Illinois Chapter Blog

On Tuesday, November 27, people across the nation will come together to make a difference in the world around them. Giving Tuesday is a special call to action which creates a national “day of giving” around the annual shopping and spending season. We encourage you to take part and do a little big thing for Alzheimer’s care and support in Illinois. Your tax-deductible gift helps fund our free programs and services for the 220,000 Illinois residents living with Alzheimer’s disease and the more than 590,000 Alzheimer’s caregivers. In this article, we feature Mary Jane Davis, whose grandson, Lincoln, gives to the Alzheimer’s Association Illinois Chapter to honor and remember Mary Jane’s father.

Our Story

My father, Lincoln’s great-grandfather, was a wonderful man.  He was a hard worker, loved his family and loved life in general.  He retired at age 65 but continued to work long into his 70s. He always took care of us and helped others in the community when the need arose and he had the ability to do so. He loved to garden and gave away the extra produce he harvested from his big garden, the “truck patch”, as he called it, and was always willing to help someone change a tire, start their car, clear away snow or whatever the need might have been in our small town.

In 2006, mom noticed some lapses of memory.  He would go to the grocery store with a list and return much later with only a few items, none that happened to be on the list.  The gentleman that he worked for part-time noticed that he wasn’t completing the tasks he was assigned.  As is the case in many families, mom said nothing to us about the changes – hoping it was just a part of aging.  We lived about 140 miles away from my parents, and when we visited he seemed fine initially. As time went on, it became evident that something was wrong. His official diagnosis of Alzheimer’s was made in 2007.  Mom made many changes at home to keep him safe, removing the knobs from the stove and oven and disconnecting the microwave to keep him safe.  He lost his ability to work and drive, but continued to do chores around the house with some direction.  Mom was determined to keep him at home and we were able to get a home health aide 3 days a week to assist with dad’s personal care and help mom around the house.

As the disease progressed, he could feed himself most days and walk with some assistance – but other than that he could do nothing for himself. Other than the Alzheimer’s, dad was in pretty good health.  Mom took very good care of him, but we saw the exhaustion and worry very apparent in her.  She was diligent in trying to keep things as normal as possible for him at home and vowed not to put him in long-term care.  In December of 2013, he was hospitalized with pneumonia and congestive heart failure. Even though he recovered, he was very weak and it became clear he would need to go to a facility for rehab.  He entered a long-term care facility on January 3, 2013 and he passed away there on December 10, 2014 at the age of 89.  We visited often and mom was there most days.  In spite of the memory loss, his temperament remained the same. The staff loved him and he came to love them.  Every visit ended with him saying “I don’t know why I can’t go home” and a difficult explanation to try to help him understand.  He knew us most visits but would always greet mom with “There’s my wife, she’s the best wife in the world!” 

Even though it was so difficult to see this life-altering disease rob dad of so many great memories, we were blessed in many ways.  He was happily confused and remembered mom to the end.  We were also blessed to celebrate their 65^th wedding anniversary in June of 2014, and had a holiday celebration with all the family in attendance two weeks before he passed. The nursing center provided wonderful care and transported him to the family events.  What a gift!

The Lemonade Stand

We are blessed to have our three grandchildren visit us for a week during this past summer.  The lemonade stand dates back to the summer of 2011.  Our granddaughters were eight and five at the time. They had lost their paternal grandfather earlier that year to metastatic lung cancer.  Our daughter and son-in-law have a very strong faith as does the entire family and the girls were raised from a very early age to have a servant’s heart.  As a result of their grandfather’s untimely death, they wanted to do something to raise money for the cancer society and come up with the idea of a lemonade stand.  My husband, their grandfather, is a very gifted craftsman and built a lemonade stand for the girls to use when they arrived.  We opened the lemonade stand one afternoon during their summer visit and they raised $65 for The American Cancer Society.  It was a very proud moment for us all.

Fast forward seven years and the lemonade stand was resurrected for another great cause.  Our grandson, Lincoln, has seen pictures of the lemonade stand and the lemonade stand itself in storage over the past couple of years. He loved his great-grandfather, calling him grandpa, and visited him with his family whenever he could.  He loved to sit on dad’s lap and they would play with some of the interactive toys and games we had purchased for dad.  When we visited him in the nursing home, Lincoln liked to push him in the wheelchair.  When he talked about wanting to sell lemonade he said he wanted to do it for “people who lost their memories like grandpa did”.  When Lincoln came to visit us, he helped set up the lemonade stand and helped squeeze lemons to make the lemonade.  His sister made the flyers and we took them around to people in the neighborhood.  The lemonade stand raised $110.00 for the Alzheimer’s Association.

Lincoln told us in his own words that he “did it so people who lose their memories could be happy and feel better and remember their memories.  The money will help do things to make people like grandpa feel better.  Other people should do what I did so people like grandpa remember.  I did this because God teaches us to help people and love them and the Bible tells us that.  It makes me feel good to help people.”

We donate to the Alzheimer’s Association because we personally witnessed this life draining disease in dad and the battle that mom fought every day to care for him and keep him with us. I also am blessed to volunteer at Apostolic Christian Restmor in Morton and encounter people every day with various stages of this mind-crippling disease.  It is so obvious that the need is great to raise money for care improvement whether that be pharmacologically or personal care and to support research for the development of a cure.  If this little six-year-old boy with such a big heart can raise that much money in a few hours selling lemonade, just think what can be done in other small ways or on a much larger scale to have an impact. My prayer is that through this association, individuals and families can be spared the pain and loss resulting from this terrible disease

 

By: Mary Jane Davis

Hello, my name is David Myers and I am the primary caregiver for my wife, Cheryl.  Cheryl was diagnosed with Alzheimer’s disease in 2012 after a couple of years of not knowing what was happening to her. The trouble with the diagnosis was that Cheryl was only 47, and dementia wasn’t even considered until things got really bad.

There are issues when your spouse can’t function alone and the family’s world is turned upside down. Cheryl was ok to live by herself for about 18 months after the diagnosis, but we lived in the country and I worked 30 minutes from where we lived. So we sold our dream home and moved to a smaller home in town where I could get to Cheryl quickly if need be.

I had ADT come in and install alarms if doors or windows were opened and they provided a camera so that I could watch to see what she was doing while I was at work.  I didn’t realize the stress I was carrying until my mom offered to stay with Cheryl.  My parents only live 40 minutes away and I start work at 6:30 a.m., so mom would come over on Sunday night and live with us. She took care of Cheryl during the day while I worked, and then stayed overnight so that she didn’t have to drive back to our house the next day. Mom did this for over a year until we were able to hire personal assistants to take care of Cheryl while I worked.

A long time ago, when our children were little (we have two – Kara who is married to Ryan and lives in Indianapolis and Kevin who lives in West Chester, Pennsylvania), we were told that raising a child takes a village. Being a caregiver takes a village as well. We have relied heavily on our church family who has provided over 400 meals, lots of visits and volunteer time to sit with Cheryl – allowing me to get some windshield therapy. (Windshield therapy = going for a motorcycle ride to enjoy the freedom of not having anyone needing you for an hour or two).

I would like to say that hiring the assistants solved all of our problems, but in my opinion, nobody could take care of Cheryl like I could. I struggled with allowing someone to come in and care for her, and it took several months for me to let someone else to care for her in ways that I couldn’t. I had no idea that I was a control freak, but the longer we are on this journey the more I realize that I want things a certain way, and I like to have things go my way. Things stopped going my way in July of 2012 when a nurse said to me: “I am so sorry for what you are about to go through”.

The nurse was trying to tell me that it was going to get worse before it got better (if it really ever does). You see, I married the woman of my dreams. Cheryl and I met at church camp where we both worked for the summer. Long story short, we fell in love and married after I graduated from college. We truly had the perfect marriage. You may be wondering why this is important… Well, I have had several people tell me that they probably wouldn’t be able to do what I do for her. I don’t understand this way of thinking because I made two promises the day I married her.  I promised her that we would be together in sickness and in health until death do us part. When I made that promise, I meant it. I may have only been 22 years old, but I knew what it meant to make a promise – and that is what I am doing. The second promise I made was to a man that loved Cheryl more than a father could. He leaned into my ear in the receiving line and said: “you better take care of her.” I remember that day like it was yesterday, and I am doing everything I can to keep that promise to him.

I have done many things to keep Cheryl comfortable and happy through this journey we’re on together. If you told me before the kinds of things I’d have to do for her, I would have said I couldn’t do it. But I did do them, and I have overcome things that I would’ve struggled to do for anyone else. After 31 years, I truly believe that there is nothing I wouldn’t do for her.

For those people who are on the front end of the diagnosis, let me share a few things that I have learned both through my experiences and from others observations of our journey.

• Laughter truly is the best medicine.  Find the things that make you smile because there will be several things that make you sad, angry, confused, emotional and lonely.
• People will always ask “How are you?”  You will have about five seconds to determine if this is a generic question where “fine” will work or if they want to know how you are really doing.  You need to be ready to answer people when they ask the question. If you are not prepared you might tell an executive about Cheryl’s bowel movements before you realize what you are saying because that is what is on your mind and end up sharing way too much.
• Friends will ask “what can we do for you?”, “what do you need?”, and “are you taking care of yourself?”
  • I struggle with these questions. I am the one that takes care of my family, and now that I am on this journey. I have realized that I can’t do this on my own.
  • Asking for help is a problem I have. I believe it is called pride. You know when this started happening; I truly believed I had so many tokens of help.  Each time someone gave me help one of the tokens was taken out of the jar. Since I don’t know how long this journey is I was afraid I would run out of tokens. Guess what?  We are in year six and there are still tokens in the jar and our church, friends and family are still asking these questions.
  • I still struggle with asking for help, but there is a website that the Alzheimer’s Association provides called “Lotsa Helping Hands” that allows me to post things I need help with and it goes out to everyone who at one time or another has asked one of these questions. We named our page Cheryl’s Helping Hands.
• Everyone (including myself) wants to know what the prognosis is. This is the answer I seek every day. When I talk to others who have been on this journey or are on this journey now, I compare their story with mine and try and figure out just where Cheryl is and how much time we still have together. Hospice came in three months ago and her decline is more obvious now. Hospice has been awesome at taking some of the caring responsibility away and tracking her progression. They are the partner I was looking for during this journey.  They can’t tell me what I want to know because no one can, but they are now on this journey with me and are helping me make the decisions that I was putting off because no one was holding me accountable.
• When will she stop knowing who you are?  This is what everyone thinks about when they hear about Alzheimer’s.  I was so afraid of the day when she would not know who I was.  That day came and went so quickly, but people still ask. My answer has always been: “I don’t know if she knows me or not but she trusts me.”  And I know that this is still true to this day because she allows me to do everything for her without any pushback.
• Crying is ok! Purging your emotions is better than keeping them inside.
• What will this do to you financially?  I don’t know. I prepared for the worst and hoped for the best.  There are not a lot of options for someone her age that has Alzheimer’s.  It is extremely difficult because I have to work full time, but I have found help. Early on, I worried about the financials, now I worry how to say goodbye.
• Why Cheryl?  Why Us? Why Me?   I don’t know, but I have a feeling that I am supposed to take what I am learning and share with others.  My Lord promises in 2 Corinthians 1:3-5 that He will come alongside us when we go through hard times, and before you know it, He brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.

I will close my story with the things I wish I knew about at the beginning of the Alzheimer’s journey:

1. The medication will cause weight gain and does not cure Alzheimer’s.  Nothing does.
2. Tell people what is happening.
3. The Alzheimer’s Association is a huge help.
4. Get involved in a support group as soon as you can.
5. Don’t keep it in; tell people what is going on.
6. Be honest with yourself and your friends.
7. This is not about you, but it affects you in every aspect.
8. Your friends want to help but don’t know how.  Allow them to help and think of ways to allow them to support you.  You will need them.
9. It is going to get worse.
10. There is no cure. (Yet!)
11. Find something you love to do and find time to do it.
12. Most everybody has been touched by Alzheimer’s. Let them tell you their story.

The holidays can be a challenging time for families coping with dementia. Planning ahead and knowing what to expect can make this time less stressful. It’s also important to adjust your expectations—don’t try to put too much on yourself or on the person with dementia.

Planning ahead 
Communication is key here. If you have people coming in from out of town you may need to clearly communicate with them regarding your caregiving situation, and what the person with dementia is and is not capable of. In the early stages of dementia, your loved one may seem to not have changed very much, but may have trouble with large groups or following a conversation. Telling visitors ahead of time that they can help by being patient, and not interrupting or correcting the person with dementia, will help prevent frustration and hurt feelings.

If the person with dementia is in the later or middle stages, there may be significant changes since the last time the visitors saw him or her. These changes can be difficult to accept, and it can be helpful to prepare the visitors in advance so that they know what to expect. For example, if the person with dementia might not recognize them it can be less hurtful if they understand in advance that this is a part of the disease process.

Don’t take on too much 
Holidays can be stressful even without the added responsibility of being a caregiver. Do not be afraid of scaling back your celebration, and delegate, delegate, delegate. Clear communication is key here, as well. Consider scheduling a conference call with other family members to divide up responsibilities, and to set appropriate boundaries on what you can and cannot do. Consider scaling back to a smaller celebration to avoid overwhelming yourself and the person with dementia.

Focus on meaning 
Look for ways to involve your loved one in meaningful activities that they can enjoy. Singing along with holiday songs can allow people even in the later stages to connect and feel part of the holiday. Looking through photo albums of past holidays and reminiscing with your loved one can be a soothing and meaningful way to spend time together. Perhaps they can help set the table or tie the ribbons on the gifts. Look for ways that your loved one can be a part of the celebration by scaling down activities to a level that is manageable for them.

Celebrating in a facility 
When a family member is in a residential facility, people often want to know if it is a good idea to bring them home for the holidays. Consider carefully if this is wise for you and for the person with dementia. Sometimes changes in routine can be upsetting for the person with dementia, and they may not do well in a crowd of noisy people. Think about joining your loved one at the facility in their holiday celebration.

Take care of yourself 
Be realistic about what you can and cannot do during this stressful time. Caregivers often feel guilty that they are not “doing enough” for the person with dementia and for their families. Holidays can make these feelings even harder to deal with when we have so many expectations about how things are supposed to be. Try to let go of these expectations, and give yourself some quiet time to grieve if you need to. As much as you can, focus on the moments of connection and happiness that you share with all your family members, and give yourself permission to not do it all.

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. We want to honor the 15 million family and friends currently providing care for someone living with Alzheimer’s disease in the United States, including the nearly 590,000 Alzheimer’s caregivers right here in Illinois. In this article, we feature Verda Gochee, who is a caregiver for her husband who was recently diagnosed with the disease. 

“I am a caregiver for my 59-year-old husband, Darren, who was diagnosed with Alzheimer’s Disease two years ago.  I retired from my office job at that time because the neuropsychologist that diagnosed his condition felt he needed 24/7 care. The closest “adult day care” facility to our house was 15 miles away, and in the opposite direction of my job.  I didn’t feel leaving him home alone as viable as we were getting scam phone calls from the “IRS” on a regular basis. I could not be sure he would not give our credit card or bank information to a scammer or let a “bad” person into our house.  I had originally planned to work until at least age 70, but ended up retiring at 65.

We live with our 25-year-old son in rural DeKalb County in a century-old farmhouse that my husband’s family has owned for more than 100 years.  Our son is the 6th generation to live in that house.  We added a first-floor bedroom, bathroom with a shower, laundry and attached garage with an inside ramp to the house last year with the hopes of keeping my husband at home, where he would like to stay as long as possible. 

Darren is usually awake by 2 a.m. every day and wanting to see if the newspaper had been delivered yet.  He still looks at the paper but does not really comprehend as much of the information as he used to.  He is able to dress and shower by himself but, I can see him getting more anxious about these activities.  His day revolves around getting the newspaper, which is delivered at about 4:00 a.m. and the mail, which is delivered about 2:00 p.m. He has lost most of his concept of time, so he is frequently asking if it is time to get the newspaper or the mail.

We have an elderly dog that we frequently take for walks, sometimes both of us and sometimes by ourselves.  We generally shop for groceries once a week and sometimes just go for a drive. We play “Sequence” most evenings.  Sequence is a board game played with two decks of playing cards. He usually matches the correct number and color, black or red, but often mixes up the suits, club for spade or heart for diamond.  Darren does fairly well when playing Mexican Train dominos with a small group of family. The Mexican Train dominos not only have spots but the spots are color coded to make it easier to match the number.  We play dominos with all train lines open. I try to do Suduko and Celebrity Decipher from the newspaper daily.  I read magazines but have found I fall asleep too easily to read novels anymore.

Currently, I am managing the caregiving responsibilities without hired help.  When help becomes necessary, I’m afraid it is going to be difficult to keep paid help, especially in the wintertime because of our rural location.  The probability of being able to keep him at home through the course of this disease now seems very slim.  It will cost several thousand dollars a month to place him in a long-term care facility plus maintain our home. Our savings, which seemed like an adequate nest egg a few years ago, now seems to be waving goodbye as it will disappear quickly when Darren has to be placed in a care facility.”

17-year old Hinsdale Central High School Senior Arya Chawla tells us why she participates in Team Up.

“I wanted to collaborate with my peers and other student leaders to create more awareness for Alzheimer’s disease, and also help in the Association’s fundraising initiatives. It was important for me to make a difference in our communities. My grandfather has been suffering from Alzheimer’s disease for the past 5 years. I was very close to him, as he lived with us throughout my childhood. Now my grandfather lives in India and does not even recognize me or my family when we visit him. His condition has been very devastating for my family. I led a fundraising event called Music Uplifts. This was a music concert where I solicited over 10 professional musicians to perform music to benefit the Alzheimer’s Association. I also worked with the Association to present an education session about Alzheimer’s Association during the concert. It was a well-attended event, and we raised over $3,000 for the Alzheimer’s Association. It is important for our youth to get involved in their communities, and to share their own experiences about Alzheimer’s disease.

Alzheimer’s is not just an “old people’s” disease. It affects the entire family in significant ways. Organizing the fundraising event definitely required time, effort, planning, organization, confidence, and leadership. I learned a lot throughout the process and gained valuable experience. Working with Team Up has been an amazing, positive experience for me. I learned so much about Alzheimer’s and the Association’s efforts to create more awareness for this disease, and solicit more support for its families. It was also great to collaborate with other students from the Chicagoland area to discuss everyone’s ideas for raising awareness in our communities, and for hosting fundraising activities. Finally, I also learned more about the costs associated with Alzheimer’s on our healthcare infrastructure. The Association was very helpful in providing many resources for me to learn about these costs. I also enjoyed learning about Alzheimer’s-related policy initiatives when I met with Congressman Roskam. All of this is a great experience as I aspire to study Public Policy in college next year. “

Team Up is a student-focused fundraiser designed to promote brain health, spread awareness and raise funds through student-coordinated events or activities. It is flexible enough to be an on-going effort or a one-time occurrence and aims to motivate young people to get involved in the fight against Alzheimer’s disease.

For More: http://www.alzheimers-illinois.org/teamup/

For more on Arya’s Music Uplifts program: https://aryachawla.com/music-uplifts

The Alzheimer’s Association® Illinois Chapter invites you to Team Up Against Alzheimer’s. This is a student-focused fundraiser designed to promote brain health, spread awareness and raise funds through student-coordinated events or activities. It is flexible enough to be an ongoing effort or a one-time occurrence and aims to motivate young people to get involved in the fight against Alzheimer’s disease.

Fenwick High School Senior Jamie McCarthy shares her story.

“Team Up is a small group of like-minded teens that put together their own annual fundraisers and volunteer within the association. We are all driven, innovative kids with the common goal of ending Alzheimer’s.

When I was a freshman, my mom was diagnosed with early-onset Alzheimer’s. Though it has been painful, this has pushed me to do as much as I can to raise money for a cure.

I host an annual fundraiser with my hockey team called “Shoot Down Alzheimer’s.’ We do a bake sale, raffle, and play a charity game with all benefits going to the Alzheimer’s Association. We have been very successful, raising nearly $20,000 in just two years.

Starting this fundraiser and spearheading the operation as a teenager has put me at an advantage against others my age. I have learned so much about myself and management, and I feel very prepared for a career. This benefits both the Team Up members ourselves and the cure to Alzheimer’s.

It takes dedication, intellect, and passion to start your own fundraiser. While it requires a lot of work to hold a successful event, people are always willing to help. With the appropriate qualities and support, starting a Team Up event is something any teen can do.

Overall, I think that Team Up has provided me with invaluable life skills and opportunities. Knowing that I am making a difference in people’s lives leaves a good taste in my mouth after each year of the fundraiser. My life would not be the same without it.”

                                                            –  Jamie McCarthy, Fenwick High School

To create your own Team Up Fundraiser,

visit https://www.alzheimers-illinois.org/Team-Up/

Tom Doyle was diagnosed with Alzheimer’s disease and secondary Parkinsonism in 2016 at age 63.

Tom completed degrees in education and counseling from Concordia University and the State University of New York at Brockport, and later received his Doctorate from Northern Illinois University while he worked as a principal of a Lutheran school in the Chicago area.

After receiving his Doctorate, Tom moved to California where he served as a professor of education at Concordia University Irvine and National University Los Angeles until the disease prompted his early retirement. Tom has three children from a previous marriage and four grandchildren. Fourteen years ago he met and married his husband, Levi.

During his final years as a college professor, Tom began experiencing challenges preparing and delivering the coursework to his students. Despite teaching the same courses for decades, Tom was forgetting details, struggling to find words, and losing his train of thought during lectures. His student evaluations reflected a change; after years of high marks, his feedback began to suffer.

Tom began to remove himself from university committees and workgroups, due to feelings of anxiety and inadequacy. During this time Tom was seeing a psychologist, who eventually raised his own concerns about Tom’s repetition and word loss. The psychologist suggested that Tom may have a “cognitive impairment,” and encouraged him to see a specialist.

At home, Levi observed that Tom was forgetting items around the house and would frequently repeat the same stories or questions. Initially, Levi thought that Tom was just becoming more forgetful, but assumed if Tom was still working he must be OK. Only later, did Levi discover the extent of Tom’s difficulties at work.

In 2015, Tom was diagnosed with Parkinson’s and dementia. A year later after further cognitive testing and spinal tap his diagnosis was changed to Lewy body dementia, and eventually to Alzheimer’s.

Following his diagnosis, Tom says he entered a state of “extreme anxiety and depression, a downward spiral” which was exacerbated by the sudden loss of his job. On the very same day Tom disclosed his diagnosis to school administrators, he was told he did not have to come in again. He remembers: “One day I was employed and the next day I was retired and on disability.”

Tom credits ongoing therapy and strong support from his family and neurologist as critical coping mechanisms in the months following his diagnosis. His neurologist referred him to the Alzheimer’s Association, and Tom began attending a younger-onset support group. Soon, he was invited by his local chapter to share his story through media interviews and speeches.

Today, Tom and Levi are navigating the disease together. They have moved to a smaller apartment to be closer to Tom’s doctor. Tom has recently relinquished cooking duties and mourns the loss of life-long hobbies such as reading and researching. He still enjoys dinners with friends, church events, and work around the house. He and Levi recently welcomed a third member of the family — a therapy Basset Hound named Ellie May. “We take care of each other,” Tom says.

As a member of the Alzheimer’s Association 2018-2019 National Early-Stage Advisory Group, Tom wants to be seen as “an individual who has the disease but is not defined by the disease.” He hopes to raise awareness that that people living with Alzheimer’s and other dementias are productive and vibrant, with full lives. He also wants to stress the benefit of early detection and diagnosis.

“It’s important when you’re facing cognitive issues that you keep pushing for answers, so you know what you are dealing with,” Tom says.

Tom and his husband Levi live in Schaumburg, IL.

For as long as I have known Allison, her mother has had Alzheimer’s. When Allison and I first started dating, talking about her mother’s struggle with Alzheimer’s was a challenge. Accepting that your relationship with your mother and your best friend will never be the same because of this disease is an incredibly difficult thing to do, let alone talk about. What I have heard are countless stories about a mother who did everything she possibly could for her children, and I wish I could have known my mother-in-law in the way she has been described to me over the years.

After a few years of learning more about the disease and attending the Alzheimer’s Walks in Chicago, I began to realize that so many other families are impacted in a similar way. Allison, her siblings and her father are not the only ones struggling to articulate what they feel every single day. Inspired by so many others showing strength, Allison decided to write the story of her family’s battle with the hope of increasing awareness of others. So many people may not understand the struggles ahead when they first hear the news, and I can only hope they can find a similarly incredible support system.

This year, I am running the Chicago Marathon for my mother-in-law Pam, my wife Allison, my father-in-law Ted, Pam’s siblings, and the rest of Allison’s family. The strength and support the family shows each and every day is certainly more impressive than any marathon. I would like to support the family by running to raise money for the foundation determined to find a cure. Below is the story Allison wrote about her and her family’s experience with Alzheimer’s – it is a powerful story that we can only hope brings awareness to those that will, unfortunately, have similar challenges ahead.

– Tony DiLiberto

____________________________________________________________

To preface this, I’ve avoided putting “my story” into writing for a while. It is very difficult to look back on the last decade starting with the days when we first noticed minor changes in my mom all the way to today when she cannot even articulate what she is thinking or how she is feeling. The last decade has been filled with so many emotions – joy, pain, guilt, and grief. Alzheimer’s elicits so many emotions in those affected by the disease, and I found it arduous to express those emotions here.

My mom and I were always very close. She was my best friend. I told her everything, which I thought was unique for a mother-daughter relationship, especially throughout high school and college. We spent so much time together, including many high school and college weekend nights at home watching old Harrison Ford movies and consuming copious amounts of ice cream. I felt fortunate that we had such a strong bond and that we had the opportunity to enjoy each other’s company as often as we did. While I was away at college, we talked on the phone constantly, averaging three times a day (thank goodness for mobile to mobile minutes). Illinois was only a quick 90-minute drive from Springfield, so she would come over for lunch or dinner and I’d come home frequently.

I remember vividly the moment I found out she had Alzheimer’s, which I just recently learned was quite a while after she was diagnosed. Apparently, our parents thought it was best not to burden us with the diagnosis until they received a second opinion.

I was a junior at the University of Illinois, and my parents and Julia were coming to Champaign for a late fall football game. Genevieve was a freshman at Illinois, so we were all going to spend the day together. Mom had been occasionally forgetting things for a little while at this point, but I had chalked it up to trying to keep up with six adult children and their chaotic lives while balancing her and my dad’s life together. Mom was also struggling with her parents’ declining health, which I know can certainly be distracting. Like I said before, we talked often, but I don’t remember ever thinking something was actually wrong with her. I figured the forgetfulness and confusion was just stress. She was seeing doctors to try and diagnose the cause of the memory issues, but at the time, it just didn’t seem serious. Just before they came to Champaign that day, I remember calling my mom and asking her for an update on her doctor appointments, and she said something along the lines of “Oh I’m fine! There’s nothing wrong with me!”

So back to that fall day in Champaign in 2009. My mom went to meet her uncle who happened to be in town, so dad, G, J and I went to Atlanta Bread for lunch. I remember exactly which table we sat at and where each of us were sitting like it was yesterday. He asked if we had talked to mom recently. I said that I had and she said she was fine, nothing was wrong. His face dropped. He looked at us all with his eyes full of sadness and said “she’s not fine. She has Alzheimer’s.”

To be honest, I was shocked but I had no idea what was coming. I had heard of Alzheimer’s in older people, including my mom’s mom and my mom’s grandmother, but I had never heard of anyone getting the disease so early in life. My mom was 54. I had no sense of how it would change her life, my dad’s life or my life. I naively thought if she had Alzheimer’s right now and she could still be my best friend, how much could things change?

Over the next few years, I took every chance I could to spend time with her. I went home often, and she traveled with me to golf tournaments where we would spend hours walking around the course together. I finished my college classes in December of 2010 and spent the following six months studying and sitting for the CPA exam. Because I was done with classes, I was able to go back to Springfield for weeks at a time to study and spend time with my parents. I’ll never forget being holed up in my childhood bedroom studying for hours on end and having my mom come in to make sure I was still alive and to bring me Swedish Fish study snacks. She was so good to me.

I had accepted a job with PwC in West Palm Beach in early 2010, soon after I found out my mom had been diagnosed. At the time it seemed completely reasonable that she would fly down to see me often. Unfortunately, that wasn’t the case when it came time for me to make the move in June of 2011. She was getting confused much more often, lost in Springfield where she had lived for over 20 years, and struggling with tasks like reading and writing. It was so hard to leave her, my best friend and my rock, at such a difficult time in her life.

We continued to talk on the phone frequently and FaceTime while I lived in Florida, but it wasn’t the same as being so far from her. I felt helpless and frustrated that she was declining while I was so far away. I wanted things to stay the same, so I grasped at memories and traditions. One very special tradition was Christmas shopping in Chicago. I remember taking the train up from Springfield as a child with my mom, aunt, sisters and cousin Caroline on a Saturday in December to check out the Marshall Field’s windows and the decorations in the Walnut Room. After a few months in Florida, I was really struggling with the distance between us, so I asked if she and my aunt would meet me in Chicago that Christmas season to revive the tradition. They graciously agreed, and we rendezvoused at the Walnut Room in Chicago in December of 2011. I had done a lot of thinking about my mom leading up to that visit, and when I saw how much she had changed during that trip, I realized I needed to come back to the Midwest to be closer to her.

I moved back to the Midwest in April of 2012, and she was no longer able to do many of the things that she could before I left. She couldn’t write and she couldn’t drive, but she still had a great sense of humor and she could live in the moment while we were together. She and my dad came to Chicago to help me move into my first apartment, but I quickly learned how different she was. She was losing her motor skills, and she kept forgetting the tasks we asked her to do. I will never forget asking her to put the shower curtain on the shower hooks, what I thought to be a very simple task. It was painful watching her struggle as she tried, failed and finally gave up feeling very defeated.

I am so grateful for the time I have had with my mom since I moved back. Being within driving distance has made seeing her so much easier logistically but admittedly no visit is ever actually easy. As much as I want to just sit and enjoy time with my mother, the visits are often filled with anxiety and sadness. Not only have I lost the relationship with my best friend but I struggle to even communicate with her on the most basic level. I want to talk to her about her day when I call, but now she cannot even form a coherent sentence. Occasionally she’ll say words but mostly she just says syllables and gibberish. It is so upsetting to call, but I know that even though she may not be able to say it, she is glad we do.

My family and I are so fortunate and thankful to have our father caring for our mother. He is patient, kind and truly the most genuine person I have ever met. He honors the vow he made to my mother to stand by her side in sickness and in health. We are able to see her as often as we do because he makes the effort to bring her to every event, however, challenging it may be. I cannot articulate how much I admire my father’s strength over the last eight years. As hard as it has been to slowly and painfully lose a parent, I cannot fathom how horrible it is to not only watch the love of your life slowly deteriorate but to provide the care for that person day in and day out. It is heartbreaking that my parents spent the last 30 years together raising their children, and rather than enjoying their time just the two of them now, they are both dealing with the effects of this terrible disease.

As thankful as I am for the time my mother and I have had together, I am angry that I have been robbed of my relationship with her and future mother-daughter experiences. I am so happy my mom was at my wedding, but I know she will not remember it. She looked absolutely stunning, but I could see the agony in her eyes throughout the day. I am sad that my husband never knew her as I knew her and that my future children will never get to know their Nanabelle. It pains me to know that my younger sisters had even less time with our mother and that she will miss some of the most memorable moments of their lives. It hurts to watch my older siblings explain to their kids why their Nanabelle doesn’t make sense when she speaks and why she isn’t like their other grandmas. This disease has affected us all differently, but it has brought us all so much closer together.

I find it challenging to put words together to accurately illustrate what a vibrant, loyal, caring and fun loving woman my mom was. I worry I’m forgetting happy memories of her and how she used to be. I struggle to articulate how the last eight years have unfolded – I think in part because I have subconsciously blocked out painful memories so that I don’t have to keep reliving them. Unfortunately, even if I try to suppress sad memories, my family and I are forced to relive this nightmare every time we see our mom, talk to our dad or spend time all together. We cannot get away from this degenerative disease – it permeates through every aspect of our lives and we are constantly reminded of how hard daily life is for both our mother and our father.

I have spent so much time thinking about what I can do to help my mom and this fight, but I constantly feel like I come up short. This Walk provides a special opportunity to share my story to encourage support of those living with or caring for someone with Alzheimer’s. Every dollar raised and every person informed incrementally increases the possibility of a cure.

My story is just one of so many, but I hope this has given you some insight into how Alzheimer’s has affected my family and has inspired you to join our fight.

By: Joe Dulin

Answering the question, “Why I Walk” is easy.  I walk because I miss my dad and lost him way too soon.  This is my experience.  I miss my dad.  I miss him a lot.  I can’t really recall the exact time that he left us, but I would guess it was a year or two ago.  It was very slow and painful to watch.  It started with just general confusion, grew to forget the right words, and ended with almost an inability to communicate.  The real painful part is that it was his mind that slowly left us, not his body.  His body is still with us.  If you saw him today, you would accuse me of being insensitive or over exaggerating his condition.  He appears to be a fairly healthy 62-year-old but that is only the appearance.  You see, my dad was diagnosed with Early Onset-Alzheimer’s in his early 50’s and his brain has deteriorated to the point he can barely form sentences. Now, his personality hardly exists, and the father I once adored is gone.  His story is a tragic one but needs to be shared to raise awareness for the disease in hopes of finding a cure one day.

My dad was a tremendous athlete.  He played high school football, basketball and ran track.  He went on to play college football at William Penn which is a small NAIA School in Iowa.  He had an incredibly successful career at William Penn.  He was all-conference for two seasons and in 1976, he was named an All American.  In 2009, he was inducted into William Penn’s Hall of Fame.  He married my mom in 1976.  After college, he went on to become a very successful teacher and coach.  He coached football, track and cross country for many years.  In addition, he taught Driver’s Education, Physical Education and Health.  He also went back to school and got his Master’s Degree.

Everything was going great for my mom and dad.  They generously put my brother and me through college, and couldn’t wait for the day that where they could retire and spend the rest of their lives enjoying each other and the things they loved to do.  Unfortunately, their love story does not have a happy ending.  The love they had for each other actually makes it that more tragic, yet incredibly beautiful.  It was sometime in 2009 when we started to notice something was just not right with my dad.  He would misplace his keys or forget plans.  These were small things, but they were noticeable.  He seemed very stressed and depressed about teaching.  This was shocking as teaching and coaching had always been his passion.  At first, we thought it was depression.  Some of his best friends and colleagues had retired and he still had two full years to go.  He went and saw a doctor and at first, they thought it had something to do with depression or a lack of some vitamin in his system.  Things kept getting worst.  I remember going down to his classroom and it was unorganized and chaotic.  That was when I realized how serious it was.  I recall telling my mom that she needed to approach the school and have a discussion.  Something was seriously wrong with him.

She contacted the school and explained the situation.  They put him on administrative leave and referred him to a specialist.  (One of the few things they did right.)  We went and saw the neurologist and that was when our world came crumbling down.  It started with a diagnosis of Mild Cognitive Impairment.  That was their way of sugar coating the actual diagnosis, Early-Onset Alzheimer’s Disease.  We asked ourselves how that could possibly be true; He was only 54 years old.  The doctor was very nice and explained everything to us and what this meant for the future.  From not being able to ever work again to the harsh reality that there is no cure for Alzheimer’s disease.  Looking back, we had no idea what we were in store for.  So we get a slow death sentence diagnosis and my mom and dad delivered the news to the school.  They had very little compassion for a man who devoted his life to helping students and had always made the school a priority.  They thought we were trying to scam the system and to this day it breaks my heart how they treated him and my mother.  It shows a complete lack of understanding of the disease and human resource skills.  His bosses whom he had spent many years working for and grew to be close friends with now distanced themselves from him.   He was essentially accused of him of faking his memory problems.  The school was the one who chose that doctor in the first place and then had the nerve to question the diagnosis.  They wanted a second opinion.  We were fine with that because we would have sought one regardless.  They choose another doctor who gave us the same unfortunate, terrible news.  Comically, the school still didn’t believe my dad or two neurologists and wanted us to see another doctor.  We did.  Same conclusion.  Same devastation.

Not only did we get terrible news, but we were also treated like we were scam artists.  He was not allowed to return to work.  We had no calls from the school seeing how he was doing.  No one checked with my mom to see how she was coping with this all.  He taught there for over 25 years and he was sent home one day and they acted like he was an inconvenience.  When someone gets diagnosed with cancer, the school rallies around them.  They throw a benefit, they pray for them, they show compassion.  As it turns out, a diagnosis of Alzheimer’s disease doesn’t quite get the same treatment.

Let me paint you the full picture of the person they thought was trying to scam the system to get out of work:  My dad was a great a man and an incredible father.  He loved teaching my brother and me how to play sports, was patient with us when we failed and always encouraged us to do what made us happy.  I never felt pressured to do this or that, it was just unconditional love and support.  He taught me to work hard but always have a positive attitude.  He instilled in me a level of confidence that I carry inside myself to this day.  There is no limit to my potential.  That is what he believed in and that is the legacy I work for every day.

It is very easy for me to identify his very best quality and what I admired the most about my father.  It was the love he had for my mom.  They met when they were very little.  They attended first communion class in the second grade together.  In high school, they began dating and by college, they were married.  A few months ago I came across a card my dad gave my mom years prior, he wrote:  “Karen, I love you with all my heart.  Each day I thank God for you and the boys.  There is a reason our paths crossed, it was for you to make me a better person and father.  I don’t tell you enough what a wonderful person and a great wife you have been.  I love you each and every day with all of my soul.  Thank you.  Love, Jim.”   The letter speaks perfectly to the love that he had for her.  I have never once in my life heard my dad yell at my mom or catch them fight about a single thing.  He would let her sleep in on Sundays, while he took my brother and me to church.  I am not sure how to even describe how happy she made him as words don’t do that sort of emotion proper justice.

The love my mom had for my dad is incredibly rare.  The only blessing to come out of this nightmare of a disease is to witness unconditional love at its very core.  My mom has been with my father every step of this terrible journey.  From the initial diagnosis to the late stages we are currently experiencing.  She has watched the man of her dreams turn into someone my dad would despise.  He can be mean, unforgiving, rude, nasty, stubborn and unloving.  Throughout it all though, she has never given up on him or lost her patience.  She takes care of all of his issues that I won’t detail as I think the man my father was, deserves that respect and dignity and also because I think it would break everyone’s heart.  Trust me when I say that my mom is an incredible person who has shown incredible strength and courage throughout this whole ordeal and the thing that keeps her going is her love for my dad and the bond they both share.  It speaks to how great of a man he was to see her stick by his side.  They truly meant it when they said: “to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death us do part.”  This year, on my parent’s anniversary, my mother posted a photo from her wedding with a simple caption, “I will remember for the both of us.”

Alzheimer’s disease is a nightmare.  It steals your mind before your body is ready to go.  It erases your memories and eliminates your ability to say goodbye to the ones you love.  It takes your personality and replaces it with someone who doesn’t understand empathy or love.  The only cure for Alzheimer’s disease is death.  There is no medicine to slow it down and at the present time, if you’re diagnosed with it, it isn’t if you will die, but when you will die and the hell you put your family and friends through while it happens.

I never could have imagined how hard it would be to be a caregiver.  Granted I (and my brother) do about half of what my mother does, but it is a constant struggle.  From continuous attention and care and lack of sleep to angry stubbornness on a daily basis; it takes a physical and mental toll on you.  Alzheimer’s disease adds an additional element, you slowly watch the person lose their mind, forget who you are, while they lose their complete identity.  You do what you can to help them maintain some dignity and you try to be patient, but it is something you struggle with every day.

It wasn’t hard writing about how great of man my father was or even acknowledging that the man I once knew is gone.  The hard part to type and admit is how embarrassed I am that I felt the need to keep it a secret for so long, I let pride keep me from admitting the struggle I was going through and asking for help.  I should have taken a stand long ago to advocate for a cure and raise awareness of the disease.

If I had worked to raise awareness nine years ago and worked to raise money, would we be closer to a cure?  Would the right medical research have been funded that may have found the needle in the haystack?  Could it have prolonged my father’s mental life or made the late stages easier?  Would more awareness of the disease have changed how my dad was treated?  All the questions I struggle with and ask myself every day.  I think a lot about how the school treated my father.  I struggle with forgiveness and letting it go.  I want to think their treatment of him wasn’t out of malice or spite, but rather an ignorance of the disease.

This is why awareness is so important.  It took me many years to finally figure that out.

My father was my biggest fan and was incredibly proud of the person I was and knew I would achieve great things.  My father taught me that I can do anything I set my mind to.  Well, my mind is now set on raising funds for Alzheimer’s awareness to help families and caregivers who struggle with this disease.  My mind is set to work with all of the other people who showed courage long before me to stand up to this disease.

My dad is leaving this world with a legacy of being a great man, a great teacher, a great husband, and a great father.  He taught me to work hard, be loyal, keep your head up, be positive, make a difference. Sometimes things don’t come easy but that doesn’t mean you give up or empower negativity.  I work to carry on his legacy and leave this world a better place.  I hope the sharing of my experience can shed some light on what being a caregiver is like and offer some comfort to others going through similar things. Life isn’t fair to anyone.  My dad taught me to be nice, respectful, forgiving and understanding.  That is how my dad lived his life and the legacy he left. I hope to carry on that legacy with how I live my life.  I know my dad would be proud of the person I am.

With the help of some great friends, we are participating in the “Walk to End Alzheimer’s” fundraiser on October 13th.  The Alzheimer’s Association raises money to provide care and support to all those facing the disease, drives research towards a treatment, prevention and a cure and speaks up for the rights and needs of people with the disease.  Our team name is “You’re killin me Alz.”  This is a play on a reference from a great sports movie, The Sandlot.  My dad was a huge fan of sports and also always had a sarcastic sense of humor.  He would have loved the team name.  As stated earlier, the disease is a death sentence and we hope the money we raise goes to help find a cure so the disease will no longer kill anyone else’s family members.

I walk to honor my father.  I walk to raise funds to support caregivers.  I walk to help find a cure so other families don’t have to experience what mine has.  I walk to find a cure so if this is my future as well, then I have hope.  Please visit the page my team has set up and make a donation to the Alzheimer’s Association.  After doing so, I would love for everyone to share this story or visit my Facebook page at www.facebook.com/josephdulin and share the post I wrote in an attempt to raise more awareness.  Thank you for taking the time to read my experience.  Thank you to all my friends who have been on this roller coaster with me.  You know who you are and you know the stress that I can cause.  Your love and support are amazing.

I miss my dad and the wonderful man he used to be.