Putting the “I” in Caregiving
Posted by Victori on: January 10th, 2007
Like most kids growing up in the 1950's and 1960's, I played a lot of sports. After school. All day on weekends. In the rain and snow. Even in the dark. Over nearly 20 years of playing organized sports, I must have had ten coaches tell me and my teammates, "There is no ‘I' in the word team." To succeed, they'd say, always put you second and the team first.
Well, this may work for baseball, basketball and football players, but I'm here to tell you that it does not work for family caregivers. Family caregivers need to learn to put the "I" in caregiving—and keep it there!
As a family caregiver, it's so easy to put your needs on hold. And who can blame you? Look how busy you are. Every place you turn, it seems that you have responsibilities, time pressures and everyone-your spouse, children, friends, co-workers, volunteer organizations and, most especially, the loved one in your care-depending on you. Sound familiar?
The health of the family caregiver is becoming a national concern. This is easy to understand when you look at research results, such as the "Study of Caregivers in Decline" conducted in 2006 by the National Alliance for Caregiving and Evercare®. The findings clearly indicate that the health of family caregivers is deteriorating as a result of the combination of their caregiving responsibilities and not taking care of their own health needs.
Over the last four years, I have observed and spoken to hundreds of family caregivers. And no matter whether the caregiver was helping a spouse, parent, child, sibling or friend or whether the situation was life threatening or a long-term chronic health condition, the single most consistent finding was that family caregivers put taking care of their own physical and emotional well-being last. While this is understandable, it shouldn't be considered a fait accompli.
You need to be your top priority! OK, stop rolling your eyes. I understand the demands on you and your time. But I also can tell you firsthand that you will always be able to find a reason not to focus on your own healthcare.
There are nearly 50 million family caregivers in the United States who, in some way, deal with similar problems and feelings. Sharing with one another our caregiving experiences, anxieties, fears, joys, successes and, yes, even failures is a wonderful way to help ourselves while helping others. Remember, gaining control of your health needs and taking care of yourself will not only be terrific for you personally, it also will make you a better family caregiver for a person you love.
I greatly look forward to hearing from you. Your thoughts and opinions are invaluable. Be well, and many thanks.
Comments
Help for Barb...and others
What you are describing, Barb, is not unique to you and your mother's situation. It is quite common for a person caring for a loved one with dementia or Alzheimer's to become depressed and deal with that depression in a way that brings comfort or escape--the use of food, in your case. Don't feel badly about your actions; the stress from caring for someone in this condition is enormous.
But, although you shouldn't beat yourself up, you should find a way to express your anger, anxiety, distress and depression in a way that will benefit you. Try reading our article, Strength in Numbers, to start. Then try to find a support group, either through your physician, the local hospital, your church or other community group. If you need more help finding local support, try contacting www.eldercare.gov or your state's department on aging.
Good luck to you, Barb. Remember that what your friends and acquaintances at work and church see is true. You are strong, positive and mentally healthy. But you are in a situation that stretches those wonderful attributes to the limit and you should not be trying to deal with all this by yourself. Seek out a support group that you can attend in person or online, or seek out a mental-health professional who can let you talk out your issues and help guide you through them.
Wishing you all the best.
Response
Danbob, I am very sorry to hear about your wife's condition. My thoughts are with you both.
Thank you for your response. I agree with you completely. What I was trying to convey is that it's very important for a family caregiver to carve out time for himself and to ensure that, from time to time, he makes himself his first priority. This is essential for a family caregiver's physical and emotional well-being.
I can absolutely appreciate that the last thing that you want to do upon finding time for yourself is visit a doctor, and that is fine. The most important thing, however, is that you do something for you, whether it is going to the movies, reading the newspaper, meeting some friends, going for a long walk, just sitting quietly to find some peace, or anything else. Do what you need/want to do at that moment in time. You deserve this, and I would bet that your wife would be the first to agree.
Please be well. Regards, Victor
Define "Care for yourself"
I have everyone say to me, "you need to take care of yourself" but no one has yet defined that specifically. Does this mean be sure you eat, sleep and bathe, or what? My spouse has ALS and is in year 2 and the disease is progressing rapidly. Tell me, what do I do?
Defining "Care for yourself"
Susan, caring for yourself means that you can't forget to put your needs into the mix and to be sure to count yourself first. It's like what they tell you on an airplane before takeoff: "In case of loss of cabin pressure, put your oxygen mask on first before helping the person next to you." If you can't breatheâ€â€if you're not taking care of yourselfâ€â€you won't be able to care for someone else.
Yes, eating, sleeping and bathing are important, and many a caregiver will not eat properly, cannot sleep well, or does not focus on her own hygiene because of the reasonable preoccupation with the person in her care. But it goes beyond that. Make sure to see your doctor for your annual check-ups or to keep track of your own ailments so that you can stay strong. Get someone occasionally to give you a short break from your caregiving duties so that you can clear your mind. Do some simple exercises or go for a walk to help you de-stress.
All of these things and more are what "taking care of yourself" is all about. Check the articles under the "Caregiver Well-Being" tab above for some ideas on how to focus on you while you take care of your spouse. Also check out Caregiver Health and Caregiver Support advice in our "Your Questions Answered" section under the "Finding Answers" tab.
Good luck to you, and please stay in touch.
Caring for ourselves
AMEN to carving out time for ourselves! That is vital to staying strong emotionally and physically. Continually putting myself last does wear me thin.
I care for my diabetic 88-1/2-yr-old mother and my 89-yr-old father. I have lived with them for two years this month, watching the changes with some sadness and much concern. These are good days, I tell myself. When my brother relieves me, usually on Thursday and Saturday nights, and sis takes Friday nights, I want NO PLANS and NO DEMANDS on my time. I go hide at my personal residence 20 miles away, working there instead. It is difficult to even answer my phone, I want so little outside stimulation in my private, quiet world. My friends are just beginning to understand that. I volunteer at my church, playing piano nearly every Sunday. I go home to Mom and Dad on a wave of peace and serenity that comes only from God, after playing for church and a few days away from caregiving.
I find much release in playing and singing spiritual music . . . what a gift from God. Frequently, tears run freely, cleansing my eyes and releasing toxic emotions . . . better than any medicine. A good walk with my dog is also a blessing.
Caring for ourselves
I like reading everyone's comments. I am new, having just gone in search of such a forum. I have been caring for my mom and dad for about 10 years; my mom died a few years ago. My dad is an assisted living place and on anti-depressants and anti-psychotics, but he still gets very angry. He wants someone (me) to look after him 24-7, but he also wants me to work full-time outside the home. Uh, I can't do both of those, unless I get a clone, maybe?
I frankly don't know anything I could possibly do to make him happy. He doesn't like to travel, never did. It is my personal belief that he drove my mother to an early grave with his angry outbursts over nothing and his belittling ways.
He seemed angry today, that my sister, who just got a college degree, is looking for a full-time career. I guess he'd rather she be in a state prison for manufacturing meth or something.
well, I'll quit rambling now. I guess my point, if I have one, is that I feel 'stuck' in this position. I didn't want my life to be like this at near-50.
Or any other age.
Oh, and my parents knew nothing about caring for the elderly. They were working and raising a family, while older siblings looked after their own parents.
thanks for letting me vent, a bit; it helps a lot.
Venting, for Jean
What a relief, that is what it must have felt like for you to vent. It is a very important step in taking care of yourself, as is recognizing what your limitations are. Sometimes what is asked or demanded from us is impossible,but we do it anyway. I'm sure you've seen or heard this before,it is essential that you speak with someone and get some help with this process of caring for your needs, the weight of the resentment is more than any shoulder can bare..Good Luck
Dementia or Narcissism?
Hi Barb,
I just read your post - and I could have written it myself. My mother is the same way - and I have a hard time distinguishing between her dementia and her narcissism.
My mom forgets things - like where she puts her stuff or what events have happened, even recently. She asks me the same questions over and over. I can see those as dementia.
But then, too, she will ask me a question, and if she doesn't like my answer, she keeps asking me until I agree with her or I get angry and vehemently tell her "no - end of discussion", or I distract her.
She also is very good at faking things to get what she wants. She'll pretend to cry and as soon as things are going her way, she's 100% better.
And she constantly tries to check up on me to see where I am and if I'm "in for the night". (And this isn't the healthy concern, it's the meddling, controlling kind.)
Mom only recently was diagnosed with cortical atrophy (brain shrinkage) as the cause of her symptoms. She's only 66.
In the past, I have thought it was narcissism and had distanced myself from her to protect myself. Now I'm torn between not wanting to be manipulated and trying to fulfill my obligation of caring for her.
Sorry to have such a long post - but I'm new to this - and I was glad to read others' experiences in what they are dealing with.
Thanks,
Me too
New to the forum but I've been caretaking for three plus years now and I hate it, I really, really hate it. The mother I knew is nowhere to be found and I'm left with this wretch who is self centered and demanding, who knows no boundaries and who seems to want to absorb and intergrate herself totally into me and my life. I feel like I'm living with the "Borg" (???) from Star Trek -- like I'm being assimilated and absorbed into her life and have none of my own anymore. I try, I really try, but I'm beyond being the daughter and feel like the caretaker of a very, very mean and nasty victim of her disease - Parkinson's and dementia (with assorted other diagnoses added in there). My husband helps, but lately has become less likely to ignore the verbal attacks and then I'm torn, do I choose my husband or my demented, diseased mother?! I'm so confused and tired of the whole thing. Most of you sound like you have help - brothers and sisters. Mine are at a distant and offer telephone support - thanks, but how about a visit or taking her for a visit? At least my husband helps and is supportive, bless him.
Ok, I feel a little better having vented, but she's calling now, again, from the bedroom for some assistance or the same answer to the same question I just answered three minutes ago -- gotta run. Did I mention I hate this?