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An alternate perspective

“I still love you even if I can’t tell you… I am still here and I can see you… I will always love you.”

I came across this lovely poem while perusing the Duke University Family Support Program newsletter.

 

Through The Eyes Of An Alzheimer’s Patient
By Carolyn Haynali © 2005

As I look at you I am not able to tell you how I really feel
But I want you to try to understand that I am still here
Locked in my mind are feelings that I can’t seem to let out
I see you…as you are talking to me
I see in your eyes that you expect me to respond back but I can’t
I can hear what you are saying but I can’t tell you how I feel or what I am thinking
So please look at me and see me the way I used to be
I was strong, I was laughing and I smiled and I loved you
Talk to me as if I can understand you
Because even though I can’t tell you
I do hear you, I can see you, and I can feel your touch
I still have feelings and can feel your love
and see the pain, and the sadness in your eyes
because you are not able to help me
I am still here trapped inside this body
But in my heart I have not left you
I still love you even if I can’t tell you
So remember that I can see you through my eyes
Some days it’s like a puzzle and I am trying
to fit the pieces together
There are times I am not able to
But be patient with me and look at me
Through the eyes of this disease they call Alzheimer’s
Because I am still here and I can see you and
I will always love you
___________________________________________________________________________________
Carolyn Haynali is the Founder of the Alzheimer’s Disease Caregiver’s Army.

 

 

On Dignity

Imagine for a moment that no one demanded your time this Saturday. You have no appointments, no errands. You don’t have a friend that’s moving and in need of your assistance. No grandchild looking forward to your presence at a big game. The day is yours. What would you do with yourself?

As a family caregiver—I can guess what you are thinking: “Ahhh, wouldn’t that be nice?!” But what if no one ever needed you for anything, ever again? How would you feel? Pretty useless, I would guess.

At Kemper House, we have a fundamental belief that each person is unique, has something to contribute and is to be valued, regardless of their mental or physical state.  Each person is needed, and has needs to be met.  The person living with a cognitive impairment like Alzheimer’s disease doesn’t necessarily possess the faculties any longer to socially engage or assert needs.

This belief manifested into a set of ten Guiding Principles for Kemper House. The Guiding Principles direct everyone in the company in all circumstances. These principles are reflected in day-to-day operations, decision-making, and planning for the future. In the coming weeks, I want to tell you about these principles.

The first of ten principles is Preservation of Dignity. Dignity is defined as the quality or state of being worthy, honored or esteemed. At Kemper House is means something more:

Every resident has a unique background, personality, and needs. Fulfilling basic needs of love, comfort, inclusion, occupation and identity are essential to self-worth and dignity. Residents are worthy of respect.

Simply put, while Alzheimer’s progressively lessens their abilities, each person still feels emotion, and is still capable of giving and receiving love. Each person still has value. We adapt to our residents’ needs – we don’t ask them to adapt to our needs.

Following are just a few examples of how the Kemper team works daily to preserve residents’ dignity and self-worth.

Recently, a new resident insisted on paying for his meals every day after dining. It was important to him to pay his own way. Eager to
address the man’s concern, the hospitality aide got creative. She asked the office manager to write up a little receipt marked ‘paid’ for the resident.

The next day, when the resident asked to pay his bill, the hospitality aide presented the receipt and told the resident he already paid.

This satisfied the resident’s concern! We know this resident doesn’t have to pay for meals – it’s included! But the resident either doesn’t know, or can’t remember that the hospitality aide told him the day before he doesn’t have to pay. This is just one example of how our staff 1) recognizes an issue important to a resident, and 2) resolves the issue in a dignified way.

When I was growing up, Cheers was a favorite show of my parents… you know, the place where everybody knows your name.

Doesn’t it feel good to be known? At Kemper House we make it our business to know your loved one’s story – what are their hobbies, what did they do for a living? Perhaps your mom or dad grew up on a farm, and prefers to rise with the chickens to this day. Really knowing your loved one fulfills their basic need for identity.

Your dad worked hard his whole life – it’s time for him to kick back and relax, right? Wrong! How bored, and useless, would you feel if you ‘relaxed’ all the time? If you ever noticed a resident or two setting the tables in the dining room, or dropped in for a visit to find your wife helping the office manager put together a mailing, this is the reason behind it. Occupation, or the desire to be useful and engaged, is important to everyone’s well-being—our residents are no different.

When you’re in the thick of caring for a loved one with Alzheimer’s or dementia—it’s stressful. Even if you decided to bring your loved one to a care center like Kemper House, you may not have time to read up on this disease or how to effectively interact with your loved one, let alone “find time for yourself.”

It’s my goal to impart some of the wisdom we’ve gained after caring for people with dementia for so many years. I believe that knowledge is power. And, I want to arm you with the information and tools you need to cope with this devastating disease.

Remember, we need to adapt to their needs.  Walk a mile in their shoes… how would you like to be treated?

If there is any great secret of success in life, it lies in the ability to put yourself in the other person’s place and to see things from his point of view–as well as your own.   -Henry Ford

“I love you more than Orville Redenbacher, Johnny Walker, Russell Stover or any of those guys.”

I found this little gem in The Caregiver Newsletter of the Duke Family Support Program, Duke University Bryan Alzheimer’s Disease Research Center.  Hope it makes you smile too!  Not reprinted with permission, going the ‘ask forgiveness’ route instead…

Belvedere by Margaret Toman

“Today I threw the Christians to the lions but I got away just in time,” my mother announces as I pull into the parking lot at Applebee’s.  Later I learn that she watched “Ben Hur” at adult daycare but today I don’t know that.   I respond carefully, focusing on her lifelong appetite for grilled salmon. “I’m so glad you got away,” I say, “because I’m treating you to grilled salmon for supper.  Would you like that?”   “Oh yes,” she says, “I’ve never had it before!”   As I help her out of the car I marvel at her resilience and her enduring beauty.  She is 96.   Together we have navigated the treacherous labyrinth of Alzheimer’s disease since her diagnosis 11 years ago.  Tonight we are navigating the risk of an evening out.

My mother will die someday but my unruly heart goes right on loving her fiercely, wanting, despite all logic, to keep her forever.  Love holds us to high standards, the most transcendentally difficult of which is simply letting go.

Applebee’s has been our favorite spot since we moved to Garner five years ago.  We dine there often and our bill has been paid on occasion by patrons both identified and mysterious.  Beautiful, gregarious and kind, my mother has charmed and been charmed by, nearly all of Applebee’s waiters and waitresses.  But we haven’t been there for awhile and BJ, our favorite waiter, is not working today.  Yesterday’s heat wave has been replaced by today’s cold front and the air in Applebee’s is chilly.  I don’t recognize our waiter, who smiles broadly then dashes off for menus we don’t need.   I order our usual:  grilled orange salmon, no potatoes, double order of vegetables (no butter), strawberry lemonade for her, unsweetened ice tea for me and a piece of caramel apple pie to split for dessert, with coffee.  Our waiter hesitates for a moment before divulging that grilled salmon and caramel apple pie are no longer on Applebee’s menu.  “How could  they?” I protest.  While the waiter and I commiserate over the uninformed decisions of distant management, my mother draws into herself as if being dragged by a malevolent force.  The strange, growing absence in her eyes unnerves me.  Grudgingly she chooses Crunchy Asian Salad, but her confusion and her litany of complaints notches up. She is cold, the seat is hard, the salad tastes funny, the fork is too heavy, there aren’t enough napkins, she doesn’t like this place.   She’s licking hot fudge from a spoon when suddenly her face contorts with horror and she cries out, looking over my shoulder,  “Those men are killing each other!”  I turn around in my seat and see that a television at the bar is previewing a violent crime drama.  I chastise myself:  Why didn’t I think about the televisions at the bar?   Why didn’t I insist on our usual window seat?  I reach across the table and grasp her hand.  “It’s alright, Sweetie,” I say soothingly.  “It’s just a television program.  You know I won’t let anything bad happen to you.  Eat your dessert and we’ll go home.  Everything is alright.”  “I don’t  want to sit here and be killed!” she snaps.

Other patrons stare.  I am stunned, embarrassed, sad, and angry—with the disease, with myself, with her.  I have sacrificed everything—financial security, social freedom, community involvement, a sense of future.  But I chose this road and I would do it again.   My mother will die someday but my unruly heart goes right on loving her fiercely, wanting, despite all logic, to keep her forever.  Love holds us to high standards, the most transcendentally difficult of which is simply letting go.  But today I am tired of plumbing new depths and heights of myself.  Frustrated and fed up, I help my mother to the car, reflecting on the cruel, diabolical force that is Alzheimer’s disease.  Like five million plus other people in this  country,  she is trapped in a strange world she can neither describe nor escape.  I don’t know what to do.

We drive across the shopping center and park outside of Pet Smart.  Dogs and their owners come and go and I point out this poodle, that lab, those cocker spaniels.  My mother brightens just a little with each wagging tail, then sinks inward again.  I am about to give up when a woman cradling a dachshund puppy emerges from a truck close by. I have learned to rely on the kindness of strangers and I get out of my car.  “Ma’am,” I say, testing the waters with my warmest smile, “that is the cutest thing I have ever seen!”  She beams and introduces me to Belvedere, who wriggles with delight and licks my hands.  I explain how things are and we walk to my car and place Belvedere gently on my mother’s lap.  She absorbs the puppy into herself, pressing its soft warmth to her breast.  Closing her eyes, holding her head down close, she murmurs softly. Belvedere squirms contentedly and relaxes.  I think they have both gone to sleep when my mother suddenly raises her head and looks squarely into my eyes.  She releases a dazzling smile, her eyes sparkling like emeralds.  “I love you,” I say. “I love you more than Orville Redenbacher, Johnny Walker, Russell Stover or any of those guys.”  Sometimes I add a long string of names to this mantra but in this moment  I can recall only three.  “I love you too!” she says heartily.  Belvedere wriggles and licks her cheek.  His owner smiles, our eyes meet and for a moment the four of us are embraced in grace, redemption, healing and love. PetSmart.

As we drive home, my mother chatters happily and non-stop about everything.  Nothing she says makes any sense but when we are almost to our turn, she announces, “I want some dessert!  I haven’t had any dessert.”  I don’t remind her of the dessert shooter she just devoured.  I check my vanishing funds.  “Well alright, let’s do it!”  I say.  We laugh all the way to  McDonald’s.

____________________________________________________________________________________________________________
Margaret Toman is a freelance writer and Alzheimer’s advocate who volunteers for Alzheimer’s NC.  She lives with her mother in Garner, NC.

The Gift of the Present

We spend a lot of time dwelling on the past and worrying about the future.  Is it a sign of the times we live in?  Is it a symptom of the human condition? 

The Kemper House mission puts aside the past and future and celebrates the infinite worth of the moment.  I was talking to Betty Kemper recently about the story behind the mission statement.  She spoke of folks with memory loss no longer having the capacity to measure life in days, weeks, or years.  “They can, however, measure the joy of the present moment.” 

The Alzheimer’s/memory loss journey can be a bumpy one.  One never knows what tomorrow will hold-or truly, the next hour-for the person with memory loss.   All we have is this moment.  

Betty reflected on some of those joyful moments she shared with her mother-in-law, Helen: “One time, we brought in a tape recorder and played 40s swing music-her favorite-and as soon as we hit the play button, her face relaxed and a smile appeared.  She recognized something familiar and pleasing.”  (As many of you know, Betty was the in-town caregiver for her mother-in-law in the 1980s.  Helen lived with Alzheimer’s disease for nearly 20 years.)

Another remembrance was when the family came to celebrate Helen’s 80th birthday.  She was far along in the disease process and had been living in an assisted living community for some time.  Her daughter brought a little bottle of scotch, Helen’s favorite, to the party.  At dinner, they poured the scotch into a glass with ice, her preferred drink many years ago.  She hadn’t enjoyed a scotch on the rocks for quite some time.  But when she brought the drink to her lips and sipped, “she smiled and giggled mischievously-she remembered.”  

That’s why we look to the infinite worth of the moment at Kemper House: a smile, a moment of intense clarity, a tender exchange, maybe a squeeze of the hand.  This moment is a gift.  Truly, “life is not measured in the breaths we take, but the moments that take our breath away.” 

In her workbook I Was Thinking, Diana Waugh, RN, BSN said:  “Sometimes if you ‘give up’ on your loved ones as you knew them, you can ‘find them’ in a different way…When we change our expectations, we can find them as they are…Our relationship, although different, will be so much more fulfilling.” 

Put aside your thoughts, your mental bargaining, and your frustrations.  Find your loved one, the person he or she is now, at this moment.  Let go of the fight to try and change what is beyond your control.  See things as they are and do not waste precious energy and time wishing things were different.  Embrace the infinite worth of the person, the infinite worth of the moment.

Eckhart Tolle, a contemporary spiritual teacher, says, “Unease, anxiety, tension, stress, worry-all forms of fear-are caused by too much future, and not enough presence. Guilt, regret, resentment, grievances, sadness, bitterness, and all forms of nonforgiveness are caused by too much past and not enough presence.”

How does one get more presence?  Well, I’ve heard that awareness and gratitude are pathways to more presence.  Become aware of your thoughts and their impact on your wellbeing.   Determine what is under your control and what is not.  Replace those thoughts with things that you are grateful for right now.  Be at peace with this moment, with yourself, and with your loved one.

Gratitude is the memory of the heart. 

The only moment in which we can truly be happy is the present moment. The only moment that we have control of is the present moment. We cannot change the past, nor can we control the future. 

Every year about this time I make a resolution.  I resolve to be steadfast in my resolution.  And…  I usually get sidetracked rather quickly.  But in 2012, I’m going to dig deep and find a new resolve to live in and celebrate the present moment.  It’s my hope for you, also. 

Wishing you a blessed, present-filled New Year!

-Jenny Kemper

Meaningful Memories

The holiday season is here, and with it comes many familiar traditions such as Christmas lighting and decorations, holiday shopping, laughter, and sharing of memories. Those of us who are managing the care of someone with Alzheimer’s disease will find that we have an array of feelings to deal with and, mostly, we wish for the understanding of others.  Family members and caregivers often feel overwhelmed with the added burden of care during this busy time.

Image
With my mother-in-law, Helen

It was around this time of year when my mother-in-law was diagnosed with Alzheimer’s disease, and while it didn’t seem too bad for the first several years, she seemed less and less able to cope as the disease progressed.  Several suggestions were made that helped our family at the time and I would like to share some of them with you.

  • Communicate with friends and other family members.  Be open about discussing the details of family gatherings and organize tasks in a way that least disrupts the routine of the person with Alzheimer’s disease.  Do only what you can reasonably do and be direct with others about what their expectations are of you and the other person.
  • Engage your person in simple activities that are reminiscent of the past.  Doing these things together will give you quality time with each other. Play favorite holiday music.  I remember decorating a small tree in my mother-in-law’s room while we listened to Christmas tunes on the radio. She walked around the entire time holding a small box of ornaments in her hands. She never dropped them and actually hummed the entire time!
  • Ask for help if you need it.  Do not let yourself become overtired and rundown. It is very important to remember your own needs and if you need to take a break and have a little time away, it is really O.K. And remember that once the holiday season is over, there is a let-down period that you will experience. Again it is important to recognize your feelings and do something for yourself.  I remember that I would engage myself in an activity such as reading a book or working out regularly for a period of time. (I wish I would have kept that up!)
  • Most of all, accept the fact that things are different than they used to be. Your situation may now require more flexibility, patience, and additional planning, but these things will give you and the rest of your family continued memories and guilt-free (is there such a thing?) holidays.

For more tips to avoid caregiver stress, frustration and lonliness this holiday season, click here.

Wishing you all the best this holiday season,

Betty J. Kemper
President, Kemper House

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