Barbara Webb: Turning Her PPMs into BBMs

Dear Family and Friends,

I’d like to share another post from Barbara Webb, whose husband, Al, is now in the middle stages of Alzheimer’s disease where he is still active, but needs an increasing amount of help with daily activities.   Barbara’s 95-year-old mother has also declined recently. Totally active until six months ago, she is now in a nursing home. Sadly, her physical decline is accompanied by some dementia and hallucinations.

What I love about Barbara’s posts is that they’re very honest about the realities of living with Alzheimer’s, but she always finds the blessings amid the heartbreak. Today, she shares with us how she does that:

“Although this is the time of the year that many are counting their blessings and looking forward to celebrating the holidays, this time of the year can also bring on sadness and depression for many.

“My life has changed a lot in the past few years.  Instead of enjoying the golden years with trips and checking things off my bucket list, I am caring for two people who I love very much.  Although I understand that I am truly blessed to be their caregivers, I also long for the good old days.  This does cause me to be sad at times and even somewhat depressed.  I have nicknamed this my PPMs – my “poor pitiful me’s.” But the other day I had an idea.  Every time I get the PPMs, I would like to turn that around to the BBMs – my bountifully blessed me’s.  Here are some examples of making those changes in my mind:

“When we can’t travel long distances anymore,

Be thankful for all the memories of trips we have taken.

 

“When I am worried about being in the donut hole for Al’s medications,

I am thankful that we have the resources to pay for those medications.

 

“When the chill is nipping at our door,

I think about the wisdom in moving from Florida to be near family to help us.

 

“When my schedule is jammed full of doctor appointments for Al,

I thank God that he gave doctors the knowledge to care for those in need.

 

“When I feel angry that I have to now drive everywhere we go,

I am glad that I am able to drive so that we are not dependent on others or public transportation.

 

“When I give my mom a massage that she loves so much instead of thinking about the millions things I have to do,

I look at her face and see how relaxed she is and am thankful that I can give her that peace.

 

“When I feel the walls of the smaller home we now live in crowding in on me,

I am so thankful we downsized when we did to make upkeep easier.

 

“When our wonderful neighbors offer to help,

I accept with thanksgiving knowing I am also allowing them to be blessed.

 

“When Al tells a silly joke for the hundredth time,

I try to be glad that he still has his wonderful sense of humor.

 

 

“When Al can’t remember something,

I am glad that God has given me a good memory (at least so far!).

 

“When I think about how neat and clean my house used to be,

I look around at the mess and think of Annie and say I will clean ‘Tomorrow”.

 

“When my mom calls totally confused and wants me to go there immediately because ‘the men’ are in her room and I need to get them out,

I am glad that I am able to calm her down to the point she can relax and go back to sleep.

 

“When I feel I am pulled in all directions and to the breaking point,

I am thankful for a caring support group of people who listen and know what I am feeling.

 

“When I need a little extra help from a therapist,

I am glad that we were able to find one who understands us so well.

 

“When Al wants to eat constantly,

I am thankful that he has an appetite and can be well nourished.

 

“When I am exhausted from dealing with insurance companies, bank statements, paying bills,

I am thankful for the insurance we have and the ability to pay those bills.

 

“I could probably go on for a lot longer, but I think you get the general idea.  This holiday season, and beyond, I am trying to look at my BBMs instead of my PPMs.  I am not always successful but I am trying.  I am finding that when I do this, my sadness lifts and I can smile at all the blessings I do have in my life.  I think that sometimes when we are so focused on the tasks at hand, we tend to lose sight of the big picture. Remembering my blessings not only makes me feel better but also enables me to be a better caregiver and wife.

“So I would like to invite all of you to concentrate more on your BBMs and less on your PPMs.  I bet if you sit down and make a list you will be surprised at how many blessings you truly do have. And how much better you feel.”

Thank you, Barbara, for your perspective.  And may you all have a blessed Christmas.

Bonnie

 

Blood Test Might Predict Alzheimer’s

http://www.nbcnews.com/health/aging/blood-test-might-predict-who-will-develop-alzheimers-n47206?WT.mc_id=enews2014_03_12&utm_source=enews-aff-78&utm_medium=email&utm_campaign=enews-2014-03-12

#endalz

Seth Rogen re Hilarity for Charity

Special thanks to this lazy, self-involved comedian:

 

Retired psychologist Richard Taylor is the face of Alzheimer’s

A Discussion with Richard Taylor PH.D.

October 14, 2013

 Richard Taylor, a retired Psychologist, was diagnosed with Alzheimer’s-type dementia in 2001 at the age of 58. Now, he is a champion for individuals with early-stage and early-onset Alzheimer’s disease, and author of the book Alzheimer’s from the Inside Out.

Originally, he started to write to better understand for himself what was going on inside of him.

Richard is a passionate advocate for several issues concerning the involvement of people living with a diagnosis of one of the diseases of dementia.

Monday October 14, 2013 from 4-6 pm EST

Alzheimer’s Association Louisville Chapter Office

Kaden Tower

6100 Dutchmans Lane Suite 401

Louisville, KY 40205

To register for this event please call 1-800-272-3900

 

Proud Moments

Dear Family and Friends,

Another heartwarming post from Barbara Webb, whose husband has Alzheimer’s Disease.  She and Al are a constant inspiration to me.

“Most of you reading this know that my husband, Al, has had Alzheimer’s Disease for five years.  In past blog articles ,I have told of happy times, difficult times, sad times.

“Today I want to speak to you about proud times.  I know it sounds weird to have the words Alzheimer’s and proud in the same sentence, but I am so proud of Al in how he handles his disease.  Is he happy to have been diagnosed with Alzheimer’s?  HECK NO!!  Does he like how confused his life has become?  NO WAY!! Is it easy for him to talk with people when he is having trouble following the conversation?  NO!!  Does the fact that he can’t focus on one subject make it difficult for him to complete a task?  OF COURSE!!  Does he feel less of a complete man because he can’t do what he used to be able to do?  YES!!  Do we both wish we could go back five years and pick up where we left off?  OH YES INDEED!!

“But no matter how we wish things were different, they aren’t.  We pray for prevention, we pray for a cure and we pray that we can handle each day as it comes to us. But at this time in our lives, it is what it is.

“We are not gamblers.  To prove this point, we just returned from a trip out West and our last stop was Las Vegas.  We not only were two of the few people in bed by 10 p.m., we were also among the minority who did not make a single wager while in Las Vegas. But I do know that gamblers have to play the hands they are dealt.  So in that aspect, I guess we are gamblers because we don’t have a choice in the hands we are dealt, but we do have to play the hand that is dealt to us.

“And Al plays his hand quite well.  I am always amazed at how willing he is to talk about his disease.  We were at a dinner party several months ago with people who don’t know us well.  As is the case often at our ages, the conversation headed in the ailment direction.  Someone made the statement that all he knew was that if he had Alzheimer’s he would kill himself.

“Al could have kept his mouth shut and they would never have known that he has Alzheimer’s, but Al spoke up and told them of his diagnosis.  Complete silence for a short time until Al started telling his story.  It opened up a great dialogue of questions, answers and a whole new awareness of the disease for those at our table.

“Last Saturday, we attended the Walk to End Alzheimer’s.  What a glorious day.  The Great Lawn in Louisville was packed with people who have Alzheimer’s, caregivers, professionals and many who were there to show their love and support.  I watched Al as he spoke with many people about Alzheimer’s, its effects on our lives and how we are dealing with the continual changes.  As usual, his humor was evident in making people feel at ease to discuss this devastating disease.  They were like flower petals as they opened up and asked questions.  His attitude demonstrated to everyone he talked with that there is definitely life after diagnosis of Alzheimer’s and it’s a pretty good one, too!

“I am so proud of Al for taking a lousy hand he was dealt and making a royal flush out of it!!”

Are they not an amazing couple! Love you Barbara and Al!

Bonnie

 

I Walk to End Alzheimer’s for … Barbara Webb Walks for her Husband, Al

Dear Family and Friends,

In the following guest post, Barbara Webb characterizes Alzheimer’s disease as an insidious thief who keeps stealing precious things from her and her husband, Al, who was diagnosed five years ago. Barbara’s stories always touch my heart. They make me laugh at the strength and humor she and Al portray, and they make me cry for the things they are losing to this insidious disease.  Please read on for the next chapter of Barbara and Al’s story:

“With our Walk to End Alzheimer’s event in Louisville quickly approaching, people have been asking me who I will be walking for.  My dad died from Alzheimer’s 13 years ago, a good friend died from dementia three months ago, we have several friends who currently battle Alzheimer’s, but when asked this question, I definitely answer FOR MY HUSBAND, AL!!!

“Al was diagnosed five years ago and I would currently classify him as in the late early stages or early mid stages.  His memory has definitely declined and his ability to process simple tasks that he used to do with ease have become more and more difficult for him.  But he astonishes me every day with his positive attitude, sense of humor and determination to live his life in the best way he can while fighting Alzheimer’s.

“Instead of a disease, I often think of Alzheimer’s as a robber – only much more destructive than any thief that comes in the night and steals us blind.  The human criminal comes once and takes everything he can at one time.  But Alzheimer’s keeps coming back and stealing a little bit of the brain each time. We can lock our homes and install alarms to deter thieves, but at this time there is nothing we can do to deter Alzheimer’s – no definitive test to diagnose it, no medications to slow it down or to cure it.

“Let me give you an example of one way that this sneaky thief is working in our lives.  Al and I have always attended church together, and for most of our married life he has sung in the choir.  Since my voice would empty they church pews in a few seconds, I sit alone while Al is up front.  When we are able to sit together, we always hold hands when we pray the ‘Our Father. That simple gesture of holding hands fills my heart with such love for Al and helps me feel our Lord’s presence among us.

“Over the years we have developed a way to experience that same feeling when not sitting together.  When we begin to recite the ‘Our Father,’ we look up at each other and hold our eyes together for a few seconds.  Without fail, this occurs every time we are in church.  But the past three services have been disappointments for me.  Al has not looked up.  Not even for an instant.  As my eyes stared at him, I tried to will him to look up.  ‘Please, Al, please.’  But nothing.  His eyes remained on his book continuing to recite the prayer. The first two weeks, tears instantly came to my eyes, but last week I guess I had resigned myself to the fact that the robber had stolen those special moments from us, so I didn’t cry.

“But I didn’t give up. Tonight, again I looked up and to my surprise and delight, Al was looking back at me. I was so excited I wanted to jump up, run up to him and give him a great big hug. But, of course, I knew better than to do that.  But what I did was thank God for letting us beat the robber this week.  I don’t know if we will win again or the robber will win, but I do know I will continue to look up at Al and pray that he will triumph over the robber and we will be allowed to experience that special moment between just the two of us.

“So if anyone wants to know who I walk for, I answer for Al who is determined to continue living his life every day to the fullest while doing everything he can to fight this insidious robber.

“Who will you be walking for?”

Thank you again, Barbara and Al, for sharing your story and helping us live better with Alzheimer’s through your strength and faith.

Bonnie

 

Alzheimer’s Association 24/7 Hotline

Dear Friends and Family,

Elizabeth Cook, the Alzheimer’s Association’s local chapter information and referral coordinator, shared with me today some useful information about the Association’s 24/7 Hotline:

The Alzheimer’s Association 24/7 Helpline provides reliable information and support to individuals with memory loss, their caregivers, health care professionals and members of the general public. Callers can dial toll-free anytime day or night, 1.800.272.3900. The 24/7

High trained and knowledgeable staff can help callers with:

• Understanding memory loss, dementia and Alzheimer’s
• Medications and other treatment options
• General information about aging and brain health
• Skills to provide quality care and to find the best care from professionals
• Legal, financial and living-arrangement decisions

The 24/7 Helpline also features:

•  Confidential care consultation provided by master’s level clinicians who can help with decision-making support, crisis assistance and education on issues families face every day
• Help in a caller’s preferred language using our translation service that features more than 170 languages and dialects
• Referrals to local community programs, services and ongoing support

It’s a pretty amazing service, available here in Louisville and nationwide.  If your family is facing Alzheimer’s, please reach out and find the information and support you need. And if you’re supporting the Alzheimer’s Association and the Walk to End Alzheimer’s, know that your dollars are helping fund this important service.

Only 19 more days until the 2013 Louisville Walk to End Alzheimer’s! Have you registered?

Bonnie

Today’s Courier-Journal “Community Challenge” Encourages Walk Sign Ups

Dear Family and Friends,

Take a look at today’s Courier-Journal Community Challenge column on the op-ed pages … it’s local Alzheimer’s Association Chapter Executive Director Teri Shirk’s column regarding the story of Veronica Idle. Veronica’s father was diagnosed with Alzheimer’s at age 59.  Here is the link: http://www.courier-journal.com/apps/pbcs.dll/article?AID=2013308050009&nclick_check=1

Bonnie

“Denial is worse than the disease”

Dear Family and Friends,

In a recent Sacramento Bee article, Michael Cozakas was talking about his wife’s diagnosis of early onset Alzheimer’s disease and commented that he believes denial was worse than the disease.  “If you deny, you expect things to change,” he is quoted as saying. “They don’t. They get worse.”

I tend to agree with Cozakas. In any case,  I’m a person who handles crisis by gathering information,  much like my mom in that respect. I can still see her three-inch thick red notebook, filled with medical reports, articles printed from the internet and notes she’d made from phone conversations and doctors’ visits. By the time lung cancer took her life in 1995, she had a record with enough details for a marathon movie series.

When my niece was born deaf, I spent hours online and in bookstores, learning about sign language and deaf culture. I took three sign language classes. Every time I go to visit her (2,000 miles away), I try to brush up on the sign language words and phrases a girl of her age might frequently use.

When we learned that my mother-in-law, Natalie, had Alzheimer’s, I went right to the Alzheimer’s Association website and spent hours there reading the statistics and . Then I bought and read several books, including “Mom, Are You There?” by Kathleen Negri and “Through the Wilderness of Alzheimer’s,” by Robert and Anne Simpson.

I wanted to know what I should be doing; how to make mom’s condition easier for her, and for the rest of us. Later, I needed to know if we should remind her when she forgot that her husband had died, or smile and say that he just stepped away. When drugs were prescribed, I scrounged for information about effectiveness and side effects.  And as we watched her sink into herself – both visibly as her shoulders and head curved toward her chest, and mentally and she lost ability to communicate – I wanted to gauge the severity of her symptoms against a timeline for the disease.

I coped with this difficult situation by using information to direct my path. And I stayed busy – volunteering with the Alzheimer’s Association because we didn’t live near mom, and listening to my husband as he spoke about his sadness.

How do you cope? What makes it easier for you to get out of bed when someone you love is changing right in front of you and there’s nothing you can do to stop it?

If you’d like to join me in volunteering for the Alzheimer’s Association, we’d love to have you. It’s going to take a lot of us in the coming years to put an end to this disease. Please comment on this post, email me at bhackbarth@guthriemayes.com or visit the Alzheimer’s Association at www.alz.org.

Bonnie

Team week challenge for Wednesday: update your team page with a story or photo