Family of Strangers
In this humanity,
In which we all live,
We are all a part of each other.
What a wonderful world we will inherit,
When we recognize ourselves
When we meet.
-Don Malcolm
When Debbie Craig climbs Mount Kilimanjaro later on this year, she’ll be doing it for a client - and a friend.
Debbie first met Don Malcolm on a professional level.
She offers respite care for families of Alzheimer’s patients. Don was diagnosed with the debilitating disease in 2008.
“We have a mutual friend who knew I was working with somebody with Alzheimer’s already,” explains Debbie. “When Delores and Don decided to add another friend to the mix, Janet [the mutual friend] heard about that and I came over and met, and Don and I made friends that day.”
Debbie spends up to 12 hours each week with Don, freeing up time for his partner, Delores Broten, to carry out her duties as the editor of the Watershed Sentinel. It is funded through Island Health’s Choice in Supports for Independent Living program. Delores says CSIL is a practical option for their situation.
“VIHA (Island Health) also offers this thing where they have case workers rotating around, but for dementia care that is not very useful, because you have a different person showing up all the time... But we got this CSIL funding and everything has been ... running smoother.”
Having a consistent routine is one of the most widely accepted care suggestions made by experts in the disease. A rotation of different caregivers can be confusing for the patient. Confusion can lead to fear – a common emotion of Alzheimer’s patients.
“When I met Don two years ago, he was a very different person,” says Debbie. “He was already well into the disease, but we could still, sometimes, have philosophical conversations.”
Now, two years later, the disease has taken grip of Don.
He was present during the interview, but not altogether involved.
He sat patiently, sometimes listening to the conversation, sometimes gazing around the room.
He would participate when called upon, but often had to be reminded of what was being said.
At other times he would rap his fingers on the table, sigh heavily, or simply look over at Delores and smile.
“The Don I first met, he is gone,” says Debbie. “He has become more child-like – more afraid.”
Debbie alleviates some of Don’s fear.
“We get along well together,” says Don. “We never run away on each other. She doesn’t scare me.”
Fear and Alzheimer’s go hand in hand. Alzheimer’s is a frightening disease for those who have it, and frightening for those they love.
“I remember going to a workshop really early on - maybe a year after diagnosis - and I just cried the whole time. I don’t think I leaned a thing, because I was so busy crying,” recalls Delores.
“There are so many things that make it [frightening]. For a couple, the fact that with almost anything else, you can share it, but this is so unbearably lonely, because you can’t actually share the process with the person you love. It’s the unfairness of it all that is so frustrating.
“The wiping out of the intelligence is [frightening]. So many people talk about how horrible it is - the wiping out of the intelligence. It’s so bitterly unfair, because Don was such an intelligent person, and now he is using every ounce of that intelligence, every day, to deal with this situation.”
The climb
When Debbie Craig first came across the Ascent for Alzheimer’s website (ascentbc.ca), she was sure it was a sign.
“Many years ago, my brother and I discussed climbing Kilimanjaro and it never happened, but I figured I should accomplish this before I turn 50,” she explains. “I feel like I am running out of time with that goal – I only have a year to go. So I started doing research and almost immediately, the Ascent for Alzheimer’s site came up. It’s been going for (18) years but I had never heard of it. As soon as I saw what it was all about, I immediately felt that I was going to accomplish my ‘before 50’ goal.”
Ascent for Alzheimer’s is a unique fundraising initiative for the Alzheimer Society of B.C.
Every person on the Ascent team has committed to raise a minimum of $10,000 for the society.
Ascent for Alzheimer’s is an annual fundraising challenge and has attracted hundreds of participants in its 18-year history, including former B.C. premier Gordon Campbell, who did the Ascent in 1999.
Debbie has promised Don that she will read his poem (Family of Strangers) at the top of Kilimanjaro.
“He knows. He remembers that. We talk about it a lot. It’s a message that Don wants people to hear and this is one more way I can get that message out.”
Fundraising efforts
Debbie will spend much of the summer fundraising for her ascent, including a special Alzheimer’s Awareness event at the Comox Mall this weekend.
“We are having a bake sale on Friday and Saturday. We have invited a number of different organizations that provide services that people with Alzheimer’s and families of Alzheimer’s patients might be interested in. The mall has given us access to ... pretty much as many (tables) as we want, which was very generous of them.”
Anyone interested in setting up a table for the event can contact Debbie at (250-465-8091). They will also accept baked goods as donations for the bake sale.
Debbie will also be selling raffle tickets for an iPad Air. Tickets for the iPad raffle are $2 apiece and the draw will be made Sunday.
There is also a special fundraising dinner and dance at the Mex Pub on June 20. A $20 ticket will get a burger and drink. There will be silent auction items available, as well as a 50/50 draw and one of Don’s favourite bands, Flying Debris, will provide the entertainment.
The bond
As a caregiver, Debbie must carefully cradle her emotions, never losing grasp of her primary purpose for her relationship with Don and Delores.
She says it’s not always easy.
“I have had to really work on my emotions around Don. Sometimes I feel that I am becoming too personally connected, and I have to step back and remind myself that I can’t help him if I am too emotional. So I get myself grounded, and I regroup and approach the situation with a little more strength.”
She doesn’t deny there are moments of doubt, as to why she does what she does. She has been working with Alzheimer’s patients for more than five years and with a disease such as Alzheimer’s, there never is a happy ending. The best one can hope for is to offer comfort and to help ease the pain – the pain that is present, and the pain that’s to come.
“Sometimes I do wonder what I am doing; why am I allowing myself to set myself up for loss?” says Debbie. “But just like anybody who does anything in life that has the reward of helping and bringing something to people’s lives, it makes it worthwhile. I know that I bring a lot to Don’s life, but I think what I am doing for Delores, that’s the most important part. She needs to have the confidence that someone is looking after Don who cares, and that Don feels safe; that Don is doing OK.”
And what about when the time comes for Delores to relinquish her respite duties? Is that where this relationship ends?
Professionally, yes. But this one has developed into something far more personal.
“Delores will be my friend forever,” says Debbie. “And Don, even when the time comes for him to go to a care home, and my services are no longer required, I will be going to visit him, out of my love and friendship for him. We have bonded. We are kindred spirits. It’s something that was there the very first day. I knew we would always be friends.”