Christiane Shaughnessy, a volunteer in the Illinois Chapter Chicago office, is from Germany and has lived in the USA since 2002. Although she has lived in many cities, Chicago is her favorite and her home. Two of her sisters, four nephews and her mom live in Germany and love visiting here. Christiane guesses “It must be Garrett’s!” She and her husband Patrick are avid motorcyclists whose last trip was across Canada when moved back to Chicago from San Francisco, including side trips through Oregon and Washington, with stops in Whistler, Banff and Calgary. “It was awesome!” she says.
What is your personal connection with Alzheimer’s disease?
My father was diagnosed with Alzheimer’s disease at age 60. We suspect that his mother also had dementia although she was never officially diagnosed. My father would have turned 80 this July. He passed in January of this year, ironically on the same day that I signed up for the Walk to End Alzheimer’s. It was a long time coming, yet it was still a shock. Especially for my mother…she cared for him single-handedly and had only put him in a home last year. It took her this quiet, last phase to come to peace with his disease and their relationship.
Alzheimer’s is an extraordinarily cruel disease – not to take away or minimize other deadly diseases like cancer, heart conditions or AIDS – only that with Alzheimer’s you have to say goodbye twice. And the first one is painfully slow, unavoidable, gradual but finite. And then you hopefully have support (thanks alz.org!) and can learn to live with a sick person who cannot recognize you anymore. And no, it’s not and never is as romantic as in The Notebook – it is more like “Still Alice”.
Hopefully, you have time to give love to your parent or spouse, probably saying sorry for all the yelling and misunderstandings of the prior years… and then you are at peace. And you wait. And then you get the call – and fly home to say goodbye one last time.
What led to your involvement with the Alzheimer’s Association?
We were planning our wedding and I gave my fiancé some “party favor” options and he groaned and said that he simply hated them all. Patrick suggested donating $10 in each guest’s behalf to our favorite charities instead. So we made name tents that said on the inside “in lieu of a party favor, we would like to donate $10 in your name to one of the following charities…” and then the guests chose between the Mayo Clinic, where Patrick’s parents passed, Close Concerns, Patrick’s sister’s diabetes foundation and – to honor my father, who could not be at our wedding – the Alzheimer’s Association. We put up three cork boards up and found plenty of twenty-dollar-bills among the name tags! Our donation took us straight to the Champions Club of The Walk To End Alzheimer’s where we were roped into sitting on the committee the next two years.
What kind of volunteer work have you done for the association?
We volunteered for The Walk to End Alzheimer’s in 2013, and worked on the committee for the walks in 2014 & 2015. In April of 2015, we were table hosts at the San Francisco’s inaugural “Reason To Hope” breakfast. Since we are back in Chicago, I come to the Illinois Chapter office once a week for four hours. They are very flexible (forgiving?) with my starting time, but I always make sure to work for four hours or to finish my project. I’ve been coming here since October and feel as if I’ve been doing this forever – in a good way! Sometimes I work on special “quick” projects like transferring addresses or phone numbers from document A to system B, or stuff envelopes for an upcoming mailing… or write Christmas cards! I wrote 138 last December. Sorry to my family that you didn’t get any from me that year … my wrist was sore.
Mainly though, I am helping the team behind the Helpline to keep their database up to date. Which means that I call each and every nursing home or assisted living facility in Illinois, doctor or medial group, diagnosis center and care center to see if they can care for patients with Alzheimer’s disease and if so, to which degree; what services are they offering – respite for the caregiver? Memory care? Are they secured? Do they offer hospice service? Those are many questions to ask and it takes quite a bit of patience every Tuesday…but then I know it is important to get this right. And I thank everyone who’s been nice to me on the phone!
Why do volunteer with the Alzheimer’s Association? Why is it important to you?
Everyone has something she feels especially strong about, right? Stray dogs in Portland, adoptive services for gay couples, soup kitchen for the homeless… There are so many causes you can get behind! Do it. Pick one and give your time, talent and treasure! I learned a while ago that it might be better to give “a lot” to one charity then to give little bits here and there. While I am currently not employed, my “treasure” isn’t much, so I give my talent; my time, my voice, my tenacity. That’s the least I can do for my father. I wasn’t there during his illness (apart from infrequent visits to Germany) but I can carry on in his name here and now.
Why do you think others should volunteer with the Alzheimer’s Association?
Find a cause that is close to your heart. That will carry you through the tedious tasks and the hours when you think “why am I doing this?”
With the Alzheimer’s Association, you have so many opportunities to do good: you have more treasure then time – host a table at the Reason To Hope luncheon! You have more time – start a team for The Walk! You have talents: come into the office! They are always HAPPY to have another person helping with the mountains of work that these ladies and gentlemen climb every day.
Non-profit is hard work and not always glamorous. If you can lend four hours to give a hand, that’s fabulous and much appreciated! As a volunteer you are always respected and welcomed with gratitude.
I do this in my father’s name. I hope he’s proud of me.