Family Stories - The Beginning of the Journey

Each person's journey with dementia is different. Read on to learn about Dave and Jim Tabata's journey caring for their mother, Joan: 

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 She became anxious and withdrawn, and we visited her doctor again, who suggested that reading out loud might help, but mom never saw much benefit from doing so.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. As 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. 

UNEXPECTED CHALLENGES

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. As 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.

CANDI

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 without mom 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.