A Caregiver Valentine: Could Criticism of Your Dementia Care Really Be…Love?
By Paula Spencer Scott, Caring.com senior editor
Dear caregiver to someone with Alzheimer's or another dementia: I know February 14 is Valentine's Day. But I'm not going to suggest any Valentine's-themed crafts for your loved one with dementia. Nor am I going to issue reminders that someone with dementia might still appreciate a mushy hearts-and-flowers Valentine, a box of chocolates, or a bright bouquet.
Instead, I'm going to ask some questions that aren't so flowery (but full of heart): Has anyone given you a hard time about your caregiving lately? Have you been accused, say, of spending too much time taking care of one person to the exclusion of others? Of making yourself crazy? Of running yourself ragged? Of the 10 signs of caring too much?
Has anyone uttered that dreaded word burnout?
I had a fascinating conversation the other day about this touchy topic with Caring.com senior medical editor [Ken Robbins] (http://www.caring.com/authors/ken-robbins-m-d), a geriatric psychiatrist at the University of Wisconsin, who knows caregivers and their stresses well.
"It's really important to pay attention to feedback from others," he says. Too often, it seems, observations – from a partner, a child, a sibling, a best friend – that a situation is less than stellar or that the person giving care is struggling are heard the wrong way by caregivers.
The natural response: Defensiveness! Anger! Hearing fightin' words!
The better response: Consider those words to be a gift, Robbins says. "View such comments as a kindness, that someone is being kind enough to give feedback, even if it sounds critical." And then, he adds: "Accept what you hear at face value and ask yourself what the person must have seen in order to say that."
I know it goes against basic instinct to think of reproach as a gift – especially when you're working so hard (not to mention being deserving of those chocolates and roses yourself!). But Ken's right. Actually the intervention of others can be a kind of double gift:
- The person cares enough about you to want to help, and this is a first step.
- By heeding their words, and thinking hard about whether there's a kernel of truth there (and if so, what you might do about it) you're also giving yourself the important gift of *self care."
So listen. Act. Be extra sweet to yourself, especially this Valentine's Day. I hope you get (and give) some hugs and kisses, too.
Bless you! "not myself" there is a real blessing I received from caregiving, it shows you who your real friends really are, how I am approached by people show their real character, I am single, it makes it so easy to weed out the real men, caring for my father is only a season, but it has made me tougher, stronger, more resourceful, and helped me really sort what is important to me, (on the neg side I have gained 40 pounds, my b/p is up, I have never cried so much in my whole life or laughed either)(oh well!) Caregiving seems to strip all of us of all pretensions, you can't fake anything, nor can those around you. It's a serious business, and I truly think God's work. I may have to put my father in a nursing home, but it's not time yet. It feels good to discuss these things in a safe place with understanding people. Thank you, you are my safe presure release. As I write this my father sits at the same table, surrounded by his dogs, clueless to what I am doing, he calls my laptop "your thing" And this is the new life that me and him have created, its not perfect, but it's our life.
Oreoo, Thank you for saying so well what I was trying to! I have a family member who said, long ago, "I am not comfortable with old people--please don't ever ask me to help take care of them, as I was never consulted as to their moving to town. I was not, myself, in town then, and understood his right to his feelings. Now I am here "in town", my parents live with my husband and me. Said family member suggested that for my own sake and my husband's, I should move them to a care facility. I said that I couldn't imagine doing that--not at this point, anyway. After a few moments of discussion, came the dawn! I asked "Is this all about YOUR guilt? If so, keep in mind that I rarely ask anything of you, and when I do, it is the absolute minimum. I understand your feelings; I always have. Please just don't lay them on me. Think of it this way if you like: It helps pay the rent, so I do it for the money (SOOOO not true, but wth)." Response? Dead silence. Then . . . "maybe that's true. Forget I mentioned it." Phew. Who needs it?
ditto, sometimes the well meaning (I truly question that at times) comments and remarks are as devastating and stressful and do more harm to my mental stability than the caregiving stress its self. It would really help me if I could talk and they could really listen and care, but it flares up old issues, makes them feel quilty, so they filp the tables so that either my problems are of my own doing because I am not doing things right, or I am told that I am completely in the wrong and should just throw my father into the nursing home because I am keeping him for my own selfish reasons(??????), so I can avoid living my life. (???????) Whew!!!..... I beter stop, I am feeling unhealthy, unproductive resentment leaking out, I try to avoid this as much as possible, because I found it was only destroying me. Thank you very much for this site, I would find it very hard to continue without it. It helps to know I am not alone. Kisses and Hugs to everyone, a pre valentines day warm up.
Ok--too funny Paula! May you live to be 300 years old. I have, in fact, a stock weapon I whip out as necessary--I simply say: It's fine. It helps pay the rent." Usually leaves them cold in their tracks. They figure, I'm fairly certain, that I'm either a)incredibly $ oriented, or b)flat broke. Either way, they saddle up and ride out fairly quickly. Back to the keyboard, Paula. Need you here!
Great point...I should have emphasized that well-intentioned criticism *can be* a form of love, but as you point out, critical feedback comes in many forms and from many motivations. A good response to any such words is 1) not to let it get under your skin (who needs that?!) and 2) to ask, "So what do you suggest?" -- you might hear something useful, or you might turn the tables and help the other person see how hard your choices are. Or you might even get help...maybe! Anyway I'm glad that you didn't keel over so you can keep chiming in!
Paula, I'm about to drop dead in my tracks for finding that you've written something with which I take issue! Stop the presses and hold the phone--yikes! Here it is: Sometimes--maybe not often, but certainly sometimes, what I will call the "criticism" you mention, is pure guilt, in a VERY loud voice. I have found that family members who do not wish to be involved will often offer a good deal of commentary for "your own sake." NOT!! Often, there is a faction in a family that feels far more comfortable knowing that if each person tosses in X dollars per month, they are done. Finished. Obligation met. It is very difficult to explain to these family members that you are not asking anything of them (although it is beyond me that a monthly phone call is "too much to ask."), and that it is just, and only, exactly what it is. You see something that needs to be done. You are in a position to do it. You do it. Is it great to have family jump in and lend a hand? Absolutely. Is it essential? Naah. As a caregiver, I don't resent that--in fact, I thoroughly understand it. But make no mistake--there is a great deal of criticism that is not constructive. It is defensive. Worse, it can be harmful. I have had to, time and time again, explain that I am NOT grateful for someone to step in and say "Hey! take a week! I'll stay in your house and take care of our parents!" I have no money for a vacation. I'm too "post-op" right now to travel. On and on. Point: ASK ME what they (our parents) need. If you're looking out for me, ask me what I need. Cheap psychoanalyses are a dime a dozen. True understanding and empathy are rare. No, I don't trust those who are looking on from the outside (save one or two, who KNOW). On the other hand--thank you! I was starting to think you were so astute as to be beyond human! Phew! Keep writing, and I'll keep reading.
Hugs donoharm