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Who Cares?

By Sheryl Kraft

Created: 12/07/2009
Last Updated: 12/07/2009

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That's what I used to think when people complained about taking care of someone who was sick. I used to think that they were being selfish; after all, it wasn't about THEM, it was about the person who was sick. THEY were the ones who needed the attention; they were the ones who were suffering. I knew a man, a very well-educated, caring man, who complained about himself when he had to see his wife of many years through many different surgeries that seemed to crop up year after year. He spoke of his many trips back and forth to the hospital; he spoke of how it was affecting his routine, his sleep, his health. And I used to barely acknowledge these complaints, because I became, well, almost angry that he dare think about himself...

Until I was put in the role of being a caregiver following my husband's hip replacement and subsequent dislocations and need for a surgical revision.

Now, I'm not saying I'd abandon my spouse (which was the topic of a of mine), but it wasn't until I was on the other side that I realized this man's complaints were well within reason.

I happen to be a bit less verbal (and cautious, I guess) about saying anything about myself in this circumstance, feeling at times both guilty and burned out. But I'm at the point now that I can state this: being a caregiver does take its toll on the caregiver. It's not only stressful to watch a person you love suffer, it's also physically and mentally challenging to arrange trips back and forth to the hospital (which in my case is about 50 miles away), field phone calls from well-wishers, be a healthcare advocate (this includes being "firm" with nurses and other over-worked medical personnnel - not a strength of mine), take on responsibilities that you normally would split; virtually, add a full time job.

Caregiving was easy when my children were small; to me it wasn't caregiving per se, but a much more natural and organic process. Caregiving is something I always thought I'd have to do for an aging parent; yet now I'm in the role of one, not for a parent but for my spouse.

I never gave it a thought until people started phoning me and leaving messages asking how my husband was doing, ending the brief message with a sort-of P.S.: "And how are YOU doing?" or "Make sure you take care of yourSELF." I realize now that it is not only acceptable but appropriate to be thinking about yourself while taking care of another. And that should be done GUILT FREE.

One other thing I've learned through this new experience that I have to get better at asking for or accepting help. That's something that is so very hard for me. I've turned to my two sons to help with grocery shopping, hospital visits and returning phone calls to family. I've accepted help from close friends who have brought over dinners or offered to come to the hospital and sit with me or take care of my dog. It's still impossible for me to reach out and actually ask for what I need (sure, I'm comfortable with that with my own children, but that's about it), yet I do realize that there are many times in life that it's not only important but desirable to ask for help. People actually like to be helpful. They like to be needed.

Today, I took my husband's recommendation to stay home and get some things done instead of visiting him at the hospital. I must admit that I did feel a pang of guilt when I spent almost two hours at the gym. But once I got back home and set out to catch up on all my work that I had neglected last week, I approached it with a newfound vigor and energy. I haven't yet booked that massage that people keep suggesting, though. Maybe that's next.

What's your experience with caregiving? Have you been in that role? How have you dealt with its demands?

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Comments

I was a caregiver for my elderly mom at the end of her life, seven months of hospice. People often asked me how I managed, from what well came the strength I summoned for this task. I still wonder sometimes. When faced with such a situation, you simply cope. Mothering experience does help though. Caring for one's spouse must be a challenge. I was really grateful to have hospice workers giving advice. Caregiving on one's own is more difficult. Remember to reach out to others, and take care of yourself. That massage sound like an excellent idea ....

Oh Sheryl,

My heart goes out to you and your husband. I hope he's on the mend and that this is all a very bad memory this time next year.

I was an unexpected caregiver to my father the week he died. My younger brother went in for emergency surgery and my mother was up with him when my father entered the final stage of his battle with cancer. Luckily I was there, but, while it only lasted a week and I did have nurses and hospice to help, my father wanted to be at home and I found myself in a role I hadn't expected. I'm glad I was able to help my father, but I was so worn out, stressed out and sad that I don't know how people do it for much longer. I did feel guilty that I wasn't more Florence Nightingale, but I now realize that all we can do is our best.

I'm e-mailing this to my sister who is caring for her husband who has leukemia. She thinks she is fine, but had an accident which could have killed her, and I think the lack of attention that led to the accident can be traced to the stress she is under.

I've done it, too. It is NOT easy, but as Alexandra said, you just cope when you have to.

P.S. I just had to tell you--the "captcha" word below my message is "exhausts". How appropriate!
Vera

There's nothing that makes you feel quite as frazzled, vulnerable and out-of-control as caring for someone you love who is ill. Thankfully, I've only had days or weeks with that type of experience--nothing long term as you describe here. But thank you for sharing your story so honestly.

I have a husband and daughter with chronic illnesses so I've thought a lot about this. It is very draining and hard to be the caregiver. The hardest part for me is the helpless feeling when there is nothing I can do and I have to watch them suffer. I've learned that I have to take care of myself so that I am able to take care of them. Wishing your husband a speedy recovery!

It's true. Just keep saying over and over to yourself, "People want to help me. People want me to be happy and stress free." It's more selfish to turn away help than to accept it sometimes. Take care of yourself. Care giving is hard--one of the highest areas of burnout.

I find myself in this situation this very second. We've had non-stop family medical drama since spring, where pretty much everyone around me needs help of some form. As the only "healthy" one available, it's a tremendous amount to handle. My goal is to stay that way, but there indeed are days when I feel like my heart may just burst from the stress and worry.

What wonderful comments and feedback! Thanks for sharing all your stories and advice. Each and every one is touching and sincere.
Vera, my thoughts are with your sister for a full recovery. (What a funny coincidence with the captcha word "exhausts!"
And Alexandra and AlmostSlowFood, your mom and your father were extremely lucky to have you there at the end of their lives. MarthaandMe and Roxanne, what stress you must both be under! If there's anyone that needs to take care of themselves, it's both of you.
And Alisa, I'm saying it - "People want to help me."

Sheryl, I'm so glad you used caregiver instead of caretaker. I hate the word caretaking, because it reminds too much like undertaker and it sounds a little selfish. Caregivers give much of their time and emotional energy, so it seems a more appropriate term to me.

Anyway, I have not had to be a caregiver for any extended period of time, but I watched my mother take care of my Dad for several years before he died and it was horrible to watch. At the same time, though, it made the simple gestures (like him sending her an egreeting for their anniversary because he was housebound) mean so much more and it made them appreciate the time they had together, because they knew his days were numbered. I hope your husband's health is improving and that both of you will return to your regular selves soon.

Thank you for reminding us how hard it is for the caregiver, not just for the person who is being cared for. I enjoyed reading about the evolution of your thinking on that -- it seems that the suffering you are going through (which I am very sorry about, by the way) is making you more compassionate towards others. I think reading this will be a help to so many people who are facing or will face similar situations. My heart goes out to you and to your husband. And I can't believe the hospital is 50 MILES AWAY. That is so far. And it must be so hard.

Sheryl thank you for a great post on an often overlooked subject. It's true that it's difficult to talk about how hard things are when you're the "well" one in a couple, but it's also true that caregiving takes an enormous toll that's often unacknowledged. I work for Caring.com, a website that supports those who are caring for aging parents or unwell spouses, and I see exhausted, stressed depressed caregivers burning out all the time. So do give yourself a break, and a pat on the back, and thanks for talking about this. And any caregivers who are in this situation, check out Caring.com; it's a valuable support and resource.

I've been on both sides of this situation, and they both suck! I feel for you and your husband. Here's to a speedy recovery for him, and a two-hour long massage and pedicure for you!

I always think of the flight attendant, "put the air mask on yourself before helping anyone else." In some ways it is against the way we are taught about being "polite." Don't think of you, think of others. But you're useless if you can't breathe... right?

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