehow move people into accomplishing activities of daily living (singing a song or reciting a rhythmic verse sometimes helps with reluctant bathers.)  Poetry can lift one’s spirits and feed a sense of humor.  Even though people with dementias experience significant losses, many times, a sense of humor is something the person retains.  Make use of it and provide opportunities for laughing.

Here’s a poem that might be fun after dinner on Thanksgiving Day:

I ate too much Turkey, I ate too much corn,

I ate too much pudding and pie.

I’m stuffed up with muffins and too much stuffin’

I’m progably going to die.

I piled up my plate and I ate and I ate,

But I wish I had known when to stop.

I’m so crammed with yams, sauces, gravies, and jams

That my buttons are starting to pop!

I’m full of tomatoes and mashed up potatoes

My stomach is swollen and sore,

But there’s still some dessert, so I guess it won’t hurt if

I eat just a little bit more!

–Author Unknown

 

 

It’s Not too Early to Plan for the Holidays

Give Special Consideration to Family Members with Memory Loss

It’s the middle of October and the Holidays are sneaking up on us.  For some people with memory loss and their care givers, the holidays are a challenge.  My short and sweet advice is the more advanced the memory loss, the simpler things need to be. 

If you are going to take Mom or Dad to your home for a celebration day, tone down the excitement–fewer people, shorter time, fewer things going on.  You may want to settle the person into  a smaller room, with a limited number of people around and not a lot of background noise.  As a disease like Alzheimer’s progresses, some people are reluctant to leave home–their own, an Assisted Living, or Nursing Home.  Wherever they are, the familiar is more important to them, even such a simple thing is knowing where their bathroom is and having it close by.   At some point you may want to consider bringing a small celebration to them at their residence, if they appear to be apprehensive about going out.  Consider trying to incorporate family rituals from the past.  They may not remember what happened last year, but because long term memory often is intact, something from their early married years, or even their teen years may be meaninful–singing carols, stringing cranberries and popcorn, baking cookies (even decorating ready made sugar cookies.)

Figuring out gifts for older relatives presents more challanges.  Think about consumable gifts–fruit, flowers, healthy snacks packaged in single servings, lotions made with calming essential oils like lavender or chamomile, or using a scent the person had always liked–lilac, lily of the valley, old spice–(with a promise of hand or leg massages.)  Useful gifts like a favorite newspaper or magazine subscription (my dad, at one time, logged with a pair of draft horses; he loved his subscription to the Draft Horse Journal and practically wore out each issue,) a pack of birthday , get well, sympathy and “thinking of you” cards stamped and with a promise to help address them when needed.   Gift certificates are sometimes a good choice–to the barber, the beautician, for a pedicure, for a concert, a movie, a restaurant, a play (including a promise to take them.)  Consider a calendar or picture book.  Major book stores always have bargain tables.  Look for something of special interest.  (Did your parents take a trip to Ireland?  Have dogs always played a part in his or her life?)  Make a chronological photo album.  (It’s a fun project to do with the care receiver–they can help with captions for photos and can direct where to place them on the page.  If you want to get fancy, you can even get some scrap-booking stickers to help decorate.)  As my Mom’s Alzheimer’s progressed, this photo album was a helpful tool in assessing where her memory was.  We could almost experience her memory being erased backwards.  At one point, she could not identify my father, my brother or my children, but she could name all the people in a picture of her visit to a farm in Wisconsin when she was a young teenager.  (And she felt quite pleased with herself that she could do it.)  The photo album becomes an aid to generate reminiscing, and clues to what things are still of interest to the person.

Flowers can be a wonderful gift and impetus for conversation and remembering, even grass and fall leaves–really!  My daughter brought a small inexpensive mixed bouquet from the supermarket every time she visited her grandmother.  They talked about family gardens, the colors, the feel of the various parts of the bouquet, and of course, the wonderful smells–terrific sensory stimulation.  One family brought a shoe box full of fresh grass clippings to Dad in a nursing home.  He had been the best lawn maintainer in his neighborhood.  He was pretty much bedfast, but you could tell he just loved running his hands through the grass clippings and smelling that familiar smell.   

It all boils down to “knowing the person” and adapting articles of interest to where the person is at the time (my mom was a fabulous knitter; as her Alzheimer’s progressed, she could no longer knit, but she truly enjoyed watching me knit, feeling the yarn, looking at the pattern books and remembering some of the projects she had made,)

Keep it simple!!!  

Care givers at Seniors’ Choice at Home in Minnesota, can help clients get ready for the holidays.  They can help purchase and address holiday cards, bake, help get ready and serve a small coffee party for the client’s friends, help with simple decorating and shopping.  Most of the time, errands and tasks are much more fun and doable when you have a good friend with you to help and talk about the task at hand and share good times from the past.

For more information, call Seniors’ choice at Home at 763-546-1599 or check out our website at www.seniorschoicemn.com

–Marilyn

10 Absolutes for Working with a Person with Memory Loss

These Helps Should Actually Make Life Easier for the Care Giver

*   Never ARGUE, instead AGREE

*   Never REASON, instead DIVERT

*   Never SHAME, instead DISTRACT

*   Never LECTURE, instead REASSURE

*   Never say, “I TOLD YOU SO,” instead, just REPEAT

*   Never say “YOU CAN’T,” instead say, “DO WHAT YOU CAN”

*   Never COMMAND or DEMAND, instead ASK or MODEL

*   Never CONDESCEND, instead ENCOURAGE and PRAISE

*   Never FORCE, instead REINFORCE

Seniors’ Choice at Home employees are patient and creative care givers.  They are experienced  and  creative when working with clients with memory loss. They practice the above principles and more.  For information about help for seniors in Minnesota, call Marilyn or Jim at 763-546-1599.  Check out our website at www.seniorschoicemn.com.

Hugging

Hugging is Healthy

It helps the body’s immune system; it helps depression.  It reduces stress; it induces sleep.   it’s invigorating and rejuvenating.  It has no unpleasant side affects.  Hugging is nothing less than a miracle drug.

Hugging is all-natural.  It is organic, naturally sweet, and 100% wholesome.  It contains no pesticides, no preservatives and no artificial ingredients.

Hugging is practically perfect!  There are no movable parts, no batteries to wear out, no periodic checkups, no insurance requirements and no monthly payments.  It has low-energy consumption and high-energy yield.  It is inflation-proof, non-fattening, theft-proof, non-taxable, non-polluting, and of course, fully returnable.

One other touch possibility that is very calming and soothing is gently rubbing the inner part of the forearm.  I find this most pleasing to a person with memory loss when I’m talking to him or her, holding his/her hand with my left hand and gently rubbing the inside of the forearm with my right.  Many times, older person are starved for gentle touch.  People also seem to enjoy gently shoulder rubbing.  Be sensitive to the person’s reaction; some people do not like to be touched.  Also, sometimes, people with significant dementia seem to have extremely sensitive skin, so touch is not pleasant.  It’s may be part of why some folks have such a difficult time with showering.

Seniors’ Choice at Home in Plymouth, Minnesota, helps senior in the 7-county Twin City area remain more independent at home, and at the same time, we help relieve some of the stress of family care giving.  Our homemaker/companions are especially skilled at working with persons with significant memory loss caused by dementias like Alzheimer’s disease.  For more information, check out our website at www.seniorschoicemn.com, or call us at 763-546-1599