Tag Archives: aging well

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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Posted in personal stories, Walk to End Alzheimer's

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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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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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Posted in early onset, Living with Alzheimer's

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Living with Alzheimer’s – An Update from Barb and Al Webb

Posted on July 5, 2012 | Leave a comment

Dear Family and Friends,

My friends, Barb and Al Webb, continue to share what it’s like to live with Alzheimer’s.  Today, the story is upbeat.  I hope it lifts your heart the way it lifted mine.

It reminds me a little of the early years of Alzheimer’s for my mother-in-law. She would forget something and someone would gently correct her, and then she would respond, “Oh, I guess that’s my Alzheimer’s.” 

Perhaps you, like me, have made jokes about having an “Alzheimer’s moment.” We weren’t trying to be insensitive, and I suspect each of us is really fearful of being diagnosed with Alzheimer’s.  But you’ll see below how Al and Barb are trying to turn his diagnosis into some good:

The story from Barbara’s perspective:

We were out with 3 other couples from church last week for dinner.  We have been with them before, but don’t know them well.  We are still learning about each other.  The subject turned to health issues and we were talking about everything under the sun from healthcare reform to aging to minor aches and pains we all have, when one of the men said there is one illness he hopes he never gets.  It would be the worst thing to have and he’d rather be dead than go through dementia.  It got pretty quiet around the table and I looked at Al and raised my eyebrows at him.  I wasn’t sure how he was going to react – was he sad, angry or depressed about what was said?  He didn’t miss a beat.  But I think I’ll let him tell you what happened next.  When you are finished reading Al’s side of the story I think you will agree that I am married to a really special and remarkable man!!

 Al’s perspective:

As Barbara stated, we were enjoying a nice dinner and conversation with friends we recently began getting together with.  Everyone was relaxed and talking and laughing and bemoaning the fact that aging is not for sissies when someone (I’ll call him Joe) stated he’d rather be dead than have dementia.  For a split second, I felt like I had been slapped in the face, but then I remembered that he didn’t know of my diagnosis and never meant to hurt my feelings or embarrass me.  I could see Barbara looking at me to see how I was going to react.  The only thing I could think of was that this was my opportunity to let them know I have Alzheimer’s and to let them see that life does go on and is still definitely worth living.  So in a few short seconds, I looked around the table and stated, “A while ago I was diagnosed with Alzheimer’s and you are right, it isn’t fun.  But we are dealing with it in the best way we can, by being open about it and not hiding anything.” 

Joe began apologizing and I just told him not to worry, that all was o.k.  We then were able to talk for a little while about some of the statistics and about our daily life and how different it is today from 3 ½ years ago.  We also asked them that anytime they have some extra money to donate to a charity, the Alzheimer’s Association is a very worthy cause.  So what remained of the evening was not only salvaged from disaster, but also turned into an opportunity to share some of our life with others.  For me, that’s what it’s all about – that and finding a cure for this horrible disease!!

Thanks for sharing this story, Barb and Al!  If you’d like to share your story on this blog, please email me at bonnie@guthriemayes.com.  And if you’d like to donate to the Alzheimer’s Association, please visit www.alz.org/kyin or call 502-451-4266. Thank you, on behalf of Al, Barb, my mother-in-law and the 5.4 million other Americans with Alzheimer’s!

Sincerely,

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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Sharing an article: “Eight Letters: The Space Between Their World and Mine”

Posted on April 30, 2012 | Leave a comment

Dear Family and Friends,

I was particularly touched by this news article, which ran in several newspapers in Kentucky, and wanted to share:

http://www.lebanonenterprise.com/content/eight-letters-space-between-their-world-and-mine

Sincerely,

Bonnie

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Living with Alzheimer’s “not for sissies”

Posted on April 3, 2012 | 2 Comments

Dear Family and Friends,

Al Webb has Alzheimer’s. To help raise awareness and understanding, he shares his story at various Alzheimer’s events. Below are his remarks at a legislative rally in Frankfort in January.

A couple of things about his remarks stand out for me. 

First, Al was shocked by the diagnosis…he never thought Alzheimer’s would happen to him. There was no family history of the disease.

I have no history of Alzheimer’s in my family either…a lot of cancer, but no Alzheimer’s. As active as I am in trying to raise awareness of the disease on behalf of my mother-in law, I am now feeling a little big shell-shocked as I consider the possibility that this devastating disease could affect me, my siblings or my children. Every time I forget things these days, my private joke about my worsening memory is a little less funny.

Second, Al is focused on his family and how glad he is to be back in Kentucky so he can be near them. The recent Facts & Figures report from the Alzheimer’s Association found that one in seven persons with Alzheimer’s lives alone, and half of them don’t have an identified caregiver.  How frightening. I am grateful for Al’s reminder about why we need to fight harder to find a cure for this awful disease.

My name is Al Webb. Barbara, my wife, & I have lived in Ky. for 9 years; 8 years previously and 1 year since our return.  Our children & grandchildren all live in Crestwood, Ky.

We both know that if a cure is not found we will need more help from family in the future.

That plus our grandchildren asking “Could you come to Ky. and live closer to us?” was all we needed to return.

As for my career, I spent the majority of it in Human Resources, first as a recruiter, then as Mgr. of HR, and finally as Director of HR in Delaware.  I was responsible for sites in Texas, Canada, Delaware and Il.

I earned a lot of air miles.

Barbara & I were retired in Fl. when I was diagnosed with Alzheimer’s. Barbara was the one who suggested I see a doctor because I was repeating myself & forgetting things we had just discussed.

She was absolutely correct.

After seeing a neurologist & having a Petscan, a diagnosis of Alzheimer’s was confirmed.

We were totally shocked & devastated.  I couldn’t seem to get past thinking about where this all would go someday and Barbara couldn’t get past wanting her old life back again.

It never occurred to me that I would ever be diagnosed with AD.  My grandfather, father & at least 2 of my uncles had Parkinson’s disease so my worry for years was that I, too, would develop Parkinsons. You can imagine my surprise at my diagnosis of AD.

Slowly we adjusted to the diagnosis and started working our way out of the “funk”.

It continues to be a daily challenge.  Staying focused, processing through a task, remembering conversations that were just discussed can all be difficult at times.

Our decision to move back to Ky. proved to be the best decision we have ever made.

We love watching our grandchildren grow up and mature. I especially enjoy attending some of the activities in which they are involved. We have watched track & cross country meets, swim meets and piano lessons.

What a joy it is to be a part of their lives.

It is also a joy to be near our children & their spouses, knowing we can call on them whenever we need them.  And we have done so in the past year.

I now know why my grandfathers used to say “Whatever you do…keep the family together!”

I cannot imagine doing anything else.

The biggest change for me is not being able to rely on my memory which at times does not function very well. So I rely more on family for help.

Living with Alzheimer’s is definitely not for sissies.

My medications are quite expensive, even with the assistance of health insurance and Medicare.  Prior to having Alzheimer’s I took 0 medications.  The 2 medications that I now I take for Alzheimer’s cost so much that in 2010 I was in the donut hole by July. And that is with a drug plan.  I can’t imagine how anyone affords these medications without insurance. Thank goodness Aricept has recently been released as a generic drug.

I’m certain that there will be more expenses in the future in regards to medication and my care.

I would be most appreciative if the legislature would help bring down some of the outrageous costs of medications and ensure that programs that are in place continue.

Thank you for allowing me the time to speak to you today.

Thank you, Al, for being willing to share your story.  I know it can make a difference.

Bonnie

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Aging Care Speech I Found Fascinating

Posted on February 22, 2012 | Leave a comment

Dear Family & Friends,

Louisville is blessed with some incredibly smart, generous people who have insight, talent and a willingness to work relentlessly to support our community and its people.  I recently came across the remarks of John Reinhart President & CEO of the International Center for Long Term Care Innovation (“InnovateLTC”), the nation’s first incubator for innovative aging care products and services.

Louisville happens to be the world leader in aging care company headquarters, and that is leading to some fascinating networking and collaboration regarding how and where the world’s growing aging population will live and work in the coming decades. The speech you’ll find at the link below offers some interesting insight on that topic.

But what I also found interesting and touching about the speech are his reflections on how “aging care” is really a lifelong wellness proposition, and that different generations have different perspectives on what it means to age well. I welcome your thoughts on his remarks.

http://innovateltc.com/2011/12/09/when-the-quest-for-aging-innovation-becomes-personal/

Sincerely, Bonnie

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