Barb’s Buzz – My Research Study Journey

Recently my husband and I drove to the University of Wisconsin Hospital in Madison for a day of Alzheimer`s testing. I have been enrolled in a study there, through the Alzheimer`s Disease Research Center ( ADRC ), since the first year of my diagnosis in 2012.

I spent the day going through a series of tests, both mental and physical, to see how I was doing.   A young man…one of the researchers…had me go through a series of games as a test of my ability. An example would be showing me a large picture filled with people and things and surroundings, in many different colors.

He had me look at the painting for a few minutes and  then asked me to tell him what I saw in the painting. He repeated it again, hours later, to see how many of the items in the picture I could recall.

They gave my husband, Dan, and me a nice lunch. Further testing took place; for example,  a blood draw, and lots of questioning. The recall games went on until I was exhausted.  Even though it was exhausting, I will be willing to come back again next year, for the sake of research.

I hope others will do the same for Alzheimer`s research, and hopefully , to someday find a cure. If you are interested in finding an Alzheimer’s research study near you, sign up for Trialmatch, a free clinical studies matching service that connects individuals with Alzheimer’s, caregivers, and healthy volunteers to current studies.

Barbara Cheek Johnson is a journalist living with Alzheimer’s disease.

Barb’s Buzz – The Challenge

The  Alzheimer`s Association recently sponsored an outing to a Milwaukee Brewers game against the Cincinnati Reds. Due to the Brewers generosity, the tickets were free of charge, and about five hundred of us showed up on Alzheimer`s Awareness Night, and we did our best to Paint The Park Purple.

Oh by the way, the Brewers won, which made it even better.

I was really looking forward to going to this game, even though I knew it might be difficult. Ever since I was diagnosed with Alzheimer’s, I`ve had a fear of heights. This seems to be getting worse lately. At Miller Park, the seat locations, and the openness of the building gave me the sensation that the seats were up very high, and that I would fall.  Once I was situated in my seat, next to my husband Dan, and surrounded by my “Purple Friends, “ I was able to watch the game and also to control my fear of heights.

I`m really glad I made the effort to go to the game. It was a lot of fun.

Barb’s Buzz – The Loss of a Dear Family Member

My husband’s mother passed away recently. Pat lived at Linden Grove Nursing home, located in Waukesha, Wisconsin for eleven and a half years.  The funeral took place in Saint Paul, Minnesota.  She was born and raised in Saint Paul, so that was where she requested to be buried.  Pat passed away on June 27^th.  We drove to Minnesota on Thursday, July 6^th and the funeral was the next day.  We had a get together with family at Dan’s cousin’s Tammy’s house on Friday night.

Pat was 94 years old. The family always called her Grandma Pat or Mor Mor, which in Swedish means Great-Grandmother.  Pat was always very proud of her Swedish heritage.  She was a widow when I met her.  Pat had chronic back problems, so I introduced her to my family’s doctor.  After a few visits, the two of them became friends.  She also lived with manic depression, which was difficult for her children growing up.  I always knew that she liked me and enjoyed our visits.  I always felt that she was happy to see me.  When I told her that I was diagnosed with Alzheimer’s disease, she sympathized, but never made me feel like I was different.  She was always welcoming to me and would say, “Oh Barbara, so good to see you.”  She was also very fashion conscious and would inquire, “Oh Barbara.  Is that a new dress?”  I always had a good relationship with her.  I will miss her.

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

Love Endures on Valentine’s Day in the Face of Alzheimer’s

 

Too many Valentine’s Days will be spent like Elaine and Marty Schreiber’s.  Marty will bring Elaine flowers. He also brings them other days, too, because she loves them. The Schreibers might dance, because Elaine loves to move to the music of her youth, and Marty likes the moments of joy that it brings to his wife of 55 years.

There’s one major difference in today’s Valentine’s Day celebrations than all those years ago when they met in high school, however. Sometimes Elaine doesn’t know that Marty is her husband. Diagnosed with Alzheimer’s disease nearly 12 years ago, Wisconsin’s former First Lady and her husband, the former Governor, live differently than they imagined they would at this stage of their lives. They were an active couple that enjoyed their four children and grandchildren. They biked, boated and entertained. Early in their marriage, Elaine helped Marty get elected to everything from class president to lieutenant governor, and in campaigns for other offices. Win or lose, she remained by his side. Marty said Elaine never let him feel defeated.

The Schreiber’s love story is chronicled in a book that Marty, along with co-author Cathy Breitenbucher, wrote as a guide for caregivers. My Two Elaines; Learning, Coping and Surviving as an Alzheimer’s Caregiver (Book Publishers Network), is as much a diary with raw feelings and humorous anecdotes as it a frank chat with caregivers and individuals who may be in the early stages of the disease.

In a loving, yet frightening paragraph from the book, Marty Schreiber wrote, “With my first Elaine, we shared love, hope, happiness and dreams. As my first Elaine became my second, the dreams turned into nightmares because I was losing her. Happiness becomes hopelessness. Grieving and health issues, including depression and anxiety, replaced joy.”

“I greatly miss my first Elaine,” he said.  “My heart broke as she left me. It was so painful as this ‘new normal’ enveloped us with Alzheimer’s destroying the memories we created over the decades.”

Marty Schreiber says he unequivocally loves Elaine, but in a different way now. He says he still wants to make her happy, even when she gets confused, anxious or simply doesn’t remember things that many of us take for granted. “As your spouse’s Alzheimer’s progresses, you will face conversations that simply break your heart,” Shreiber said. “You can’t take it personally when your loved one can’t remember names and events. We share unexpected moments of joy when we dance, talk about whether her father approves of me (he’s been gone several years) or tells me she’s starting to love me more than her husband (what a guy he must be!), yet I wish I gave her many more of those moments early on. I failed to realize early enough that I had to enter her world. I hope others that endure this horrible disease learn from the mistakes I made.”

Marty Schreiber has mostly made peace with the situation. He realized after 10 years he could not care for Elaine by himself. She now lives and is surrounded by educated and experienced long-term care professionals. He visits most every day and cherishes the hours they have – and had – together.

Elaine Schreiber won’t know Valentine’s Day from Christmas or July 4^th, but the former first couples’ love endures. Simply in a different way than how it blossomed and grew all those many years ago.

Learn more about the book My Two Elaines; Learning Coping and Surviving as an Alzheimer’s Caregiver here

(Marty and Elaine sailing in 1985)

 

 

Barb’s Buzz – With a Little Help from My Friends

I hope you enjoyed your holidays.  Holidays can be stressful for someone living with Alzheimer’s, but mine were very successful thanks to some dear helpers!  Our kids and nieces and nephews helped Dan and me during the holidays.

My daughter in law Kelly took me shopping for mens sweaters and pajamas for my husband Dan.  She was a God send.   My hubby loved every thing we selected.  I am so glad she helped me shop during the sales and before the last minute shoppers swarmed the malls.

Thanks to my helpers, I was prepared.  We entertained our family and friends.   I was blessed to have a daughter in law, nieces and my daughter to help in the kitchen too with food prep and clean-up.

I count my blessings each day for my family and friends. And I want to remind everyone, that you don’t need to wait until the holidays roll around to be helpful to a caregiver or someone living with Alzheimer’s.  During 2017, I would appreciate it if everyone would consider reaching out to someone who needs assistance and give that gift of help.  It will make a difference.

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

 

Barb’s Buzz – Keep Active

(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!

~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 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 (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, 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~