Usually I don’t plan out or edit my blogs. This time what I want to write about requires some explanation so I’ve had to think this through. I don’t share this preface to make anyone feel sorry for me or to martyr myself. But, rather, to demonstrate how incredible actions of incredible cousins gave me the lifeline I didn’t even realize I needed.
So I want to share with you how I spend my days. I wake up in the morning and have playtime with my beloved cat (we have no children; he is our spoiled baby) because otherwise I wont see him again until bedtime. I make my lunch. I have some breakfast. I feed my birds and leave for work. En route I call my mother to make sure she hasnt decided to have a rare early morning taste of freedom (she likes to sleep in.. but every blue moon she’s raring to go at 8am). Dad’s great but he’s not always great at keeping her home or accompanying her if she insists on leaving. So I call. If she is up, I chit chat and tell her about my day. I tell her which friend of hers is on their way (ie which caregiver) and tell her when I will be there after work. That’s 99.9% effective at keeping her there until caregiver arrives.
Mid morning i check in with caregiver to make sure things are going okay. I provide options if things are difficult. I offer to come home if need be. I try to take my breaks and my lunch as late as possible in the day just in case I need to run there. I check in again in the afternoon. At 430 when I get off work, I book er for MacLellan Street and my evening shift begins. Sometimes the caregiver du jour will have supper ready for them. Sometimes I make it. Sometimes we need to do a grocery run. Other times we come up with other ways to occupy and engage to keep them both happy and content. Sometimes I can get away with a walk up at Bethany. More often than not, however, I am driving the 30 minutes to the farm on which she was raised. This becomes confusing for her when one of two things happens. 1. Her sister who now owns the property is home. Mom is baffled as to why her Mom and Dad aren’t there and why things look and feel so different. 2. Her sister is not home. This is even worse at certain times of the year….it’s haymaking season, for example, where is my father??? She knows it makes no sense for them to be away. But can’t quite wrap her head around anything else. This throws her off kilter. I try to have a backstory ready like Louise took them to an appointment or AA’s Sandy took them to some kind of fishing expo. Always juggling in my brain in case we run into one of them on our travels. She loves the graveyard so sometimes I take her there. For a long while I was worried she would see her parents tombstones and become upset. But she doesn’t. She believes the stones are for someday down the road when they pass…and the death dates ignored.
Sometimes we will pop in to visit someone. Other times we will go for a walk on Big Island Beach. But most times we are drawn to the Wharf where Grampa fished for 60 plus years and where she loved being as a child.
Eventually we make our way back to town. At home i try to encourage calming things that may lead her to bed. When it’s bright out til 10 o clock in June and July, she’s not winding down until then. Thankfully as the days draw shorter, she winds down a little earlier. We do what’s called a “snugglefest” where all 3 of us climb into their queen sized bed and watch something on TV. Sometimes our Blue Jays, sometimes her favourite, MASH. I snuggle them both, wrapping them both in my arms because they both need that physical comfort and security.
And once they’re settled I sneak off, making sure doors are locked and everything is turned off.
I drive across town to our place where sometimes I haven’t even seen my husband yet that day. If it’s June or July, he’s already in bed when I get home. But this time of year I’d get an hour with him if there wasn’t a mountain of dishes or laundry. Or if we needed groceries id have an hour to run grab some before getting myself ready for bed and starting all over again.
But speaking of groceries, if they need groceries, I find their bags and bins and root around to make a list. Then off we go. I have to allot extra time because Mom will have to stop to talk to every child under 12 she finds. More than once as by the time we swing down the next aisle and meet them again, it’s a whole new friend for her to meet. Thankfully parents are great for the most part. If I dont let her push the cart she gets mad because she wants to help. If I do let her push the cart, gets mad when I take over to guide it around corners after she topples something over or smashes into something. At the checkout she wants to help put things on the belt. Then she wants to take them off the belt.. usually before the cashier rings them through. She’s angry again when I have to tell her to leave things on the belt for the cashier. On a good day i can distract with someone or something I see. Other times she storms off and I have to abandon the cart halfway through to go with her. And start all over again another day.
If she needs a bath I have to make sure absolutely nothing else is scheduled to happen that day. One focus at a time. I made the mistake last week of dying her hair after an afternoon adventure. She’d done so well I thought I could cross one more thing off my to do list. Big mistake. By the time the dye needed to come out, she was having none of it. Had a meltdown that left both me and the bathroom in quite a state. I knew better. Eventually readjuated, got the dye out and had a close snugglefest so she could feel safe and loved.
On weekends when I wake up, I get myself ready for the day and head to Mom and Dad’s. On a good day I get to chill out with Dad until she is wide awake. I used to do all the cleaning at this point but had a break down and started paying people to do those tasks now. A formidable feat in and of itself because of financial difficulties brought on by the double whammy of dementia. We scrimp and save and make do. And get by. But it isnt easy. There is help from the provincial government but it doesnt even cover enough hours for me to work every month. Soooo it is what it is.
Dad always makes breakfast but on weekends I do lunch and supper. Sometimes Joan does too.
When Mom was in the hospital this spring, twice, I was with her round the clock. No sleep. No shower. It was particularly terrifying for her and particularly insane for me.
Dad tries to help. But he has dementia too…a very different version, thankfully. He gets hyper focused on tasks and nothing can stop him from getting that done. I’m very lucky that one of those hyper focused tasks is always my lawn!
But many times the hyper focus works against me…not on purpose but it does none the less.
I try to plan one bigger activity every weekend. One weekend we did Sherbrooke Village. Another weekend our friends Joanne and Kevin took us out on a boat ride. Another weekend we did a car show. All things that wind up being fun…I always have fun with Mom and Dad. But not fun that I get to choose to do.
No date nights with my husband. No dinners out. No weekends away. No shopping trips to the city. No gab fests with friends or family on the phone. When do I clean my own house? When do I see my friends? When do I pay bills? Or associated paperwork? How do I garden?
Everyone always says they’ll come and hang out with me while I’m hanging out with them. But no one does. On the rare occasion they do, they bail pretty quickly and dont look back. I dont blame them. This isnt for the feint of heart. It is what it is; one day at a time; one foot in front of the other.
Again i share for no other reason than to offer the juxtaposition for what happened last week…so you fully understand my heart and the depths of my gratitude.
So you’ve got a glimpse into my schedule, so now, imagine on top of all that, there’s an emergency at my husband’s work and he got run over by a roller on a road construction job. Literally. That happened the last week of August and my whole world came to a screeching halt.
He was working in the Annapolis Valley, hours away from home, with our only car. After he was airlifted from the site by the Life Flight, to the big hospital in our capital city, I had to figure out how to get to him. Thankfully Ashley was already with my parents and my extraordinary first cousin Shannon, who is like my sister, immediately dropped everything to drive me to the city – not knowing if he would be alive when we got there. It was quite simply the most frightening night of my life.
I may write about that another time but suffice to say, he survived! The ER doc told me “there is no logical explanation as to why your husband is alive tonight; it simply wasn’t his time”. And in the end he walked away with a broken clavicle and soft tissue damage to his elbow and shoulder – over and above the burns and bruises. But both arms were affected, limiting his ability to do very much. He was in pain and needed me.
My caregivers really stepped up with Mom and Dad, enabling me to spend the time I needed with J…I’ll be catching up financially for months but having a full long weekend to focus on Joan and his healing process was so so so amazing!
It’s at this point that three other cousins come into play…and then I will finally get into my 5 days of joy!
My Gramma Thelma is one of 16 kids. She was one of the older ones so some of her nieces and nephews are closer in age to her grandkids than her kids!
Her brother Charlie had two daughters, Kathy and Charlotte and they live together in Halifax. Over the last couple of decades I’ve grown closer to them both. So much so Kathy is listed in my phone as “Kathy My Sister”. She truly is the ying to my yang and has become one of the closest people to me. Charlotte too. As Kathy is Charlotte’s caregiver, she understands my situation more than most and keeps me sane!!! Charlotte worries about me and my Mom…and tries to come up with ways to ease my stress…such a sweet and kind human who I adore.
They are forever trying to find ways to help me..
My Gramma Thelma’s youngest sister Joan had 7 kids.. The youngest,Kim, came to my hometown from California for university when I was in elementary school. As she was only 17, my parents were her legal guardians and we saw a lot of her that year! I remember going to visit her in her dorm directly across the street from my elementary school and feeling like I was the coolest kid in grade 5!!
In the decades that followed I’d see Kim at family functions but we weren’t as close as other cousins. One summer she came home to Nova Scotia to visit and stayed in the Ohio with our other cousin Joan. I started hanging out with them that week and between the belly laughs and the family stories we all created a bond.
Since then we talk over Facebook messenger, checking in every so often. But I had no idea just how much she’d been paying attention. Or understanding.
When Mom landed in the hospital the first time last spring, Kim mentioned wanting to come help me. Well…I love family visits but it is always an awful pile of work! So I didnt pay too much attention. I explained my time is not my own so I’m not sure that’s a great idea.
Then Mom landed in the hospital for the second time and Kim said again, i wish I was there to be able to help. Very few people actually help and visitors mean work so I again pooh poohed it.
As the summer slipped by, Kim would comment to me that she wished she was able to help with my parents anniversary party. And then when Joan got hurt, she booked her flight. She told me, someone needs to take care of you while you take care of everyone else.
Not gonna lie, if made me nervous bc visitors are always work…not necessarily in a bad way but work none the less. And I had zero time.
She, however, had a few tricks up her sleeve. She coordinated with our cousin Kathy and badda boom badda bing, Kim’s 9 days were filled. All they asked me to do was to book 3 days off. I only get a few weeks a year and had had to use so many days for parental issues that I was hesitant…but did as I was asked.
She arrived Friday afternoon to my mother’s where I’d had to take the afternoon off work as I had no coverage and we all had a lovely visit. As my Friday evening respite arrived, Kim took me out to dinner (take out for Joan who was still healing at home) and outlined our plans for the week. She had Kathy make arrangements with caregivers to work extra shifts to give me time off..and arranged payment for that extra time!!! And they’d planned adventures galore since they knew my brain and my very soul desperately needed some laughs and rest and joy and fun…and no responsibility. When I interjected that she, coming all the way from Georgia, needed to have her OWN vacation; not just give me one, she assured me that she had worked that in.
Saturday we all had breakfast at Mom and Dad’s then we went on our regular Saturday activities while Kim met up with some cousins and had dinner with other cousins, meeting up at my place simply to say goodnight.
Sunday Mom, Dad, Kim and I went to Sherbrooke Village for its last day and had a ball meandering in and around all the heritage buildings and displays! We all had so much fun!
Monday and Tuesday I went to work as normal and Kim fit in visits with others who reached out to her…we have a huge family. While still running errands for me, doing a pharmacy run for Joan and surprising me with lunch delivery! Having someone around to lighten the load just a little, without having to make a list and spell it out, was so unexpected and so wonderful all at the same time.
With Mom, Dad and Joan’s care well in hand, Kim and I set out on our 4 day adventure! We caught the 8:30 ferry to Prince Edward Island…the boat immediately reminds me of childhood vacation and I can feel my shoulders trying to relax just by boarding.
We picked up Jody (my best friend since I was 4 years old) at her office then spent some tourist time exploring down town Charlottetown. Then off to our cousin Doug’s restaurant, The Cork & Cast for the very best fish tacos I’ve ever eaten! He and his beautiful and talented wife have created a unique and incredible restaurant that everyone should absolutely check out!! Jody’s kids are my Goddaughters and last year I was highest bidder on a gift certificate to the Cork and Cast. I gave it to Jody and she brought it with her to get them to validate for this year’s fundraiser! They happily did so and then Jody bought a gorgeous Cork and Cast hoodie to add for the draw…a fun little byproduct of mini family reunions!!!
After bidding adieu, off we went to Cavendish…with a tour of Anne of Green Gables (a must do) under our belts, we decided to take advantage of the glorious day and spent an hour or more decompressing at Cavendish beach!! Was so warm that we wished we had our suits to be able to join the other swimmers in the water!! I went in thigh deep…next time it’ll be in, suit be damned lol
We made our way to the Confederation Bridge, ensuring Kim visited THREE Canadian provinces on this trip and arrived at Charlotte and Kathy’s in Halifax in time for a late supper. Thursday was spent in our PJs telling story after story and holding our sides from laughing so hard!!
The rest of our time together was spent on the Magical Wine Bus Tour in the Valley, on the waterfront and on the most peaceful and relaxing boat tour of Halifax Harbour aboard the Tall Ship Silva! They celebrated my 50th birthday 2 months late…an occasion that wasn’t able to be marked back in June as i was in the hospital with Mom when she was having emergency gall bladder removal surgery. We may have found an alternative personality in Amanda and may have enjoyed flying in the wind with our new friend Larry…but those are inside stories that may require some bonding moments of our own before we share!!
These cousins took such great care of me physically, emotionally, spiritually and financially…that i am tearing up just thinking about it. When you’re so focused and so used to bearing a load, you don’t even realize what your brain and soul and heart need. I am so absolutely blessed to have cousins who didn’t just see a need but made it their business to help even for a week. And one of them flew all the way here from Atlanta, Georgia!!
My Uncle Charlie used to say “You got nothing if you don’t have family”!! And that statement means a whole lot more to me these days!
I’m back home and back to real life…and back to my peeps who missed me terribly. My workload is still heavy but my heart feels lighter just for having had a break!
I cannot possibly thank Charlotte and Kathy enough!! And Kim? Thank you also for not listening to me…and stepping up to help when so few do and in ways I didn’t even know I needed. I love you all.
Dandelion Wishes 