Tag Archives: Living with Alzheimer’s

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

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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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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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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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Posted in Fundraising, Living with Alzheimer's

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