While researching a chronic health condition that I have, I came across this list of basic rights for people with chronic pain. (This is from the American Chronic Pain Association.) I thought it was a wonderful list of rights for caregivers, too.
"You have the same basic rights that you grant to others. You have the right to:
· Act in a way that promotes dignity and self-respect. · Be treated with respect. · Make mistakes. · Do less than you are humanly capable of doing. · Change your mind. · Ask for what you want. · Take time to slow down and think before you act. · Ask for information. · Ask for help or assistance. · Feel good about yourself. · Disagree. · Not have to explain everything you do and think. · Say "no" and not feel guilty. · Ask why. · Be listened to and taken seriously when expressing your feelings. · Read and reread these rights so that you not only know them by heart, but so that they become part of your daily life."
The one that really jumped out at me was: YOU HAVE THE RIGHT TO DO LESS THAN YOU ARE HUMANLY CAPABLE OF DOING.
As a caregiver, most of the time I feel like if I'm not doing everything all the time to the limit of my ability, I'm not trying hard enough. Unfortunately, after over 11 years of caregiving, my ability is getting smaller and smaller. But the idea that I have the right to do LESS than I'm humanly capable of doing seems quite revolutionary. This seems the basis for a wonderful new year's resolution. I think I'm going to write that one sentence on a card and hang it over my desk. Maybe I'll put one on the mirror in my bathroom, too, and hang one on the closet door... Most of all, I'm going to try to start putting that idea into practice.
elizabeth* 9/2/14 I love the "Do less than you are humanly capable of doing" and the "Say 'no' and not feel guilty." With DH it was just 110% full-out care all the time. I just put myself on the back burner and especially in the last months, from when he went on Hospice 5/10/14 until the day he died on 9/2/14, it was so totally about him. Now that he's gone, I'm finding it hard to find my feet and figure out what new directions my life will take. DD, s-i-l and the grands have a lot of needs, and I'm finding it tricky to set boundaries..but will figure this all out this year, while I'm deciding whether to go back to NY or stay in the Heartland. But it is just amazing how much better I feel physically without all the hands-on care of DH and the years of sleep deprivation. I'm still tired, but getting a good night's sleep every night, napping in the afternoon a little, and getting that walk in the park every single day just seems like I'm living in my own private luxury spa. I can't believe any of us actually survive the caregiving. How do we do it? Being an Alzheimer's caregiver is really and truly like being abused. We want to do it, we have to do it, but it is a real killer.
Hang on to the idea and truth that you have rights. Hang on to self respect while doing this tremendously hard thing. Realize that you've come this far and can make it Howl at the moon when being tortured is too much. Remember that style points aren't given out and everybody makes mistakes. In the face of real abuse defend yourself. Remember this is horrible for them especially early Understand the caregiver suffers the most not the victim when all is weighed. Take your anger out on guilt. Guilt is the scavenger that moves in. Kill it. Don't worry about bad feelings too much. You'll need feelings later. Learn the hardest part isn't surviving this - it's coming back again. Allow yourself the right to react to harsh and prolonged duress. Allow yourself the right to live when you are finished sacrificing. Keep some memories alive and let them be a light in the window. Remember what your partner would have wanted for you to have afterwards. Realize you've earned whatever you can get in every way that counts. Find a path to wanting things in life again where this is the hardest part of all for most.
If I could write myself into a happy state sitting on the patio of my villa on the riviera being served lunch then I would rock.
I live by that pretty much by which I mean I flop around like a fish resisting everything dramatically while some overbearing mother thing inside pulls me by the ears to one of them. "Read!" it demands. "I'm the one who counts." I read grudgingly. "Now go out and have fun!" it yells and goes back into the whatever.
I re-did Dante's Inferno into a carnival fun house. All the levels and added lounges and bathrooms. There weren't any. There was only all the levels of this creeps brooding fears and frankly overdone tortures. Burning in hades for eternity is really bad physics and looking at God's universe it's crystal clear it's uniform good physics in actual reality. But what can you do with people who watch the ships go out further and steadily disappear from the bottom up until only the top of the mast is showing and then have the reverse happen every single time when they come back and nobody catches on that the same thing happens when someone goes over a hill until you can just see their hat and then comes back.
The only sane person was Don Quixote who realized the true evil is windmills. Go tilt at them tiger.
Being in my mind is a lot like hanging on to a tiger's tail. Stay tuned for my new book: Kill Guilt! Where Rosemarie does have the cherry cheesecake because over the last six thousand years and the next six thousand years that's going to matter.
Are we the only couple who never had the discussion about lives after a spouse died? It never occurred to me (or us) to talk about life after one of us died. I always assumed I would die first because his family lives into their 90's and mine doesn't and I knew he would want to be in another relationship.
Thanks Wolf. Exactly "it never occurred to me that anything would happen this early or that it would be me that would need to go on." We were in the "prime of our lives."