Barb’s Buzz – Keep Active

purple-canoe-club-at-annual-meeting

(Members of the Purple Canoe Club at the Alzheimer’s Association Annual Meeting on November 15, 2016. Milwaukee Journal Sentinel columnist Crocker Stephenson (top row, third from the right) posed with group.  Stephenson has told many of their stories.)

It is important for those with early- stage Alzheimer’s disease (like me) to keep your brain as active as you can. I still consider myself to be a journalist and write a monthly blog for the Alzheimer’s Association.

Attending events is also an important way to remain active too. My husband and I attend many Alzheimer’s Association’s events and meetings. We recently attended the Southeastern Wisconsin chapter’s Annual Meeting and Awards Banquet at the US Bank Building in downtown Milwaukee. I ran into a journalist friend of mine, Crocker Stephenson, who writes for the Milwaukee Journal Sentinel. He was at the event to receive an award for his great coverage of Alzheimer’s disease. Crocker reads my blog faithfully and is waiting for me to write my next one. I feel honored that he likes to read my blog.

I have been very busy lately. My husband Dan and I flew to sunny Palm Springs California to visit his brother. It was a lovely visit. Traveling with Alzheimer’s can be challenging but everything went well! Even our flights there and back were pleasant. As wonderful as it was, it is always nice to be home again.

After returning from our trip, we met our daughter Julie and granddaughter Sophia for dinner and got caught-up with each of our busy lives. December will be busy too with the holidays – Happy Holidays everyone!
~Barbara Cheek Johnson is a journalist with early-stage Alzheimer’s disease~

Barb’s Buzz – Safety Comes First with Team Work in the Kitchen

I have always loved to cook, and did most of my cooking on an electric stove. Safety in the kitchen has always been important to me, and is even more critical now that I am living with Alzheimer’s disease.  The condo we moved to several years ago has a gas stove and oven, and that open flame has put me out of my comfort zone.

My solution – I let my husband Dan do the cooking.  And I am now the prep-chef and salad girl.  We work together as a team, just like they do in a restaurant.  Chef Dan uses a skillet on the stove top or slides it into the oven.  My job is to tear the lettuce leaves, dice the vegetables, make the salad, and choose a salad dressing.  I like to make my salads interesting. I like to be creative and add fruit, nuts, celery or cheese with the lettuce. I also like to keep an array of salad dressing in the refrigerator to make it interesting.

I’m still involved with meal planning and I like to go with Dan to the grocery store to pick out what we need. The two of us make a grocery list before we shop for the ingredients. Here`s an example of how we work together; Dan had a taste for chili for dinner. So he stopped at the market to pick up the ingredients. I helped with dicing the celery. Dan browned the ground chuck and put it in the crock pot.

And since cooking and eating always involves set-up and clean-up, I’m involved there too.  I set the table, clear the table and load the dishwasher.  It`s what I call teamwork with a smile!

2911_Alzheimers-1005 Barb Johnson small

~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease~

Grieving is Fatiguing

 

Caregiving… One of the most rewarding yet challenging jobs that we are called upon to do. Yet as we provide love and care for others, our own needs are often left unanswered and ignored. When our loved one dies, the emotional pain and toll we face is even greater as we begin our grief journey.

 

Every day you are called upon to listen, to support, to take care of and to fix many of your loved ones concerns and issues. It often doesn’t matter that you may be having a difficult day and many times you can have several major issues all occurring at the same time. Everyone wants a piece of you. Changes of hopes, dreams and future plans are an everyday reality. On top of this, you are grieving as the person you know, loved and/or remembered is no longer present with you, emotionally or physically. These are the difficult days of grief.

 

Keep in mind that grieving is fatiguing. Often, after the death of a loved one, you feel lost, like a ship without an anchor. You are working on redefining your roles as to who you are. Am I still a wife/husband, a mother/father, a grandmother/grandfather, a daughter/son? Where do I fit now that my loved one is no longer with me? Each person’s grief is unique and does not fit neatly into a box. Grief is fatigue, insomnia and aches and pains. Grief is sadness, anxiety, guilt, anger and jealousy. Grief may be feelings of guilt because you are relieved of your responsibilities. Grief is sleep disturbances and dreams. Grief is screaming/crying or complete numbness. Any of these reactions are normal and expected. Grief is often described as an emotional roller coaster with highs and lows along the way. Grief has no right or wrong way and it is never the same for any two people. There is only your way to grieve. Grief is unique and normal to you! At this time, it is essential to give yourself “permission to grieve” and to “feel” whatever it is that you are experiencing. Grief is not something we “get over.” You can not go around grief, in the middle or over it, you must go through grief. Coping with death is a personal experience and something no other person can share in exactly the same way. Pain and tears become you. Remember that tears are not a sign of weakness, but a sign of strength. Tears speak to your feelings about your loved one and about the relationship that you had.

 

A way that you can assist yourself is to find others who can relate to your grief. Seek out a support group. The beauty of a support group is finding others who recognize what you are feeling. You are not alone…you are not going crazy and you can survive! Seek out emotional nourishment…hugs…laughter and a sense of humor all help you cope and replenish your emotions so you can start again the next day. As a caregiver, know that you did the best you could do at any given time. Do something nice for yourself – read a book, take a long walk, enjoy a bubble bath or even indulge in a hot fudge sundae! Give yourself permission to be less than perfect. Grief is a process, not a one time event. Time, sharing and connecting with caregivers who also have experienced grief can help you define a “new normal.”

 

lori-stahl
~Lori Stahl is a Certified Grief Management Specialist and Family Services Coordinator at the Alzheimer’s Association, Southeastern Wisconsin

Barb’s Buzz – My Packers Game Day Adventure

barb-and-dan-johnson-packers-game

Barb and Dan Johnson (front row right) watch Jordy Nelson go for the Touchdown.

 

Alzheimer’s disease makes you forgetful.  My husband, Dan, and I drove to Green Bay recently for a Green Bay Packers football game.  Dan reserved great seats at ground level in the end zone. He did this for me, because since being diagnosed with Alzheimer’s I have experienced extreme dizziness at elevated heights.  I feel tipsy topsy and dizzy like I am going to lose my balance and fall.

I loved our lower level seats! We were right in front of the cheerleaders who kept me entertained.   All the cheerleaders, male and female, were awesome and very athletic.  The female cheerleaders stood on top of the guy’s shoulders to cheer!  Then they would jump down and do the splits – so athletic!  Between the cheerleaders and the Packers playing right in front of me, I was very entertained. It was a great day and the Packers WON.

On the way home Dan and I stopped at a restaurant for dinner.  It is a favorite restaurant for Dan, one that he likes to go to after Packer games.  We have obviously been there enough – the waiter remembered us!  We had a great dinner.

Before we left to drive home, I stopped in the ladies room.  When we were almost home, I remembered that I left my cell phone on the shelf in the bathroom.  Dan immediately called the restaurant.  Luckily the waiter found my phone and shipped it back to me in Brookfield.

I know this can happen to anyone, but I am convinced that my losing the phone is mostly due to the Alzheimer’s disease.  I am getting very forgetful, and this does not make me happy.

~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease~

Barb’s Buzz – Socializing with Alzheimer’s

Barb Johnson and Kipton

(Barb, also known as GranB, and her grandson Kipton)

My husband and I had three social events recently.  My husband Dan ‘s cousin’s son got married this summer in Saint Paul, Minnesota. We went to the wedding. The second social event involved a friend and family outing in Door County.  The third was celebrating my cousin’s husband’s 70th birthday.   And then there was a recent lunch with a girl friend from a Bible Study Group that I used to belong to when we lived in Delafield.

The outdoor wedding was a bit tiring.  It was a long drive to Minnesota.  Dan and his brother did all of the driving.  We stayed at a nice hotel in Saint Paul. The wedding ceremony and dinner was at an outdoor venue. It was a long drive, and that, combined with the hot weather experienced at the wedding venue, was a lot to handle for someone with Alzheimer’s disease.

We also recently vacationed in beautiful Door County.  We drove to the Door.   Our son and his family were with my husband and me.  We also met friends and their families in the Door.   Everyone seemed to be having a good time connecting…. except for me.    I felt left out.  Everyone seemed to ignore me.  I felt very alone.  I asked myself, “Were my friends afraid to talk to someone with Alzheimer’s disease?”  Did they think they would catch the disease?  Dan even noticed that our old friends were not embracing me at all.  So I started enjoying myself in the pool with my youngest grandson, Kipton, who was learning to swim.  I started teaching him to swim and relax in the water with his grandma who he calls GranB .  That’s me.  One of our guy friends happened to be at the pool with his son.  He traveled all the way from Australia for this reunion.   He saw me in the pool teaching my youngest grandson how to swim.   It was so nice to run into a friend from Custer High School.  My husband Dan was also a friend of his at UW- Oshkosh.

As the vacation group was getting ready to part ways, I asked myself again,” Why did my old friends treat me like an outsider?” I may have Alzheimer’s disease, but I am Still Barb.   Later, on our way home, I thought about friendships in general and how important it is to have them, and to be invited to things – weddings, parties, and lunch dates.  People with Alzheimer’s need to stay engaged and keep their self-esteem.  The next day we attended our early-stage Alzheimer’s support group meeting at the Alzheimer’s Association office.  And it reminded me of the incredible new friends we have met on this Alzheimer’s journey.

~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease~

Barb’s Buzz – A Real Friend Stays By Your Side When the Rest of the World Walks Out

Johnson, Zacharias, Wallrath
(left) Barbara Cheek Johnson, Lynne Ebert Zacharias, Jeanne Ketterer Wallrath

Friends are so important, especially as you navigate Alzheimer’s disease.  It is a journey with many unknowns.  And you need true friends.  Life- long friends.  I am lucky – I have those.

I just hosted an incredibly fun “girlfriends sleepover weekend” with three of those friends in June.  We spent three wonderful days together.  The thought of four women taking over the house sent my husband, Dan, to Chicago to visit the grandkids! But we girls all had a fabulous time talking, eating, shopping, talking more, going to restaurants, and chatting on the patio.  We did a lot of talking.  Well, we had a lot of catching up to do.  I tire easily at night because of the medications I take for my Alzheimer’s.  But the girls all understood and let me retreat to my bedroom when I needed to.  That is real friendship!

I met my first life-long friend, Lynne Ebert , in the alley behind our Milwaukee homes.  We were both three years old.  She lived on the other side of our city block.  One day my mom gave me some flowers to plant with a little shovel along the side of our house.  As I was planting, I looked up and there stood Lynne.  She was on roller skates with another little girl.  Both girls rolled up and helped me plant the flowers.  After that, I asked my mom if I could roller skate around the block with them.  The rest is history.  The new girl, Jeanne Ketterer, and I became best friends that day too.

Lynne, Jeanne and I did everything together.  We walked to 35th Street School in Milwaukee every day.  Later when we went to Edison Junior High School, we met another girl named Jeannie Minikel.  She lived near Edison and we often stopped at her house after school to get a treat.  The four of us were inseparable, and went on to attend Custer High School.  Jeannie Minikel and Lynne Ebert made the cheerleading squad.  Jeanne Ketterer and I became Custer Rockets, a dance team that performed at football and baseball games.

After high school we split up, going off to different colleges.  But we never lost touch.  In fact, when I started dating my husband Dan, I reached out to Lynne to see if she knew him as they both were attending the University of Wisconsin-Oshkosh.  She did know him and gave me all the lowdown!

Over 40 years later we are still best friends, having had our 3rd annual girlfriends weekend.  Jeanne Ketterer traveled all the way from Denver to come.  Over these many years we’ve been through a lot collectively – death of a spouse, a divorce, and now me with Alzheimer’s.  But it hasn’t changed our love or acceptance of one another.  Our friendships are stronger than ever.

Real, true friends are important.  Cherish those relationships.  Nurture them.  They can comfort you in some tough times – even Alzheimer’s.

A friend knows the song in my heart and sings it to me when my memory fails.     ~     ~ Donna Roberts

~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s~

Johnson, Zacharias, Hein

(left) Barbara Cheek Johnson, Lynne Ebert Zacharias, Jeannie Minikel Hein

Barb’s Buzz – Advocating on Capitol Hill – Our April Adventure

My husband Dan and I were one of the 1200 advocates in attendance for the Alzheimer’s Association 2016 Advocacy Forum in Washington, DC, April 4-6.  Dan and I packed for our trip the night before.   Our friends in the Purple Canoe Club, Harlan Mueller and Steve Schulz, arranged to help us with transportation to the Airport and back.  Other friends from Southeastern Wisconsin traveling with us to attend the conference were  John and Peggy Brandt, Mike and Julie Grassel , their daughter Stephanie and her fiancé, Mark.

It was a pleasant flight to Washington D.C.  We all stayed at the beautiful Wardman Park Marriott Hotel. We attended meetings together.  Stephanie Grassel gave a speech from the heart about her Dad living with Alzheimer disease.  It was very moving. There was not a dry eye in the house.  She received a thundering round of applause.  Dan and I thanked her from the bottom of our hearts for her speech and heart felt delivery.

We had a nice dinner after a long day spent on Capitol Hill, visiting with legislators, sharing the stories of our Alzheimer’s journeys, and advocating for more research funding.  The restaurant was a short walk from the hotel.  It was good to be here in person for the conference.   However I, and others in our group who are living with Alzheimer’s, needed to take time to rest as necessary.

On the last day of the  conference  Dan’s cousin, his wife and his sister joined us for the closing speeches. We then enjoyed dinner at their lovely home in Bethesda Maryland.  The trip went quickly and before you knew it, we were flying home with the rest of our pals.

~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease. ~

Barb’s Buzz – Alzheimer’s Advocacy Day

My husband Dan and I drove our friends John and Peggy Brandt to our State Capitol in Madison, Wisconsin for Advocacy Day on March 17.  It was a very windy day to climb the “Hill” as the Capitol is referred to in Madison. It felt good to get inside and out of the wind.

We met up with over 100 other advocates from the Alzheimer’s Association at the Capitol Lakes Retirement Center.  There was a warm welcome by Kari Paterson, Executive Director of the  Alzheimer’s Association of South Central Wisconsin. Tim Harrington, Development Coordinator, Workplace Relations and Advocacy Focus for the Alzheimer’s Association of Southeastern Wisconsin gave a recap of advocacy efforts in 2015. By the time the day was coming to a close, I was  exhausted  ) ;  I just wanted to curl up and nap.

From the hand out information I was given, I found this statistic to be impactful:  More than 28 million Baby Boomers in the United States are expected to develop Alzheimer’s disease between 2015 and 2050.   My hope is that the medical community will continue to research this disease so that the next generation will be free of it.

~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease~

Barb’s Buzz – Be Hopeful and Thankful

Since I broke my right wrist from a slip and fall incident on a slippery, snow covered sidewalk last winter, I am afraid to venture out in the winter. I know that I will remember to be more cautious.  But I think about myself and my ability to navigate safely as Alzheimer’s disease progresses.

I am hopeful that with research our medical community can continue to develop medicines to keep those of us with Alzheimer’s and related dementias alert and help keep our ability to remember. The medical research community welcomes people to participate in studies.  I have been a research participant since I was diagnosed with Alzheimer’s disease. I am currently enrolled in a longitudinal study through the Alzheimers Disease Research Center at University of Wisconsin-Madison. I feel like I am contributing to the research to find a cure for Alzheimer’s disease.

I must admit I am thankful for climate warming this winter. The roads and sidewalks are easier to navigate. They are safer for driving and walking. The meetings and Memories in the Making art classes at the Alzheimer’s Association provide a safe haven to share stories, be creative and develop friendships for those with Alzheimer’s disease and their partners. The art therapy classes at Donna Lexa Art Studio gives those with Alzheimer’s disease and other disabilities a safe haven to socialize and be creative with the gentle guidance and teaching art forms with caring art therapists.

The friendships that my husband and I have made are an added gift to our lives.  All I can say is that the Alzheimer’s Association is a safe haven. We are so grateful for the support and the friendships we have made.  I feel hopeful and thankful and gratified for the support.

2911_Alzheimers-1005 Barb Johnson small

~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s~

For more information on how to participate in Alzheimer’s research and clinical trials, visit TrialMatch

Barb’s Buzz – The Little Things That Make the New Year Bright

As my husband Dan and I were putting some of our Christmas gifts away in bedroom drawers, we came across something that our grandson thought he had he lost.  It was the baseball glove that our grandson was wearing when we were playing ball with him at a local park.

My memory is a bit fuzzy.  When it was time to take our grandson back to  his family  in Chicago, we couldn’t find the baseball glove.  We looked all over the house for it.  No baseball glove.

We went back to the park to look for it.  No glove.  So we decided to buy him a new glove.

As Dan was looking for something in one of the drawers in a guest bedroom , lo and behold he found our grandson Ian’s original baseball glove that we thought was lost forever.  We were amazed  and smiled at each other shaking our heads.   So we decided to send him his original baseball glove to him in Richmond, Virginia where his family was celebrating Christmas with his other grandparents.   He will be surprised as we were when what was lost was found.

I have a little prayer that my father James Anthony taught me when I would lose things.  It goes like this:

James Anthony.

James Anthony.

What ever is lost.

Let it be found.

And that’s my little gift to you, my readers.  May our doctors find a cure or medications to keep those with Alzheimer’s disease going so we can find our gift of knowing what to say, what to do, and where to find things once again.  :)

Happy New Year.

Barb in New York

~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease.~