By +Bob DeMarco
+Alzheimer's Reading Room
If it were not for the Alzheimer's Reading Room, I often wonder what my life as an Alzheimer's caregiver would be like? I consider myself to be fortunate.
During this last year, I have met more wonderful and fascinating people than most people could meet in a lifetime.
As a result, I am never lonely and I am never alone.
The dynamic and the interaction with these persons is always interesting and often uplifting to me. When I say everyone, I am referring not only to the people that emailed me but also to every single person that has taken the time to make a serious comment on this blog.
I do consider the people that I email frequently to be good friends. Odd, because I have never met any of them in person. I do talk to some of them on the phone. Most of the communication takes place via email.
Beyond these good friends, I have too many friends to count. They email me and tell me their most intimate thoughts. Occasionally, I receive long detailed emails where someone tells me how they are feeling. They vent, they tell me about their difficulties accepting Alzheimer's, they share their successes, failures and angst. I understand how they are feeling. It is easy to understand and empathize, been there, am there.
When people email me they make me laugh, they make me smile, and sometimes they make me cry. Not all of the emails are dark, many bring in the light.
In my real life many of the most interesting and best people I know have faded away. Its not all their fault. I am hoping to reattach at some point in the future. Only time will tell.
I have this life right here. I am proud to say its a big life. Very big.
As my mother has worsened my social life has dwindled down to almost zero. Or has it?
I now notice I am getting asked more often about "my social life". Do you get out? Do you go out? Can you go out? Do you have any time of your own? I am not worried about me. I am worried about the millions of caregivers that might answer the question the same way I just did. I'm worried because I know they are lonely and are often abandoned and/or feeling abandoned.
Most people run from Alzheimer's they run away as fast as they can. They run. They are the sprinters.
The Alzheimer's caregivers on the other hand are the long distance runners. They don't run away from Alzheimer's, then run with it. They run and run and run, but then have to ask -- where is the finish line? Where is it? What does it look like? What will it feel like to cross the finish line?
Loneliness is a problem common to Alzheimer's caregivers. Rare is the Alzheimer's caregiver that doesn't feel lonely.
Alzheimer's caregiver say...
- They experience a general sense of emptiness.
- They miss having people around.
- They feel like they don't have enough friends.
- They often feel abandoned. They miss having really good friends.
It comes to me when I can't have a serious in depth conversation with my mother. I would like to talk to her like we did in the old days. I would like to hear her opinions. What she is thinking, what she is feeling? She can't tell me.
I miss the time when I could ask her what she wanted to eat for dinner, and when she could give me an answer.
I miss when I would take her to the mall and she would disappear. She was always hard to find. She was hard, impossible to spot. And then she would just pop out of nowhere. Uncanny.
I do miss having real people around. I am fortunate, I have a great imagination. I always make up a face for my virtual friends. I see them even before they finally send me an image. I hear their voice when I read their emails, even if I have never heard their voice. Now that I think about it, they are real people.
Judy Berry looked a lot different then I thought she would. Angil didn't.
I know what Max looks like. But, if I didn't have his image, and if I didn't know his age he would look very different. I have to pinch myself when I read his words. For some reason I have to continually remind myself, he is thirteen years old. In many ways, Max makes me want to tell the future to hurry up and get here. I can't wait to see what happens with Max. Whatever it is, it is going to be important.
I understand why Alzheimer's caregivers feel abandoned. Been there.
I didn't like it in the beginning. After a while, I decided to accept it as a part of the long distance run. Alzheimer's did cost me a relationship. I don't blame anyone. Its part of the long distance run. I am looking forward to the future with more people in my life. But, I refuse to allow Alzheimer's to make me feel sorry for myself. I continue to run.
There is a wonderful counterpoint to abandonment. This counterpoint is the mission you are accomplishing.
When your mission as an Alzheimer's caregiver is accomplished, sooner or later you will be filled with an enormous amount of fulfillment. You will have accomplished something that you won't be able to explain and you won't have to explain. You'll know inside, and that will be more than enough.
You might, however, meet another Alzheimer's caregiver that has run the distance. You won't need to explain to them. They know. They'll look into your eyes and you'll know they know. They understand. I haven't been there yet. But, I know because I have looked into the eyes of other long distances runners. I have read their words right here.
For now, I'll continue my long distance run with Alzheimer's disease. I learned the more you run the stronger you get. I learned I am not running alone. I'll go the distance and along the way I'll meet more and more of the runners. I hope they decide to run with me.
I just wanted to let everyone know. I won't stop running when I cross the Alzheimer's finish line. I'll run the next race. I'm looking forward to that run.
You see, I have a lot of good friends, they have accomplished their mission, and they are already running the new race.
For now, I'll run with the other Alzheimer's caregivers.
If we run together we won't be lonely, we won't be alone, and we will cross the finish line.
We won't have to tell. We'll know what we accomplished deep inside.
For me, that will be more than enough.
My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy lived with Alzheimer's disease. We went the distance.
Original content Bob DeMarco, the Alzheimer's Reading Room