A New Friend or Speaking of Alzheimer’s (dot, dot, dot)
January 21, 2010
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.
Thank you Lori for giving me permission to share, and good luck with the book! Please check out Alzheimer’s Speaks and don’t forget to check out her blog and add it to your blogroll!
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
Ramblings of a Damned Daughter. Love. Family.
December 24, 2009
I’m just gonna say it. I am not digging Christmas this year. At all. 2009 has been, all in all, a challenging year for me and I just don’t feeling like toasting the holidays. OK, maybe I’m focusing more on the negatives of the year — there have been plenty…… but lots of positives too. Good job. Good friends. Lots of love. Kind acts. Two balls of fluffy kitten love. Sunny skies in December. Parents who love me very much. A mother who still tries to mother me……………… in her own demented way. I suppose love is the thing. Love takes strength. Love is courage. Love is fearlessness. Stare love in face. See what you get back.
Interestingly, I’ve been called a pessimist or negative a lot this year……
thing is, I challenge anyone to walk in my shoes (or any caregiver’s shoes, especially the full-timers) and still see the silver lining every second of every day.
I struggle with that label: NEGATIVE. But the thing is, this disease never really lets me move on. Every week is a reminder of the loss. When the holidays come around, it’s like taking a BIG YELLOW HIGHLIGHTER and highlighting the fucking loss……… specifically, the loss of family or what I always wanted family to be. Happiness, lots of people, a big living room filled with tinsel and laughter.
My heart is filled with a mixed bag of emotions…………….sadness, happiness, grief, anger, passion, frustration, love, joy, wishes, fears, anxiety, wildly vivid dreams, HOPE.
I confuse myself.
There are days when I feel strong. There are days when I am my own worst enemy. I have no idea when this is
going to end. It’s terrible to say, but when I think of HER death, I think of the ties that bind being cut loose. FINALLY. Freedom? I don’t know. Will guilt consume me instead? Will the holidays serve as a reminder of how I failed her or how I should have done more?
Negative.
Blue.
Life is good.
Optimist.
Glass half empty.
Full.
Family.
L’amour.
Death.
Dark.
Angel.
Dismal.
Blue.
Me.
Nefarious thoughts.
I have no bits of wisdom when it comes to any of this.
I could give you my usual HOLIDAY TO DO LIST: Keep the crowds to a minimum, it may confuse your demented parent. Try to stick to the schedules. Don’t ask, “Do you remember…….,” avoid celebrating around sun downing, etc. You know this. You can Google this…………. instead, I want to talk about the caregivers and how the holidays affect all of us, part-time, full-time, near and far.
Dementia is a TERMINAL disease.
We are the damned ones.
Oh dear.
This post has turned quite negative.
I’ll leave it as such.
A dash of hope.
There is a light, but there is also another tunnel behind it.
REALIST.
Mom? Are You There? A Story of the Grotesque….
December 22, 2009
When feeling incredibly depressed, my instinct, mind you, is to avoid God and sort of house of worship at all costs. Seriously. My salvation is more spiritual in nature…. I’m more of the watch-romantic-comedies-and-eat-lots-of-pizza-and-drink-wine school of thought.
It was poetic. A brief reunion that seemed promising. Hearts had changed, feelings were still there and incredibly strong. I told only a few people and it was my When Harry Met Sally moment. Was my happy ending really in sight? I wanted to jump down the rabbit hole with this man. In fact, I had decided to take the plunge — to follow Alice in Wonderland and see where I would end up.
hands in delight. “Around the World” can have that effect, I suppose.
I wanted her to know. I wanted a lucid moment where she would sympathize with me. Give me a dose of wisdom. Tell me that it would be OK. That I am not damaged or grotesque. That I am OK. So, I tried to tell her what I was sad about. I thought she might get it. I don’t know, maybe the thick fog that envelops her mind would clear for a second and reveal the woman who used to be. My mom.
