By Julia Ansbacher
Hi! My name is Julia. I am 35 years old and live in Coquitlam, BC. From the time that I was born, I had a learning disability. When I was 33, I was very sick and had …
By Kathy Bromley
As a family we have volunteered with a variety of organizations to ensure that Shannon’s life includes a sense of contribution. My son and I trained and became ski instructors with Vancouver Adaptive Snow Sports, Rob was …
By Kathy Bromley
From the day our son Michael was born, he began working on his independence. As a toddler, he would prefer to do things for himself rather than rely on us. As he started school and began playing …
Perhaps you fear losing the parent you care for. Or maybe, you fear your own death as you care for your dying relative. Maybe you just don't know who you will be when your loved one passes and leaves you alone in the world, without the iden...
By Dallas Hinton
Our daughter Nora, born with Down’s Syndrome, has for some years been known as Rainbow—she chose that name because she love nature and it seemed to suit her. At the end of Grade 10 she had a …
We asked a few of our members about what they get up to in the summer. Here are their responses:
Corey – Disk Golf
Corey is an energetic man with a big heart who loves to chat and tell stories. …
Today's guest post is by Derek Hobson, BA. Derek is the editor for ConciergeCareAdvisors.com, a senior care referral agency. He developed a passion for elder care when he became the primary caregiver for his grandmother. Since then, he has sought to inspire fellow caregivers as “there is no success without hardship.”
When I was 20 years old, my grandmother was diagnosed with a slow progressing form of dementia. She didn’t need care immediately, so we had time to research options. We read books and countless articles, we swapped knowledge over dinner, and frequently talked to our grandparents about how everything would work out given our lifestyles. And yet, when the time came to provide care for her, I could not have been more unprepared.
Although I had a job, I was a full-time student, so work was primarily for a disposable income. Since the rest of my family had full-time jobs and my grandfather didn’t drive, I received all the phone calls and texts. I suffered from more stress than I’d ever experienced before. It seemed like my phone was buzzing incessantly and it was always to help my grandmother. I had to cut back my hours at work; I didn’t have time to spend with friends; I was falling behind in my studies. To make matters worse, I had no one to talk to about it.
I felt like I was not making a difference and that mindset was like a poison, making me grow more and more resentful – of my grandmother and my family. My family only called me if they needed something for my grandmother. I wasn’t getting enough sleep and ate more fast food than I care to admit. I did not understand sacrifice.
Despite all of the time I dedicated to figuring out how my day-to-day routine would change, none of it prepared me for how my lifestyle changed. And the only reason, my livelihood improved was because I started talking about it. From that, I’ve learned a few things to pass on to new caregivers.
- Tell Your Employer
No matter what your job is (and even if you don’t cut back on your working hours), tell your employer about the change in your life. If you do get that emergency call to help your loved one, they will be infinitely more understanding.
- Nap When You Can
Sleep becomes a challenge, especially if your elder is suffering from dementia like mine was. Their sleep schedule changes too – some of the worst emergencies happen during the early morning hours or mid-evenings.
So if you come home from work or school and someone else is taking care of your elder, then nap – you’ll be glad you did.
- Make Time For Yourself
There’s a good chance you’re not taking enough time for yourself. Even if it’s just a 15-minute walk every day, you need the air – plus, turns out a 15-20 minute walk
does wonders for your heart.
My situation was a bit different since my whole family was working together. But you can always ask your in-home caregiver to stay an extra few minutes while you walk or a trusted neighbor. Don’t skimp on yourself.
- Eat Right
I’m not the only one who didn’t eat right. It’s a crisis among caregivers! If you talk to fellow caregivers, you’ll find that – for a time – no one eats well. However, making healthy meals and continuing to cook helps you regulate your time and you’ll feel better – believe me!
- Be Vocal And Ask For Help
This is the perhaps the most crucial for new caregivers. You need to talk about it. And I mean really talk about it – not just complain at
someone. If you ask for help, you’ll get it. And you need to ask because It doesn’t matter if it’s a caregiver support group or a senior care service
, we all feel selfish and guilty when about asking for help. We feel doubly guilty when we ask for help taking care of our elders, because we all know that eventually it is going to be rewarding.
Yet, one of the worst parts was reading about how rewarding being a new caregiver is and feeling like I’m the only one shouting, “When is it going to be rewarding?!”
But I’ve since learned that the reward isn’t something you get immediately and oftentimes, you won’t even feel it while you’re the caregiver… but when my grandmother passed away, I knew I did everything I could for her. I spent quality time with her that I would never have had a chance to otherwise. And there were days where she gripped my hand or smiled that old, familiar grin that let me know she was going to be alright.
That was rewarding.
One day a few months ago, fellow disability Mom and writer Jennifer Johannesen
sat down with me for a chat. (I highly recommend Jennifer's book
and her blog
- they are at the top of my favourites list.) In a previously published portion
of our chat, I introduced Nicholas and our family life.
Here, I discuss the pain and joy in parenting a complex child as well as the perils of navigating the health care system to get the best treatment for our son.
00:05 – Distinguishes between parenting and the role of the therapist
01:41 – Discusses types of therapy and her right as a parent to make decisions
02:46 – Shares an example of how invested she was in therapy
04:27 – Identifies the moment when she realized what her role should be
05:22 – Cautions against allowing the parenting role to be overtaken by therapy
09:37 – Shares a story about poor communication of medical information despite her extensive experience
12:52 – Encourages parents and professionals to establish boundaries and role definitions
16:31 – Discusses ‘age-appropriateness’ for both the child and the parents
20:22 – Shares her son’s adjustment to moving away from the family home
After twenty-five years of intensive caregiving, the most important thing I've learned is that giving good care over time requires a team. Trying to manage alone and without the help of others inevitably leads to exhaustion, depression, ill healt...