I have this recurring dream. It’s night time. I’m treading water. I know I’m very far away from shore. I can’t see land anywhere. I am alone. I’m surprisingly not scared. I know how to tread water, I remind myself, as I begin to move my arms and legs in a rhythm that keeps my head just barely above water. I can breathe. I can think. I start to plan my survival when the wind picks up; ever so slightly. But that faint hint of wind causes a ripple on the water and suddenly I’m struggling to keep my head above the surface. Water enters my eyes and my mouth. The wind picks up. All thoughts of survival are out the window. The waves get higher and higher. Just as I finally come to the realization that this is it, I’m drowning, I wake up, flailing in bed.
Anyone who lives with any kind of chronic stress will recognize that very common dream. I hate being common. A very simple one to interpret – I’m barely holding it together; I have a lot on my plate; one little ripple can sink me. No kidding! I know that life; I live it; God I wish I didn’t have to dream it too.
But it occurred to me recently that it’s a good metaphor for anyone dealing with chronic stress to use to explain things to those that judge them; or exclude them or talk about them. It’s sad that anyone in that scenario would ever have to. But I guess that’s the not so shiny side of life.
I post on social media about my two parents with dementia a lot. I have been accused of being self-serving; looking for praise and admiration; shaming those around me who might not make the same choices; of making their illnesses out to be less than they are; of making their illnesses out to be more than they are; of using their illness to avoid family events or invitations. You see, I’m damned if I do and damned if I don’t. And no matter which way you look at it, I am alone.
Four years ago I received a fb message from an old Kin friend of my Dad’s. Susan explained that in the 90s my Dad was part of the Kin National Council (if you don’t know what Kinsmen/Kinettes are, it is a Canadian service organization that does amazing things, look em up!), representing his district and that she was hosting a reunion for those National Council Folks. It was the first one my Dad was unable to travel to due to my Mom’s dementia. She wondered if I might be able to zoom them in! Without hesitation I said yes! What a wonderful chat we had with everyone when that day arrived…such incredible people who had dedicated their lives to service in their communities! Mom and Dad were thrilled! I was moved. Here these people who have known and loved my parents for decades, from afar, thought enough of them to want to ensure their inclusion!! Before the zoom call was ended, I found myself inviting them to Nova Scotia for their next reunion!
They all came two years later and we had a fantastic few days sharing our little neck of the woods – Celtic Music and Ghost Walks and Boat rides! We had a time, as they say!! When it was time to say goodbye, it felt like I was saying goodbye to MY friends, instead of Dad’s. They so warmly welcomed me and included me as one of their own. They reminded me that the next reunion was going to be outside of Toronto in two years and I promised if i could make it happen, I would take Dad.
But a lot can happen in two years. Mom’s dementia sunk heavier around her. Dad’s too. Sorting out of their affairs is taking far longer than anticipated, making it harder to keep our two households afloat, especially after my husband not having a job to return to following his accident. It never rains but it pours.
One day in conversation with my brother we looked up pricing just for fun…the resort home base of the Toronto reunion; a rental, etc. And with points for flights, it actually might be doable! I wiggled and shifted and Brian donated hotel points and booked. Not because I wanted to use my only vacation time visiting my Dad’s friends instead of my own but because dementia sucks. And Dad’s world has gotten so damn small. And yet here are people all across Canada who love him and want to celebrate old friendships with him! And two years has already robbed him of so much; what is another 2 years going to bring? It’s now or never. We might be eating peanut butter sandwiches for months lol but we went!!
Traveling with a parent that has dementia is difficult, no question. But it’s far worse when you have to leave the other parent with dementia behind. Mom hasn’t spent a night away from Dad since he went to a ballgame in Toronto years ago with my brother and my husband. And THAT weekend, my sister and law and I moved in to hang out with her…so she wasn’t alone!! Now it was Dad AND Me the two people she sees every single solitary day that would be gone.
I spoke to my incredible team of caregivers and everyone offered to step up to do what they could. An old family friend had recently marketed herself as an overnight caregiver, so I booked her; had the others stretch out their shifts and promised myself that I wouldn’t worry myself out of focusing on Dad’s trip.
Arriving at our gate at the airport in Halifax, Dad asked me “So, what’s next?”. It was 5:30am. I said, well….what’s next is we go to Toronto! he asked me “How are we going to get there?”. I said I think we will take that airplane out there and pointed to it. “Oh”, he said, “We are flying! Okay!”.
You could have knocked me over with a feather. Because we have to focus so much on Mom, we missed so much with Dad. I knew in that instant that my dream of sneaking off for some R&R while he did Kinsmen things was done.
We arrived in Toronto to some chaos with the car rental, after my original booking was on a credit card that had been compromised. Despite re-booking, the agent on the phone had still attached it to the old booking and I was required to produce the card, which had been shredded. It was solved with a couple of phone calls but it was enough to rattle my passenger…and made it harder for me to hide my fear of downtown Toronto driving!! But we did fine and made it to our resort in The Blue Mountains right on schedule!
The Mosaic at Blue Mountain is a beautiful little resort in a stunning resort village. Truly, it’s like it’s out of a Hallmark movie! The parking is underground so the only traffic to all the shops is pedestrian. There is a ski hill that, this time of year, offers gondola rides and a fantastic walk that inspires reflection and teaches about the local Indigenous community. There are restaurants galore. And right at the Mosaic there is a year-round outdoor pool and hot tub!
We were so happy to meet up with the crowd for supper Tuesday evening, an Italian feast in the hospitality suite. My goodness Kathy, the hostess with the mostess, put on quite the 3 day party!! We crashed early but then spent the next three days feasting, touring a vineyard, seeing the Fish Ladder in Thornbury, a peek at the town of Collingwood, the night time trip to the top of the ski hill for the Agora Path of Light walk, splashes in the pool and hot tub, telling stories and laughing and simply being with like minded people! It was good for my soul! Kathy, the host, who is running for Mayor of Collingwood, singled me out in her farewell at the hospitality suite and gifted me a mug and some candy, thanking me for taking Dad. I immediately burst into tears as I was beyond moved…I was simply the chauffeur. But they all showed me I was family! There was Dennis who is only crusty on the outside who made sure to engage Dad every chance he got, recognizing that it’s harder for Dad to strike up or follow a conversation. (and making sure to chat with me to find out how he was really doing). His beautiful wife Diane who became everyone’s personal shopper! George who chauffeured Dad and I so my rental rested comfortably in the parkade until it was time to leave! His Dianne who kept a watchful eye on Dad and on me and was so quick to check in to see that everything was okay. Dave and Kathryn and Dave and Joan had been on my fb since they’d been in Nova Scotia and I followed their travels so I felt such a strong connection with all of them…and they were all so amazing! So interested and invested in both Mom and Dad’s lives and in mine too…asking about Joan and how he’s recovered and how he’s enjoying his new job. People I would hang out with myself even without the Dad connection. Gary, who I met for the first time as he wasn’t able to make it to Nova Scotia with his late wife, Marnie. He took Dad under his wing and with a nod to me, would allow me to breathe for a minute knowing he was in safe hands. Pat and Lyle are from Saskatchewan and I have heard the most about them over the years because Dad worked for two years in Regina and would go visit them whenever he could. Their friendship shines brightly and they never failed to encourage or chat to or reminisce with Dad! Dave and Sharon felt like my little Mama and Papa on this trip…while I was there to take care of Dad, I felt like they took care of me! Alex is the lone wolf, enigma of the group who regaled me with endless stories of Kin and beyond; who is fascinating with his love of learning and sharing. I continue to be schooled while reading his book about his hometown! And finally Klaus and Susan. The whole reason I am even included in this bunch of merry men and women. Ever so grateful for their love and respect for my Dad…and now for me. Susan reminds me so much of my friend Andrea that I feel like we are already BFFs for life.
I was the one sobbing as we said goodbye. Sad to leave people who had been so supportive both from afar and then in person. Sad to leave people who clearly mean so much to my parents; the original parents from before the dementia. Sad to watch my Dad say goodbye, for what likely is the last time (but grateful he doesn’t know that). Honestly, it’s been so long since I’ve had a real community, it was bittersweet to feel it again when it was only for the one week.
Back at home, Mom’s regular ladies were treating her like a queen. Sadly there were difficulties with someone new. Mom was not protected or kept safe. Thanks be to God, my little angels were able to step in and love on her and keep her safe and sound for the remainder of her time without us!! They were all so wonderful but lord, I dont know what I’d do without Joanne and Ashley!!
Those issues Mom was facing were so stressful to me being so far away. The first time I’d been away away in 4.5 years. I’m not sure I’ll ever be able to do it again. That ripple effect. How one person’s actions can wreck everything.
We are back home and getting back to normal. I did post a couple of pictures while I was away but kept getting the messages praising me for being good to my parents or telling me to keep it up. So I didn’t share any others. I might after I get theses weirdo feelings out of my system through writing this blog…but I dunno. If I don’t post, people ask me a million questions. If I do post and people say nice things, it feels performative. I feel torn; always.
Feeling torn; thinking of the ripple effect; feeling that amazing circle of community from the Kin family…all those things are zooming around in my head, making me dizzy. I don’t want to be praised for what I am doing because I do not want to be doing it at all. I wish they didn’t have dementia. I wish Nova Scotia had really good care where I could go back to being a daughter. I wish their friends and family hadn’t decided they were no longer valuable to them once they were diagnosed. I wish people would stop praising me and start realizing that if I’m with THEM so much, that means I am not with my husband or my friends or anyone else. I looked in the wrong drawer today for a spoon. IN MY OWN HOUSE. Because I am never here, I don’t even know where things are (I’m on a rare day at home because my office is closed for Truth and Reconciliation Day). I wish someone would come visit one evening a month so I could have an hour with my husband. I wish someone would come visit one morning or afternoon on a weekend so I could run and get groceries. I wish someone who complains that I don’t get to go do things anymore would offer to come with us on excursions…I don’t do them for my own self; I do them because my parents wait at home all day waiting for me to get home to START their day. I wish someone who tells me they appreciate the updates of my parents would drop off supper once a year even! I wish my circle, as incredible as it is, wasn’t made up of almost exclusively people that I pay to take care of them.
I appreciate the smallest amount of kindness and compassion. I don’t need someone to do big things. But I am treading water on a good day; drowning on the worst. I try to do nice things for others whenever I can. That old adage says don’t expect yourself from other people. And I don’t. I was raised to be hospitable and of service; not everyone was. But perhaps the saddest part of this whole double dementia journey has been that very few people do very few things to help on very infrequent occasions.
See how service and hospitality and dementia and kindness are all wrapped together in my brain after that Kin reunion!? i had to bonk them around a bit to try to make sense of myself. I’m still not sure how well I did…but I feel calmer so there’s that! If YOU know someone who has found themselves to be a caregiver (no one chooses it; if there were alternatives, they’d be in place), PLEASE, I AM BEGGING YOU, pay attention! Notice if they disappear from their own life. Notice if they are drowning. You don’t need to be the lifeguard. But tossing a lifeline or making a call could make a real difference. Don’t wait for them to ask. They’ve likely already asked a million ways, but you’ve missed it. Everyone has their own problems, I’m well aware, but until you’ve walked five minutes in a caregiver’s shoes, you have no idea, whatsoever. If you have FIVE MINUTES in your WEEK, that’s more than most caregivers so please use that five minutes to show you care! It could be the difference to treading water easily and drowning!
I’ll end with a twist on the traditional Kin grace. Happy to meet, sorry to part, happy to meet again! May the Lord make us true Kin in our thoughts and deeds and make us truly grateful (for the food we receive)! Thank you Kin National Council members, thank you for walking your walk and showing such sheer kindness and compassion and demonstrating what it means to be a true friend in the face of illness. You will hold a special place in my heart forever.
