Remember being blindfolded and spun around the first time you played Pin the Tail on the Donkey? It’s pretty scary stuff being blinded and disoriented in a strange room — floundering about having no idea of where you are or where you are going. You’re unfamiliar with the room, so you’re not sure what obstacles might be there, let alone where they might be. Since you’ve never played before, you aren’t quite sure what’s expected of you. It’s really quite unsettling. People are watching and evaluating your every move. Some might be mean and trip or push you, because that’s just who they are. Others might unintentionally do things that distract you, causing you to falter. Others might try to be helpful. They might make a lot of noise to guide you. You might hear them say: “go to the left, go forward, go right,” but that makes it even harder to find, and to keep, your bearings. You may stumble and fall, but you do everything in your power to hold onto that tail — the one with the dangerous pin sticking out of it. You wish this would just hurry up and be over!
That’s what caregiving is like — except the stakes are much higher and there isn’t a nice prize at the end.
But remember that nice thing which happened when you played Pin the Tail on the Donkey? Somebody came along and took your hand, and they led you to where you needed to be. Remember how that felt? You were no longer alone. Somebody remembered what it was like when they first entered the game, and they understood what you were going through. Suddenly you felt safer and everything felt better with this reassurance, guidance and direction. Six caregiving wives and I share our experiences to do just that for you in The Caregiving Wife’s Handbook. Get a few of their best tips here:
Giving permission for self care is the hardest step for caregivers. And the six wives were no exception. Like other caregivers, they couldn’t/wouldn’t do it for themselves, but would to be better caregivers. They each devised ways that worked given their finances and freedom. Let their creative ideas inspire you.
Utilize respite. Tina’s husband, Tom, suffers from dementia. Giving him loving care totally drains her. To recover, she takes a month-long visit to her family in Argentina. She tells friends and family that “if Tom dies while I’m away, don’t call me. Just put him on ice and I’ll take care of it when I get home.” And she’s serious! In order to protect her own health, she’s willing to risk criticism from everybody.
Do simple things. Cathy doesn’t have much money or a car, so she takes relaxing walks in her neighborhood. She enjoys “inner” vacations as she chants, meditates, reads and does affirmations while her husband, Craig, sleeps. She escapes into herself in healthy ways. If the house isn’t perfect for visitors, she says they can clean it themselves! Children and grandchildren descend on the house expecting to be entertained and fed, but if they don’t bring and prepare their own food, they don’t get to eat.
Use what’s in your neighborhood. Susan’s husband, Sam, is dying of cancer. She does “shop therapy” to get her out of the house and into those beautiful havens called shopping malls. Shop therapy may be as simple as buying something at a flea market or dollar store because getting something new gives the feeling that there is a future. Neighborhood churches provide another free source of uplifting beauty.
Stay socially involved. This is how Mary cares for herself while Mark is dying of Parkinson’s. He is able to care for himself long enough for her to lunch with friends, which she does despite criticism from some. If she doesn’t attend to her social life, she won’t have one after he dies. She is simply preparing for her future.
Get help and enjoy your friends. Fran, a teacher, cares for Frank, who is dying of emphysema. She arranges to have one of their children stay with him one Saturday a month and one evening a month so she can go out with co-workers. She shares immediate concerns with co-workers during class breaks.
Have fun and get rest. Joe has been struggling with Parkinson’s for many years. Jean arranged for a neighbor to stay with him while she went to a jazz club one night every week. She also had someone come one entire night each week so she could take a sleeping pill and get a good night’s sleep.
Know that his journey and your journey are not one and the same. You’ve got different things for which to prepare, so don’t get lost on his path. Don’t be afraid to ask for help. Take the hands that are held out to guide you on your journey with strategies, tools, and resources in The Caregiving Wife’s Handbook.