That's me and my dad on one of the last walks we'd ever take together.
Dad, Chapter 1 -- FTD
The past two Autumns, my family has participated in the Walk for ALS research. We have raised thousands of dollars for the foundation, and we all walk under team leader, Mom, for "Mr. P's People." That's what a lot of my father's students had called him. Each time, all on board sport purple attire in honour of Dad's favourite colour, and hit the trail determined to make a difference. It is after all, a cause near and dear to our hearts, and in the first year, 2011, I managed to cry only the once...as my sisters and I watched a fellow about Dad's age rise up from his wheelchair to take the final few steps across the finish line. He had ALS. He was able to do the walk that year. Dad would have loved to have been there too, smiling and giving a big "thumbs up" to everyone he met along the way.
With my Dad, the ALS came second. First it was the FTD.
REWIND -- Wednesday, February 10, 2010
I received an email from my mother that day that would change my world:
"Doug and I had an appointment with the family doctor and we have found out that Dad has FRONTOTEMPERAL DEMENTIA. It is not reversible and we cannot do anything to stop it from progressing. If you want to know more about it check out WebMD for more information, but the doctor tells me that we will read stuff there that we do not want to hear. I have not yet looked it up so I cannot tell you what there is. His brain showed shrinking of the frontal and temporal lobes. Dr. tells us to go off to Florida, because there will not be any episodes that we have to worry about. When we get back we are to see him after seeing the neurologist on April 1st. I was going to call you but I could not get through a conversation with your sister without crying. I will also send this email to your other sister and we can talk later when I get my head around this latest info.
I didn't get it. I had never even heard of "FTD." Immediately, I hopped online and began researching...I needed to know. Of course, within minutes I discovered the truth. Facts. Dad was going to die. Not right away, but a lot sooner than anyone ever plans. He was a retired teacher; such an intelligent, wise, witty, clever guy. He was an athlete, playing slo-pitch, volleyball, hockey and golf his entire adult life. How could this have happened to him?
My family got together the following weekend to discuss. That just so happened to be "Family Day" weekend. The five of us gathered to eat, drink, snow sled at the local hill, chat, laugh and be as we always were. We played with my niece and nephews, lazed around the house, and did as we had always done while all together. One evening however, we found ourselves all huddled in a group in the middle of the kitchen, crying. We knew things were changing from that point on. I will remember that moment for the rest of my life.
Looking back in time, we tried to recall any hints pointing to Dad's intruding illness. It was June of 2009 that we began to suspect a hearing problem; Dad would often respond to us by asking, "what?" rather than answering the question. This was strange because with my polite and eloquent pops, it was never "what," but always "pardon." So he clearly wasn't hearing us, right? No -- now we know it was not because he didn't hear the questions...it was simply that he didn't know how to answer them. His brain had already begun to jumble up words.
Shortly after that, he began misplacing them, not knowing how to verbally express what he knew he wanted to say. Soon it got to the point that he could only answer yes or no questions...and then by December 2010, he lost his words entirely. At this point it was a lot of "Pearson family sign language" and "thumbs up or thumbs down" that got us by.
Within months, dad deteriorated to the point that every interaction was like that with a three-year-old child high on drugs. He was unable to eat, dress, or function on his own. Simple processes were impossible, communication an art that only my dear, sweet, supportive, care-giving mother could perfect. But all the while, dad would smile the hugest smile and giggle the most childish giggle, as he enjoyed all the ice cream, milkshakes and moments he had left.
It makes me so very, very sad to think that my father knew what was happening to him through all of this. This wasn't Alzheimer's. My dad never really forgot anything. He knew who we all were, who he was, and what was happening to his mind and body. It must have just killed him to not be able to talk about it.
But we all stood by, saddened by what was going on, but firm in our resolve to support and stay positive as long as possible. This was FTD. We could handle this. In truth though, I was scared. Terrified.
That was the beginning of our family's 15 month journey with FTD & ALS. An illness that no one ever talks about, most people have never heard of, and even as I lived it, I denied was even happening.
And to this day, I have an utter disdain for any and all three-letter acronyms.
Please support research into the other illness that took my father's life, ALS. You can register or donate to the ALS Yoga Challenge in Toronto that I am committee member for, and you can bet that I will be doing six hours of yoga that day for my Daddy!
Talking with other people who face the same daily challenges can help caregivers manage stress. Specific types of support groups can vary on a community-by-community basis; check out this Caregiver.com guide to find the right program for you.
Caregivers have their hands full and may not have the time to meet with an in-person support group. In that case, an online support group can be a great alternative.
Support groups not your thing? You can see what other people are saying about caregiving by just checking out a simple message board, such as this one sponsored by AARP..
You may need to attend an event or simply seek a few hours for some much-needed rest. Eldercare.net offers a Search For Respite Tool or Eldercare Locator where you can find professional help. Also check out this guide from caring.com for more respite-care ideas.
Does your loved one need transportation to go buy food or go shopping? There are numerous van and shuttle services specifically for seniors. Contact your local Area Agency On Aging for one near you.
Don't have time to shop and cook? Consider a service that will deliver gourmet meals to your home, no matter where you live. For low-income seniors in need, AssistGuide Information Services offers a directory of food services available.
During the 2009 economic downturn, 1 in 5 family caregivers said their finances were so strained that they were forced to move into the same home with their aging loved ones to reduce expenses, according to a survey by caregiving.org. Some 47 percent of working caregivers indicate that an increase in caregiving expenses caused them to use up all or most of their savings. The Many Strong Support Network has a fundraising tool which allows other people to anonymously donate funds to people who are under financial strain.
If ever you have a question about resources, or need support at a moment's notice, AARP's caregiving support line is available at 1-877-333-5885, Monday through Friday, 9 a.m. to 5 p.m. Senior care advisors for Care.com, also provide free counseling for caregivers, and help them map out the best course of care for their loved ones.
Organized caregiver co-ops can provide an affordable way to coordinate care for your loved ones. Check with local community centers or this Adult Day Care Directory to see if someone in your area has already started one.
Care.com's Senior Care Directory can set you up with a housekeeper, errand runner, pet sitter, or whatever you need to make the caregiving experience a little more manageable.
According to author of "The Medical Day Planner", Tory Zellick, hospital social workers are a great resource for all caregivers. "[Hospital social workers] are always armed with information for your community," said Zellick.
Websites like Lotsahelpinghands have caregiving communities that connect volunteers with caregivers in need of support or help.
Family gatherings offer a great opportunity to discuss the future of loved one you care for, says Dr. Bruce Chernof, president and CEO of The SCAN Foundation. The group offers a guide -- "10 Conversations To Plan For Aging With Dignity And Independence" -- to lay the groundwork for these critical discussions.
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