Imagine a GPS that guides you easily along a road for hundreds of miles, then suddenly the voice command blurts out, "Turn left...No turn right! Make a U-turn. Stop! Go!" You'd feel pretty frazzled, right? Well, that's what caregiving is often like, particularly for those who are caught off guard. In fact, unexpected twists and turns are part of the journey. It's just a matter of recognizing your "new normal" as a family caregiver. Whether you are new to this series or just joining, I have discussed first spotting signs that your parent's health may be declining, then putting a care plan in place, and now comes the acceptance of your new life -- the new "normal."
My dad turned 86 a couple of months ago. He had been doing quite well in the nursing home where he's lived for four years. His dementia wasn't getting any worse and his mood was mostly cheerful and content. Then two weeks ago, I got a call that Dad was in the hospital following chest pains. My husband, three children and I dropped everything and made the two-hour trip to Western Massachusetts, where Dad was in intensive care. He had just "ruled in for an MI." In other words, he had a heart attack.
The next two weeks were a whirlwind of good and bad news (mostly bad). Initially Dad's health improved and he was discharged back to the nursing home. Less than a week later he was readmitted for nausea and vomiting. Then my mom got the flu. Then Dad's medications somehow got mixed up and he didn't get his new heart medicine. Then his blood pressure shot up. Days later it stabilized but the blood thinner levels were off. And so it went.
We've been down this road before, as have many other seniors' children and grandchildren. Miraculously, my father has made it, despite some pretty close calls. If you're going through something like this, you're not alone. Here are some of the things I've learned about coping with the new normal of caregiving:
1) Expect the unexpected. Just when you think you know the prognosis, the routine, the choices -- something you couldn't have anticipated happens. Find ways to respond, and keep moving.
2) Never say never. Don't promise Mom that you will never put her in a nursing home. It may be the safest and best option one day.
3) It's OK and "normal" to get angry and frustrated. You need to find a safe outlet to express negative, pent up feelings. Talk to a friend, join a support group or get professional help.
4) Get on the same page with your siblings. Forget that your sister's college tuition was paid by Mom and Dad while you were saddled with student loans. Focus on how to plan for Dad's care. Let go of the old hurts (or put them in a box for another time if you can't totally let go).
5) Communicate with your children. In an age-appropriate way, tell them what's happening with Grandma or Grandpa. Let them know that you need their understanding, and find ways to include them in the caregiving responsibilities.
6) Put yourself on the "to do" list. Don't ignore your body's messages. Headaches, insomnia, bitchiness, weight gain (or loss) can be subtle messages that it is time to take better care of your own needs.
During the time your loved one does require your care and intervention, it's important to stay grounded in the present. This means staying positive. And I know that can seem unfathomable at times. You will have "moments," we all do. But afterwards, take another "moment" to try to learn something about why this particular experience became so frustrating, stressful or overwhelming -- and change your mind set for the next time around. The most frustrating thing about this journey (and it is a journey) is that you can't do anything about your parent's aging process; you can only change your approach.
So whether you are currently a caregiver or are just starting out, the first step is to truly feel that this state of caregiving is an opportunity, and not a burden. Yes, you might be remote. Yes, you should hire helpers and call in reinforcements (housekeepers, transportation help, food prep, safety monitors, in-home care, sibling and neighborly assistance). And you should be giving yourself "respite" breaks as often as possible so that your life and your job remain in balance, as much as possible.
So what's the opportunity? Find the joy. It might even help you see life in a whole new way.