A dementia diagnosis can be devastating for everyone involved. Like any major disease, this is a whole family issue. It does not only affect the person with the disease. And this diagnosis can be especially painful if it comes early in your life.
“Bob and I had both been noticing some changes. But whenever I tried to mention anything he would blow up. So, I pretty much stayed silent. And I worried. Then he was called into a meeting with his boss at work. His productivity had been slipping and he was making some major mistakes. His boss Jerry was kind but firm. Suspecting dementia, he wanted Bob to have a full workup with his doctor. Bob was diagnosed with early onset Alzheimer’s Disease. This is the number one type of dementia we were told. And though we both suspected this, it was devastating!”- Carrie
Life Changed In A Heartbeat
Overnight Bob lost his job and with that his identity. His wife Carrie was thrust into a new role, that of a family caregiver. This is a role few are prepared for. Once they came out of the fog that surrounded them after the diagnosis Carrie began researching. She wanted to learn everything she could about this disease.
“Bob has always been a private person. As such, he did not want me to tell anyone what was going on. He didn’t want friends, neighbors or even our children to know what was happening. He wanted me to say that the company was downsizing and like many people in their late 50’s Bob was let go. It was a plausible excuse. But then people started calling with job opportunities. The kids called wanting to know if Dad had found a job yet. It all became too overwhelming for me! I did not want to keep this lie anymore. I needed support too!” – Carrie
Bob and Carrie Had a Long Talk
In the end, it was agreed that the dementia diagnosis would be revealed to close friends and family only. And this would not happen until they had some kind of a plan in place. Through Carrie’s research, she realized that an appointment with an Elder law attorney was in order. She and Bob attended a free workshop at The Hilbun Law Firm in Cypress, Texas. These free workshops are held weekly. It was a good first step to gather information.
Connecting with the Alzheimer’s Association
She also made an appointment to speak to a counselor at the Alzheimer’s Association. The counselor gave them a lot of good information about how to tell others about your dementia diagnosis. Everyone’s journey is different. It is important that how you choose to tell people is the way you are most comfortable.
Time to Tell The Truth About What Is Happening
Does it need to be in person? Bob and Carrie’s children live 3 states away. Waiting until they would all be together was not an option. So they decided to set up a 3-way video chat. That way both of their children would get the information at the exact same time. No one would feel slighted. They told the children they needed to talk to them together and set up a time when everyone would be available. They asked that the grandchildren were not in the room when they spoke and that their children set aside at least 30 to 40 minutes for the conversation.
“We knew they would have a ton of questions and concerns. Having already gathered information from their attorney and from the Alzheimer’s Association we were prepared to answer. And it went better than we thought”
Bob also felt he should let his colleagues from work know why he was let go. There had been a lot of gossip around the office. But he felt more comfortable crafting a letter. Once finished he asked his wife and his old boss to approve before he sent it out.
In the letter, he let his colleagues know that he still valued their friendship. And as such, would still love to be included in a game of golf or lunch with the team sometimes. “I am not dead yet!”, he told them. He also referred them to the Alzheimer’s Association for more information on Early Onset Alzheimer’s Disease.
Both Bob and Carrie said they felt much relief after coming clean. A Dementia diagnosis is a heavy burden to carry by yourself. It really does take a village.