Words from the Blog

Some of Our Favorite Caregiver Books

Written on October 21, 2011, by Ellen Potts

by Ellen Woodward Potts
Co-Author, A Pocket Guide for the Alzheimer’s Caregiver

There are lots of wonderful books out there for caregivers, but it’s hard to know which ones would be worth the read.  We have a large list of references on our resource page.  However, these books are much more inspirational reads than caregiver “how to” manuals. Unless otherwise noted, all these books are widely available from online retailers.

Edie Hand’s The Last Christmas Ride is about familial love, the basis of most caregiver relationships.  This book chronicle’s Edie’s upbringing in rural Northwest Alabama.  On the surface her life would be considered very much like “The Walton’s” or some other family show.  However, unlike the Waltons, Edie’s family had real family problems and she is very honest about those.  Her mother battled depression and her father was always at work, which left Edie, as the eldest child, to care for her 4 younger siblings from a young age.  Edie is honest about all of the feelings she has as a caregiver (guilt, anger, bewilderment, etc.), but all of these are  superseded by the tremendous love she has for her family, and by her faith in God.  When one of her brothers gets cancer as a middle-aged adult, he has no one to care for him, so Edie steps in as primary caregiver to her disabled, chronically ill brother for several years.  During this time, she’s also doing her best maintain her career and be a good mother and wife, a recipe for exhaustion in anyone’s book.  If you are a caregiver, The Last Christmas Ride will validate the wide range of feelings you experience as being perfectly normal.  More than that, though, it is a tale of love that will inspire you (and would be a great Christmas gift!)  For more information about Edie, her radio and television shows, and her other books, go to http://ediehand.com

Embracing Dementia: A Call to Love by Ellen Marie Edmonds “The Heart does not get Dementia.”  This quote really summarizes Ellen Marie Edmond’s philosophy of caregiving.  Embracing Dementia: A Call to Love is the story of Ellen’s caregiving journey with her husband, Frank, who had vascular dementia.  This book will be particularly helpful for caregiver spouses, as Ellen writes about her experiences as a wife grieving the ongoing loss of her soul mate.  How Ellen copes with her grief over “losing” her husband while he is still alive, yet nurtures their relationship in new ways is most inspiring.  Ellen is a devout Catholic with a deep-seated reverence for life, a fact that sustains her throughout her journey.  Ellen has a weekly radio broadcast by the same name on EWTN which can be accessed through her website, http://embracingdementia.com (where you also can purchase her books).  In memory of her husband, Ellen began the Frank Edmonds Dementia Education and Research Fund, a 501c3 non-profit.  On Thursday, November 17th there will be a wonderful evening called “Hearts of Hope” at The Club in Birmingham, AL to benefit the Edmonds Foundation.  For more information, go to http://heartsofhope.org.

The Long Hello by Cathie Borrie is a daughter’s caregiver story, but it’s very much the opposite of most caregiver reads.  I can only describe Cathie’s interactions with her mother as a brilliant attempt to “follow” her mom anywhere she went, conversationally speaking.  The amount of patience this took was unimaginable and Cathie speaks honestly of her frustration, guilt and even anger throughout her mom’s illness.  For instance, Cathie’s brother was murdered when he was a teenager.  In her mother’s mind, Cathie’s brother is still alive.  You can imagine the difficulties this causes.  The book swaps from Cathie’s life many years before, to her current life caring for her mother.  Because it was something of a right-brained read for my left-brained self, the perspective was completely unique to me.  More than any other caregiver book, Cathie shows the need to interact with people with dementia in their world.

Almost Home – How I Lost My Mother Without Losing My Mind: A Faith Journey by Teresa Norris (available at http://teresamnorris.com) is really a journal of a daughter’s experiences in caring for her mother with Alzheimer’s disease.  It’s an honest, day by day account of the frustrations, grief, connections and humor that come along with Alzheimer’s caregiving.  Unlike the previous books I’ve mentioned, Teresa was a secondary caregiver to her mother.  Her brother and father were primary caregivers, while Teresa lived in a neighboring state.  The book touches on the difficulties caused by this secondary relationship, along with the guilt.  As the title implies, Teresa’s faith played a large role in helping her keep her sanity through this process.

Learning to Speak Alzheimer’s by Joanne Koenig Coste is, quite honestly, my favorite “how to” caregiver book, but it’s couched in terms of Coste’s story.  When Coste’s husband was in his early 40’s and she was pregnant with their fourth child, he got Alzheimer’s disease.  It was the early 1970s and there were no resources, no Alzheimer’s Association, no books, nothing.  She basically had to develop her own caregiving methods.  If you can imagine trying to keep a toddler and a grown man with early onset Alzheimer’s from wandering out of the house and getting into traffic, this was her world.  She developed an entire theory of “Habilitation” therapy and has implemented it in facilities throughout the country with great success.  Her methods will work for you, too!

For more resources, please see our resource page at http://dementiadynamics.com/resources/.

Book Review

Written on October 12, 2011, by Ellen Potts

The Sickle’s Compass: A Novel of Love, War and Alzheimer’s Disease
by Stephen Woodfin

In his book, The Sickle’s Compass:  A Novel of Love, War and Alzheimer’s Disease, Stephen Woodfin explores the world of Woody, a World War II veteran with Alzheimer’s disease, and his family.  Woody is prone to that most dangerous issue associated with Alzheimer’s disease —  wandering — and wander he does.  His adventures take him from Texas to Kentucky to the Florida panhandle’s Gulf Coast, and points in between.  Along with these adventures come the dangers you would expect and many you would not.  Woodfin himself obviously has an excellent working knowledge of the areas about which he writes, most of which I also know well.  As a lifelong Alabamian, I can say that his characterizations of Southerners are humorous and spot on.  If you’re from the South, you KNOW people like this.  If you’re not, you get a great window on some salty Southerners.  Either way, these folks will make your smile.  On the surface the book is a great read, a real page-turner.  I would recommend it on that alone, as I enjoy a good read as much as anyone else.

However, the book is not just a good “surface” read.  Stephen Woodfin’s mother had Alzheimer’s disease, so he is heart-breakingly familiar with the difficulties caregivers face.  He weaves these with great expertise into the plotline.  Perhaps more importantly, Woodfin uses his background as an attorney to reveal the inadequacies of our legal system in dealing with people with Alzheimer’s disease and other forms of dementia.  When a person with Alzheimer’s commits a crime, is he responsible?  “Of course not” sounds like the obvious answer, but there are stories in the news all the time of people with Alzheimer’s disease assaulting someone and being arrested, stealing something and being arrested, etc.  The legal system does not have the structure to deal with these ever-more-common situations.  These very real issues are part of the story Woodfin writes with such dexterity as Woody and his family travel throughout the South.

The very end of the book is bittersweet, as it must be given Woody’s Alzheimer’s disease.  The climax of the action is a little implausible, but then, it is a work of fiction and a little implausibility never hurt anyone.  I thoroughly enjoyed The Sickle’s Compass and highly recommend it.

 

Calling All Caregivers

Written on October 4, 2011, by Ellen Potts

by Ellen Woodward Potts
Co-Author, A Pocket Guide for the Alzheimer’s Caregiver

First, there is the primary caregiver, the person who has responsibility for the well-being of the person with dementia.  Often, this is the spouse or an adult child or the person, but it also can be another family member or friend.  This person makes all or most of the decisions, although others may help in this process.

Next, comes the secondary caregiver.  These are usually other family members, sometimes friends, who have an interest in the well-being of the person with dementia.

The quality of the relationship between these people depends largely on the people involved and the way they choose to interact.  Each side has responsibilities and if everyone understands these, the relationship can be very supportive and positive.  If not, the relationship between these people can be awful.  As with so much else in life, it all depends on how you treat the other person.

Friends and loved ones often ask primary caregivers, “What can I do to help you?”  Too often, the answer is, “Nothing at all!  We’re just fine. Really.”   If you are the primary caregiver, you cannot say this and expect your loved ones to know how to help you.

You must tell your family and friends what you need.  The help you need may be the person’s time:  “I need a break every week.  If one of you could come stay with your mother for 4 hours every Saturday while I go to the grocery and get away for a while, that would be very helpful.”  Or, “I can’t keep up with the housework and care for your father.  I need you to clean my house once a month or stay with your father while I clean it.” It may be that you need financial help:  “For me to continue to care for our sister at home, I will need to hire sitters at night.  If you could give me $50 a month toward that cost, I would appreciate it.”  You may even say, “I’m so tired and exhausted, I don’t know where to tell you to start.”

If you are the secondary caregiver, insist on helping.  Tell the primary caregiver that you are going to help, so it might as well be something that would be helpful.  Give the primary caregiver options, “There is a dress sale at Macy’s on Saturday.  Why don’t I stay with dad while you go shop?” or “Dad, I’ll take mom to my house during the football game.”  Think of things the PRIMARY CAREGIVER would like to do and help them do these things.

Secondary caregivers (and for some reason, especially those who live out of town) are prone to criticism — of the primary caregiver, of the physician involved, of the facility where the person is living, etc.  You name it, secondary caregivers have criticized it.  As the secondary caregiver, your only job is to support the primary caregiver, not to criticize her or her choices.  If you are concerned about something, ask questions and have a conversation, but don’t criticize.  Remember that the primary caregiver is doing his or her best to survive this very difficult labor of love.  Support, not criticism, is what primary caregivers need.

Don’t Correct! Redirect!

Written on September 28, 2011, by Ellen Potts

by Ellen Woodward Potts
Co-Author, A Pocket Guide for the Alzheimer’s Caregiver
http://alzpocketguide.com

There are several universal truths about people with dementia.  One of these is that they will constantly get their facts wrong.  The knee-jerk reaction is to correct the person.  “No, Mama, Daddy’s been dead for 5 years,” or “You can’t be hungry!  You just had your breakfast!” or “You KNOW we’re going to the doctor today!  I told you less than 5 minutes ago.”

Here is another universal truth of dealing with people with dementia:  They cannot come back into your world, so you have to meet them in theirs.   There are various kinds of dementia, the most common form being Alzheimer’s disease.  As part of the disease process, people with Alzheimer’s disease can remember things that happened long ago, but not what happened today.  Think of it this way:  If the person’s brain is like a computer, all the things they did long ago are stored on the hard drive and during the early and middle stages of the disease, they can remember these things, like retrieving a document you saved a year ago.  However, the first part of the brain to be damaged is the part that saves current memories.  It’s like the “save” button on the computer doesn’t work anymore.  Therefore, it make sense that your mother with Alzheimer’s disease can remember every detail of her prom dress from 60 years ago, but not what she had for breakfast this morning.

If you understand this, you realize that there is no point in trying to correct the person.  Instead, redirect them.

“No, Mama, Daddy’s been dead for 5 years.”  People with dementia may not remember that family or friends have passed away.  If you remind them of the person’s death, it is like a new death to them with all the grief you would expect.  Instead, say something like this: “Can you tell me the story of when you and Daddy met? It’s so romantic!”

“You can’t be hungry!  You just had your breakfast!” People with dementia often forget they have eaten a meal as soon as they leave the table.  My grandfather went so far as to accuse my grandmother of starving him!  If your loved one tells you he’s hungry between meals, offer him cut fruit or raw vegetables.  These are low in calories and high in fiber and nutrition.  OR you can distract the person, “Yes, we’ll eat in a few minutes.  Until then, would you help me fold these clothes?”

Arguing is pointless.  Don’t correct!  Redirect!

I am a huge believer in what I call “distraction phrases.”  Most people with dementia have one, if only you can find it.  My father-in-law was a wanderer.  Physically, there was nothing anyone could do to keep him from leaving if he decided to leave the house.  However, he had always been very particular about his hair.  Anytime he would decide to leave, we could say, “Papa! Your hair is messed up! You should go comb it!”  Every time, this would distract him, no matter how often it was said.

The mother of a friend of mine has Alzheimer’s disease and is a devout Catholic.  Anytime my friend wishes to stop her mother from doing something, she says, “Mama, would you help me pray the Rosary?”  Every time, her mother stops whatever she is doing and prays with her daughter.

Think about what the person has always liked to do.  Is he religious?  Ask him to say a memorized prayer, quote the 23rd Psalm or sing a hymn with you.  Was she particular about her laundry?  Ask her to help you fold clothes (and always keep a basket of old clothes ready for her to fold!)  Does he have a favorite song?  Ask him to sing it with you.  If you can find your loved one’s “distraction phrase,” it can be an invaluable tool in your caregiver journey.

The Art of Searching for Personhood

Written on September 19, 2011, by Ellen Potts

by Daniel C. Potts, M.D.
Co-Author, A Pocket Guide for the Alzheimer’s Caregiver (http://alzpocketguide.com)

Step into her world.  She is still there.

Sometimes you wonder, don’t you?  If she were still the one you knew and loved, why would she look at you that way, so blankly?  How could your face and touch be so unfamiliar to her at times, when it used to be so comforting?  After all you do to care for her, why on earth would she lash out at you…why would she insult you and try to hurt you?  How could anything, even this, make her forget you?  And why does she always look for home?

You’ve tried to bring her back, to lead her by the hand to life with you again.  There are those moments, those awakenings, in which you feel you’ve broken through.  But then it returns: the drifting back into the fog of unawareness.  And the spark is doused in hopeless humidity.

Her world is sometimes one of darkness, of wandering, of isolation.  She often sees and experiences things she should recognize and know, but cannot understand them.  Warped perceptions of reality close in on her existence, at times evoking panic and fear.  She tries to escape to something she knows, something which will comfort her and give her peace.  But every door leads only to another unfamiliar room, cluttered like a pattern-less gauntlet.  Often she doesn’t even know herself, and sees within a mirror some startled stranger like the rest, another one who cannot make things well.  Her life seems like a keyless, locked door.

But yet you know some seed of her must still be there.  You see it at times, beautiful and true.  May’s rose is a still a rose in December, is it not?  Do petals-touched make the plant?  Does blossoming perfume make the flower, or something more?  Is a garden loved in winter as in spring?

How can this loved one be reached?  You know her soul’s light still burns.  Can dementia’s frozen walls be broken so that hearthside warmth of home again is known?

Alzheimer’s disease ravages memory, language, judgment, reason, intuition, and other elements of cognition to varying degrees.  This dismantling of many of the self’s cognitive elements is one of the greatest tragedies of the disorder.  With this can go the loss of realized self-worth (at least the portion based on occupation, productivity and societal identity) and dignity suffers profoundly.

Human beings need to create, to be productive, to be independent, to be loved, and to be in community with others who understand them.  They also need to be able to share their life stories and experience the life stories of others.  Alzheimer’s disease and other dementias adversely affect all of the above.  But evidence supports the idea that elements of the emotional self remain even in the condition’s advanced stages.  A kind word-spoken, a gentle touch, smiling eye contact, the sharing of a story or song, and communicating in ways that affirm people in their present condition all validate personhood and foster its expression.  And when personhood is strengthened, dementia’s hold is weakened.

The unfortunate reality is that science and medicine, despite incredible advances, cannot currently offer therapies that significantly alter the underlying disease process we call Alzheimer’s.  While disheartening, such information should act as an admonition to think “outside the box”; to make a paradigm shift in our efforts to help these individuals and improve their quality of life.  If effective prevention and cure are still futuristic goals, then shouldn’t our focus broaden toward making each moment of their lives as good as it can be? Shouldn’t we allocate all the resources needed to mend some element of humanity-broken?  If we have the tools to facilitate self-expression, creativity, communication, understanding, and restoration of dignity, shouldn’t we employ them?  And shouldn’t we use these tools to aid the telling of their life story…a vibrant, living story that might be lost to the world and to the patient themselves if not facilitated and documented?  What benefits might such efforts afford patients and care givers, as well as families and friends?  Could this be a means to “break the ice” and reach the warmth of their inner-selves?

Depersonalization of care threatens our healthcare system as much as rising costs and lack of access.  The model we have created provides no incentives for actually taking care of the core of a human being, for tuning all our senses toward their expressions of need, for administering healing therapies from the inside out, and for addressing care giver needs.  Instead we are rewarded for spending as little time as possible with patients so that we can fill our schedules, and for meeting as many “quality indicators” as possible.

One of my life mentors, Music Professor Hugh Thomas at Birmingham-Southern College, was known to stop the Concert Choir in the middle of a monumentally important phrase of choral music literature with a tearful inquiry.  “Children…” he would say, “what is the most important reason for doing what we are doing?  I will tell you: inner enrichment…the edification of the self; both ours, and that of the listener.”  Sure, I had some understanding of what he was saying back then.  But I was no more able to grasp the full meaning or importance of his statement as an 18 year old freshman than I was capable of understanding the pathos expressed in the “Qui tollis, peccata mundi” movement of Bach’s Mass in B minor (“who takes away the sins of the world”).

The innate power of art in all forms lies in its ability to meld the heart and mind of the artist with that of the observer, to call to consciousness in one human being the depth of emotion, experience, spirituality and intellect behind the creation of the artistic work.  I believe art, in all its forms, to be the purest medium of human connection, the one which most truly promotes holistic communion between individuals.  Artistic expression thus helps to bypass roadblocks to communication and community laid by dementia and other causes of cognitive impairment.  In addition, art can fulfill the human need to create and be productive.  It can even make a person “known” to others who find interaction challenging.  In this way, the arts help to strengthen the relational identity of persons with Alzheimer’s disease, at a time when their occupational and societal identities may be suffering.  Benefits of various forms of expressive arts therapy (visual art, music, drama, and bibliotherapy) include improvements in behavior, communication, sense of well-being, cognition, and social skills.  Expressive arts therapies can facilitate the telling of life stories that no longer can be conventionally told.  When such therapies are utilized as an essential element of person-centered care (care that validates the person despite the illness rather than focusing on the disease itself) dignity and perceived self-worth are promoted and positive family and care giver interactions are facilitated.  In short, healing is fostered for all.

Have those of us who are healthcare providers missed our mark to some extent?  Do we have to prescribe medications or administer cures to fulfill the Hippocratic Oath? Shouldn’t we direct more effort toward improving quality of life, restoring wholeness, promoting “purity and integrity of self,” even if this requires a change in modus operandi?  Does this not constitute healing, by definition? I believe it does, and assert the arts as a primary means that should be supported and utilized within the structure of person-centered care giving models.

Yes, indeed, she is still there.  And we must speak to her in the language of the soul.

How Can You Help A Caregiver?

Written on September 17, 2011, by Ellen Potts

by Ellen Woodward Potts
Co-author A Pocket Guide for the Alzheimer’s Caregiver

I have often seen cases, in my own family and others, where the caregiver is abandoned.  In fact, I have been very guilty of not doing enough for the caregivers I know.  If you have a friend or family member who is a caregiver, what are some things you can do to help?

The first and most important thing is to support the caregiver with your friendship.  Even if you live a far away, you can contact the caregiver regularly to check on her.  Listening is the most important gift you can give, whether in person, via phone or via e-mail.

If you live close by, offer to stay with the person who has dementia once a week for several hours, so the caregiver can have some time to herself.  In my home church, there is a longtime member, Rick, who has Alzheimer’s disease.  Rick still lives at home with his wife / primary caregiver.  Several of his friends take turns at specified times every week taking Rick to lunch, to the mall, wherever.  Rick enjoys “man time” while his wife enjoys some well-deserved respite.  As his Alzheimer’s disease progresses, Rick will enjoy the time more if he stays at home in a familiar environment and away from crowds.  For now, he enjoys getting out.  Whether Rick leaves his home with a friend or whether the friend stays with him in his home, Rick’s wife and caregiver gets a break.

What are some other ways to help?  Offer to stay with the person who has dementia for a long weekend while the caregiver goes away.  If you have the means, offer to pay for sitters, dementia daycare or other support services.  If you don’t have the means to offer financial help, or know that offer would not be welcome, offer to go to the store for the caregiver.  Make main dishes for the caregiver in two to four serving portions which can be frozen and eaten later.  Stay with the person who has dementia while the caregiver attends religious services.  Offer to clean the caregiver’s home.

One common excuse for not doing any of these things is, “I don’t relate well to people with dementia.  I never know what to say.”  Here are some ideas for you!  If you have an artistic talent, teach the person with dementia to paint.  Musical talent?  Sing or play the person’s favorite songs from their teens and twenties.  If you have no musical talent, you can listen to recordings of these songs and talk to the person about them.  People with dementia usually remember things from the distant past, but not the recent past.  Bring out the old photos and have the person tell  you about them, if he is still able.  Recite familiar poetry or scripture.  Read familiar passages from books.  Have the person help you with some type of charitable activity — making supply kits for soldiers, assembling donated school supplies, any simple task that helps the person with dementia be a productive member of society.  There are a million different things you can do.

If you take anything away from this, please take this:  Don’t abandon the caregivers and the people you know who have dementia.  They need your friendship now more than ever.

Rescuing Memories (University of Alabama Alumni Magazine, fall 2011)

Written on September 14, 2011, by Ellen Potts

Keeping Your Sense of Humor

Written on September 10, 2011, by Ellen Potts

by Ellen Woodward Potts
Co-author, A Pocket Guide for the Alzheimer’s Caregiver

I remember one Christmas dinner when Maria was about 3 and wouldn’t eat her green beans, something that had to happen before I would allow her to eat her roll.  She was sitting between me and her Papa who had Alzheimer’s disease.  After many stern reminders on my part, Maria finally ate her green beans. When she turned to ask if she could have her roll, Papa grabbed her roll and ate it before she could register a protest.  Out of the corner of her eye, she saw what he had done.  The horrified look on her face was hysterically funny.

Should I have felt guilty about laughing at this ridiculous scene?  No.

I once saw David Hyde Pierce, the star of “Frazier,” on The Tonight Show with Jay Leno.  Leno asked Pierce about his work with the Alzheimer’s Association and told him about a comedian who had made fun of people with Alzheimer’s.  I will never forget David Hyde Pierce’s answer (my summary):  There are some people who have never been touched by Alzheimer’s disease and are so blissfully ignorant that they can make fun of it.  For them, I wish them to continue in their blissful ignorance.  Then, there are the rest of us who have been so profoundly changed by Alzheimer’s disease that we realize you have to laugh to keep you sanity.

This is one of the universal truths about any type of dementia:  Both the caregiver and the person with dementia have to keep their sense of humor to keep their sanity.

When Papa ate the children’s cake and ice cream at Julie’s birthday party; when we gave my grandfather wine upon the doctor’s recommendation and he said this was the only place he’d ever been where they only gave you vinegar to drink;  when Aunt Lola said she read the National Enquirer as a supplement to the Bible; when I introduced Danny as a “good Methodist boy” to my grandmother, a good Methodist herself who had not spoken in several months, and she said, “I like boys like that!” — In all these situations, we had a choice:  Should we laugh or cry?

You have a choice, too.  When you choose laughter, you choose respite for yourself as a caregiver, you choose sanity, you choose health, and perhaps, you choose connection with your loved one.  Even in the late stages, smiles and laughter are some the few things that successfully connect with someone with dementia.

Don’t feel guilty.  Life is still to be celebrated even in the midst of tragedy.  There will always be tears.  Make sure there will always be laughter, too!

Caregiver Respite

Written on September 7, 2011, by Ellen Potts

by Ellen Woodward Potts
Co-author, A Pocket Guide for the Alzheimer’s Caregiver
alzpocketguide.com

One of the largest stresses of caregiving, whether for someone with dementia or some other type of chronic illness, is the lack of time the caregiver has to herself.  There are all kinds of reasons for this.

First and foremost, there is the sheer enormity of the task.  The more needy your loved one is, the more of your time caregiving takes.  Often, a loved one’s condition declines as time goes on, so what started as a part-time endeavor becomes something that consumes all your time.

Second, there is the caregiver “trap” that most people fall into:  “No one can take care of him better than I can.”  I call it a “trap,” but often it’s true.  No one will dedicate as much time, love, energy, and understanding to your loved one as you will.  That being said, others can take care of your loved one for several hours or even days at a time, with reasonable skill, kindness, dignity and respect.  You need a break, so that you can continue as a caregiver.

Third, there is the fact that as caregiving consumes more of your time, you have less time maintain friendships.  Also, friends and family don’t visit as often.  This is especially true if your loved one has dementia and may say or do things that make others uncomfortable.  In this situation, there are fewer calls and invitations from family and friends, so you have less opportunities to go out socially.

These three things, among others, make for a caregiver completely consumed by the task at hand, which is not healthy for the caregiver or her loved one.  With any type of chronic illness, caregiving is a marathon, not a sprint.  If you do not take time for yourself, you will not finish the race.  Often, family and friends will ask what they can do to help, but the caregiver does not take advantage of the offer.  Instead, have a short list of ways family and friends can help you — sitting with your loved one while you go out for a few hours or spending the night at your house while you get a good night’s sleep once a week.  If the person is not suited to caregiving, ask them to do something else — go to the grocery for you, clean your house, give you money toward a sitter — anything to help you get through this enormous task of caregiving that often lasts for years.

If you are a married caregiver who is not caring for a spouse, invest time in your marriage.  Often, caregiving consumes so much of the time and energy of the caregiver that the marriage falls apart.  Don’t become part of this statistic.  Talk about your role as a caregiver with your spouse and come to a mutual understanding, so that caregiving does not destroy your marriage.

Of course, when you set boundaries to keep caregiving from over-taking every bit of your life, expect to feel guilty for taking time for yourself.  This may be in your own mind, or your loved one may deliberately attempt to make you feel guilty (or some combination of the two).  The most important skill to develop as a caregiver is the ability to forgive yourself.  In most cases, the standards you set for yourself are much higher than any reasonable person would set for you.  Pace yourself, take time for yourself, invest in your marriage and / or other relationships, so that you can stay healthy.  Ultimately, you will be a much better caregiver for it.

Norman McNamara’s “Me and My Alzheimer’s”

Written on August 31, 2011, by Ellen Potts

If you really want to understand what it’s like to live with Alzheimer’s disease, I recommend you read Me and My Alzheimer’s by Norman McNamara, an Englishman in his early 50‘s who suffers from early onset Alzheimer’s disease.  The book is a series of essays taken from McNamara’s journal, but it reads more like a series of personal e-mails from a close friend who has Alzheimer’s disease.  In this book, those of us who thankfully do not have the disease get a window on the lives of those who do.  There is a wealth of wisdom for the rest of the world in this book, way too much to summarize here, but I will try to hit the high points.

“Get help early on, the earlier the better.”  McNamara is a huge advocate of Alzheimer’s medications, because he sees real improvement in his ability to think when taking them.  He also recommends learning everything you can from reputable sources about the disease process.

Those with Alzheimer’s will have good and bad days, which he describes like this, “It’s like your glasses getting steamed up bit by bit until you can’t see, but it’s happening in your mind instead of your eyes.”  He will go from knowing exactly where he is in familiar surroundings to being completely lost in familiar surroundings.  When this happens, he describes the fear as “petrifying.”  In fact, the fear and the feelings of helplessness are one of the most horrible things about the disease for him.  Sometimes, he will go into what he calls a “trance” where he does not hear or understand anything.  At other times, he describes stumbling and slurring his speech, as if he is drunk, although he has had nothing alcoholic.

Even though there is still a stigma attached to the disease, he recommends telling people.  Yes, it is hurtful when some friends and family do not call or come by anymore, but for those who do, there is more understanding.  Norm is blessed with a wonderful wife, children and grandchildren.  Much of his joy in life comes from spending time with them.

He relates that noises are strangely made much louder, so a crowded room or a television program at a normal volume level may seem deafening to him.  This adds to his confusion and level of fear.  Also in crowds, he feels as if “everything going on around me is quicker than me and I am playing catch up.”  Because of all this, simple things like shopping trips, going out to dinner, or sporting events can be very confusing and frustrating for him.

The most important thing Norman McNamara conveys in Me and My Alzheimer’s is that in his words, “I AM STILL THE SAME PERSON!!!”  He encourages all of us to treat the person with Alzheimer’s with kindness, dignity and respect, and to laugh often and long.  Smiles, hugs and encouragement are always helpful.  Look at the world through the eyes of the person with Alzheimer’s disease, seeing everything as if for the first time, and notice the beauty and the blessings.