From Our Partners at Jack’s Caregiver Coalition
Because your loved one’s needs change, you are always learning something new. This is one of the things that makes caregiving so difficult.
This might include needing someone to run errands for them and help with things around the house, or it may mean emotional support. Throughout their journey, their needs will change, as will the level of care they receive from caregivers. It may become more intense at times and easier at other times.
Reach out to your friends, family, community, or a caregiving group to find the support you need.
Dear Loved Ones,
Here’s the deal. I need help in my role as a caregiver. There, I said it. And I’m asking you for some of that help. I’d love it if you’d consider joining my caregiving team, to help me face one of the biggest challenges I’ve ever faced.
I’m new to this caregiving gig and I have a million things to do. I don’t have time to do them all so I’m asking you and some others to join me on this very important mission of caring for my loved one facing a health crisis.
Here are some of the ways you can help. You can decide the best way for you to be a part of my team.
“Right Hand Person”
This is the biggest and most challenging role. It essentially means you are willing to do anything at any time within reason. You’re MY primary caregiver. Sometimes you’ll have do things that you are not equipped to do just like I do. Sometimes I might be in the darkest Sh$%&iness of my life. Down in the bottom of a foxhole. And what I might need in that moment is for you to just climb down into that foxhole with me and hang out for a while. In this role you’re there to remind me I’m the alpha dog, who’s in my pack, and why I need them. To challenge me to think about who else I’m engaging in the care of my loved one.
“Check-in Checker”
This is a role many people can play. Simply check in on me weekly or monthly (ask me how often) – and simply ask what I need at that moment. I might need a pep talk, or just to shoot the Sh$%& with a good friend. Or maybe for you to grab something from the grocery store. Be ready to drop what you’re doing and dive right in.
“PR Person”
This role is responsible to get the correct story we want told to the outer perimeter. My peers at work. My long-lost aunt who lives on the other coast. If this role isn’t played well, I’ll constantly be answering the same question. And constantly trying to correct rumors which inevitably happen when people have no information. You might use a blogging tool, a social media tool, or a good old-fashioned text chain. “Booster Club Captain”
Having a health crisis is a lot like having a baby. Initially everyone is there and engaged with help and support. As time goes on people fade away but me and my loved one will still be here holding this baby. This role is keeping the encouragement coming beyond the honeymoon phase. Your objective is to build a team or a system that produces a sustainable stream of encouragement for the long-haul. Ideally these are handwritten cards/letters. Your job is to keep your team of encouragers inspired. Generate ideas for them like suggesting they sit down and write out a year’s worth of cards/letters and pop one in the mail every month. “Delivery Driver”
This could mean hauling humans, like kids to school, or my loved one to treatment. Or it could mean running and grabbing stuff. Like propane for my grill, or milk for our Wheaties. Either way, if something is in point A, and I need it to get to point B – you’re my huckleberry.
“Laundry/Dishes Wrangler”
This one is tough. No one could completely take over all the laundry and dishes. But from time to time I will think to myself – “Holy Sh$%&, look at that mountain of Sh$%&!!” These are the moments where you come in and the moments you try your best to prevent from ever happening. Climbing a mountain with a friend is way more fun than climbing it alone.
“Deep Cleaning Deputy”
Not everyone loves cleaning, but everyone loves a clean house. These may be simple tasks, but the impact is tangible, and huge. And just because you aren’t good at cleaning doesn’t mean you couldn’t play this role. You’re simply taking the responsibility to make sure it gets done by someone somehow. “Honey-do Doer”
Your job here is to come over (ask me how often) and tell me to hand over my “honey-do” list. Then, get it done. Simple, right? And if there’s stuff on that list you don’t have the skills or the time to accomplish- find someone who does. You’re always the first one on the scene to triage every honey-do item.
“Green Thumb One”
This task is huge. Yardwork is an enjoyable activity for some, but rarely is it for the caregiver. It’s often one of first things that I’ll realize I’m falling behind on because I can see it. And my neighbors can too. It might mean you do that work yourself. Or it might mean you manage other people who do that work. But either way it means I can count on you that when I look out into my yard, I won’t see another thing to do. “Social Calendar Corporal”
Most caregivers hang out with family and friends way less than they should. Loneliness is an epidemic among us. Assuming this role means you become the instigator. “Who wants to (fill in the blank)?” starts it off. From there you take the logistical reigns so that all I need to do is show up.
“Hospital Hang Out Person”
For many of us caregivers the hospital has become a second home. Often, these trips are stressful times. Surgery is often involved and often lots of confusion, waiting, and uncertainty. And while there are often lots of people coming and going, it’s rare that anyone is there for the caregiver. That’s your opportunity. Often what I might need most is simply a distraction. It’s a time that I’ll feel compelled to be in arm’s reach of my loved one. So, the opportunity here for you is to be a stone’s throw from me. We might play cards. Arm wrestle. Or entertain kids. You might need to run to grab odds and ends at the house. It’s all fair game.
“Research Whiz”
This is a role for someone that loves digging into a question and answering it. Google is great, but there’s more to this role. The questions that I’ll need answers to are often extremely nuanced and complex. And the highest value solution is rarely the top search result on a web search engine.
“Workout Buddy”
Often one of the first things to go is a caregiver’s exercise routine. It’s the time when he loses his edge both physically and mentally. In this role you work to establish that routine if I never had one or reestablish it if I did. Ideally these are outdoor activities like hikes or mountain biking. But the gym is cool too. Get and keep me in the habit of getting my blood pumping. In the habit of blowing off steam. In the habit of not feeling alone while I’m doing it.
“Meal Person”
Reach out every month and get on my calendar for a meal. Just you and me or invite others that you know I’d love to hang with. Ideally you pay for the meal because paying for my loved one’s healthcare is super hard on the pocketbook. If you can’t afford to always pay or if I insist on paying, we can give both of our credit cards to the venue and let them pick at random which one to charge.
This has been an unbelievably difficult time, but with the help of you and other caring friends, I know that I will get through it. Thank you for being there for me.
