With Alzheimer's disease and dementia, no two families share the same experience as they navigate the changes and challenges associated with the disease. We invite you to read about our current Ganzhorn Suites families as they share their stories. We hope you'll find these stories helpful and provide a sense of hope as you navigate your own journey.
The Beginning Of The Journey
“I think I’ve had a stroke.” These words, spoken by my mother, Joan, almost a decade ago, were the beginning of a long, difficult journey for our family. “What do you mean, mom?” my brother and I asked. She explained that sometimes she couldn’t find the right words to say what she meant. For example, if she wanted to say ‘cat,’ sometimes ‘dog’ would come out. She was concerned, and so were we, so we took her to see her physician, who reassured us that it was just ‘age’ and that there were no signs of a stroke or brain tumor (another concern).
My mom loved to talk. She could spend hours at her favorite coffee shop in her hometown of Cleveland, Oh, talking to customers and staff, gabbing at Bingo, talking and laughing on the phone with her sister, and participating in family gatherings at her house.
She would even stay up late at night chatting she had so much to say! But as her problem finding the right words became worse, I noticed that she wasn’t participating in family get-togethers like she once had. She became anxious and withdrawn, and we visited her doctor again, who suggested that reading out loud might help, but mom never saw much benefit from doing so.
Over the next four years, mom’s ability to communicate got worse and worse. Even though she was able to drive and perform most daily tasks herself, her difficulties speaking began to affect her daily life. My brother lived with her at the time, and was taking care of her as best he could, but in 2014 we decided that he and mom would move to Columbus to be closer to me, my wife, and kids, so that we could all share in mom’s care.
THE BIG MOVE
So, in June 2014, we packed up mom’s belongings and sold her condo. Mom cried. She’d been born and raised in Cleveland, and now, at age 81, was being uprooted. The first few weeks were rough, but we all tried to keep our spirits up as we tried to keep mom engaged with unpacking and settling into her new apartment. Once she was settled, I decided to try once again to see if the medical field could help us understand what was going on.
A specialist in dementia examined my mom, asked her a lot of questions, and did a CAT scan of her brain. We were given a diagnosis of Frontotemporal lobe dementia (FTD, formerly called Pick's Disease).
Knowing a limited amount of information about dementia, I turned to the internet and began reading - I did not like what I read. The form of FTD mom had was Primary Progressive Aphasia (PPA), which is a progressive disease that affects language skills, speaking, writing, and comprehension. Eventually motor skills are impacted with muscle stiffness, difficulty walking, and changes in posture. It also affects eye movements.
The progressive nature of this condition was concerning because even though mom could still communicate (with difficulty) and get around by herself, we had no idea how long that would last, or how quickly it would progress. It was not a good situation, and my brother and I were again in a position of needing to know more, and figure out the next steps.
I found myself wondering, “how long will we have with her?”
FINDING A WAY
We have a small family. My father is deceased, and so there was only my brother and me to care for mom. I wished over and over again that we had a sister who could help us understand better what mom needed, and to help her with female-related issues like visits to the gynecologist.
a son, I felt it was my role to protect mom, but I was uncomfortable deciding about best care options.
Even so, we managed. My brother lived with mom, and provided non-stop care when he was not working. He worked irregular hours, which fit well with my schedule - I visited mom often to assist her with showers, grocery shopping, and preparing meals. Plus, my wife and kids helped out by visiting when I could not - making sure mom was okay.
In the early months of her life in Columbus mom was still able to cook, clean, and do laundry in her apartment, but as time went on, her motor stills became affected, and daily tasks became more difficult. Her communication skills declined as well. She was often unable to finish sentences, or simply couldn’t find any words at all to communicate what she wanted. For a while she used written notes to communicate with us, but as her fine motor skills declined, her handwriting got smaller and smaller, to the point that we could no longer make it out. After that we tried a machine she could type into, but mom was never a user of technology, and this created more frustration than it eased.
One day when I picked her up for a family birthday party, I discovered she had taken a fall earlier in the day. She was able to communicate to me that her pain was increasing, and a visit to the ER revealed she had cracked a vertebra. This led to us acquiring a Life Alert necklace for her, which brought its own set of problems. It turns out that the button is quite sensitive, and could be activated by mom bumping into the washing machine, or when it got lost between couch cushions. I began getting calls about every other month due to the alarm going off.
At first, I could call mom and she could tell me she was fine and I could cancel the medics responding before they arrived. However, as time went on, her difficulty speaking kept her from responding, and so the medics arrived. I arrived at her home several times to find the medics taking her vitals while she sat there frustrated because she had only accidentally hit the button and felt fine, but couldn’t convey this to the medics.
There were more challenges that first year. At first, mom could do her grocery shopping with just a little help from me when she needed to do things like tell the meat counter person how much beef she needed. Her memory was still sharp, and she usually got everything she needed without the help of a list. The outings were good for her, too, as she could lean on the cart and get in some exercise walking the aisles.
her limitations increased, we noticed mom was having difficulty determining what she needed at the grocery, and shopping took longer and longer. On one particularly bad day, it took her almost three hours to finish shopping, 45 minutes of which was spent picking out a birthday card.
It was like she just couldn’t discern what she needed from what she didn’t. Still, mom and I typically enjoyed these outings together and we made sure she always got her favorites - pastries, cookies, and popsicles!
In mom’s second year in Columbus, we moved her into an apartment with a layout that would be easier for her to manage, including a walk-in shower. However, in this particular building the doors locked automatically upon closing and this caused some problems for mom. For example, mom was unfamiliar with the stove, which had an indicator light when the burners were off, but still hot. This confused mom, because she wasn’t sure she had turned it off, so she went to the lobby to ask someone about it, and got locked out of her apartment. We got a call from the lobby staff that mom was confused and scared. She got locked out of the building on another occasion when she was waiting for her granddaughter to visit, and we got a call again.
Mom eventually stopped leaving the apartment on her own, and we were concerned about her not getting enough social stimulation, so we hired a service to take mom out a few days a week. This is when Candi entered our lives. She is a retired volunteer who began spending time with my mom. Mom seemed to be able to easily relate to Candi, and the two built a special bond and friendship. They became regulars at the local Starbucks where they would drink coffee and play rummy - they even had a favorite table that the staff made sure was open for them each visit!
It was always amusing for the two of them to play Bingo. Given that mom couldn’t speak for herself, Candi would yell, “Bingo!” for both of them, and other players would get aggravated that Candi was winning so often!
Candi and mom laughed and smiled, and after outings with Candi, mom would be beaming. She became such a part of mom’s life that even after mom moved and we cancelled the service, Candi continued to visit her. We were very thankful for Candi’s friendship and influence in mom’s life.
THE NEXT STEP
We made it all work for a while, but with the progression of mom’s symptoms, we were finding it harder and harder to properly care for her, and the stress level between my brother and I began to increase. This culminated when my brother had to take a two-week out-of-town work trip. I couldn’t imagine how we were going to care for her, short of me moving in for the two weeks. This was the first time we seriously considered having mom stay in some sort of care facility. We were reluctant to even think about it because mom’s feelings on the matter were clear. Her mother had been in a traditional nursing home, and based on what mom saw there (including unexplained bruises on her mother), she had always told us “don’t put me in a nursing home and leave me.”
I found myself both worried and guilty, concerned about mom’s reaction, and questioning again and again if this was the right thing.
My brother and I started visiting dementia-care facilities: some were nice, some were not; some were expensive, some not so much; some took Medicaid/Medicare, and some did not. There was no easy answer, and we found ourselves in the unexpected position of having to seek financial advice about how to pay for all of it.
I visited the Ganzhorn Suites, received a tour, and met with the staff. What I saw was impressive - not all residents were treated alike. The staff seemed to recognize each resident had different needs and wants, symptoms, disease stages, and various physical and cognitive levels.
For us the final decision came down to the fact that mom’s physician was on staff there. We decided to try temporary respite care for the two weeks my brother was out of town. We thought this would allow us to see if mom adjusted well, and if this was the best place for mom and us.
The first few days were difficult for mom. She was uncomfortable around some of the more boisterous residents, and wasn’t settling in. The staff helped tremendously. All the residents wear GPS bracelets, and they created an alert that would notify them if any of the residents that made mom nervous came close to her. Additionally, they put a bicycle bell on mom’s walker that she could ring when she was uneasy. This seemed to smooth things over, and mom began making friends and participating in activities. My brother and I were shocked to find that mom was indulging in the occasional foot massage, and even getting manicures and pedicures – something she had NEVER done before!
To us this seemed like the perfect place for mom to stay. She was getting more stimulation than she did at the apartment, where she was prone to lie on the couch and watch television, or occasionally read a gossip magazine. At Ganzhorn, we knew her needs with regard to safety, nutrition, and companionship would be met.
However, when the two weeks were up, mom began packing and getting ready to return to the apartment. When my brother broke the news to her that we felt is was best she stay at Ganzhorn, she cried.
Once again, the staff at Ganzhorn helped us. They got mom involved in activities and provided regular updates to my brother and me. He and I took turns visiting mom daily,
which allowed us the opportunity to meet the staff, and see for ourselves that mom was settling in, and had lots to do: painting, bingo, card playing, baking cookies, etc. We saw mom smile and laugh and build friendships with residents and staff. She started getting up earlier and staying up later, and even voluntarily heading down to the fitness room to use the stationary bike.
THE LAST WORDS
The last words that mom could speak were “yes” and “no.” I can’t remember exactly the last time she ever spoke, but shortly before arriving at Ganzhorn, she lost her ability to speak altogether. This was so hard to watch mom go through. Her mind was still sharp and she knew what she wanted to say, but could not get it out. She was trapped with no words. Understandably she would get frustrated as we all played detective trying to figure out what she was trying to communicate. We learned to read her facial expressions and understand her yells and cries, and the staff gave her a bag of SCRABBLE letters, which helped a lot, and she used often.
She was starting to have more motor problems, too. Dressing and other fine motor tasks were becoming difficult and she was having trouble walking. She began to fall more often and became more fragile. When she started to have trouble eating and swallowing, her condition changed rapidly, and she lost twenty pounds quickly. We knew the journey was nearing the end and that brought even more decisions to be made by my brother and me. It began to consume us as we wondered what would be next? How will we react? How will we let family members know?
Each time I left the center I replayed the time with her in my head. Some days were good and some were bad, and I would never know from one visit to the next what to expect.
I remember a relative telling me this process is a roller coaster ride with many ups and downs, and we had no crystal ball to tell us what was in store the next day, the next week, or the next month.
LINGERING QUESTIONS; CONTINUING JOURNEY
Mom passed a few months ago, and I still find myself pondering over and over if we made the right decisions along the way. Should we have moved mom into Ganzhorn earlier? Or should we have kept her at home longer? Did we get her the best care we could have? What if she had been diagnosed earlier? There are no answers to these questions.
What I do know is that afterwards there is a feeling of being numb and empty, and you finally have the answer to the question you began asking in the beginning – ‘how long?’
Since mom’s passing my cell phone doesn’t ring anymore with bad news, but I feel like I have too much time on my hands. When mom lived in Cleveland, I saw her about seven times per year, but after her move here I saw her almost every day for several years. I built friendships with the residents and staff at Ganzhorn, and still attend a support group there. She, and the people in her life, became part of my daily life - her journey through this disease became our family’s journey, too. But now our journey withoutmom has begun. I expect there will be good days and bad days, and even though we will never hear her words again in person, from heaven I am convinced we will hear her words again.
My dad, Bill, was diagnosed with early-onset Alzheimer’s disease at the age of 51. I was 17 years old. When my parents sat my two younger siblings, Molly and Will, and me down to tell us about his illness, we didn’t really understand what it meant for all of us, but my mom explained that in a few years our dad might not remember who we were.
My mom noticed the first clue that something was wrong. She and my dad have always been very much in love. They truly like each other and we have witnessed their respect and commitment all our lives. My mom will tell you that the first sign of my dad’s disease was not memory loss or confusion, but his grumpiness towards life, including her. She thought at first that this was just what happened to old married people, but my siblings and I began to notice, too. My dad had always been very calm and soft-spoken, but he had begun occasionally yelling or raising his voice to us, which was really out of character.
What truly concerned my mom, however, was when my dad missed a credit card bill. My dad was a numbers guy – his career was in investment managing, and he had never been late paying a bill in his life. He and my mom started visiting doctors, visited the Cleveland Clinic, and the diagnosis of early-onset Alzheimer’s disease was made.
His disease progressed more quickly than we anticipated. Within a year dad couldn’t be left alone.
We had moved to a new home to make it easier for us to get help during the day, and at first dad was able to go out for a stroll or walk the dog, but then a few times he got confused and couldn’t find his way back.
I left for college and the progression of his condition was clear to me when I came home for the Holidays. He was very different than the dad I had left. He and my younger siblings had switched roles, and Molly and Will were now his caregivers and supervisors.
The loss of the dad I had known became real for me when I was swimming in a national competition for Kenyon College. When I was ten years old, I was more interested in books than anything else, and wasn’t much for physical activity. My dad asked me to join a local swim club as a Father’s Day gift to him. I thought that would be an easy (and cheap!) gift and agreed. I have been swimming ever since – it is a huge part of my life. Molly and Will swim, too. Anyone who listened to my dad talk about our swim meets were led to believe we were all the next Michael Phelps. Trust me, we are not, but we do love the sport and have been blessed with great coaches and supportive parents.
My dad was involved right from the beginning. He was president of the Upper Arlington Swim Club, and president of the high school athletic boosters. He would sit in the crow’s nest for three full days straight managing the scoreboard for meets and tournaments. He loved it. He believed in the program, and even as the disease progressed he still recognized the positive impact swimming has had on our lives.
As time went on he had trouble navigating the heat sheets, had to be reminded when one of us was in the water, and couldn’t remember our coaches’ names. The reality of his condition hit me when I was in the water during a collegiate national meet, and my dad turned to my mom and said “I’m bored, I want to go home.”
I still swim. I still love the sport and I love my teammates, who have become great friends, and who understand my situation and support me, but now I swim without my dad in the stands.
HOME AWAY FROM HOME
Finally the point came when we knew that dad needed more care than we could give him at home. He had been admitted to the hospital, and shortly afterward we moved him into an Alzheimer’s care center close to our home. We covered the walls of his room with photographs of us that he has always loved and that make him smile. Some are, frankly, not the most flattering photos of us, and not a staff member or resident entered his room without a chuckle at our expense! He seemed well cared for and through his interactions with staff we would see moments of clarity, such as when he said “thank you” when a meal was brought, and when he said “thank God” when a volunteer told him Ted Cruz had beaten Donald Trump in the Iowa caucus.
Like my dad at that point, the residents at the care center had no filter, and often appeared in his room whenever they liked. He became a favorite with a few of the residents who liked to look at his pictures, or who talked to him, sometimes in Spanish or Russian, while he listened intently. It was difficult for us to be apart from him, but we were grateful he had people to interact with, and was well cared for.
SECOND HOME AWAY FROM HOME
Eventually, my mom decided to move my dad to his next home away from home – The Ganzhorn Suites. The move was facilitated by my Uncles Joe and Tim, who helped normalize it, moving stuff like it was “no big deal,” and by the wonderful staff at the care center whose kindness and attention extended beyond the care of my dad to the moving of pictures, Steelers paraphernalia, a dozen baseball caps, and bags of goldfish, and the giving of many heartfelt hugs. I was at school studying for final exams, but my mom kept me updated with texts and pictures, and in every one my dad was smiling.
I had been against this move at first. However, after dad got settled in at Ganzhorn, I realized this was the best place for all of us. We have heard mom say many times to friends that my dad’s move to a “home away from home” allowed us to accept his disease.
While we had understood that he had Alzheimer’s, when he was still at home with us we were anxious. We were always hoping that when we returned home from school that just maybe he would be better, ask us how our day was, run us on an errand, cheer us on at a swim meet, or that when friends were over he would be ‘normal.’ We weren’t embarrassed, we just wanted our dad back.
At Ganzhorn we have the best of both worlds because dad gets the care he needs, and we can still do things like celebrate his birthday the way we always have: bake his birthday cake, served with Graeter’s raspberry chocolate chip ice cream; inflate the infamous inflatable birthday cake that appears at all our birthdays; and give him an assortment of golf shirts that he always insists he doesn’t need.
CHRISTMAS TO REMEMBER
We even spent Christmas with my dad at the Ganzhorn Suites. It was my mom’s idea, and Molly, Will, and I were apprehensive at first. We questioned how it would feel to spend Christmas at a memory care facility. We were still teenagers after all – we worried about having our traditional over-the-top Christmas decorations and whether our stockings would be filled, and if we would play games, watch football, and do all the things we have done for years.
We did all of this, and more.
In the weeks preceding Christmas, my mom helped decorate dad’s home – it looked like our home. There were Christmas wreaths all over the place. My mom brought our Christmas china, new matching pajamas, Santa’s gifts, cookie making needs, and anything else you can think of to ensure that Christmas felt like Christmas.
Christmas Eve morning we moved into the last available wing at Ganzhorn after unloading four cars filled to the brim with Christmas stuff. Each of us moved into our own private room with our own bathroom, brand new sheets, and a double bed, which was quite a step up from sleeping in sleeping bags, sharing three to a room, and waiting on the bathroom! We felt like we had checked into a five-star hotel, but yet it also felt like home – Christmas pajamas and stockings were waiting at our doors.
Our friend Father Watson visited and said mass for us. He was very personal in his homily and brought up times he had spent with our family. My dad smiled when he referenced my dad’s golf game.
We spent the afternoon baking cookies and preparing Christmas Eve dinner. We prepared my dad’s favorite, beef tenderloin with béarnaise sauce. The staff were wonderful, and the greatest gift of all. They would pop in and check on my dad, share a story, and have a cookie or two. We were reminded again and again how lucky we are that dad is so well cared for there.
On Christmas morning Will dressed as Santa, and Molly as an elf, and they delivered presents and treats to all the residents. My mom reminded us that before we were born, dad would dress as Santa and visit friends and family on Christmas Eve. Our traditions continued.
My dad typically dozes off during the day, but not this day. He sat with us and took it all in. Friends stopped by, we played games, put puzzles together, and dad watched – he didn’t want to miss anything.
Our Christmas was awesome.
My parents’ love for each other, and us, has not diminished with my dad’s diagnosis. In fact, it has gotten stronger. When he was still living at home, within ten minutes of mom leaving the house he would call her asking when she would be home, and would sometimes sit by the window waiting for her. Early on in his disease he decided to buy tickets for my mom to see Earth, Wind, and Fire. My dad has always hated crowds, and when he found out it was at the Toledo zoo, he was very grumpy, but we all convinced him to go. I’m not sure if he would have agreed prior to his diagnosis, but my dad has always adored my mom, and we continued to see it throughout his disease progression, just in different ways.
My mom has been a rock through all of it. My dad is the love of her life and it is rare that a day goes by that she doesn’t visit him.
She believes that everything happens for a reason, and her faith in God has helped her deal with the changes in her life while still putting dad, me, and my siblings first. She has been there for us 24/7. We have come to experience first-hand that adversity brings people together, puts life in perspective, and allows you to see and feel the goodness of people.
Early in his diagnosis, while he was still living at home, dad loved to go to lunch with friends, and the invites were so numerous my mom joked that juggling dad’s lunch dates could be a full-time job. He enjoyed his friends and lunch dates so much that we decided for his birthday we would invite all his lunch buddies to a “Men’s Night Out” at the local Country Club. The only problem – they did not typically offer béarnaise sauce.
My dad loves béarnaise sauce. In fact, after his diagnosis, he would sometimes refuse to go to a restaurant that didn’t offer it, which was tricky because it is typically only served in fine steak houses.
On this occasion we arranged for the Country Club restaurant to serve the sauce, but because my dad knew they did not typically have it, he initially refused to go. After some real convincing he agreed to go, but only if he could bring a packet of béarnaise sauce with him to give to the chef.
We were a bit embarrassed as he came barreling into the party with the packet in his pocket, insistent on giving it to the hostess, but when he saw his friends gathered he forgot about it, at least momentarily. Then he was beyond pleased when we told him that the chef had actually prepared his favorite sauce, and afterwards said it was the best meal ever!
A few months later, at the local July 4th parade, he spotted the general manager of the Country Club and motioned him to the side, in the middle of the parade, to tell him that the club’s bottom line would benefit greatly if they were to add the delicious béarnaise sauce to the menu permanently! Thankfully, the manager accepted this recommendation with smile.
CONTINUING WITH OUR LIVES
Shortly after he moved into his first ‘home away from home,’ our family spent our first vacation apart from my dad. We went to Sanibel, one of our family’s favorite spots, thanks to my dad. We went to his favorite places, walked the beach, rode bicycles, and enjoyed our vacation just as if he were with us. My mom tried to change it up a bit knowing full well there would be a void, and she was right - we missed him.
We were uncertain if he would miss us, or be aware that we were gone, but on mom’s first visit afterwards she was greeted with a big smile, and he told her “you made my day” when she showed him pictures from the vacation.
At that time it was rare for him to speak in complete sentences, so his response suggested to us that he loves us and wants us to continue to live our lives just as he has hoped and prayed we would. It doesn’t make a difference what we are doing – being a college student, going to swim practice, lying on a beach; we miss him, but also know he would want us to continue living our lives.
At first, I kept asking why. Why was this happening to my dad? Why was this happening to my family? I didn’t understand why my dad had to have Alzheimer’s, why he had to forget his family and friends. I was sad because I simply didn’t understand why.
It took about a year for me to process through this grief, and start asking the questions how and what. What can I do to end this disease? How can I make a difference in the lives of millions of people suffering with it? How can I help ensure that other families don’t have to watch a loved one be taken by Alzheimer’s disease?
The answer was Bill’s Buddies, a team that raises money for the Alzheimer’s Association and walks in the “Walk to End Alzheimer’s.” To date we have over 1,000 members and have raised over $150,000. Bill’s Buddies means everything to me, and is the very beginning of my mission to end Alzheimer’s disease. It has been a huge help to my family and me – it has benefited our family more than you can imagine and is more than a fundraising tool – it is our how.
Bill’s Buddies is how we are fighting Alzheimer’s disease. The money we raise goes to Alzheimer’s support, education, awareness, advocacy, and much needed research. This is particularly important to me because, since early-onset Alzheimer’s disease is relatively rare, there are very few support resources for someone my age who has a parent affected by the disease.
ALWAYS WITH ME
Our lives, just like yours, are very busy and filled with experiences and opportunities. Five years ago my dad would have been right in the middle of all of it. He would have celebrated, advised, supported and worried about each and every venture. Today he is unable to join in our everyday activities. His days are spent watching the residents at Ganzhorn make crafts, watching them put together puzzles, watching them bake, and watching old television shows. He also loves a good nap and a taste of Graeter’s ice cream. He is content and well-cared for, but is now wheelchair-bound, can no longer communicate, has trouble swallowing, and doesn’t recognize me when I visit. Yet I know he is still always with me.
As I graduate from Kenyon College, in the back of my head I will hear him talking about my first day at Montessori School.
As I recount my first day of my first real job, I will hear him asking me about co-workers, what I had for lunch, and how I liked my cubicle. I would have told him that I loved my cubicle – and he would have called me a nerd. He also would have asked me if I threw foam peanuts at the other associates in my area. I would have said no, but that was something my dad did at his job! We would have laughed.
As I move into my first apartment, I will hear him laughing at all of the clothes and knick-knacks I have. As I unpack my shoes, especially boots of any kind, I can hear him laughing and singing “These Boots Are Made for Walking,” by Nancy Sinatra, which was a common joke he made.
As I walk down the aisle or dance at my wedding, I will hear my dad telling me not to trip over my feet, and that I need to make sure I don’t step on his feet while we dance. I would also see that sweat is dripping down his forehead – my dad was always nervous in a crowd.
As I hold my child for the first time, I will hear my dad tell me that “seeing your baby for the first time is the best feeling in the world.” I know that this would have been one of his most favorite moments – he has always loved babies.
Every day I am sad because my father is dying in front of me, but he wouldn’t want me to stop living. I am still going to graduate from college, move into my first apartment, walk down the aisle, and have my own children. And yes, I will be sad he isn’t there, but in my heart I know my dad will always be there. Alzheimer’s can change a person, but it will never change the relationship I have with my dad – a relationship that will continue to grow in spite of this terrible disease.
My wife, Deb, and I have been married for 46 years. We met at college. We were both part of a large group of friends who hung out together quite a bit, and even travelled together. Deb and I had a lot in common. We were both preacher’s kids (“PKs” to those in the know), shared a similar set of values, and enjoyed a lot of the same activities. We even both played French horn in high school! We had spent so much time together, and knew each other so well, that we discussed marriage on our first official date! We decided it was a good idea.
When we were young I practiced law for a while, and Deb worked as a family and school counselor. However, the church had always been a part of our lives and after a time it called us back. I became a Lutheran pastor, and Deb worked as the church’s Family Life Ministry leader. Over four decades of life and marriage has brought us three sons, one daughter, nine grandchildren, and lots of happiness.
It was our children who noticed Deb’s symptoms first. She would make plans and then forget them, or she couldn’t remember how to get to a place she’d been many times before. She occasionally even ran a stop sign on a familiar road. Finally, my children staged an “intervention” with me to discuss their mom’s symptoms, and I had to face that I had been in denial about what I was seeing. I had to start recognizing and stop excusing the same behaviors they had been noticing. Their influence prompted us to see a neurologist, and in 2011, at age 60, Deb was officially diagnosed with mild cognitive impairment. We are extraordinarily lucky to be patients of Dr. Douglas Scharre, at The Ohio State University. He is a leader in the Alzheimer’s field, and even developed the “Self-Administered Gerocognitive Exam” (SAGE) that detects early signs of impairments. Through his office we were able to put Deb on a medication study that I think really helped her. And of course the study advances the science so it will help others as well.
Deb had an uncle with dementia, but this was my first experience with it. I got all the information I could. I attended symposia given by her neurologist, went to Alzheimer’s Association meetings and caregiver support groups, did internet research, read books – anything I could find that would help me understand what was happening now, and how to prepare for what was to come.
Part of that preparation involved changing our living situation. We are very blessed to live close to all our children, who have been a tremendous support system for us. At our daughter and son-in-law’s suggestion, we made the decision to move in with their family. We had a home built for us that was designed based on our particular needs. It is a split level house with an apartment area for Deb and me that is easily accessible to the rest of the house, so we can interact with our daughter, son-in-law, and grandchildren. A representative from the Alzheimer’s Association even visited to give us suggestions for keeping the house safe for Deb and easy for her to navigate.
We all have a need to be useful, and Deb is no different. She likes to contribute to the household as much as she can. Everyone in the house always has folded laundry thanks to her! She will do dishes sometimes, too, and everyone knows to secretly check afterwards to make sure the dishes are actually clean. Such activities are good for her, and keep her active.
We all do what we can to keep her busy and stimulated, and keep her engaged in a “normal” life as much as possible. I take her to the YMCA a few days per week for exercise, she sings in the church choir (with the help and guidance of the rest of the alto section), and she and I go to dinner at our other children’s houses multiple times per week. This is great for us as we get to have a change of scenery and interact with other family members. The grandchildren are particularly good with Deb. Sometimes all the noise and bustle of family gatherings will become too much for her and one of the kids or grandkids will take her to a quiet spot to talk or color (a favorite activity of hers). These visits also give a break to the family members that we live with. This was recommended by the Alzheimer’s Association representative, who stressed the importance of caregivers taking a break to recharge.
This was a lesson I took to heart as well. Currently Deb is dependent on me for almost everything, and her attention span has gotten very short in the last few months. Some of her favorite activities, like reading, have become difficult for her and she can sometimes be very depressed or angry. Often that anger is taken out on the person closest to her – me! I know she can’t recognize or appreciate everything I do for her, yet I want to be a patient and attentive caregiver, so I make sure I am protecting and renewing myself with regular breaks. Three days per week Deb attends an adult day care facility that specializes in memory care. Sometimes she get angry and doesn’t want to go, but I tell her it is not for her, but for me, so I can be a better caregiver to her. She always does well there, and the stimulation is good for her – she is always very tired when she gets home. I take the opportunity to do something I enjoy, such as exercise, play golf, or just do some uninterrupted work on my computer.
Obviously, our lives and relationship have changed quite a bit since her diagnosis. Verbal commands have become difficult for her, so I have to show her how to do things. For example when I tell her to wash her hair I have to mimic rubbing my head so she understands what to do. I like to listen to podcasts while driving, but they are overwhelming to her so we just listen to some soothing music instead. Travelling any distance has become difficult because she doesn’t have a good sense of time and quickly gets frustrated. After years of family vacations, this year will be doing a “staycation” to accommodate Deb.
The biggest difference is that we can’t talk about anything of substance anymore. This is a real loss to me because she was always my sounding board. She is a creative non-linear thinker, and I am more of a straightforward problem solver. I always valued her perspective and opinion on issues that came up at work or what was happening with the family, but we can only talk about surface things and what is happening now.
I’m semi-retired and every once in a while I have to travel a few days for work. Like many people, our children are busy with jobs and their children, and aren’t available to care for her for that length of time. My daughter and I visited several local facilities that offer respite care services. That is when we visited The Ganzhorn Suites. I really liked how the facility was designed based on the needs of memory-care patients. Deb has done two short stays there (a few days each time), and has done very well. We made sure she had lots of visitors and phone calls (but not from me because we thought that might be confusing). I’ve been to some of the information sessions they provide, and I liked the set-up there so much I even adopted some of their special touches such as the red light in the bathroom for nighttime visits.
PREPARED FOR THE FUTURE
For families who are new to a diagnosis of Alzheimer’s I recommend getting lots of information, being patient, and talking about it freely. We have two sayings we’ve adopted that the whole family uses: “It sucks,” (the “it” being Alzheimer’s disease), and “it is what it is,” meaning we can’t change it, we just have to deal with it. I also recommend travelling while you can, keeping your loved one interacting with lots of people, and being prepared for the next stage of the disease. For example, from my reading I know that incontinence is a common issue. Deb doesn’t suffer from this yet, but I’ve covered the bed in a water-proof liner so we are ready if it does happen.
There can be an upside. Deb’s diagnosis has helped me to calm down about accomplishing things and has simplified my life. I am learning to “stop and smell the roses” a bit more, and I’ve had to learn how to do more domestic things for myself like cooking. As Deb’s disease progresses I know it will be more challenging. At some point we are likely to no longer be able to care for her at home, but we are not there yet. I’ve been told by others who’ve gone before me that “you’ll know when you know” that it is time. Until then we will continue to take care of her as a family. I love her, even though that “her” is changing. But isn’t that life? We all change, including me!