Not long ago, after we got home from taking my very thin and frail father to one of his medical appointments, Bill postponed our customary debriefing session to take a quick trip to the Safeway for ice cream. Of course it was chocolate.
By the time he got home, I was wondering if we caregivers can get a rough idea of our own stress levels by noticing things like ice cream runs or the incidence of lost car keys. We tossed this idea around for awhile, and here is the result:
The Family Caregiver Desperation Scale ©
1. You have a feeling of optimism and a strong sense of resolve to make things better for your loved one. You do not recognize that these feelings have already placed you on the lowest level of The Family Caregiver Desperation Scale.
2. You are certain that you have new, creative idea that just might make a significant impact on your loved one’s well being. You know without a doubt that if you can only come up with the perfect activity, electronic gadget or subscription, things will change dramatically for the better.
3. You find yourself reluctant to think about caregiving at all. Whenever your mind turns to your loved one, it seems to just bounce away to another unrelated subject—the kitchen cupboards are a mess, you need a manicure, or you really should change the oil in your motorcycle.
4. You are beginning to feel overwhelmed. You notice that you have forgotten the handouts you promised to take to the meeting. You turn up at the wrong time for your haircut. Often lately the car keys seem to have moved from where you left them after the last time you drove the car. Sometimes the car seems to have moved.
5. You have become friendly with the pizza delivery guy. Lately no one in your household, including you, has clean underwear. When you remember to mow the lawn, you find there is no need, as the grass is dead from lack of water. That’s okay, because the lawnmower is out of gas.
6. You can’t stop feeling guilty no matter what anyone says. No matter what you do, it isn’t enough to make the difference that you want to make in your loved one’s life.
7. You are frustrated and anxious. You feel exhausted, but are unable to rest. You comfort yourself with the classic trip to the grocery store for ice cream.
8. You have chest pain, your ulcer is acting up or your back is out. You feel confused. Things you were pretty sure of yesterday no longer seem true or relevant. You are convinced that you are a failure as a caregiver and probably as a human being. (How long has it been since you have seen your doctor? Time for a checkup now.)
9. Your mind is a blank. All you know is that you are working harder and harder as things go from bad to worse. You find yourself experiencing a feeling that can only be called despair.
10. You never really understood the meaning of the word “overwhelmed.” All you can think is that you wish this would end.
If you find yourself at a 9 or a 10 on the Scale and have not reached out for hands on help with your loved one yet, now is the time. If you do have help, it is time now to call on that assistance and take a day off or, even better, get the respite of at least a week away.
A week or even a day away may sound impossible, but a caregiver whose stress has reached high levels must have some time for renewal and some space to remember who he or she is in order to go on. This is not weakness, but simply human limits, a place many have reached before you and others are reaching as you read this. Do not ignore what your feelings and your body are telling you. Take a break. Now.
That night we moved from a 7 on the scale back down to a 2 when we came up with the idea of taking Dad the highest calorie Starbucks coffee drink to sip on when we play our weekly poker game.
The Family Caregiver Desperation Scale© is not a scientifically validated instrument, although all the items reflect our own or our associates real experiences. The American Medical Association has published a self-help instrument called the Caregiver Self-Assessment Questionnaire. It’s a good idea to review your own level of stress regularly. Stress sneaks up on caregivers, until we become too stressed to think about taking care of ourselves. We are better caregivers if we attend to our own health and sanity before stress gets out of control.
This seems like a great tool. Sometimes it helps just to know you’re not alone in your feelings. I’m worried about people who are at levels 8 through 10. I hope they get professional help if needed. Feelings like that can just wreck you.
You are absolutely right, Leigh Ann, about the high levels of stress people experience at levels 8-10. It is so important for caregivers to feel that it is appropriate to need help and support–that all caregivers do at one time or another–and to get the help and respite that they need.
Carol
Excellent advice. I think my mom was at the 9-10 stages when i started going out to their house to help her. and it took her down the scale. it didn’t help that my family house was the House of Denial of Bad Things and we got dad hospice care rather late in the process.
We were also among those families (apparently the majority) who engaged hospice later than we might have. I don’t know how much of it was denial and how much my dad’s desire to protect us from pain and upset about his impending death. All he would say was that he was fine and planned to live to be at least 100. Meanwhile, death was the elephant in the room. As you rightly say, whatever is unspoken adds to the stress levels for everyone.
I’m so glad you could be there for your mom.
Have you been peeking into my brain?? Finally got a week off, and WHAT a difference it makes!
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