A sense of camaraderie

As I have begun sharing my father's stories and the daily adventures we go through as caregivers I have also become aware of a support system that I never knew I had. With regular caregivers in our family, our individual loads are reduced but we have to know that we can depend on each other. Most of the time this is not an issue. Dad's daily care includes observations that we have begun sharing in a handwritten journal I have left on the table. Sometimes, entries take up a page or more while others are just a couple sentences about Dad's demeanor. It is my hope that the journal will help bind us together in our communication about Dad's condition.

For the past three days, we have all been somewhat iced in (a rare occurrence for North Central Texas) and communication about Dad's care has been a high priority, particularly asking for additional help from whoever has a heavy vehicle/truck that is likely to make it over the ice to check on him. We have all been communicating back and forth. Mike and Bradley have been the biggest help, braving the ice to insure Dad's safety. The ice isn't due to really melt until tomorrow so their help has been incredibly valued and appreciated.

Support among family members is pretty common (at least I hope that is the case) but I have also found that since my online journal began I have had supporters I never knew were there coming out of the woodwork. One of my friends, Elliot, wrote the following message to me after reading my first two entries:
"Erin, I just read your blog through tears. It is beautiful and heart wrenching. While my experience was different (because everyone's is), it was strikingly similar. While dad had his three year battle with cancer, his mother had her Alzheimer's battle going on, and while she was in a facility, her social life and major decisions fell on my shoulders. For most of his battle, dad was in some sort of chemo and could not be in the place his mother lived because of germs. When she was passing, he had just had a stem cell transplant, so I coordinated her funeral here, as well as one in Kansas where she was buried. I don't know why I just unloaded on you. Maybe for a sense of camaraderie, or maybe to let you know you are not alone. It's tough. It will get tougher. But you will get through it. And your friends who don't seem to get it will eventually get it. Oh, and the good friends? When you feel like punching someone? They will stand there and let you punch them. Give them that chance. Hang in there."

This outreach was extremely moving to me because I have known Elliot for so long and never knew his personal struggles with his parents. We have been friends since grade school and had I known he was going through such tough times I would like to think I would have reached out as he so graciously did for me. The loneliness and sense of pressure caregivers feel can be very isolating. It is a deeply touching moment when someone offers a hand of emotional support.

 Another friend, Katey,wrote:
"Hey I've read your blog. You've brought me to tears because on some level I know what you're going through. I lived with my grandfather while he was in the final stages of Parkinson's & dementia & with a grandmother who wanted nothing to do with helping him. My dad had his ruptured aortic brain aneurysm almost 10 years ago & he's not been the same since. Thank you for sharing & opening up your experiences to others."

It broke my heart for her to read that her grandmother had rejected supporting her life partner but reminded me what a strong friend I have in her. I know I could discuss anything with her, any aspect of Dad's care (and what might be best not to publicly share for the sake of his dignity) and she will understand. I have not known Katey very long but can honestly say she is one of the most trustworthy people I know.

One of Mike's former coworkers, Toni, also wrote to me:
"I truly can relate to your blog Erin....as you know we take care of Wayne's mom. And his dad also before he passed. They both lived in our house and his mom still does. His dad had Alzheimer's and this is so true. Wayne's dad was very belligerent and he also would say foul things that he never used to do from what I understand. Thank goodness his mother has not yet gotten Alzheimer's. I enjoyed your blog, I know that other caretakers would definitely benefit from reading about it. It would give comfort to them seeing that they are not alone, and strength in knowing that it is "the disease". Being a child of a parent with Alzheimer's is so cruel....having to see their loving parent, their idol, the person they have admired so has become someone they can't recognize...someone they sort of grow to detest....and then how are we supposed to remember them as we knew them, the way we want to remember them...That is the cruelest thing we should never have to endure. Bless you, Erin...for your strength in this...you are doing the right thing. You know what your dad would think if he was in his right mind. Sometimes we have to cry or scream...and remind ourselves of how they were by looking through old family photographs, etc., but writing is also good. And you will be helping others tremendously as well. Hang in there."

Such a good woman with a beautiful heart, she has been a constant support through my writing of this journal.  

Finally, I would like to include a message from my friend Valerie who lost her mother a year ago and wrote:
"I laughed out loud.....and then cried. I celebrate my grandmothers birthday today, I lost her to Alzheimer's long ago. You are an incredible daughter. Your Dad may no longer be able to express this but his undying spirit always will know. On the not so funny days I hope you see and feel the bigger picture. I hope you know you are his hero. Even when it doesn't feel that way."

I know part of her message was not as much from the loss of her grandmother but her more recent loss, but any loss is soothed by knowing someone cares. To "Valerie" (you know who you are) I just want to say how lucky I am to know you and appreciate how much you have cared for me and my family through this new phase we are traveling. Love you, sweetheart.

Until a few weeks ago none of my siblings knew I was writing this blog. One day when I arrived at Dad's house, Hillary was still there. She was talking about how whenever she emails friends and acquaintances she feels she goes on and on. As I have mentioned before, Hillary is a talker and none of this surprised me. Having only recently been diagnosed as being severely ADD in her fifties, I feel she really has something to contribute to the world considering her coping mechanisms that got her this far in life. I decided to gently approach the subject of my online journal.
"Have you ever thought about starting a blog?" I asked.
"Actually, yes but I don't know how to begin", she responded, obviously very interested in where I was going with this.
"Can you keep a secret...I mean really, really, really keep a secret?" I asked.
"Yes..."
"I have a blog. I've been writing about THIS (gesturing to Dad). All of this. I have changed everyone's name but it's really out there. I'd like you to read it, but before you do I want you to know that it is very straight forward and written as events have actually occurred. It is growing and growing. I have readers in six different countries now!"
I was very concerned she would not approve but I have to say she has been wonderfully supportive. "You have to keep going on this, Erin. You are helping people. You are letting them know they aren't alone. This is a really good thing", then she asked, "How would I start a blog?"

"Straight forward" I suggested. "My first words were 'My father has Alzheimer's.' If I were you I would start with 'I am in my fifties and just found out that I have severe ADD and have had it my whole life." I don't know when she will start it but I am excited for her and can't wait to see what she writes.

If you are going through this, my hope is to show that these messages are not intended to pat myself on the back. These message are for YOU. YOU ARE the caregivers all of these friends and acquaintances are talking about. I know what I'm writing is really not that unusual, other then I try to add as much humor to it as I can because I think humor is a vital element to survival as a caregiver. Without a sense of humor, the weight of your burden will kill you quietly.

Readers have also written their support and I thank them for that sense of camaraderie, as Elliot put it so well. My point in this post is to encourage my readers to reach out, even blindly if necessary. You never know where your support will come from. Like the steel supports of a building, everyone counts...every support gives you more and more strength to go on and improve, to seek new approaches, and to become a better and more patient caregiver. You will need all of it for your journey.

To be continued by ALL OF US...