Caregivers work hard, unpaid, to care for someone they love. We know that, and we want to support you in that journey, which is why we offer workshops like Caregiver Stress and the Family Dynamics of Caregiving. We also know that it’s important to connect with other caregivers, both offline and online. This is Stefanie’s Caregiver Story. For more of her stories, visit her blog, Alzheimer’s Post of the Day.
You hear it all the time:
“Care giving is an isolating journey.”
“Take care of yourself and nurture your social circle for support.”
“Remember to lean on friends and family.”
You know what’s less commonly heard?
Here are some hard truths:
“Caregiving for someone with dementia is isolating BECAUSE you lose practice speaking “normally”. Everything becomes just the bare necessities to communicate so that you don’t confuse your loved one.”
“Take care of yourself BECAUSE it is like holding down three full time jobs. (24 hours divided into 8 hour shifts is 3). Every day. With no holidays. And if you get sick, you know how heavy the burden is and you can’t think of a single person in this world you could ask for the kind of help you’ll need.”
“Nurture your social circle for support BECAUSE you will say and do things that don’t make sense to them. You may say the wrong things at the wrong times. You may forget to call them back. You may have to bail last minute on plans because you are just too tired to leave the house. Make sure they know so they don’t get annoyed with you.”
“Remember to lean on friends and family IF they call you. Cause often they won’t.”
This sounds bitter. And you know what? It is.
I happen to have the most incredible friend circle in the world. I don’t know how I got so incredibly, unbelievably, tear-jerkingly lucky. I just did.
They call me. And if I don’t answer, they call back later. They let me blabber on and don’t think I’m self-centered. They let me be hyper or sad or anxious or cry or laugh too loud because it just feels so damn good to be outside.
They invite my mom and dad out to movies with me. What other 32-year-old’s friends would do that? They offer to sit with my dad and look at photos so mom and I can go out to the movies. They take my dad on dump runs because it’s always been his favourite Bobcaygeon social outing. Forever.
They love my parents and me.
I am the exception to the rule.
Something I hear time and time again from people going through this same journey as me is that they are lonely.
They are grieving their loved one while they sit in the same room.
They are stuck in a rut of a routine that is like raising a child except that every joy you feel when your child meets a milestone in development is replaced by a secret sorrow whenever your loved one can no longer do something they used to.
And you can never let your sadness show. Because you need to protect them from that knowledge.
So, I beg you, everyone reading this: if you know someone who is caregiving for someone with dementia – or any debilitating disease/trauma for that matter – call them.
Ask them to lunch. Ask them how their day is going. Ask them if you can swing by and help with weeding the garden.
Don’t shy away from the sadness. Don’t be afraid of sharing the grief, the anger, the frustration. Don’t be afraid of sharing the joy, either.
People who have dementia are still people – and they are still your friends. They are capable of laughter, joking, singing, and crying.
People who take care of loved ones with dementia are still people – and they are still your friends. Be kind to them and show them WITH YOUR COMPANY that they, too, are capable of laughter, joking, singing, and crying.
Call them. Even if it’s been “too long.”
Believe me, we hear your silence quite loudly.
Share your caregiver story with us: email it to firstname.lastname@example.org.