Plan C for CaregiverCare

Wizards! Miracle workers! Enlightened geniuses!  Vessels of kindness! Treasures of the Universe!

Caregivers are amazing. They endure long days and longer nights, sometimes without a break or a nap. They hold the family together and hold their loved one close. I am honored to walk among such awe-inspiring individuals. Male or female, spouse or child, friend or service worker, I have come to recognize that anyone who gives care is one of the most extraordinary human beings on the planet.

Most caregivers came to their role from a ‘normal’ life, where loved ones did things on their own ‘before,’ and caregivers played a different role, perhaps wife or child. That was Plan A. But in time, those distinctions changed and the role of caring for another, for whatever reason, become the dominant focus from then on. Those changes became Plan B.

Always on high alert, ready to be there when the ‘call comes,’ when the walker breaks down, when the shoes are untied, when the shower mat slips, when a loved one rolls off the bed, when the loved one has appointments to attend, caregivers pull up their compression socks, unfold their canes; hop into the phone booth and put on their cape. After checking their 'toolbox,' they are ready to 'role.'

When clothes get lost under the bed, shoes end up in the wastebasket, caregivers take it in stride, get it right and move on. When trash is dumped in the tub instead of the dumpster outside, they close their eyes, count to ten and clean it up. When their loved one begins to look for the bathroom in the linen closet or pantry, caregivers rise to the occasion and, even though they are tired, gently give guidance. They know their loved one with dementia needs help just with living.

Rather than waiting to see ‘what happens next,’ caregivers orchestrate the scenes; their intention is to control the situation. Desperate for respite for themselves, they ‘arrive at work,’ prepared from sunrise to sunset, and sometimes on through sundowning, experiences. Even after bedtime, caregivers are on high alert, ready to step in and manage their loved one’s increasing unfamiliar situations…in some cases, situations unfamiliar to both.

How do caregivers know so much? When did they learn these things?

In most cases, classes offered by organizations focused on dementia, are the best help a caregiver can get. Different groups offer various type sessions and depending on the timing, usually benefit caregiver support and families as well as caregivers.

In our area, the Alzheimer Society offers a catalog schedule of classes and programs for each quarter of the year. Look online or call their offices. There are classes in some areas just for families and support workers. Then classes for caregivers and support, all from different perspectives. Having family members take classes means caregivers have someone else ‘caring from the same page’ as they work through their tasks. Highly recommended.

Gathering with other caregivers in support groups or personal meetings or social activities serve to reinforce what each one has learned. In such situations, they can double their value and leverage their time by learning from one another. Caregivers not only need support, they also give support. Acclaim Health, in our area, is involved in respite and information as well support for caregivers. Caregiving is is a demanding role. Support is essential.

But what happens when the day comes - and it only has to be one day - when things fall apart?

What does a caregiver do when the plan for driving to a class is interrupted by a flat tire, with no one to call? What happens when a doctor needs to see the loved one right now and your transportation is not coming for two hours?

What happens when a caregiver arrives at a scheduled appointment only to find it was an hour earlier, but the appointment is necessary because outside care service for the loved one was already arranged?

What happens when caregivers think they are winding down before bed and their loved one begins to have hallucinations for the first time and this type situation was never rehearsed?

Education, rest, action, rest, education, rest, action, rest.

That has been my intended formula. It does not always go like that…sometimes a couple of the ‘rest’ periods get overlooked, or the education comes later in the schedule, even though it was needed sooner. The one thing we do know is that action will happen, ready or not.

I don’t know what the agencies or professionals would say, but if I am not at full steam, I am worthless as a caregiver. Rest is important. Health is really important.

Where do caregivers get their energy? What keeps them going?

At some point the energy needle points to zero, indicating a fill-up is needed. At other times, a rest is necessary to get beyond exhaustion. Caregivers don’t always have energy. Superheroes need a break to refuel, too.

Caregivers need a Plan C – Caregiver Care for their caregiver life!

If you are a caregiver, find time now and spend one hour beginning to think about a plan. On a piece of paper, draw columns. Label them:

     Action Cancelled,

     Replacement Suggestion

     Lead time

     Contact,

     Phone

     Cost

     Benefit

 

        

If you use computer spread sheets, you can always add another column if you need one. Make the list meaningful for each person. Keep the form on your computer or put it in a notebook with other resource materials…your Plan C will grow.

Include your family, your friends, service personnel, resources you learn about in your classes, from your various groups, from organizations. Know the lead time required and financial limits for each replacement. Record a contact to call with their number. The Action Cancelled may be less important than the Replacement Suggestions. The suggestions can be multipurpose and replace more than one type of activity. Include 911 and the COAST (Crisis Outreach and Support Team) phone numbers, or similar for your area, so they are ready options when you are making decisions.

Learn what each replacement can and cannot do. Get to know service contacts. Have a neighbor emergency person if possible. Include friends who will meet you for lunch if your loved one is safe with someone else or in a program. Know your friend with the good listening ear to call when frustration sets in. Consider walking buddies, exercise classes, emergency health phone line. Add who to call when you need a ride, when you need a delivery, when you need food. Who can do laundry? Housework?

You may get sick…what then? Include outside services as well as family assistance. Include caregiver care as well as care for loved one. Brainstorm now so when you need it, the plan is ready with resources.

In the benefit column a reason for replacement can be listed, or the person who will benefit. Both will be important when the time comes. Add what makes the list more meaningful and functional. But begin to build it now, as your journey begins. Keep it always. It will turn out to be priceless.

Your list will become your valued Plan C – Caregiver Care.

Do something each day that makes your heart sing. ~jas

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