Tag Archives: moments of joy

On a date with the love of her life

Posted on May 27, 2013 | Leave a comment

Dear Friends and Family,

Here is the latest post from Barbara Webb, whose husband has Alzheimer’s Disease.  This one made me laugh out loud. I’m so grateful my dear friend had this wonderful opportunity to enjoy an evening out with her husband.

“There has been a lot of stress in our lives lately, so both Al & I were looking forward to going to the Alzheimer’s fundraiser, Making Memories.  We went last year and had such a good time.  And when we realized that this year they were going to have a band and there would be dancing, we were especially pleased.  Al & I have always loved dancing, so this sounded like an opportunity to have some fun and let loose.

“Getting ready to go to the fundraiser was a slow, arduous process trying to get both Al & myself ready.  Al asked three times what to wear even though we had it set out on the bed.  He put those clothes away once and then asked again what to wear.  On the drive to meet our friends who we were going with, he asked me where we were going and who we were going with, not once but twice.

“Although Al is still able to be very sociable, I did wonder if this might be more than he could handle.  Would he be able to hold a conversation with not only our friends, but with people he didn’t know or wouldn’t remember previously meeting?  I think all caregivers have the same thoughts – wanting to have our loved ones remain independent, but also not wanting to put them in situations that will embarrass them or be beyond their abilities.

“So after saying a little prayer, with much trepidation, we forged forward.  And what a great experience.  It was like being on a date with the love of my life.  Even when he was speaking to people he didn’t remember or had not met before, the conversation and his sense of humor charmed them.  At one point he was talking with one of our tablemates to the extent that I was totally left out and they were having a great discussion.  I was never happier to be ignored.

“But the best part of the evening for me was the dancing.  Teepa Snow stated in a talk we attended once that music was one of the last things a person with Alzheimer’s loses and we proved her right.  Neither Al nor I are great dancers but we have such fun on the dance floor.  And this time was no different.  We danced fast with the same rhythm and enthusiasm as ever to the point that my feet wanted out of my shoes! Our slow dances were still romantic with Al quietly singing in my ear.  I felt young, sexy and pretty.  Just like years gone by.  And I think Al felt the same way.

“So, as much as our lives have changed over the past four years, we realize not everything has changed (at least not yet).  And we both vowed to enjoy more evenings out like last night – more time to enjoy each other, more time to have fun and appreciate our life together.

“So, if you know of a good place to dance and cut loose, let me know.  We’ll be there!!!”

Making Memories is a fundraiser for the Alzheimer’s Association, held each year in Louisville, Lexington and Evansville. This year, the local chapter changed it up a bit to add dancing and live music.  Clearly, Barbara and Al enjoyed the evening!

 

Bonnie

 

 

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Barbara and Al Webb’s continuing story

Posted on May 10, 2013 | Leave a comment

Friends and Family,

It’s time to start this blog back up as we approach the 2013 Walk to End Alzheimer’s on Sept. 7.  It’s also time for you to sign up your teams at 
http://act.alz.org/site/TR/Walk/KY-GreaterKentuckyandSouthernIndiana?fr_id=3390&pg=entry
, so you can begin your fundraising.

Meanwhile, here is a post from our dear friend, Barbara Webb with an update on her husband, Al:

 

I am happy to report that Al’s health has not deteriorated significantly, but there are enough changes that make daily life quite frustrating for both him and me.  Can you imagine going to the basement refrigerator only to get there and have to go back upstairs and ask what you were supposed to be getting? How would you react when there is a simple task you have completed many times in your life but now you can no longer figure out the sequence of directions nor even be able to understand the directions?  Would it scare you when you can no longer totally follow a television show or even a conversation among friends?  Welcome to Al’s world and the world of all Alzheimer’s patients.  I can’t speak for what goes through his mind, but I do know what goes through mine – frustration with my inability to help him more, sadness at what we have lost, fear of the unknown and future.  I try to remain calm and patient and remember above all else, he can’t help himself-it’s the disease.  But it isn’t easy for me, either, just as it isn’t easy for any caregiver. To see my strong, educated husband say to me that he is stupid tears my heart out.  He isn’t stupid; this disease is slowly shrinking his brain and not allowing him to think and remember as he used to.  When he asks me the same question over and over again and I want to scream, I have to take that deep breath and tell him one more time the answer to his question. I try to remain calm and loving because if I have learned one thing it is that it doesn’t help to raise my voice and you can’t argue with an Alzheimer’s patient.  It only exacerbates the situation and leads to more frustration.  Notice I used the word “try” to remain calm, but I haven’t totally accomplished that feat.  (Being a Type A doesn’t help, either.) And I know it is me that needs to do the changing because unfortunately, Al is not able to do that anymore.

 

I have read over and over again how caregivers need to care for themselves, but find it so difficult to do.  It seems there are very few moments for myself and when there are sometimes I am too tired to do anything but collapse in my easy chair.  But our therapist has helped me realize this needs to be a priority in my life, so I am trying to follow through on this.  I love massages so I have made a commitment to get a massage once a month.  (I signed a yearly contract so I would have to follow through!) I am also making a more concerted effort to say no when outside obligations are asked of me. (I haven’t fully accomplished that one.)  And I am being more forthcoming in asking help from family and friends.  I still try to make time for a mini “Shabbat” (a joyful time of rest) but that doesn’t happen as regularly as I would like. 

 

One thing I hope all caregivers take advantage of are the many workshops, programs, articles, books that are available to us.  If you are ever able to see Teepa Snow speak, don’t walk but run to her.  She is a very knowledgeable professional who speaks with much humor and love. (That is where I learned that the brain actually shrinks during the progression of Alzheimer’s, not just plaque buildup.)  I highly recommend the Best Friends Approach to dealing with Alzheimer’s.  This approach helps to enhance the lives of those living with Alzheimer’s and their caregivers’ lives as well.  The hope is that we will be able to turn from frustration and despair to joy and hope.  ”A Dignified LIfe-The Best Friends Approach to Alzheimer’s Care” by Virginia Bell and David Troxel, is a wonderful book that has helped me immensely in trying to continue to allow Al to lead a life of dignity and hope while keeping our relationship in tact as much as possible. Alzheimer’s Association has many enlightening programs for whatever stage your loved one is in.  You can get on their mailing list or email list and learn about all of the programs that are available in your area.  (www.alz.org)

 

Although we face the fact that we may need to place Al in a facility someday if I can no longer care for him, we are both committed to keeping him at home as long as possible.   As I have said many times, Al is the best thing that has ever happened to me and I wouldn’t change my life with him for anything in the world.  I daily live by the scripture verse Philippians 4:13 – I can do all things through Christ who strengthens me.  And a little humor never hurts – It is so difficult to remember when you are up to your ears in alligators that your initial task was to drain the swamp. Oh my goodness, welcome to the world of Alzheimer’s and caregiving!!! 

 

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Teri Shirk on Managing Holiday Expectations

Posted on December 14, 2012 | Leave a comment

Making the Holidays Enjoyable When a Loved One has Alzheimer’s

A Guest Post By Teri Shirk

 With all their potential for joyous reunions with beloved family members and friends, the holidays also can generate a great deal of angst at the prospect of visiting a loved one diagnosed with Alzheimer’s disease or another memory disorder.  The upcoming visit may lead to several questions:

  •  How should I respond when Aunt Mary tells the same story over and over, or when she forgets who I am?
  • How can I help Dad deal with his anger and frustration over Mom’s behavior?
  • What can I suggest to my young children and teens to help them enjoy the visit with Grandpa?

Spending time, even just a few hours, with someone who has Alzheimer’s can be stressful without some advance preparation to manage expectations and develop a list of activities and conversation topics. The goal is to create conditions where everyone – the patient and the visitors – can experience the pleasure of just being together.

A pre-visit discussion (in person, by phone or on the internet) among those who will be joining the person with Alzheimer’s can help set expectations and plan activities. Agree to keep in mind that the priority is to ensure that the person with Alzheimer’s has a good time – whether that means enjoying the entire visit or just experiencing a few, separate moments of joy while you’re together – and that achieving this goal may require some adjustments to the family’s traditional celebration activities. For example:

  •  Stick to the loved one’s current routine so that the visit isn’t disruptive or confusing. Big surprises don’t always work well for a person with Alzheimer’s.
  • Consider changing the traditional family Christmas dinner to a brunch or lunch, when Aunt Mary is less tired.
  • Reduce the number of people in the gathering, and allow others to help by bringing food.
  • Focus on activities that are meaningful to the loved one, such as having a holiday sing-a-long of familiar tunes; reading short, well-known holiday stories; or looking through photo albums.
  • Plan time for breaks, rest and respite throughout the holiday preparations – for yourself, for the loved one with Alzheimer’s, and for the loved one’s caretaker. For extended visits, slip away for a few minutes or a few hours when you can to regain your perspective.
  • Allow Grandma or Grandpa to help in a way they can be successful, whether it’s setting the table (who cares if the fork ends up on the right or if you have to get up during dinner to retrieve a forgotten utensil?), helping wrap gifts (if cutting and taping is too difficult, try suggesting he or she put stick-on bows onto gifts) or decorating cookies or the tree.

If your loved one lives in a care facility, think about celebrating by joining activities already planned by the facility, or by bringing a long-favorite dish to enjoy together.  Come prepared with a few much-loved family holiday stories to re-tell or a few traditional songs to sing.

Even in the early stages of Alzheimer’s, the loved one may repeat himself often or have trouble following conversations.  If telling a story again and again makes Aunt Mary smile or even laugh out loud, or if the inaccurate facts she keeps repeating are not relevant to how she feels at that moment, the best reaction may be simply to enjoy the retelling and ignore the discrepancies.  It may help to remember that Grandpa’s behavior, mood and memory changes are due to the disease, and not something that he can consciously correct. Once lost, the brain connections destroyed by Alzheimer’s don’t repair themselves. Over time, Mom simply does not realize her missteps; correcting or berating her will not help improve her memory.

For loved ones you don’t regularly see, determining whether the memory loss is due to Alzheimer’s or another condition can be difficult.  The Alzheimer’s Association posts numerous resources on its website, www.alz.org, including the 10 signs of Alzheimer’s and the seven stages of the disease.

The Association also offers Alzheimer’s Navigator™ (www.alzheimersnavigator.org), an online tool to help caregivers and people with dementia evaluate their needs, identify action steps and connect with local programs and services. Users can reassess needs and adjust care plans as the disease progresses. Additionally, a social networking community called ALZConnected™ (www.alzconnected.org) enables caregivers and people with dementia to connect and communicate with others who understand their challenges 24 hours a day. Members can pose questions, offer solutions, create public and private groups and contribute to message boards. The Alzheimer’s Association also operates a 24-hour helpline at 1-800-272-3900.

Living with Alzheimer’s peaceably often means just enjoying the moment at hand. And when it comes to spending time with family and other loved ones, that may be the best advice of all.

Teri Shirk is President and CEO of the Alzheimer’s Association of Greater Kentucky and Southern Indiana.

 

 

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“Shaboomaha” – A made-up word to make up for loss of words

Posted on September 21, 2012 | Leave a comment

Dear Family and Friends,

Today is World Alzheimer’s Day.  In many ways, it’s just another day in the fight against Alzheimer’s, but in other ways, it’s a chance to focus on the little things about Alzheimer’s that make it so difficult. Fortunately, there is often a way to find joy along with the sadness and frustration of this disease.

Below, Barbara Webb graciously shares another recent experience as she and Al continue to face their future with Al’s Alzheimer’s disease.  I love the way they handle the questions and frustrations that the diagnosis, and that living with Alzheimer’s, has raised in their lives.  She is so honest, and yet so very graceful.  I hope reading this brings you a smile and a bit of hope, and that it is also a little reminder about how important support groups can be to helping you face life with Alzheimer’s.

We know it is normal for Al to forget words when trying to express himself. Sometimes it takes awhile for me to fill in the blanks, but I usually am able to do that. 

I have recently become concerned because, more and more, I am having trouble coming up with a particular word I am trying to think of when speaking.  Al is not usually able to help me, so I tend to get quite upset with myself. 

I guess in a small way, this is an insight into what those with Alzheimer’s go through all the time.  Of course it worries me that there could be two of us in the same house with this disease, but friends, family and those in my support groups all say it is the stress I am under that causes my mind to go blank and leaves me unable to think of a word. 

I am going with that (otherwise, I will probably go nuts!!)  But I have to admit that I don’t handle it very well when this happens.  I get quite frustrated and angry. And that only makes it more difficult to think straight (another insight into what our loved ones deal with on a daily basis.) 

Out of the blue one day when I was trying to come up with a word, “Shaboomaha” came out of my mouth.  I have no idea where it came from, but Al and I looked at each other and cracked up laughing.  So from then on, whenever I can’t come up with that word I am looking for, I just say “Shaboomaha” and it immediately eases the tension and makes us relax.  By the way, usually when I relax I remember what I wanted to say.  Once again, it reassures us how important humor is in our lives, especially when dealing with a devastating disease like Alzheimer’s.  Try it and let me know what crazy word you come up with to get past the frustrations!!  

I agree with Barbara that humor is a very useful tool to ease stressful situations. I use it with my children to diffuse anger and frustration, and also at the office. My grandmother used to say, “Oh Fiddlesticks,” and I tend to spout out, “Clearly, I need retail therapy.”

If you’d like to learn more about Alzheimer’s and how you can help us in the fight to find a cure and the effort to ensure local support groups are available to those facing the disease, please visit www.alz.org/kyin.

Bonnie

 

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Thoughts from Walk Committe Member Barbara Webb

Posted on September 16, 2012 | Leave a comment

It has been a week since we participated in the Walk to End Alzheimer’s and I can still feel excitement inside myself.  What a glorious day!!!  It was raining when we got up, it rained almost all the way downtown, but just as we arrived in front of the Great Lawn, it stopped raining and the sun came out.  God’s timing is so perfect!!  Everyone was buzzing around setting up and greeting people.  The Lawn was a sea of white and purple shirts, everyone showing their support for the Walk.  There were youngsters, young adults, middle-aged adults and those of us with grey hair (Al adds, some of us without hair!).  Even some dogs turned out for the event.

 You could feel positive energy and excitement from the people who were registering everyone to the folks manning the various booths to the announcers who talked of their personal experiences with Alzheimer’s.  Al and I were fortunate enough to be on the stage and be introduced, Al as someone with Alzheimer’s and me as a caregiver.  Beforehand, when we were asked to participate we were told we would not be saying anything, but the announcer changed plans midstream, as announcers sometimes do.  He began asking Al questions about living with Alzheimer’s.  I have to tell you that I held my breath because I wasn’t sure what Al would say or if he would be able to handle the questions under pressure.  But I was so proud of him.  He spoke from the heart and answered all the questions beautifully.  I guess all those years of public speaking paid off.  He felt proud of himself, too, because was able to still do something he has always been able to do in the past.  Since there are so many things he has been robbed of doing, this was a great accomplishment.  Sometimes we don’t give our loved ones enough chances to still do things they were always able to do.  Thank goodness our announcer allowed Al to be himself and talk out about his disease.

There were so many people who worked so hard to make the Walk to End Alzheimer’s a success.  I can’t begin to name everyone so I will just mention one person.  As chairperson, Bonnie Hackbarth showed her commitment to end Alzheimer’s right from the beginning.  Her energy, excitement and enthusiasm were evident throughout the entire planning process.  I never heard her get discouraged or negative.  She was an inspiration to everyone.  I can’t think of another person who could have done the job as well as she, so Bonnie, THANK YOU FROM THE BOTTOM OF OUR HEARTS!!

Participants in the 2012 Louisville Walk To End Alzheimer’s hold up their flowers to symbolize how they are affected by Alzheimer’s.

Barbara Webb

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2012 Louisville Walk to End Alzheimer’s – A Retrospective

Posted on September 11, 2012 | 1 Comment

Dear Family and Friends,

The early morning of Sept. 8 began wet, wet, wet. The skies opened up every few minutes throughout the two hours beginning at 6:30 a.m. when the volunteer crew and Alzheimer’s Association staff arrived to set up for the expected 2,000 participants.  At one point, we all had to gather under the interstate overpass because of lightning.

Nonetheless, the moving truck got unloaded, pop-up tents went up, the tables were spread out, and the trash bins were placed. Those cardboard bins may have wilted a little, but not the volunteers! We slogged through hundreds of  puddles and carefully unfolded and refolded our soggy site maps, remaining steadfast in the assurance of a forecast promising that the rain would stop before participants started arriving at 8:30. We had lots to be grateful for – donations had totalled $217,000 before the Walk even began and it looked like we would meet our goal of $288,000. I’m still hoping that, when all the numbers are in, we will have reached my personal stretch goal of $300,000.  Who knows what that extra $12,000 might help researchers uncover?

Perhaps you were there at Waterfront Park when the sun broke through.  I had looked up to spy a little patch of blue in the sky above the western horizon about 8:15. I threw my hands in the air and hollered to the crew, “It’s coming! The sun is coming!”

A few people smiled; a couple laughed. Most people just kept on working. But it was about 8:40, as the participant flow was really gaining strength, that the clouds just slid away and all of the sudden, the air was awash with a filtered light as soft and refreshing as an early spring afternoon. The temperature was absolutely perfect…a light jacket was all you really needed to keep the nip away; as the crowd grew even larger, many new arrivals came in short-sleeves and flip flops.

I felt like my mother-in-law had sent us the experience of some of her best memories on earth. Oh, how she used to love the California sun, travelling there with her beloved husband every winter for a couple of months to escape the Wisconsin deep freeze.

We had 2,752 check in  for the Walk on Saturday – the largest crowd EVER since the Walk began in Louisville.  It seemed like every sponsor booth had visitors, and the walkways between sponsors were filled with movement.  at 8:45 a.m., when Joe Arnold and Coyote Calhoun asked people to raise their memorial pinwheel flowers in honor of those affected by Alzheimer’s, hundreds of colorful petals were spinning in the breeze — a myriad of hues illustrating that Alzheimer’s affects thousands of our family members, neighbors and friends, and that we were coming together to remember, to learn and to fight. I looked to my husband and to the Alzheimer’s CEO Teri Shirk – both were a little choked up for that moment.

Sometimes volunteers and staff members get caught up in the planning and the work and the logistics of a big event. For a short period Saturday morning, with the warmth of thousands of family members and friends standing together under an absolutely clear sky, we were caught up in the moment.

Sincerely,

Bonnie

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A Personal Loss

Posted on August 20, 2012 | 1 Comment

Dear Family & Friends,

My sweet mother-in-law, Natalie (“Mom”), passed away last Thursday morning after 13 years with Alzheimer’s.  Mom had lived a life infused with great emotional courage, a constant focus on family, and a whole lot of pure and unadulterated fun. While the last few years took away much from her, her first 80 years were extraordinarily full.

First things first: As much as I HATE Alzheimer’s Disease and what it did to both Mom’s brain and to her quality of life, I know that she is now joyous and that her brain is once again whole. I know that she is celebrating the reunion with her own mother who also suffered dementia; her beloved husband of more than 40 years, David; her sister; and many other family members and loved ones. I also know that my husband and I will see her again and that she will have many things to share with us when we arrive. I can just see her with a huge grin on her face, waving her arm and saying, “Come see, come see! You won’t believe this!”

I’d like to share a little bit about Mom and the three descriptors that always come to mind when I think of her: courage, family and fun.

Courage: In 1959, Mom had three young girls and was pregnant with my husband when her first husband died very suddenly. Perhaps some of you have suffered through a tragedy similar to this, and can imagine how difficult this period must have been for Mom, but it is beyond my comprehension. What courage she portrayed, giving birth to her newborn son and raising all four of her children on her own for several years.

Family: She found and nurtured an amazing love with her second husband, David. When I first met them, they had been married more than 20 years, and yet they still held hands everywhere they went, even to the grocery store.  She clearly cherished her relationship with him, and was an example to me of how to live your wedding vows every day as if they had been said only moments before.  (Certainly, there were moments of gratitude when, after his death in 2005, Mom’s Alzheimer’s often kept her from remembering her great loss.)

Mom also was an example of celebrating family gatherings. The focus was always much more on the people, than on the logistics or the food or the venue.

Fun: That said, Mom did love a party.  Even well into the Alzheimer’s, she would be giddy with delight when a group of us would enter her room and tell her we were going to celebrate … something, anything.  It may have been just lunch out, or as time went on, just enjoying a hot fudge sundae together. But if we told her it was a party, she was IN!

I am grateful that Mom remained pleasant throughout her years with Alzheimer’s.  Even near the end, even as she lost her ability to focus on anyone or anything, she never suffered through the anger or aggressiveness that sometimes accompanies this horrible disease.  I remember giving her a manicure and pedicure once a few years ago.  She held her fisted hands up in front of her face, shaking them back and forth, her mouth in a wide smile saying, “Oooooh, Ooooooh, Ooooooh,” and grinning, a little tear of joy slipping out of her eye.

I know that it could have been much different. I’ve seen persons Alzheimer’s truly frightened to their core, believing that someone or something intended to hurt them. We were spared that particular horror with Mom.

I am grateful to Natalie for all that she taught me, and for raising the wonderful man who became my husband. In honor of her life, I will continue to be involved in the Alzheimer’s Association’s research efforts into the causes of, and treatments for, this insidious disease. I will continue to support the programs that give helpful information and relief to family members and caregivers.  I will continue to fight for a cure so that my husband and children — and everyone else’s loved ones — can be free of the threat of Alzheimer’s.

Bonnie

 

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I Want My David to Always Be “My David”

Posted on July 18, 2012 | Leave a comment

Dear Family and Friends,

The “C” word used to be the scariest entry in my personal dictionary of healthcare nightmares.  And while the potential of being diagnosed with cancer, the disease that caused the early deaths of both my parents (my mom at only 56 years old), led me to adopt a few healthier lifestyle changes and scared me into never trying tobacco, the truth is that I’ve never been consistent about staying fit or eating correctly. I drink way too much diet soda. I am very creative about justifying chocolate. I exercise only in fits and spurts.

 I donated to cancer research. I was moved by my Dad’s taxing effort to complete a cancer walk in 2008, just a few months after his diagnosis, as a symbolic gesture to honor my mom for the walk she was too ill to finish in 1995. I supported the disease awareness efforts of family and friends.

 Now in our early 50s (VERY early), my husband and I are still relatively young. But every medical test still comes back clean.  We recognize that we are blessed. We understand that we should do more in terms of preventative behavior. I miss my mom and dad terribly.

 I guess I’ve never truly believed my health was at immediate personal risk. My parents have been gone a while now. The fear has faded.

 In recent years, the subject of my healthcare nightmare has refocused in a new direction.  And this time, I think that the fear is even more real because I am worried about the health of my husband, David, rather than my own health.  The shift has occurred as my mother in law, Natalie, continues her 13-year battle with Alzheimer’s disease.

 Today, this woman who journaled every day of her interesting life of travel and fun for decades can no longer hold a pen in her tightly curled-up hands.  She does not recognize anyone; not her daughter in law, not even her children. Her chin rests as if glued permanently onto her chest. Her eyes are unfocused, often closed, although she is not sleeping.  He lights have gone out.

 As recently as early last year, when my David and I were visiting Natalie, she heard Dave’s voice as when he walked up behind her and said, “Hi Mom.”  She immediately lifted her head and smiled, “That’s my David.”

 She might have meant her husband, David. The moment of joy, though powerful, was just a moment. It hasn’t happened in a very long time, and it may never happen again.

 I truly love Natalie. She was a great mother in law to me, especially after I lost my own mom. And Natalie is certainly one of the reasons I volunteer for the Alzheimer’s Association of Greater Kentucky and Southern Indiana.

But the driving force behind my volunteer efforts is the fact that I want my David to ALWAYS be My David. 

 I want to know that he will continue to rigidly follow his morning routine, and to be able to count on the fact that he will take exactly the same amount of time to get ready to leave the house whether we are on time or running a little late. I want to know he has a Plan B. He’s always has one.

As we enter our empty nest years, we hear stories about some of our friends wondering how their marriages will survive the lack of children’s activities and issues to keep them engaged with each other.  Not us.  David and I relish the coming years, and have loved virtually every moment of the tastes we’ve enjoyed as our youngest daughter goes to and from college. We look forward to watching our girls start their careers, create new families and discover what’s truly important to them.

I watched my mom suffer with cancer for 10 years.  My dad died more quickly, in a mere nine months.  Both deaths were incredibly difficult, but bearable. I was far away. I could compartmentalize.

 Perhaps it’s wrong to admit this, but I just don’t think I could bear it if I were to lose who David is long before I lost him to death. I need his light in my life. Next to my Heavenly Father, it is the most brightly burning light I can imagine. I cannot compartmentalize David’s role in my life.

 That’s why I am chairing the 2012 Louisville Walk to End Alzheimer’s.  I want a cure to this disease to be found in my lifetime.  I don’t want my husband to get a diagnosis of Alzheimer’s.  And I don’t want my children to face a future where Alzheimer’s is still a possibility.

 If you’ve read this far in my blog post, perhaps you have a personal connection to Alzheimer’s as well.  Please, visit www.alz.org/kyin and sign up to play your role in finding a cure. Sign up a team to Walk to End Alzheimer’s.  You’ll be playing a small role in my love story as well.

 Sincerely,

 Bonnie

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Alzheimer’s Means You Can’t Say Goodbye

Posted on June 4, 2012 | 1 Comment

Dear Family and Friends,

My colleague, Danielle Waller, shared an article with me this morning (
http://www.dailycal.org/2012/06/03/remembering-not-to-forget/
)  by Michelle Robinson of The Daily Californian that included this quote:

Human nature runs deep within every person, but it is only a part of the recipe that makes up a personality. It is the experiences, and the lessons learned along the way, that truly define an individual. Without the recollection of past memories, we are reduced to young children who lack the wisdom gained from experience.

Robins was lamenting her grandfather’s deterioration from Alzheimer’s.  She raised in her article what I believe is an insightful question:

What is a person, if not his experiences and memories?

Robinson pondered this question as the Alzheimer’s progressed, and she wrote that she found herself distancing herself from the man she used to feel so close to, commenting:

Without the groundwork of our shared experiences, there was no glue to maintain our connection.

and

I dwelled on the mutual not-knowing, how neither of us recognized the other any longer. I thought that all there was to our relationship were the memories we shared.

That lost connection made his passing particularly hard for her. I get that. Not being able to say goodbye is one of the hardest parts of death. Indeed, my memories of saying goodbye to my Dad over the course of his nine-month battle with cancer is filled with sweet moments that can make me laugh out loud and then tear up at a moment’s notice. We connected over and over, talking through experiences and concerns in a way that we never had before, notwithstanding that I had felt very close to my Dad while growing up. This was a new level of connection, and I’m so grateful for that.

As I read Robinson’s article and thought about my mother-in-law, however, I thought about how often I dwell on the lack of connection I have with Mom. Whereas my Dad’s dying days brought new closeness, Mom’s bring distance. It’s especially hard, because she lives seven hours away, so we can’t see her very often.

I often think about the fact that we don’t receive her letters or phone calls any more. And that she can’t read or understand mine.

I am saddened by the knowledge that she and Dad no longer stop by on their way to some fascinating Elder Hostel, or during their latest meandering road trip to see as many children and grandchildren in a single trip as possible. And that we can’t visit her and Dad  during their annual trip to her beloved California to escape the Wisconsin winters.

Robinson said in her article that she began to focus on her own sweet and poignant memories of her grandfather, and that helped her say goodbye. That’s true…our memories of our beloved ones with Alzheimer’s do help us. But, as heartbreaking as it was to lose my Dad so early in my own life, I lost my “second mother” a lot earlier.

That’s why I fight for a cure. That’s why I’m chairing the 2012 Louisville Walk to End Alzheimer’s.  Have you registered your team yet? Please visit www.alz.org/walk to do so.

Sincerely,

Bonnie

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Making Mother’s Day Meaningful When Mom Has Alzheimer’s

Posted on May 7, 2012 | Leave a comment

Dear Family and Friends,

Mother’s Day was always a pretty special day during my childhood … partly because my mom always made sure we understood the axiom, “If mom isn’t happy, ain’t no one happy.” 

So making her Mother’s Day a happy one was a priority! Now that she is gone, I love to think about some of the silly things we did to achieve that goal….and she always appreciated whatever it was.

Truthfully, of course, my mom was the critical household engine, the face of our family to the world, and the reason we could all find things to eat and wear every morning. Don’t get me wrong: we all had chores, but she also made sure we learned how to do the things that would one day make our own households run smoothely while we also made our ways in the working world.

My husband’s mother, Natalie, also raised four children, and for many years, her husband was out of town during the week as a travelling sales person. Thus, she did a lot of it on her own.  And my sweet husband, as helpful as he is around the house as an adult (actually, he does almost as much as I do), was the baby of the family as a child. I hear stories from his sisters about how his mom started his mornings by putting a huge stack of toast in front of him as he stumbled in from his bedroom.

Of course, Natalie (I call her Mom) is now in her 13th year of living with Alzheimer’s and she is no longer able to take care of anyone, even herself.  Yet celebrating her special day is very important to her children. We all want to honor her, and remind her how much we love her and appreciate the years and years of daily sacrifices she made for us.

I was reading an article today (
http://www.oregonlive.com/living/index.ssf/2012/05/idea_on_making_the_most_on_mot.html
) that offered some great tips. The author suggested using music and photographs as a way to connect with Mom.  She also suggested going outside if the weather is nice…often, those living in nursing homes or otherwise limited in their ability to enjoy the outdoors truly appreciate a soft breeze of fresh air on their cheeks and the scent of spring flowers.

The author also cautions against overstimulation, which can sometimes upset someone with a memory disorder.  It doesn’t have to be an elaborate celebration to be meaningful…in fact, just your presence can be what Dad or Mom really wants.

David’s Mom loves hot fudge sundaes, so we always stop by Dairy Queen on the way to visit her.  She doesn’t smile much any more, or make any kind of facial expressions, but you often hear a little sigh in her voice as she takes each bite.

Those moments — moment of  joy — are our goal.  As the disease progresses, the Alzheimer’s patient loses the ability to connect  memories and ideas.  Thus, with Mom, we try to find little things we can do to bring little moments of happiness. Her tiny smile, or lifting of her head to look at us, is enough.

I hope you all have a wonderful Mother’s Day.

Bonnie

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