Page Utilities
Suzanne Geffen Mintz, Capital Books (page 5 of 8) Page 5 of 8
Medical Information Form for Steven Mintz
Care Issues (con't.): He cannot transfer on his own. To get him onto a
hospital bed or
gurney, two people are needed,
one to pick him up under his arms
and the other to lift him beneath the knees.
Mr. Mintz's fine-motor skills are
greatly impaired. It is best to assume
that he cannot manipulate
anything on his own, except perhaps
the emergency buzzer.
Our experience is that after a hospital
stay, Mr. Mintz is temporarily
more disabled than he was at admission.
Home-care assistance is
definitely needed to help him with ADLs.
Doctors Names and Phone Numbers:
Primary: XXXXX/XXX-XXX-XXXX
Specialists: XXXXX/XXX-XXX-XXXX
On-going Medication: Name, amount, dosage, special instructions
(e.g. Lipitor, 10 mg, once a day, in the evening)
Call in an Emergency: Suzanne Mintz
Relationship: Wife
Phone numbers: Work, Home, Cell
Documents: Mr. Mintz has a Living Will.
Mr. Mintz has a Medical Power
of Attorney designating Mrs.
Mintz as his surrogate when necessary.
Note the detail under "Care Issues." You'd be surprised how little doctors, and even nurses understand about the limits of people with disabilities, which are compounded when they are ill.
Being prepared to work within the system, or being aware of what you will face if you try to buck it, is important information to have so that you are on a level playing field with the professionals with whom you need to interact. There's nothing more unnerving or confidence deflating than to believe you are the only actor in a drama who hasn't seen the script, and if you think about it, that is exactly your situation in healthcare settings. Everyone you will meet has been trained and, in most cases, licensed or certified to do their job. They are familiar with the procedures and rules. You and your care recipient are the only ones working in the dark. That being the case, the more questions you can ask, the more organized you can be, and the more you act like a healthcare advocate, the more confidence and control you will have over your caregiving circumstance. Information on planning a doctor's office visit and other practical tips on interacting with the healthcare system can be found in the appendix.
Peer Knowledge
By doing research, I also have found other people willing to share their specific experiences, and I know that I am not alone. I have found that I am also able to help other people by sharing the knowledge that I have acquired.
—Judy Horner, Boardman, OH
Some of the best research you can do involves talking to other family caregivers. Learning from those who are somewhat farther along in their journey than you and your loved one, or have actually completed it, can save you countless hours of effort and provide you with very concrete and practical advice.
There are many products and services available to help caregiving families but most of us don't know what they all are or where to find them, and there's no one place to go that has all the answers. Developing friendships with other family caregivers, caregiving families, or people with disabilities can enhance your ability to find what you need.
My friend Joan isn't a family caregiver. She is a person with a disability and she lives on her own. Joan has a very bad case of rheumatoid arthritis. She has had to revamp her entire life because of her illness and therefore she has searched out and found many products to help make her life easier. Although her illness is very different than Steven's, they have some of the same problems. Joan has a hard time picking up a glass because her fingers are so curled and inflexible.
Steven has a hard time picking up a glass because his hands are weak, his fingers are no longer nimble and he has little sensation in them. Joan told us about these extra long straws that she uses. They can be easily cut to whatever length necessary to meet your particular needs. She gave Steven one to try and told us how to get them if we were interested. We find them so helpful that we even keep some in the backpack that we take with us whenever we go out. These straws provide a very simple solution to what is actually a rather big problem, but we never would have known they existed if it wasn't for Joan. Sure, we may have come upon them if we went on a search for a product to help Steven drink from a glass more easily, but we hadn't yet begun to do that, and how much nicer to have a product be recommended by a friend who already knows that it works.
If the shoe were on the other foot, if we knew about the straws and thought they might be beneficial to Joan, we would have told her about them. When we find a superior product or service, Steven and I jump at the chance to share our finding with others. It's part of the unspoken bond that those of us outside the norm make to help each other maintain as much normalcy and independence as possible. So don't hesitate for a second to ask other caregivers or someone you might know who has a disability if they know a physical therapist they swear by, or if they know of a product that makes it easier for a person with limited mobility to get in and out of a car. It might just save you a lot of time, and effort, and anguish.
Doing research, all kinds of research, is definitely one of the ways you can begin to gain some control over your caregiving situation and improve your own sense of confidence and competency in the bargain. If research isn't your forte, if it seems beyond you regardless of the medium being used, or if you just don't have the time, is there someone else in your family, or is there a friend or colleague, or a member of your congregation who can do it for you? Don't think you have to do everything yourself. Learning to be a manager, to delegate tasks, can help you feel more in control. Thinking of alternatives when roadblocks are put up in front of you is yet another way to begin to take charge of your life. It is a proactive approach to problem solving.
Planning
If you have a plan, you can enjoy what you have at the moment without as many distracting fears about the future.
—Victoria Kellerman, Parkville, MD
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.
See All TBI Topics