Caring for a Spoonie

As many of you know, Lauren normally writes a post every Tuesday, however this week has been rough.  Because of this, I offered to help and write something for her – creating Alex’s Caregiver Corner, where I will be contributing semi-regular posts. Today’s post is about caring for a spoonie and the adventures (or misadventures) that that can bring. Life with a spoonie is always interesting, as it is hard to predict what will come day-to-day and you must be flexible and understanding.

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Day-to-day life for spoonies, and those that care about them, is an adventure all its own. I do not know what to expect when I wake up every morning. Will today be a bad pain day? Will Lauren have the energy to get out of bed? What will she be able to eat today? These are all questions that go through my head every morning. I try hard to get a routine and make sure I am prepared for anything that comes up. During the week, I will wake up early to take care of the dogs, prepare breakfast, and get everything ready for our days. I work hard to make sure Lauren gets to rest and recover as many spoons as possible for the day. On the weekend, I make sure she can sleep in as late as possible and gets as much rest as possible. I will handle much of the house work, so she can use her spoons on something fun that she enjoys.

When caring for a spoonie, you may find yourself taking on everything out of love. You want to do the best you can to make sure they do not need to worry about anything. This is a noble endeavor, but a futile mission. The fact is, you are one person and can only do so much. You have your own tasks to deal with like a job, yard work, or general house work. Make sure you take time for yourself, as well as care for the person you love. It is a balancing act that can be very challenging, I can say that I have not even found a perfect balance after 3 years. What I have learned is that you need to practice self-care both mentally and physically. Find things you love and make sure you find time for those, sleep in once in a while, spend what time you can with friends, and most importantly reach out for help when you need it. Also, make sure you enjoy the little things, when you can, with the person you love.

A spoonie’s life is not easy. They can miss out on a number of things because they are sick, too weak, or are in pain. It can be just as challenging for a significant other. You can get lost in a cycle of care and recovery that can engulf your life, if you are not careful. Take time to enjoy the small things with the person you love. Lauren and I enjoy baking together, coming up with new sewing projects, watching television shows, or going to a museum. Recently, Lauren and I enjoyed a wonderful day at The Henry Ford Museum where I wheeled her around and we talked about Disney movies while we learned about the animation process for Pixar. I could not imagine a better way to enjoy the day! The two of us needed the time together after a long winter avoiding the flu and colds.

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Meeting Dug & Russell on our honeymoon

My final advice to anyone who cares for and loves a spoonie is to be understanding. You cannot always see the pain or weakness, and you will not always know how to help, but you can be understanding and listen to them. They will tell you what they need and need to know that they can trust you to believe them. Spoonies can be ignored and dismissed by so many, so what they need most from you is your support and understanding. When they are too weak to get out of bed, help them by making breakfast. If they say that they are in pain, they really are in pain. If they tell you that they need to go to the hospital, get your butt in the car and drive them. Most of all, when everyone around them dismisses their pain and symptoms, even doctors, listen to what they are telling you and fight for them. You are their rock and support, the person they rely on to help with day-to-day tasks, and the person who is there when doctors give up.

Caring for a spoonie can be challenging, but it is a labor of love. Lauren is the most important person in my life and caring for and helping her every day is done because I love her more than anything. Even through the all of her illnesses and the days she cannot get out of bed, we still enjoy every second together and share everything. Every day is full of love and laughter. I know on my worst of days, she can make me smile and when she is in terrible pain, I know I can make her laugh and at least make her happier. When we fall for a spoonie, we know what we are getting into, and everything we do is because we love and care about them. They are the most important people to us and need our full support, care, and understanding.

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Paradise Falls at The Science of Pixar Exhibit