After having been diagnosed with Early-Onset Alzheimers three months earlier, and in August 2016, I re-purposed my life focus on helping people because that is what fulfills me. So I created www.withalzmyheart.com to help people who are recently diagnosed with the disease, especially those like me with early-onset. Once the website was established, I still felt that there was something else I was supposed to do.
One day I stumbled upon a ‘closed’ Facebook group made up of dementia caregiver families. The typical situation was a female caregiver of a parent or a spouse. There were some males, but by far the majority were females in this large group. (14,000 then and now well over 20,000.) As you know, when you join a group, the group’s feed comes into YOUR daily Facebook feed. You don’t have to go to that group to see what is happening, it comes to you. I was overwhelmed with sadness as I began to see the reality most of these caregivers were dealing with.
I was reading both what I was going to become, as the disease progresses in me, and also seeing how difficult it is to take care of someone as the disease slowly causes them to lose all the functions of an adult. They lose cognitive functions, common sense, the ability to speak, remember, focus, understand, continence. They lose the ability to take care of themselves. It is like they are reverting back to being a teenager, then a child, then an infant and eventually death.
Some caregivers in the group would vent about how their family has abandoned them or how hard it is to navigate government help, or how their husband just peed on the carpet or refuses to be bathed. Some would share about being hit, kicked or attacked by their loved one and not sure what to do because they knew it was the disease, not the person.
Eventually, I saw the same scenarios playing out over and over with each of these caregivers. One of the saddest things I began to understand is that they feel abandoned and alone. It became very difficult for me to read all this. I used to be a counselor. I was a fixer. I had answers for most situations, but I had no answers for what these precious caregivers were going through, it really bothered me!
Then I realized… this is what I was supposed to help.
But, I knew I could not help them by myself, I am only one person. They need someone right there in their home, helping them. They need someone to help them keep their home functioning, to mow the lawn or fix broken things or show them how to navigate things online that could help them. They also need a break from their reality and to experience life outside their home. They need more than their Facebook lifeline. They need real love, and support.
I realized caregivers have been hurting for a LONG time; they didn't have much of a voice, there was very little 'awareness' of this vast group of people. And, the government hadn’t done much and wasn’t going to anytime soon. That was very disheartening, which led me to ask myself the question: “If the government isn't going to help, who can?” Immediately the answer came to me… the faith community.
I was stunned that ANY answer came to me. But as I thought about it, it made sense in the most basic ways. They are geographically spread out around our country in every community, just like caregiver families are everywhere. There are so many caregivers (66 million in our country) that it is probable they are located within blocks of local faith-based organizations facilities (Churches, Temples, Synagogues, Mosques, etc...).
The faith community has an essential resource - millions of people. And, they have something the government will never have… motivation, love, compassion, and the ability to provide emotional support.
Part of their motivation comes from the tenets of their faith which instructs them to help the needy, the poor, the elderly. Some faith organizations both national and local have reached out to help those within their membership. But, they are not aware of the unaffiliated caregiver family living three blocks away who needs help. If they did they would.
Because the idea is simple, I wanted to design a practical and simple way to facilitate it. Living in the age of the internet gives me the tools. Read the next section about How It Works.