You may not be but the one you’re caring for probably is…
Today I am writing at the request of a fellow blogger who has a message she wanted me to share with family caregivers. Becca lives with a chronic illness and in her blog Chronic Beauty (click here to read) she shares what life is like having to rely on others to care for her. At 23 years old she is wise beyond her years and unbelievably courageous in her daily fight. So she asked me to share with family caregivers some advice and insight she has from the other side of caregiving.
Only spoonfuls of energy
Becca calls her fellow chronic illness warriors “spoonies” based on “Understanding Chronic Illness Through the Spoon Theory” by the MollysFund.org. Those struggling with a chronic illness start each day with a limited number of spoonfuls of energy and each day they need to decide how they will use their spoons. Get out of bed that’s 1 spoon, shower that’s 2 more spoons, go to the doctor that 3 spoons – be careful you are running out of spoons and you haven’t really done much of anything yet. And it is from this place where our loved one needs to ask for help. It is from here that they need someone to step in and care for them. And it is from this place that Becca has some advice for you the family caregiver from the one needing care.
Please understand me
We will never really understand what the person we are caring for is going through. Many times they will put on a good show to hide or minimize their struggles. They do this to protect themselves from the harsh reality of their situation but also to protect us their caregivers. They don’t want us to worry or be afraid – they’re trying hard not to worry or be afraid themselves. They don’t want to be a burden.
But our loved one does need us to acknowledge that they are ill and that they do struggle daily. They need us to understand what they are going through so we can provide the compassionate, supportive care they need. As caregivers we need to learn how to juggle the harsh reality of their disability while being supportive and encouraging of their current strength and abilities.
Don’t treat me like a patient but remember I am
As family caregivers our natural tendency is to just do for the one we love. Our own fear and anxiety has us wanting to protect them from harm and step in to make it easier. But remember every time you step in and do for your loved one you are reminding them of all they cannot do. As Becca reminds us our loved one already “feel like failures” and “many times we just feel like burdens… like we are more trouble than you can handle right now”. It is important to remember that they are still a person and not a patient or a diagnosis or a collection of symptoms and disabilities.
As caregivers we need to learn to step back and let our loved one take care of themselves whenever and in whatever way they can. And even though we are doing it as a way to make things easier for them, remember that in doing so we are taking away what little independence and control that remains.
Ask me don’t tell me
We must remember that as caregivers it is more important to care about our loved one then to care for them. But in the busyness of caregiving we tend to make decisions and take actions that we think (or know) are best for our loved one without ever asking their opinion. So we need to be sure that we are slowing down, taking the time to explain and ask our loved one what they would like you to do for them. Even for those caring for someone with memory or judgment issues it is still important to be sure that we are honoring our loved ones wishes.
Help me save my spoons
Probably one of the most important pieces of advice Becca has for caregivers from those needing care is this:
‘Please don’t tell me all of the things I could or should be doing. I already know and I am very sad and angry that I can’t. Understand that I am doing what I can do today and that I may be saving up my spoons for something I need to or really want to do later. Some days I need to just rest because I already spent too much energy doing whatever it was that I wanted or needed to do. That trip to the doctor, that birthday party with family may have been more than I really had energy for but couldn’t or didn’t want to miss. So today I am resting and saving up my spoons. And yes I know I need to get up and take a shower but today I just don’t have enough spoons to do that!’
I hope you found this advice from Becca and the other side of caregiving a helpful reminder of how important our job is as family caregivers but also how hard it is to be the one needing the care.
Please leave me a comment or send me an email at my new email address Pat@PatThorne.com. Sign up for my weekly newsletter and follow me on Facebook at The Sojourner Project.
So until next time – take care of yourself and know that there is
…help for the journey