I have a few friends that I know I can call or send a message on Facebook who will answer ASAP….. If something happens with my mom and I need to talk. I know one of them will be there. Interesting thing, we don’t talk much outside of Alzheimer’s. Even when I lived in New York City, I only saw these people about once a month…….. when we did meet for 3+ hours, we laughed, we cried, comforted each other, spilled secrets, made startling confessions about ourselves, our parents and the players in our lives.
Sofa (inside joke).
This was my NYC young adult Alzheimer’s disease support group……. a bunch of 20 and 30-somethings getting together once a month to share stories about our demented parents….. and how we’re coping with it all.
Yes. I realize. This is not the “normal” way to make friends.
Stil, what amazes me about this motley crew, who still meet up once a month (minus me), is that in all likelihood, our paths would have never crossed had it not been for my mom — or their own sick parent. The actress, the professor, the fact checker, the accountant, the marketing exec…… people I never would have met if it weren’t for my mom. They are a blessing to me……… and her disease is a curse. I care for each of them very much — even if I don’t see or speak to them often. I think of them almost daily. I see them on Facebook. I comment on their lives. I miss seeing them. Sharing stories about my mom and dad and how things are going in my demented world.
When I left NYC, I left my support group.
Another loss in a way.
So as I navigate the world of Alzheimer’s and dementia, meeting others who are in my same or very similar lifeboat is important. It reminds me that I’m not alone and that there are other people willing to listen. To be a friend.
I stumbled upon Lori’s blog, Alzheimer’s Speaks, and reached out to her to see if she would guest blog or share a story on My Demented Mom. We spoke for over an hour about our moms. Her mom is in the final stages of the disease and Lori is chronicling her story and other stories in her blog. She’s also working on a book due out sometime this summer, tentatively titled, “Alzheimer’s Speaks
Guiding Caregivers To Be Their Very Best! Giving Voice and Enriching Lives—As the Cookie Crumbles.”
I like Lori. She gets it. She gets that this isn’t a cute disease……. It’s really rather sick and twisted. The beautiful thing about Lori is that she tells it like it is and does what she can to make her mom’s life as pleasant as possible — even if it upsets other people, or makes them uncomfortable because they are witnessing the grotesque.
Raw. Grotesque. Dementia.
Painting a picture of dementia is something I’ve done using my mom. Other guest bloggers have mostly focused on their personal experience, their pain, their ability to weave this disease into their lives and making the impossible, possible. So while I tell stories about dementia using my mom, I wanted to paint another picture, using another soul……..in this case, Lori’s mom………. this is a great story and another portrait of the disease.
By Patty Lien: This is a wonderful story written about my Mother attending a wedding a of good family friend. Thanks Patty for writing it!
Dorothy has been a major part of my life since I was born. She has as well, been a part of the lives of my children. My parents were best friends to Dean and Dorothy; and they built their retirement homes side-by-side. My parents passed away young, and my husband, children and I, ended up being neighbors to Dean and Dorothy. It was Dorothy who hosted my own first bridal shower, and it was only natural that she was included in my daughters wedding preparations and celebration. She had watched her grow all the way from birth through college.
On the day of my daughters, Kelly’s wedding; the gals at Dorothy’s care center took special preparations in dressing her and fixing her hair. All the while, she apparently told them about the wedding. At the Catholic ceremony, Dorothy, who is Lutheran, wanted to receive communion. And she did…not only from the priest, but from each of the four others distributing communion to the congregation as well. Right down the line she went, getting a Host from each of them. And, as she turned to walk back to her pew, with her son Scott helping her navigate; she smiled and bestowed the “Queen Elizabeth” wave to the entire congregation as she passed. She visited and shook hands all the way back down the aisle.
After the ceremony, I went up to Dorothy and greeted her, “You look so pretty today Dorothy”, I said. “Did you enjoy the ceremony?” Without missing a beat, she advised me that, “Of course I did. I’m the Mother of the Bride. Aren’t my children beautiful? I love my children.”
To me, that was one of the “beautiful moments,” of the day. Reality isn’t for an Alzheimer’s patient, necessarily what we perceive it to be. She was happy. That was her reality. The wedding was about love. Being loved, loving others, and sharing a moment with those people in your life that you love. It did not matter that she was confused about which people were her children. She had known each one of them since the day they were born. But in that brief moment, when she was happy and celebrating…she knew she was a Mother. She was a Mother who loved her children, and that made her happy. This is what makes it a beautiful moment. Her reality was complete. She was surrounded by those who made her happy, safe, and loved.
And, if this is your reality at that moment…and you aren’t the Bride…you may as well be the next best thing!
>>Photo from Flickr, Photographer craigCloutier