So Who Are You?
By Paula Spencer Scott, Caring.com senior editor
This is going to sound so basic it borders on the insulting, so please know right off that I mean it purely helpfully: How do you define yourself? Wife, husband, mother, father, daughter, son, grandchild, employee, congregant, friend, neighbor?
Caregiver?
The word caregiver is problematic to a lot of people, even those in the caregiving trenches, including the good people behind this site. In its strictest definition – one who gives care to another – caregiver is a brilliant word, an apt word. We use it often at Caring.com for lack of an equally concise description. We use it ruefully, sometimes, because we know for many of you there's still a bit of a "who? me?" disconnect about the word.
Many of us don't think of ourselves as caregivers, even when we're living the definition.
Is an adult child worried about a parent who lives 3,000 miles away a caregiver? Is a spouse carrying out the conjugal duties of "in sickness and in health" a caregiver? Does inviting Grandma or Dad to come live with you make you a caregiver? What about driving Mom to doctor's appointments and calling everyday to check up on her?
Yes, yes, yes, and yes –- you're giving care, you're a caregiver.
It's not mere semantics. Turns out that owning the word, in whichever of its many styles and sizes fits you, can be an important part of your mental health.
I "got" the truth of this sitting at a panel at the Aging in America conference in Chicago recently, the annual event co-sponsored by the American Society on Aging and the National Council on Aging. Aging program specialist Mary Brintnall-Peterson of MBP Consulting, a professor emeritus at the University of Wisconsin-Extension, has worked with family caregivers for years and helped to develop [T-CARE] (http://www4.uwm.edu/tcare) (T for tailored), a new system professionals can use to assess caregivers and give them great individualized care-management support, which is now being tested in four states.
Turns out its starting place to help family caregivers is to assess how they see themselves, she says. Rhonda Montgomery, a professor of applied gerontology at the University of Wisconsin-Milwaukee, who was also on the panel, has defined "caregiver identity change theory" – the idea that taking care of an aging loved one involves a gradual change in identity, from your original family role as spouse or daughter or whatever, to caregiver.
Your identity, it turns out, affects your stress level.
It works like this: If you think of yourself one way ("I'm just being a dutiful daughter," "I'm my husband's wife) but you're functioning another way (increasingly as a hands-on caregiver), there's a disconnect. "If you think of yourself as maybe one-quarter a caregiver, but you're functioning as a halftime caregiver, that equals stress," Brintnall-Peterson says. "You don't have a playbook for Caregiving, because you're focused on Wife. You feel uncomfortable without realizing why."
The rules in your head about your role no longer match the behaviors of your changing everyday life. This varies by situation. A wife may feel comfortable bathing her husband, because it's intimate and spouse-like, but for an adult daughter, bathing Dad is a stressor. For her, there's an identity discrepancy. To reduce her stress, she either needs to hire someone else to do the bathing or change the identity role in her head: I'm Dad's caregiver, and it's okay for a daughter to bathe her dad in that circumstance."
It's a subtle shift in thinking but holds big potential payoffs. "It's not what you're doing, it's how you feel about what you're doing that causes stress," Brintnall-Peterson says. And how you feel about what you're doing is dictated in part by what seems right or appropriate to your relationship.
Why are caregivers so reluctant to adopt the mantle of "caregiver"? In part, I think, it's because this new identity is unexpected, unwanted, and scary. Thinking of yourself as a "caregiver" makes your loved one, in turn, a "care recipient," also a new identity. We'd much rather cling to our vision of him or her as Sweetheart, Dad, Mom, Gran -- and for as long as possible.
Of course, owning up to the reality of this shift usually means we can get the person better help and care, faster. (I'm thinking especially about dementia, a situation where denial and under-diagnosis is rampant, yet early care can be quality-of-life-changing.)
And owning up to a label – caregiver -- that we may be ignoring or oblivious to, even though we're already living it, means we can take a giant leap toward serving our own needs better, too. Less feeling conflicted. Better able to find the right solutions. Putting a name on what you're doing is empowering, too, because you can connect more readily with others who've been forced to add a new role to their cherished old ones -- and there's nothing for stress-reduction like some like-minded [support] (http://www.caring.com/forums).
Our Lord will bless each one of you who have the "hands on" day to day responsibilities of a caregiver of a loved one. To even consider the comparison of this to a simple phone call on occasion, or even daily, is simply foolish. Phone calls are nice, yes, but 24/7 is a responsibility like no other. You never really can "clock out" physically or mentally. I have found that being a caregiver has the blessing of no regrets when the end comes for the patient. Nonetheless, it is only human to experience feelings of anger when siblings breeze in and pretend they are doing as much as you are, or have quick, simple solutions to your problems with the patient, yet do not offer to lend a hand to allow you a weekend off with your spouse or family.
how about "care daughter" or "care son"
sbean, great point, that there are shades of grey within the word "caregiver." I often use "primary caregiver" or "hands-on caregiver" (or of course "spousal caregiver") to make the distinction between those who are the 24-hour main point person and the caring others in the caregiving orbit. As you rightly point out, every family's dynamics are different. A good opportunity to create a new lexicon? (like Jeneration's "professional daughter"). Other suggestions??
I have to agree with sbean about phone calls equalling caregiver. It does show you care but being a caregiver requires a hands on experience. While my mother was ill, I called everyday to check on her but could not visit due to my own health at the time. Once I finished with chemo and radiation, I flew to Florida and became my parent's caregiver. Although my mother passed away 3 months later, my father was in even worse shape. It was only then that I discovered he had alzheimer's diesease. He's been living with my husband (who is also disabled) and I for 3 years now. The man I once called my father is now long dead and this empty shell remains. It's hard work and patience can grow a little thin at times, but God gives me strength. God bless you all and continue to hold strong!
Hugs Jeneration
sbean - I am sorry your siblings are not more support to you. I on the other hand do not have that issue because I have no siblings. It just seems to me, that all any of us can do is the best we can do, and if all they can do is call - so be it. I would hesitate to think that any of them would consider themselves "caregivers" in any sense of the word, and if they do not let you know how great they think you are, and how blessed they are that you're able to do the work you do for your Mom, that is their problem :) Know that God chooses for us, we have little say in the matter .. so stay strong and realize what an enormous blessing you are to your Mom.
I love this site and visit as often as I can for advice and support. I identified with the viewpoint presented in this article. However, one point made my blood boil. By way of explanation... My 87 year old mother came to live with me after my fathers passing. This occured 10 days after we had become empty nesters. So, careiving has been my thing for as long as I can remember. I have always been designated as the family caregiver which now comes with a whole set of resentments with my 4 uninvolved siblings. I take exception to classifying a person a caregiver that lives 3000 miles away and places a telephone call. My siblings also believe they do all they can putting out this minimal effort. I know that I am not alone in this situation. Let's put our heads together and find an accurate descriptive term for those of us that are devoting our lives 24/7 to our loved ones. It is unfair and inaccurate to lump us into the same category as a once a month call by someone that might be worrying.
Hugs JOYFUL9574
I have been a caregiver of sorts since a small child. My parent had MD and we cared for her and did the house hold duties as well as common duties of a nurses aide; then right after marriage we had a beautiful daughter born with mild CP, I am so thankful it is not a worse situation;but this was another form of caregiving with physical and verbal exercises all through her youth, as well as peer injustices and school official's ignorance. Still now helping with day to day decisions(in her 40's today) as it seems a certain group of people in this world prey on this type of individual. Then after she grew up and married she could not care for her baby, my spouse and I were given authority by the courts and her and her husband to raise the child. During this period I was also soley responsible for the parent in the nursing home who had MD. I was frequently depressed and frustrated by the time consuming duties of ordering medications, very frequent visits, demands, and other duties associated with caring for a paralyzed parent. Without my strong faith, a wonderful, caring spouse, and an understanding clinical phsycologist I would have been in the looney bin somewhere! Now I visit and give communion to a relative who is in her 90's and feel company and daily checking on is a form of caregiving. It is mentally tiring and physically tiring to fulfil these moral obligations but the knowledge that I have done the right thing generally makes up for any short term regrets that pop into my head occasionally.
Excellent. I found this so helpful. And very timely for my situation. I brought my mother to live with me about five years ago. She really was doing well but would not have been okay alone. I was moving and would no longer be able to stop by on a daily basis as I had been doing. Mom is now 93 and although, physically she is quite healthy, I have been watching and struggling with her mental decline. Just recently talked to her primary care physician and after some further testing, put the dreaded name on it and she is starting some medication. I have struggled with knowing how to help my siblings wrap their minds around this. When they don't see her as often and Mom, social person that she is, always manages to pull her best self forward for them, they are not really prepared. I will definitely use this sight as a resource for them. You have certainly been that for me. Thanks so much.
Very good article, thank you! I've been full time and only caregiver to my parents now for 1.5 yrs. Following an accident, my then 88 yr old dad needs help with pretty much everything. I think of him in terms of semi invalid, with his sense of humor in tact! We got over the modesty issues while he was still in his 2 month hospital stay, and I've been his 'nurse' since we brought him home. I guess I think of myself as a "professional daughter"! This helps me cope with having put some things on hold for me, and fits since I deal with all issues related to his health and care. Love and prayers of blessing go to everyone who is in a care-giving role, no matter what the situation. Finding local resources and staying on top of situations that come up help to keep you to the positive side of the experience.