By Olga Monacell
Alzheimer’s Association, Rochester & Finger Lakes Chapter
Rick Gause had always been on the go, between juggling two jobs, taking his now grown-up sons to afterschool activities, and helping his wife Vielka keep an eye on her elderly mother who at the time lived down the road from their house. His mother-in-law Viola, a vibrant and self-reliant lady, drove her own car and had her own apartment. “She was as sharp as a needle, and she still is—on certain days,” Rick said. “I’m very close to my mother-inlaw,” he added.
About three years ago, Vielka and Rick started noticing signs of confusion in Viola. She would come over for dinner but shortly afterward she would say, “I better get home because it’s getting dark.”
Rick wanted to understand why his typically self-confident motherin-law was showing signs of fear. One night, he jumped into the car without her knowing and followed Viola home. “She almost got into two accidents on the way to her apartment! And she didn’t live far from us, just a few miles away,” Rick said.
Several weeks later, Viola called and asked if Rick could pick her up so she could come over to visit. After visiting with the Gauses for less than an hour, Viola wanted to leave because it was getting dark. She thought she had driven herself to their home that evening. “I knew something was wrong with Viola,” Rick explained.
Viola would religiously call Vielka and Rick every day. One day, they didn’t hear from Viola. That night, when Rick picked up Vielka from the hospital where she works as a registered nurse, they decided to stop by and check on Viola. They rang the bell of Viola’s apartment but nobody answered the door even though the TV was on. “I called her cellphone while my wife was calling her house phone. We could hear both phones ringing.”
Rick unlocked the door and found Viola on the floor. They rushed her to the hospital and were told by the doctor Viola had suffered a stroke, which had affected her memory and speech. After she recovered from the stroke and was diagnosed with dementia, Viola could no longer live alone.
Rick and Vilka made a decision to move Viola to their house and now they both are her fulltime caregivers.
“We had to alter a lot of things in our home. We added handles in the bathroom and put some furniture away to make Viola’s room more spacious and safe for her,” Rick said. “She has her great days and her bad days. We care for Viola the best we can. We are learning her likes and dislikes. Every morning, I make breakfast for mom and I know what she likes. Some days, I’m wrong but she eats it anyway. We have to invest into your loved one in order to get to know them.”
A high school football coach and substitute teacher, Rick took on caregiving responsibilities without any hesitation. Soon, he realized how difficult being a caregiver was, even though Rick and Vielka were getting some in-home care help as well. By then, all three of their sons left Rochester to go to school or work elsewhere. Jojo is now in college in Pennsylvania, Quentin is a linebacker in the Canadian Football League, and Brandin is a Verizon executive in California. They are supportive of Rick and Vielka’s decision to care for their grandmother and help from afar.
“Becoming a caregiver changes your daily routine and changes you,” Rick said.
One day, Vielka asked Rick to join her at a seminar for caregivers organized by the Alzheimer’s Association. He didn’t want to go as he was busy and tired. But he went anyway. “At that seminar, we found out we were not alone. Other people were going through the same thing,” Rick explained.
He asked questions and was able to get answers. At the same time, he shared his own experiences of taking care of Viola. A few days later, he got a call from the Alzheimer’s Association and was asked to become a community educator. “I didn’t think I could do it,” Rick said. His wife encouraged him to give it a try. Rick signed up for a training course and eventually became a freelance community educator.
Now, he travels within the Greater Rochester and Finger Lakes region and conducts educational seminars for caregivers. “I meet interesting people with situations just like ours. When we find ourselves as caregivers, we are not prepared for the hardships of caregiving. It isn’t something you can hop on and be good at without learning.”
Rick works with the families of those affected by Alzheimer’s or another dementia helping them access a wealth of resources about the disease and free services such as care consultations, respite and support groups.
“I also feel I can help people heal,” he said. “Alzheimer’s is inevitable and can affect people of any race and any socio-economic level. I met people who used to be CEOs and professors and who now live with dementia. When our parents’ memory declines, they become repetitive but they don’t realize they are doing it. We thought our parents were invincible but now we have to give them tough love and may need to say ‘Give me your car keys, Dad.’ It’s natural that you as a caregiver feel frustrated. Being a caregiver is stressful and overwhelming.”
Rick shares with other caregivers simple communication techniques that can make the experience easier for both the loved one with the disease and the caregiver. “It’s a learned behavior. It takes a lot of patience. You have to live in their world so they can feel safe and loved,” Rick reflected.
“It is hard to deal with the emotional state caregiving brings. Vielka and I thought ‘Oh, my God, all this calamity is falling on us’ and we were not ready for it. But we were put in this situation and we had to handle it. We chose to pour love into mom and I knew our situation would get better,” said Rick. After a silent moment, he added, “You can either have a loving heart or you can care for a loved one grudgingly.”
If you are caring for your loved one and would like to learn more about the various resources for caregivers available at the Alzheimer’s Association in Greater Rochester and Finger Lakes region, call 1-800-272-3900 or visit www.alz.org/rochesterny.