Caregiving, Disability, StaceyFH

May 13, 2021

Extend some grace to the caregivers

I'm WillowjakMama!

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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Single parenting is truly not given the credit it deserves. Single parenting for people who don’t have circles of support even more so. Single parenting children with disabilities? That’s something I don’t think anyone can appreciate unless they live it themselves. This isn’t a post to garner sympathy or kudos for myself, I’ll put that out there right now. But I do hope it gives you pause, if you know someone who is in this role, so that you honestly let yourself just imagine what it’s like to put yourself in their shoes. Even for a day. 

Just think of all of the things that you do in your day, when you don’t want to have someone tagging along. Don’t want to, or even can’t have someone hanging on to your pantleg. And I don’t just mean when you wake up in the morning and your day starts, but 24/7 when the world sleeps as well. Because there isn’t a minute of your day that is yours when you’re on your own with kids to take care of on your own.  

It’s not about the fact that it’s always noisy and you don’t get any peace and quiet. It’s not the fact that you want five minutes to sit on the loo but you can’t get any privacy. It’s the fact that there are single parents and caregivers out there who don’t have a person to pass the baton to when they need to be two places at once, or they need a second brain to help them think through a tough call and make a decision on something, or they are in a crisis and need two physical bodies to keep everyone safe and handle the crisis. That’s what makes it the hardest of all. And when the going gets tough and there is no one to step in and have your back if you fumble, or let you rest when you’re sick, all of the months and years of doing it all on your own mounts up and starts to bury you. And for parents of children with complex needs and disabilities who know their children will never be independent, it’s having to accept that you are in the last mile of a marathon – you’re weary, you’re exhausted and your body is failing, but you realize you have to maintain that state of being and that exhaustion, for years and years and years ahead because there is no end in sight. 

I know I have a life that is an extreme example, but I wouldn’t be honest if I don’t acknowledge my privilege. Not only do I have people I can call on in desperation, but I am also an educated and resourceful woman who did not go through life in poverty. No disrespect to parents who can’t say the same, it’s the opposite – I see you! I cannot fathom how those parents are surviving this single parent life. The mothers who came to Canada from other countries, who no longer have their partners but are on their own with kids, who hardly know the language, who don’t understand how to access resources, who don’t have anyone going out of their way to help them to succeed.. my heart breaks for them. Add kids with disabilities to the mix and I can only pray that these families can beat the odds to live a life that includes some peace, some joy, some respite. 

It’s not just parents. There are caregivers out there, taking care of loved ones who were once the ones who raised THEM. They have the added heartache and suffering of watching their loved ones in a diminished capacity from the lives they once had. They may be the victims of abuse from loved ones whose mental health has deteriorated or who are afraid and confused. They may be exhausted and traumatised themselves and doing it all in secrecy and isolation for fear that their loved ones’ privacy or reputation will be altered, so they don’t let anyone in to help. My heart aches for them and even more so, if they are doing it all on their own. 

A caregiver’s journey is not usually a short one. It’s a marathon. Our communities often rally when someone needs help in times of crisis – someone is dealt a cancer diagnosis, a fire has destroyed a family’s home, a sudden death leaves a devastated family grieving – we rally with offers of clothing, shelter, donations, meal drives, a shoulder to cry on and we pull them into our family to wrap them in care and support. They say a natural disaster usually brings out the best in communities because everyone takes care of each other. It’s wonderful! But somehow, we forget that the caregivers out there have hundreds and thousands of days of disasters to live through. Because they seem to be ‘managing’ they are often forgotten and they become old news. The proud and private ones probably haven’t even let you know they are living in an upside-down world, where their own basic needs aren’t being met.  

I have had SO many offers of help in the last eighteen years and I can truthfully tell you, that I have probably only accepted it on the 20thoffer. Why? Pride maybe.. embarrassment, shame. It’s too much work to let someone in. If I have to teach someone how to help, is it even worth it? Fatigue. Wanting to maintain some privacy. Wanting to maintain control of my own domain. 

Only a handful have managed to break through the barrier and if I have to think about why they were successful when others weren’t, I think it’s because they were consistently persistent and they made it so easy. They came prepared to quietly fill a space that needed filled without trying to change anything, without having a commentary or critique, without requiring the fanfare and the Instagram cred of the experience. They found their moments to help in the everyday – a surprise meal, cutting the lawn when I least expected it, showing up with tools and asking if I needed anything to be fixed, offering to come over to help clean, inviting a boy for a drive to pick up ice cream or to go for a walk. Bit by bit, they found little ways to ease the burden all while observing how they could help more in other ways. 

In the seven years since I have been a single parent with my boys, I lost a lot of things beyond a marriage and a family of five. I lost the freedom to pop out to pick something up from the store. I lost the freedom to have a quiet phone or Zoom call without interruption or distraction. I lost the ability to shovel the driveway after a snowfall because I couldn’t leave the boys unattended in the house. I lost the peace of mind to take a shower without worrying that someone was running away. I lost the ability to plan for a night out with friends or an overnight away from them. I lost the permission to ignore my phone in case the school called with the demand that I rush to pick someone up to bring them home. I lost the freedom to have a drink with the risk of getting tipsy for fear I need to be sharp or have to drive. Grocery shopping, parade watching, hikes in the forest, a walk around the block, a gym membership, church on Sunday, working outside of the home! All of these things can only be accomplished with perfect planning, money to pay for the help and the energy to figure it all out. Vacations – impossible. Dating – ha! Sleep? Now that would be asking too much.

Last week life changed in my house. Liza has joined our brood to work with us until the end of the summer. It’s as if the heavens have opened up and I can hear the choir singing – no, actual angels singing – it’s that good. The night before her first day, I was texting with my sister and telling her that Liza was coming and I felt a ball form in my throat and when I opened my mouth, a sob literally escaped. I know this sounds dramatic, but it’s the truth. Having Liza here with us has changed our world. Suddenly, I have options. Now we can plan activities, projects, goals and outings (if COVID allows) because I have my partner. Life is safer. Days are more fun. We are all more relaxed. We can breeeaaathe.

It makes me think about how we can all help ease the burden a little for the caregivers that we know in the world. How can we extend them some grace? Do we need to be of service? Or can our simple state of compassion or understanding make a difference? – I think it can. Here are a few examples of what I mean:

  • the boys have had some INCREDIBLE, out-of-this-world amazing teachers. But they’ve had a couple of terrible ones. One of the boys had one who made everything harder than it needed to be. It’s a miracle some days that my boys made it to school, particularly during the period where Will was going through a transitionary phase and aggression was how he expressed his frustration and confusion for all of the changes in his life. The teacher wanted me to provide an update every morning that detailed how Will’s evening went the night before and how he appeared to be feeling that morning. Did he sleep well? What did he eat? What activities did he participate in the night before? She wanted me to detail it all in a communication book that would go into school with him each day. The fact is, Will hated school at the time so every step until the final one on to his bus was a battle. I was often starting my day on an average of 3-4 hours of sleep after a period of Will’s night-owl restlessness. There was NO time to write anything in his communication book, let alone document it all before I got them on their bus. Not to mention, I also had his twin to get ready in the mornings as well, who required my help with every step of his getting ready. Sure enough, at our parent-teacher interview, I was told that they had “noticed that I wasn’t providing the requested communication every morning”. I explained how difficult it was and asked if I could try something different. Could I send an email after the boys left in their bus, that the teacher could read instead? My answer – NOPE. No real explanation for why was provided.
  • We had a doctor who was always running behind in his appointments. My boys could not safely, nor quietly sit in the waiting room beyond five minutes (max). I asked the doctor and his receptionist, if they would be willing to let me call before I came into the building, to find out the approximate wait time and wait in the car if they were running behind until they could call us to tell us we could come in. The answer – Nope. Again, no real reason. I suspect it inconvenienced the receptionist.

Showing me some grace on those two tiny issues could have changed my world. The stress I had over both of those examples was off the charts and it was all unnecessary.

How can we be better to the caregivers in our communities?

  • Extending grace by loosening up in our rules and protocols and realizing accommodations can be made
  • offering to be of service. Don’t be vague. Simply asking “what can I do to help?” will probably just get a “thanks for asking, but I am Ok” response. Try to come up with specific tasks
  • including them in regular check-ins that show you haven’t forgotten them
  • reach out.. even if it feels uncomfortable
  • listen without judgment or trying to fix a problem
  • offer a break
  • spend time visiting
  • offer to pick up groceries, bring a pre-cooked meal
  • cut their grass, shovel the driveway

Here is some more practical advice on how you can help: 100+ Ways to Support Caregivers by Sharing the Care

If we can support our caregivers, the longer they can keep their loved ones at home. We can do better. Let’s not forget them.

Stacey aka WillowjakMama

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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