I’ve had the privilege of knowing others in similar situations – caregiving for a loved one who is dealing with a life-long and progressive condition. Something we all share is a level of anxiety that is uncommon in the general public and usually results from a shared fear of the unknown.
But what are the unknowns of caregivers?
The Unknown Changes in Medical Status
The most common anxiety we cope with is related to the actual disease progression itself. In our case, Multiple Sclerosis tends to creep into our lives when we least expect it, and it’s always a challenge to figure out whether it’s a true progression of the condition or if it’s something else: infections, fatigue, hormonal imbalances, other conditions related to aging, etc. It takes a lot of time, effort, and coordination tofigure out where the problem stems from – and its extremely frustrating when “nothing” seems to be the actual problem.
Because – HOW could nothing be the problem? There’s no answer here and sometimes that is more terrifying, and anxiety inducing, than knowing what is actually happening.
The Unknown Future
I’d generally classify myself as a “Type A” personality, and if you’re one too you likely exhibit some of the same characteristics: we’re great multi-taskers, have a keen sense of time urgency, are ambitious, and achievements-oriented. We are driven by progress and anxiety creeps in when we aren’t in control. And when you’re living that caregiver life, control is often outside of our reach and there are even fewer positive milestones to celebrate.
The Unknown Finances
How do you even plan for something like this? Just the thought of the cost to manage a condition long-term is daunting. Long-term is so very vague – and somehow, we need to make this work. If you have insurance in America, then you have to deal with copays, deductibles, out-of-pocket maximums, coinsurances – it never ends, and it isn’t consistent across all situations. Also – how is a $6,000 deductible, insurance? Many caregivers are under or unemployed – how is $6,000 reasonable? This is a reasonable question, but it’s a different story for a different day. There’s a lot going on in the finance department (it’s a department of one, but still) when you’re a caregiver – and there is almost a weekly reason for alarm. And yet, we must be level-headed enough to work through the situation.
But how? When the panic sets in and you can’t see your way out, how? There’s no magic bullet to manage this kind of insane amount of stress. But here’s what works for me.
How I Manage Anxiety
I’m a firm believer that anxiety is best managed when youget a healthcare professional that you trust and have a solid relationship involved. I’m not saying that medication is a must – most physicians and therapists want to help their patients achieve the quality of life that they desire. And if your desire is to help manage your anxiety, a medical professional may be able to help you identify ways which may include medication, meditation, and/or mediation.
Medication is a topic I won’t broach without a medical expert’s commentary, but meditation and mediation are my jam.
Meditation can take on many forms. Some choose mindfulness activities that they practice daily (or several times per day), others may engage in a more physical mediation practice like Yoga.
My preference is a mindful approach to prayer. Being an Orthodox Christian is central to our family life and I have learned over the years as a caregiver, having a tribe who have the same values as you do to turn to when you have “big” life questions is essential to surviving the difficult moments.
I try to wake up with thankfulness in my heart. I’m not much of a talker in the mornings – there’s that need for my homebrewed Starbucks again – and as I’m getting myself and everyone ready for the day I try to be thankful for what we have, verbalizing in my mind the wonderful things we have in each other. I also have to do a lot of “coaching” (that’s code for hollering) to get my kids out the door and to school on time.
Throughout the day, I often catch myself murmuring “Lord have mercy.” Maybe this is just a southern mom thing – but I’m originally from Canada, so I have no excuse really. Sometimes, the prayers are more fervent –asking for wisdom or patience in moments of self-doubt and panic-inducing challenges. I also ask for mercy for my children – I know that the task of caregiving takes me away from them in some capacity. I know that they gain so much by observing our measly attempt at keeping everything together (mostly what not to do,) but a life that includes caregiving isn’t easy on kids. They grow up too quickly.
And here I was concerned that they’d grow up too quickly in public school learning things about life that I wasn’t prepared to talk to them about.
The point is that prayer helps me.
I’m also not opposed to crying and yelling into a pillow –this is neither meditative or mediation – but, it helps. If feels awful when you’re doing either, but feels pretty great afterward. It almost completely deletes the anxiety out of my system.
Mediation is another aspect that helps caregivers find their voice in a place where they may not feel like they have one. Friends, family members, (co-workers who are friends,) priests, bartenders, support groups (in-person, on Facebook, and elsewhere), and actual therapists/psychologists/psychiatrists, etc. – these are the people you may turn to for mediation.
If it isn’t necessary now, keep this list handy. At somepoint – and I wish I could say that this won’t be the case – but most caregivers will need someone with whom to have deep and meaningful conversations about how THEY are feeling. And that’s okay. Establish your go-tos now, join a Facebook support group for caregivers, talk to your friends and family now so that they know they’re on your speed dial. When anxiety strikes, you’ll be glad to not have to tell the story from the beginning – sometimes, it’s just too painful.
So, what works for you? Do you exercise? Cook? Are you one of those who cleans the whole house when anxiety sets in? Share what works and maybe it could help someone else in a moment of hardship.