This Is My Reality

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Marilyn Edwards, Florida

I am a former caregiver for my mom with Alzheimer’s. It affects so many people, and will only increase and cause devastating emotional and financial problems. This community (Alzheimer’s) needs so much help, and I see it’s not being discussed or taken seriously.

I’ve heard it talked about saying things like “how horrible, what a shame, heartbreaking, some people have lost everything taking care of their loved ones, finances are gone, depression, aging … can't find work, isolated from family and friends … they don’t want to get involved. …” But I see it is not being discussed in the media, politics, Federal, State, city, promotional ads, Alzheimer’s Association, special forums, fundraisers, spokespeople. You cannot sweep it under the rug. It is a terminal disease effecting millions of people around the world. For that matter, not nearly enough education or training for the general public, caregivers, nursing home workers, and that includes everyone up to the administrators, nurses and doctors. People are suffering.

So, I would like to know what is being done for those of us that have experienced it all and are still living a nightmare. What about those who will be experiencing this now and in the future, and there will be many more. The government isn’t talking about it, most networks, big organizations, BILLIONAIRES, philanthropists, don't want to talk about it, it’s a taboo subject.

Because my mom's Alzheimer's disease went on for years, I am almost done trying to get some kind of life together. I went to work after my mom passed away just to pay credit card bills and live a meager life. I ended up in the hospital last year with a serious autoimmune disease, I almost died. My disease needs to be monitored and requires medication for the rest of my life. My retirement and savings, home, everything is gone. I don't have a place to live. My choices are government funded (actually — not funded) low income apts., Section 8 housing, so-called government vouchers. In the state of Florida, Pinellas County, all of these facilities are full and have waiting lists of up to six months to five years. I have called about all of them. Now I have no options left.

My goal in life after my Mom passed away was to try to change all of this backward way of thinking, to pass on things that I learned from being a caregiver for over 12+ years. Before this disease hit us, I was a successful entrepreneur, a strong businesswoman, active trying to do good — to make a difference. I loved my family, I loved my dog, Harry, who was the love of my life, still is, but there was no one to take care of him so I had to give him away which breaks my heart. So, I'm totally alone. No one is listening to me. The world needs to, has to, change.

Being materialistic and keeping up with the Jones’, instead of caring about the fate and the wellbeing of your family, your neighbors, your fellow citizens, is taking us into a downward spiral. I know how hard it is to sacrifice, and so many others know, it is very, very hard, but you can do it, however, there has to be some help, some compassion, everyone needs to get involved … it's everyone's problem. We need to take action now to help with those that have chosen to open up their hearts to be a caregiver.