How can I help?

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Yesterday I shared the tragic story of Cynara Ali’s death and her mother’s resulting incarceration. In that post I argued that by not helping families like the Ali’s we all fail them, and thus are all ultimately responsible for the ensuing tragedy. I challenged readers to think about how they might offer support in situations of extreme caregiving. Quite reasonably, people responded to the post wondering what they, as individuals, might be able to do.

There’s the rub really. The problem seems so systemic, so very overwhelming, that there appears to be very little one person can do to help.

Add to that the fact that I hate glib proposals that offer cookie-cutter solutions to address complex problems and perhaps I would be better off ending this post right now and having a second cup of coffee. Much as I wish it could, a batch of home-baked muffins left at the doorstep will not solve a caregiver’s challenges (that said, we still really like muffins, I prefer lemon!). It is so much, much more complicated and there are no easy answers.

However, I think the question “how can I help?” is fair and deserves an answer. Here are my suggestions.  I invite people to add to the conversation.

1. First and foremost, be a friend.

It can be very hard to maintain a friendship with a caregiver. We bail on plans, often at the last minute, all the time. We want to talk about our child all the time. We want to talk about anything but our child. We are tired. We are cranky. We want something “normal”. We can’t seem to have something “normal”. We may even sabotage friendships because it feels like everything in our life is supposed to be a disappointment.

Be our friend. Stay connected. Email. Phone. Visit. Let us know you care even when we are difficult. Laugh with us. Drag us out of the house. Drop by with coffee. Leave flowers from your garden at our door. Sit with us in our pain. Let us know that you aren’t afraid of the journey even when it gets hard.

Learn about, and form, circles of friendship and circles of support.

 And be prepared to do this for decades.

2.  Become an ally.

Learn about our lives. Much of what we do is invisible. Advocate for change. Vote for change. Hold policy makers and politicians accountable for caring for the most vulnerable in our society. Don’t buy into stereotypes and mythical narratives like the saintly caregiver. Look deeper into issues and don’t accept simple answers or solutions. Support causes and advocacy groups that address caregiving concerns. Listen to us.

Be prepared to do this for decades.

3. Offer individually tailored practical support.

 Despite my suggestion above, sometimes muffins at the doorstep are exactly what a family needs. But there’s the catch. Every family is different. There’s no easy, one-size-fits-all answer.

By learning about a family’s life you can offer practical support in ways that make the most sense for that family. Some families will appreciate meals, homemaking support, assistance with yard work, snow shovelling, or help with child-care. Some families are very private and are already feeling overwhelmed by people intruding in their homes and daily lives. In this case more people intruding in to their daily lives might feel stressful and burdensome. Find out what your friend needs and then fill in those gaps.

Many assume that they could not provide care for a complex child. But remember most of us are not trained nurses. Perhaps you could sit with the child while the caregiver takes a hot shower, a nap, or a walk. When my son was his most medically fragile I couldn’t leave him unattended for anything. Taking a shower became a logistical challenge. Having someone hang out with my son, knowing they could just call for me if assistance was needed, while I started dinner or took a hot bath, would have been lovely.

Ask what might be helpful and then help.

Be prepared to do this for decades.

4. Money talks.

I am going to be blunt here. Complex kids (or adults) are expensive. Medical equipment, caregiving, supplies, medications, and so on add up quickly. Applying for funding support is labour intensive and complicated for caregivers. Actually, it is a administrative nightmare in an already overwhelming life.

Throw into the mix that in many cases a caregiver has had to leave the workforce to provide care, and you have a situation where money is often tight for families.

Even in families where you don’t think it is.

Can your faith community, service organization, or women’s coffee group help with the cost of a piece of equipment or the installation of a ramp, say? Yes, that bath seat really costs thousands! Can your community pay for one or two shifts of nursing a month so a caregiver can get out? Can you pick up the tab for pharmacy delivery ensuring a caregiver isn’t using their few precious hours of support to run errands, rather then enjoying a quality-of-life activity? Like sleep.

On a more modest scale, drop off gift cards for groceries, eating establishments, coffee, and so on. Money for pampering is often non-existent. Pay for symphony tickets, a spa day, dinner out.

Be prepared to do this for decades.

 

So here’s my two cents. If you are a caregiver what would you add? If you are an ally, or plan to become one, what would you add?