LindsayAs you know from my previous post, I recently returned home after spending two weeks caring for my dad as he underwent spinal surgery. I appreciate all the wonderful comments wishing my dad well and am happy to report that he is recovering nicely. My dad is a resilient man – at his two week appointment after having an entire jar of bone from his spine removed during surgery he asked the doctor when we can get back on his bicycle.
I’m adjusting to being back home, although it’s much more difficult than I expected. I was only away for a couple weeks, and yet I seem to have forgotten the basics like how to turn on the lights in my condo, where I keep my checkbook, and what the BF looks like. The man living in my condo looks like the BF but even cuter, so I’m going to let him stay, even if he did take my checkbook.
I’m also pretending I forgot how to do laundry and style my hair, but I’m not sure anyone is buying it. Don’t blow my cover.
In addition to adjusting to being home, I am adjusting to the affects of the trip on my health. As I mentioned in the last post, the trip was very exhausting. I’m still more fatigued than usual and my immune system seems to be impaired. The skin on my right palm has peeled off, although I’m not sure why. The burning, itchy, scaly patches on my neck have not gone and my neck and armpit lymph nodes are still swollen and sore. And for some compulsive reason I continually rub them to see if they continue to hurt.
Thank god the lymph nodes in my groin are not swollen.
The role of caregiver is not an easy one. I love both of my parents and would do absolutely anything for them. However, serving as a caregiver while I am away from my “caregiver” (i.e. the BF) for two weeks is a daunting task. I often devote much of my time to managing my own illness and don’t know how to balance managing my illness while caring for another’s. It’s something we all fear, but at one point or another, the reality is we will have to care for someone we love.
I’m going to make a grand admission: those of us with chronic illnesses are selfish. It’s not a character flaw, but rather a method of self-preservation. Managing my health is the most important thing in my life. It’s hard to acknowledge that, because my illness doesn’t deserve to be given such importance. Yet, relationships with friends and family, my job, love, altruism, helping the environment & my community, happiness, are all dependent upon my health. If I can’t function, everything suffers. It’s like the flight attendant instructs – I have to put on my own oxygen mask before I can be of any use to anyone.
In a meditation for caregivers, Sharon Salzberg talks about how, in her discussions with caregivers, many ” regarded their service, however difficult or frustrating, as a privilege.” I agree with Ms. Salzberg that the opportunity to care for another person is very humbling and is truly an honor. But as Ms. Salzberg identified, being a good caregiver requires balance – “the balance between love and compassion for oneself, and love and compassion for another. The balance between opening one’s heart fully and accepting the limits of what one can change.” It’s a great meditation, I would highly recommend it for any caregivers.
There is plenty of literature out there regarding being a caregiver, but I couldn’t find anything about helping with another’s illness while managing your own. So, I’ll just share what I learned from my mistakes…
Take care of yourself. First and foremost, being a good caregiver requires taking care of your own needs. If you’re passed out on the floor, it is hard to attend to the needs of another. Listen to your body for what it needs – rest, fluids, medication – and provide it. Continue your medical appointments.
Take a break. Even healthy caregivers are encouraged to step away from caregiving for short spans of time in order to continue their own relationships and interests. This is even more pertinent for those dealing with illness. Whether you go out and party or sleep all day, take a break from your caregiving duties. Which brings me to…
Get help. You can’t do this alone. Other family members, friends, church members, community members, volunteers, professional nurses are all available to help with all aspects of caregiving, including cleaning, providing food, obtaining medication, and caring for the patient. It helps to make a list of all the tasks you provide and delegate some tasks to others.
Take advantage of “good days“. Be careful not to overdo it, but on days where you are less symptomatic, it may be beneficial to prepare for the bad days. Meals such as casseroles, lasagna, or soup can be prepared in large quantities and frozen for easy future preparation.
Accept your limits and the limits of what you can change. It’s hard to watch someone else suffer. Most of us would do anything possible to improve the situation for a loved one. But if something you do isn’t going to change the situation, accept that and save your energy.
Readers, as I learned many of these the hard way, I would love to hear any tips you may have!
“Never believe that a few caring people can’t change the world. For, indeed, that’s all that ever have.” – Margaret Mead
Smell ya later.
– Linds
First and foremost: WHY aren’t I following you on The Twitter?! 🙂
Oooh, you’re on Twitter too?! What’s your screen name?
Very good points. We aren’t doing the other person any good if we destroy our own health. Taking care of ourselves first is not being selfish, it is a necessary part of being able to serve others.
Absolutely, we must take care of ourselves if we’re even going to attempt to take care of someone else!
Lindsay, I am dealing with having to visit the hospital daily for my dad who had his spleen removed on Sunday night through emergency surgery and a medi-flight to a trauma center. My body aches, my sinuses are killing me (praying an infection isn’t on it’s way), I am exhausted, my brain is mush, and on an on.
Kathryn, I’m so sorry to hear about your dad. I hope he is recovering well after surgery!
“It’s like the flight attendant instructs – I have to put on my own oxygen mask before I can be of any use to anyone.”
Great words!
Thank you!
Great post and such an important topic for those of us who are middle aged and have aging parents.
As you know my Mum is terminally ill and for the past 2 years I’ve helped to care for her. Being selfish is something ALL chronically ill people must be – you are spot on by saying that if you’re in a heap on the floor you’re no good to anyone.
You are also so right in saying you need to still find space and time for yourself. Originally I was going to visit Mum 7 days a week, but realized that I couldn’t keep this up. I now go 5 days a week, and use the other 2 days to either rest or take part in my own hobbies/see my friends. The days I have off are days when Mum now has other visitors or things going on so she also has a change of scene – I’m sure she gets sick of seeing me every day!
It’s also vital to have some space from each other – looking after a cranky exhausted ill person when you’re often cranky and exhausted yourself can lead to emotional friction. My Dad isn’t ill, but has the 24/7 job of caring for my Mum. He takes 1 full day off per week to go mountain walking with his friend and comes back less stressed and with tales to tell my Mum of the people he’s met and the things he’s seen 🙂
It’s all about balance. Jak x
Thank you for your comment! I’m glad you are able to have two days per week to yourself. It is so important to be able to de-stress and take time to yourself. I think it’s so important to have our own existence, be our own person, and not be identified solely as a caregiver (or, for that matter, someone with a chronic illness).
You’re absolutely right – it’s all about balance!!
I’m so glad your father is doing so much better. You are so right, a caregiver must take care of him or herself first. Especially if we have a chronic illness. I admit, I couldn’t do it now. I took care of my mother when she had cancer, and as you quoted from sharon’s book, I do still regard it as a privilege, but it was extremely difficult. However, i was not as ill as I am now.
At one point my husband gave me quite a scare, he presented as having a stroke, they still do not know what happened, but by the next day he was fine. All test came back perfect. (they think he had a severe ocular migraine) I was terrified. Not only because my husband my have had a stroke, but how could I care for him? He is my caregiver. What would I do? Then the guilt that I could be thinking about that when he was lying in the hospital…….I was terrified, for so many reasons, and felt I didn’t have the right to feel that way. Going though something like this is physically and emotionally exhausting, it is almost impossible for us to take care of us to the point we need to, we are so wound up by everything that is going on.
I tried to find the book you mentioned. Meditation for the caregiver…I couldn’t find it on Amazon, can you tell me where you found a copy? I’ll look more too.
I was my mother’s caregiver before my illnesses were at the point they are now, but I must say, I let my health fail when I was a caregiver to the point I was almost put in the hospital. (and I was in pretty good health to begin with.) So YES TAKE CARE OF YOU FIRST!!
Now, go, take care you you….always.
wow, that’s very scary! i’m glad to hear that your husband didn’t have a stroke – i can see how that would be terrifying on multiple levels!
The Meditation for the Caregiver was part of a meditation series by Sharon Salzberg. I believe I borrowed the CD from my local library, but it is also available as a book. It includes many meditations. The caregiver meditation was just a few minutes long, but the rest of the meditations were good as well! Here’s a link to the book or cd: http://www.amazon.com/Real-Happiness-Meditation-28-Day-Program/dp/0761159258/ref=tmm_pap_swatch_0?_encoding=UTF8&sr=&qid=