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
Guest Blogger: Susan Molloy
April 24, 2009
Little Susan and her beautiful mom
I met Susan over a year ago at our support group in New York City. She and I were both pretty new to the support group and we got each other — could appreciate the other’s story, understand the overwhelming sadness. Going to that support group, I think we both felt uncomfortable, yet relieved that we weren’t alone, yet scared and horrified that we were actually in this situation. Susan’s story always makes me sad. Susan is an only child and the weight of her mom’s disease falls squarely on HER shoulders. She is it. She makes the decisions. She carries the all the stress. She makes all of the sacrifices. She bears all of the guilt. She travels up to her mom’s home in Massachusetts often, but despite the heaviness of her story, Susan is determined to have a life and is on her way to finding some calm. She is finally getting her mom’s care in order with a live-in and now she may be able to enjoy those precious, simple moments (like reading a book, going for a walk, those first moments after you wake up) without stress, guilt and anxiety taunting her. Not always easy, remember balance for many of us isn’t always attainable.
Thank you Susan for taking the time to guest blog. I hope her story touches you as it does me. She is one tough mama and I love her! KAT
I am the sole caregiver for my mother who has Alzheimer’s. I am not going to lie. It is the hardest thing I have ever had to deal with in my life. It is heartbreaking, exhausting mentally and physically and there is no one else to help me. Most of my friends, as hard as they try, don’t understand. I didn’t understand either how difficult this journey would be until I was in the middle of it.
I was urged by some friends to join a support group when my mother first got diagnosed and I didn’t. I kept telling myself, “My Mom isn’t as bad as those people, she could stay like this for the next 10 years. I will deal with it then. She is progressing slowly”. The list goes on. When I did finally join it was because I was so depressed and felt so isolated that I was scared for my own mental health and ability to continue to deal with it alone.
Now I can say, I wish that I hadn’t waited to join. It is my lifeline and I don’t think I could survive without it. It is remarkable how good it is to be with people who are going through same thing you are. It makes it so much easier. There are people whose parents are further along than my mom and can tell me what their experience during that particular phase was like, or what came next. There are people who are going through exactly what you are going through and that makes it seem easier somehow. There are people who are at the end of the disease and you can see that somehow they made it and you can too.
I have been able to find the humor (and there is humor) and the joy( and there are moments of that too). The need to laugh is so great. I can’t begin to explain what a release that is. If you find one thing through this, find the moments to laugh. Share the laughter with others. It helps you to heal and gives you a break from the enormous sorrow.
I also think support groups are great for the practical aspects of this disease. You need to know what your options are financially. You need to take control of assets and finances early on so that Medicaid doesn’t take everything your parents worked their entire life for. Don’t stay in denial like I did. Act fast and things will be easier when the disease gets harder.
Get in with an eldercare lawyer as soon as possible. Most states now have a 5 year look back period. It seems like a long time, but it’s not. People in your group can help you with names of lawyers and nursing homes and daycare centers and home health aids. It’s great to have those resources from people that are going through it. They know better than anyone.
At the end of the day, I am still making all the decisions by myself, but having a support group makes me feel not so alone in the world. I wish I had had the courage to join a group when she first got diagnosed. If I had one piece of advice it would be this: don’t wait until things get bad to join a support group. Do it as soon as you can so that you can start to make plans for your future and the future of the person you are caring for. It is the most important thing you will do for yourself along this journey.
