Tag Archives: aging care

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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Posted in Caregiver, Living with Alzheimer's, personal stories, Walk to End Alzheimer's

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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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If It Were Just the Memory Loss

Posted on August 27, 2012 | 2 Comments

Dear friends and family,

At a brainstorming meeting for Louisville Walk to End Alzheimer’s team captains last week, I talked with a woman who had just lost her husband at age 60 to Alzheimer’s disease. So much for the concept that Alzheimer’s is only about older people who will be dying soon anyway.

That sounds really harsh, and perhaps a bit bitter, I know. But that concept is one of the barriers we face in raising awareness and money for Alzheimer’s research and support services.  Here is my response:

1.  Early onset Alzheimer’s can affect people even in the 40s. The woman whose husband passed away in July said he was diagnosed at age 54. While our family was devastated at the loss of my mother-in-law who suffered 13 years with Alzheimer’s before her death at age 91 last week, I am grateful for the 20+ additional memory-intact years we had with her that my new friend was unable to have with her husband.

2. The memory loss is just one aspect of the disease.  Other symptoms of Alzheimer’s can include personality changes that make caring for your loved one incredible difficult.  Anger, aggressiveness and severe depression are just some of these symptoms.  There’s also the embarrassment of having to have assistance with eating, toileting and other personal care - these experiences can lead to uncharacteristic outbursts  of frustration that grow more and more common, and often more severe, as the patient continues to lose functionality.

There are medications that help slow some of Alzheimer’s disease’s symptoms, and they are  a huge blessing.  To date, however, there is not one drug that can slow the progression of the actual disease itself.  So, as of now, once the connections inside the brain of the Alzheimer’s patient are broken, they cannot be mended. Retraining eventually becomes impossible as more and more connections are destroyed.

3.  And then there are the dangers that become more and more serious as the person with Alzheimer’s continues through the later stages of the disease.  A dear friend of mine had to lock all of the exterior doors in her home so that her husband, who had been a nuclear physicist for NASA, wouldn’t wander away and get lost.  Imagine having to child-proof your home to protect your formerly brilliant spouse from going out to work in his garden.

4.  Alzheimer’s doesn’t just affect the person who has the disease. As with other diseases, it affects the whole family, including the spouse or child who is often the primary caregiver.  While more than 80,000 Kentuckians have Alzheimer’s today, there are nearly 265,000 family members and friends who are providing care for someone with Alzheimer’s in Kentucky, according to the Alzheimer’s Association.

If it were just the memory loss, that would be sad enough. But it’s the loss of dignity, the personality changes, the danger of wandering away or eating something bad for you or forgetting how to swallow that make Alzheimer’s so insidious. It is the inability to say goodbye. It’s the thousands of unpaid hours of care in a situation that, as of now, can only end in death.

The purpose of my blog is to help increase understanding of what Alzheimer’s is and how it really affects the individual who has been diagnosed, as well as his or her friends and family members.  I also hope to encourage more people to get involved. If you haven’t already, please visit www.alz.org to learn more. Thank you.

Sincerely,

Bonnie

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Posted in Caregiver, early onset, Living with Alzheimer's, personal stories, Research, Statistics

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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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Posted in Fundraising, Living with Alzheimer's, personal stories

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Don’t Ever Think That Just Two People Can’t Make a Diffference

Posted on August 16, 2012 | Leave a comment

Dear Family and Friends,

Ten years ago, Cathy Nagy and Susan Oswald held the first Backyard Baseball event to raise funds for Alzheimer’s in honor of their mother.   It was literally a “backyard” baseball tournament, held in the empty lot behind Cathy’s backyard.  They signed up friends from the neighborhood and their children’s schools and raised $400 for their Walk to End Alzheimer’s team. That’s better than a lot of garage sales, and a whole lot more fun for the kids!

The event grew over time to include food, raffle items and a silent auction.  Every year, in the weeks before the event, Cathy’s living room would look like a warehouse facility for an “odds and ends” variety store. A few sponsors and donors became regulars they could count on year after year.  The kids grew into teenagers and looked forward every year to the event.  The neighbors, instead of complaining about the growing crowds and cars, joined in.

As they approached their seventh year, Cathy and Susan decided it would be their last, and they pulled out all the stops and set a goal: a total of $100,000 in funds raised for the Alzheimer’s Association over eight years.  Their loyal friends, colleagues and family members stepped up, as did sponsors, and in 2009, they reached their goal.  Over seven years, Cathy and Susan had raised $100,000 for the Alzheimer’s Association.

In 2010, Becky and Brent Beanblossom stepped up.  The event had too much name recognition, too many loyal participants and too much sponsor support to let it fade away.  Longtime supporters of the Alzheimer’s Association, Becky and Brent held a successful 9th Annual Backyard Baseball event at a new location, a local church, to accommodate the ever-growing crowd. Of course, Cathy and Susan continued to held tremendously, as they do today.

In the fall of 2010, I held  the last fundraising event for my younger daughter’s soccer team.  My specialty had been corn hole tournaments, an idea germinated by her Ballard High School soccer coach, Brooke Burd. I found that these were fun, family-friendly events that brought together multiple generations to enjoy an evening together for a good cause.

That’s why I agreed to begin chairing Backyard Baseball in 2011.  I relied a great deal on Cathy, Susan, Becky and their husbands, of course, and the name recognition that drew their dozens and dozens of friends, family and other supporters each year.

We are working to grow Backyard Baseball & Bar B Q into more of a community event. We’ve added live music — this year it was Muench (www.muenchband.com) — and scrumptious bar b q from Mark’s Feed Store.  The sponsors who have stayed with us over the years — Home Instead Senior Care, Byerly Ford/Nissan, First Capital Bank of Kentucky, Norton Brownsboro Hospital, YUM! Brands, LPL Financial, The Benefits Firm and WHAS AM 840 – have been joined by Guthrie/Mayes Public Relations, Christian Care Communities, WAMZ  97.5 FM, Q Country 103.1 FM, ESPN 680 AM, and Dr. Gary Reasor. Our generous donors continue to step up every year with wonderful gift baskets, gift cards, sports team logo wear and hand crafted items.

To date, Backyard Baseball & Bar B Q has raised more than $130,000 for Alzheimer’s (the numbers are still coming in for the 2012 event)!  This money funds workshops and services for people affected by Alzheimer’s in Kentucky as well as research to find a cure.

$130,000!  Don’t ever think that just two people can’t make a difference.

Sincerely,

Bonnie

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Ginger and John Sanders’ Story Chronicled on KYForward

Posted on July 12, 2012 | Leave a comment

Dear Family and Friends,

The first installment by Kentuckian Ginger Sanders about her husband’s diagnosis with Alzheimer’s and their life since then can be found on today’s KYForward.  I’m grateful that Ginger is sharing her experience and hope that those who read it will be reminded that they’re not alone, and that their experiences and thoughts are shared by many others in Kentucky

Here’s a link to Ginger’s first post: http://www.kyforward.com/2012/07/alzheimers-diary-ginger-sanders-chronicles-her-trying-journey-through-husbands-illness/

If you would like to share your story on this blog, please email me at bonnie@guthriemayes.com.  Thank you!

Bonnie

 

 

 

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Arguing With Someone Who Has Alzheimer’s

Posted on June 18, 2012 | 5 Comments

Dear Family and Friends,

My friend, Barb Webb, whose husband has Alzheimer’s, offers another look into living with a loved one who has Alzheimer’s.  Today, she talks about the frustration and futility — and sadness — of arguing with Al.

Sometimes it’s very hard to read what Barb writes. Her honesty is raw and painful.  I appreciate her so much for her openness, however, and I think you will as well.

From Barb:

I think the dynamics of arguing are interesting.  Each couple argues in their own unique way.  But those dynamics can change, especially when dealing with someone who has Alzheimer’s.

 For example, I was raised in a family of “yellers”.  When I would be in a heated argument, I would yell, always being careful to try and not yell anything I couldn’t take back, but yelling just the same.  Al’s attitude has always been, “I will be glad to discuss this issue with you when you can calm down and be rational.”  Rational, passional, I wanted to get it off my chest in the way I was always used to doing.  But over the years, Al’s way of dealing with disagreements rubbed off on me and most of the time, I calmed down and then discussed this with him.  I have to admit, it is the best way to deal with problems – much better than yelling and not really accomplishing anything.  But now that Al has Alzheimer’s our roles have changed. 

 Al is always wanting to help me.  That hasn’t changed.  Most of the time, I am very grateful for that, but when it comes to the kitchen therein the problem lies.  We have a V-shaped corner where our sink is located, so for the two of us to be working in that area is quite difficult.  Usually when he asks how he can help, I tell him to wait until I am done doing whatever I am doing and then he can do a task I need completed.  But tonight he just wouldn’t get the idea.  He asked three times while three times I told him to wait until I was done rinsing the dishes and then when I started to wash them he could dry.  By the 3rd time, I was frustrated and he was mad.  He started arguing with me that I was controlling and not letting him help.  I tried again (calmly) to explain everything to him.  It only made him madder and by the time he was done, he was going to sleep in the other bedroom and never talk to me or try to help me again.  I have to be honest.  I told him that was fine with me.  I know I should have stayed calm, but I was at my wit’s end.  Of course, the only thing that accomplished was me washing AND drying the dishes myself. 

 I am currently at my computer and he is sitting in the family room not sure what happened.  After I am done here, I will go to him and just start talking normally because already he doesn’t remember the argument.  That is the only good thing about Alzheimer’s – I can finally argue my heart out and yell and within five minutes he doesn’t remember any of it, I feel so much better and life goes on.   

 I, too, was raised in a family of “yellers.” Well, in truth, my mom and I were the yellers and my Dad was always very calm. In the tradition of marrying someone like your father, I married a very calm man who is always willing to discuss everything — even things about which we strongly disagree — with reason and love. 

Sometimes that’s very frustrating!!! Ha!

Barb’s scenario is frightening to me. It’s my husband’s mom who has Alzheimer’s, and my sweet husband who is at greatest risk for the disease in our family. Dave also is a huge help around the house….and our 26-year marriage is filled with doing almost everything together. Grocery shopping, laundry, changing sheets… .

Will I be living Barb’s scene in 20 years? Sooner?

I am selfish. I want a retirement filled with travel, visiting kids and grandkids, and enjoying more one-on-one time with the man who has filled my life with wonder at the kindness and generosity present in this world.

That’s why I will participate in the WALK TO END ALZHEIMER’S this year. To work toward my dream of a long, loving retirement with my husband.

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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Walk Recruitment Event Makes Alzheimer’s Even More Personal

Posted on May 24, 2012 | 5 Comments

Dear Family and Friends,

As involved as I am in the Alzheimer’s Association of Greater Kentucky and Southern Indiana, I hear a lot of statistics about the disease.  Did you know that there were 80,000 Kentuckians with Alzheimer’s in 2011, and that more than 264,000 family members and friends provided these persons with more than 300,000 hours of unpaid care?

But here’s  where it gets personal. So far this spring, I have attended two community events to recruit teams for the Walk to End Alzheimer’s in Louisville on Sept. 8 and, without fail, every single person we talk to at these events has been affected in some way by Alzheimer’s disease.  For some, it was a grandmother or grandfather who had died, or was currently struggling with the disease. Several people had lost their husband or wife. For others, it was a friend, some close, some more distant.  One gentleman at a Farmer’s Market last Saturday first answered “no” when I asked him if he knew someone who was affected…but then he backpedalled and said, “Oh yes, yes I do,” as his face took on a sadness in stark contrast to the sunny morning in St. Matthews.

That same Saturday, a woman about my age and I shared stories about our mothers-in-law.  And we both lamented that Alzheimer’s is one of the top 10 causes of death in the United States for which there is no cure. How can that be the case, so many years after the disease was identified? Yet, to date, there is not even a treatment to stop the progression of the disease as it creeps through the brain, destroying both cherished memories and practical knowledge. There are treatments for symptoms, but nothing to stop it or cure it.

One woman did pull me aside and say that all disease, including Alzheimer’s, was the victims’ own fault for not taking care of themselves.  She proudly stated that she was 76 years old and was in perfect health, thanks to her lifestyle choices.

I suppose nothing will change that woman’s mind, but I would like to have seen the conversation between her and my mother-in-law before Mom was diagnosed.  Mom may have been subtle and even proper in sharing her points of view, but she would never have let that woman walk away without setting her straight.  I might have argued more vehemently with the woman, had I not been so shocked, and then saddened by her mindset.

Mom has had high cholesterol throughout all the years I’ve known her. She was born with the propensity for it, and until she started losing her memory and ability to take care of herself, she took every precaution advised by her doctor. She took her medication religiously. She rarely ate an egg, and she watched her weight and exercised.  I don’t remember her ever being sick, in fact.  She was one of the healthiest persons I had ever known. Yet she counted that as a blessing, rather than something she’d earned.

Yes, diet and lifestyle may reduce the risk of getting Alzheimer’s disease.  But, if everywhere you look and everyone you meet has been touched by the disease in some way, we begin to understand that we have to do more to stop it. We have to find a cure.

For me, like so many of you, Alzheimer’s is personal. My husband’s grandmother suffered dementia, although we don’t know if it was Alzheimer’s. And now his mother is in the final stages.  I don’t want him to suffer the indignity and loss that always comes with this disease. And I don’t want our children to suffer that either.

I suspect Alzheimer’s is personal for you as well. Let’s do something about it. Let’s Walk to End Alzheimer’s on Sept. 8.

Sincerely,

Bonnie

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Switching from Partner to Caregiver

Posted on May 18, 2012 | 2 Comments

Dear Family and Friends,

My new friend, Barb Webb, shared the following with me a couple of days ago. She had told me before she wrote it that her husband, Al, who had been diagnosed with Alzheimer’s three and a half years ago, was told he could no longer drive. The news had thrown them both into a new phase of dealing with Alzheimer’s.

I waited to read Barb’s words until I knew I could be in a private place to really focus. I’m glad I waited, because I couldn’t stop the tears that started just a few sentences in. 

There is still hope in Barb’s heart, but things are changing, and she feels the need to be honest with those around her about what Alzheimer’s is really like. I am grateful that she shared this with me and is allowing me to share it with you. Please keep her and Al in your prayers.

Bonnie

     I am really feeling a little vulnerable right now because I am planning on stepping out of my comfort zone.  I am going to speak of some feelings that I share only with Al & my therapist.

      I am a glass is half full kind of a person.  And I normally come across that way with a pretty upbeat attitude.  I have attacked my husband, Al’s, diagnosis of Alzheimer’s in the same manner. I have given talks about Alzheimer’s and I have written a couple of articles and journaled on a blog and a website, but what I have always talked about were the ways Al & I are moving through this insidious disease with humor, acceptance and hopefully, grace. 

But those aren’t the feelings I have all the time.

And this afternoon I realized that it isn’t really fair to everyone I am around to portray myself in that way without also sharing the frustrations and problems both Al & I face daily.  I am afraid my sometimes Pollyanna attitude may be more of a hinderance than a help to others.  I don’t want others to ask themselves what is wrong that they can’t handle the daily problems Alzheimer’s presents in a more accepting way, like Barbara appears to do.. And I certainly don’t want anyone to feel less adequate than anyone else.  We are all in this together and unfortunately, each day presents a new set of challenges and tests us all to our limits.

      So, here goes…. Last week Al & I went to a new neurologist, Dr. Jicha, at UK in Lexington. We both liked him very much until he told Al he could not drive anymore.  Of course, Al’s opinion of him changed immediately.  And ever since then, he has been mad at Dr Jicha, me, the world, even God.  I mean intensely mad, like I have never seen him before.  He does not want to get past the anger and try to move into acceptance.  And he is quite depressed. 

I don’t blame him & I acknowledge that he has the right to feel as he does. But for the first time in the past 3 ½ years, I don’t know how to handle things and there is nothing I can do to help him.  I understand the anger.  I understand the feelings of inadequacy and embarrassment at having to be driven everywhere.  I also understand that the difference between men and boys is the price of their toys.  And cars and trucks are a big part of their toybox.  But there is nothing I can do to help him along this journey past the anger and on to acceptance.  So I watch him rail at God, say he isn’t going back to Dr. Jicha again and tell me it is my fault that he can’t drive.  And all the while, I see someone acting unlike the man I love and have been married to for over 30 years. He has always been the patient and understanding person in this relationship. The funny part is that I am not the most patient person in the world (I am a Type A, after all!) but this past week I have not lost my temper or gotten angry back at Al.  Instead my heart is aching for him and what he is going through. 

Ever since Al’s diagnosis I have looked at this as both of us hurting, both of us trying to maneuver along daily and both of us on the same page.  But after this week I realize that isn’t true.  There is no way I can hurt in the same way as Al is hurting, no way I can feel the depth of his anger or know the pain of trying to remember something and failing miserably time after time.  I also realize that up until now I really haven’t been feeling like a caregiver in our relationship because he still is able to do most everything for himself and make many decisions.  But with this new development I now am actually feeling more like a caregiver and it scares the heck out of me. 

Will I be able to help Al through this stage of anger and on to acceptance? 

Will I be able to keep him safe? 

Will I be able to continue to make him see how much I love him and still need him? 

I don’t know the answers, but I do know that I am going to continue to try to keep that glass half full attitude, continue to share our stories and most of all, continue to rely on God’s strength and grace!!

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