Page Utilities
Suzanne Geffen Mintz, Capital Books (page 6 of 8) Page 6 of 8
Since becoming a family caregiver, have you done any financial or legal planning, or even sought advice about these issues? Have you evaluated your finances to see if there is any way you can afford to pay for even a little bit of help? Have you tried to find out if your family is eligible for free or lowcost services through local, state, or national programs? Does your loved one have a will and a living will? Do you? Do you know what Medicare does and does not cover, or, if your care recipient is under sixty-five, what your private insurance will pay for? Are you aware of what might happen as your sister's condition deteriorates, and have you at least thought about what that might mean in terms of her ability to continue living on her own? Have you considered the possibility that you could have an accident or get sick? I know we never think anything is going to happen to us, but what if it did? I wear a family caregiver medical ID that tells emergency personnel that I care for my husband Steven and he will need help. It has given me such a sense of peace and also empowerment I never would have believed possible. Information on medical IDs for family caregivers can be found on the last page of this book. It is amazing how many questions arise when you begin to think "what if."
I am positioning myself professionally to be able to work from home and earn the same, if not more income, if it should become necessary.
—T. Mikki Crawford, Silver Spring, MD
If anything should happen to me, what happens to my husband?
—Sonia J. F. East, Copper Hill, VA
I had dinner with a colleague from out of town who was moving to the DC area. Chuck confided to me that his wife had a degenerative brain disorder that was currently affecting her mobility and fine motor skills, so it was important to him to find a house that was either all on one level, or at a minimum had the master bedroom and bathroom on the entry floor. He wasn't sure if his wife would ever lose her ability to climb stairs, but he thought it foolhardy to look for a home that wouldn't be able to easily accommodate his wife's longterm needs. Chuck was being realistic about the future that he and his wife could possibly face, and he was taking that potential future into account when making a long-term housing investment. He was planning, not that she would definitely be unable to walk, but for "what if."
As Chuck told me this, it brought back memories of when Steven and I went looking for our current home. It was in 1987 and although Steven definitely had mobility problems he was still able to negotiate stairs. Despite that, we did exactly what Chuck and his wife did. We thought it a realistic possibility that Steven wouldn't be able to climb stairs at some point in the future and so we only looked at one-story homes. In fact, we went on our search with a very specific accessibility checklist in hand. It included a shower stall in the master bedroom, easy access to the backyard and a garage that had, or could have, an automatic garage-door opener. The house we bought didn't meet all the criteria on our checklist, but it met most of them. Over the years we made some changes to accommodate Steven's growing disability, and although some of them required a bit of ingenuity they were all doable, because of the basic properties of the house we bought. By 2003, however we were looking at a major renovation if we wanted to stay in the house. Our typical five-by-eight bathrooms were just too small to accommodate the realities of power wheelchairs and decreased dexterity.
None of us can plan for all of life's possibilities, but we can definitely plan for some of them. I know from experience how emotionally difficult it is to look ahead toward what your caregiving might entail in the future. Nevertheless, it is very prudent to do some forecasting because if you don't, your life may well be filled with many more crises than it needs to be. Being part of a caregiving family is hard enough as it is. There's no point in making it harder than it has to be. Planning for the future can help put you in the driver's seat of life and also help ward off situations that make you feel dependent.
At each step we have tried to anticipate the next problem dad would be facing. . . . In talking with dad's doctor about what to expect, we were plugged into hospice early. . . . This forward thinking has helped us not have to scramble and has helped us be mentally prepared as changes occurred.
—Lois Finnan, Newburgh, IN
It's been said that Americans are the only people on the face of the earth who think death is negotiable. I don't know if that's true, but I do know that we have a very hard time talking about death and therefore planning for it. That's the one thing we can, and should, all do, even if caregiving wasn't part of our lives.
Some years ago I had the wonderful opportunity to play a leading role in an extraordinary public education campaign to change the way Americans think about, and deal with, end-of-life issues. The program, Last Acts, was a multimillion-dollar effort funded by the Robert Wood Johnson Foundation, one of our nation's leading philanthropic organizations focused on healthcare issues.
Last Acts created a quiet revolution that changed the way physicians manage pain. It raised the public's awareness of end-of-life issues by working with Hollywood producers to include end-of-life scenarios in major TV shows, such as ER. And it taught us that death is a natural part of life that we can and should plan for, and that although it is not pleasant, a family can experience it in a calm and loving way. You may think this is morbid, but in fact it is one of the most life-affirming things you can do. What a great gift to allow someone you love to end their life on their own terms.
We only need to think of the Terri Schiavo case to recall what can happen when your wishes are not known and documented.
Caregiving Skills
I have learned to insert/remove the catheter to remove blood clots and relieve my father's pain quickly. I no longer have to call the doctor or take him to the hospital for this.
—Jane Hedrick, Jenks, OH
From A Family Caregiver Speaks Up: It Doesn't Have to Be This Hard by Suzanne Geffen Mintz, Chapter 4 "Building Confidence and Capabilities: Making Choices, Taking Charge." Capital Books, Inc., 2007. Reprinted with permission. All rights reserved. www.capital-books.com.
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