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

Illustrations purchased from ©Gstudio Group, Fotolia.com

Caregiver Résumé

Caregivers, caretakers or carers are designated as those who care for another, who help with daily activities of those who otherwise would not be able to care for themselves. More aptly, caretakers usually take care of the inanimate properties and caregivers care for the individual person. But overall, humans are caring for one another, in whatever capacity they can. 

More than likely, each of us will be a caregiver sometime in our life. Frequently, the role of caregiver is shared among the family, with each one having a specific role to play. Others must lift the weight of the responsibilities alone.

Caregivers, specifically for those with dementia, normally just 'fall into' their role. Few arrive through a classified ad. But if there were such an ad, it might read like this:

-WANTED- CAREGIVER, for our loved one with dementia, a chronic illness. It will be a twenty-four-seven, learn-on-the-job, assignment to last an undetermined number of years.

This position might remind you of your babysitting days when you stayed with a child, so they were safe and not alone. Your parenting years will help you to be sure our loved one is fed, dressed decently and cleaned up. Your nurturing experience will come in handy as you care for this aging senior toddler.

When words no longer mean anything, you may have to play charades, or physically show-and-tell to discover the message.  Mobility is a necessity. When our loved one wants something and can't explain it to you, your creative instincts will be summoned to devise a game to discover what the desired item or activity is.

Personal Nature- endurance, patience, compassion, creativity, and a willing nature are all qualities that will emerge as time goes on. 

Responsibilities- Each day will bring little surprises as you learn what your new responsibilities will be. The duties will change as his disease progresses. There is no absolute routine.

Our loved one wants to do all the things he has done all his life. But you will be doing those things with him and for him. You will deal with his deteriorating coordination, his increasing imbalance, as well as his memory loss. Over time, you will do more for him rather than less, as he forgets more and remembers less…how to pick out his clothes, to know which clothes he needs, or even how to put them on. You will observe and help him with his meals, what to do with the utensils, how the sequence of plate-to-mouth goes.

Our loved one will need more help because he is unlearning as he ages. Life seems to go backward for him.  Today he can brush his teeth; tomorrow he will need help. And soon after that, you may have to brush his teeth for him. Today he can dress himself; tomorrow he may not be able to get one foot in a sock. And finally, it may take a special apparatus to complete the task with human assistance.

Some days you will only monitor medications, the next day you may need to administer them. Step by step you will watch these critical moments in his day. Our loved one may not like the taste of his meds, so you must watch that each pill gets into his mouth and not in a shirt pocket or tucked under a pillow. Pills cannot end up on the floor. You will keep up with current pill inventory and order another round of medication from the pharmacy when necessary.

Your responsibilities cover the full spectrum of the life of another human being. Your job will be attending to all things that cannot be overlooked.

You may feel as if you are living two-for-one all the time. You must be able to care equally for yourself as for our loved one; choice is not an option. With each new added task, the stress of this responsibility will heighten, your anxiety may intensify, and you may even become desperate. This job comes with no financial reward. At times, we, his family, may provide support and give you respite.

Obviously, caregiving is demanding, arduous and exhausting, regardless of the disease(s) the loved one is battling. Plus, moments that warm the heart are little compensation when a caregiver is 'used up.' Burnout and depression become potential threats to the emotional balance between joy and discouragement.

But you can't give up!

Sometimes, those who have no choice eventually come to accept the role of caregiving as a gift. There is no feeling like knowing you have helped someone with something they needed in their life. But without reward, burnout comes quickly.

Inversely, a JOB WANTED ad posted for a caregiver with an extensive résumé might appear something like this:

-CAREGIVER EXPERIENCE- My previous responsibilities range from personal care to general living and home health care - babysitting, waitressing, pharmacist, taxi driver, grocery shopper, hairdresser, laundress, seamstress, resident cook and dishwasher, housekeeper, TV and A/C repairman, remote controller, therapist, and maintenance overseer, indoor gardener, secretary and money manager among them.  

Rarely has there been a back-up nearby to help with my twenty-four-seven duties. I know caregivers get tired, yet they cannot just stop, drop the broom and leave. I feel I must go on with my work.

When duty calls, I become a bather and help with a bath, a groomer and dresser to help with picking out clothes and putting them on, or a hair stylist to be sure the hair is combed, and the part is in the right position. When feet hurt, I become a podiatrist or clip toenails. When the back aches, my experienced hands work to calm the muscles as if I were a masseuse. At times, I have helped with bathroom functions as part of the routine.

I have made appointments and recorded schedules for doctor and hospital visits, and for helping with preparations required before any procedures, or blood work appointments before seeing the doctor. Accompanying the loved one to all doctor appointments has been standard. Taking notes and documenting the diagnosis description and treatment protocol thereafter is part of my practice.

When it is time for bed I have been called ‘that person who puts me to bed.’ Letting me know what the bedtime procedure is, dressing routine, pajama choice, bathing practice, and the medicine allocations are, will help your loved one have a restful evening and good sleep. In turn, completing the tasks will enable me to get needed restful, regenerating sleep for more of the same ahead.

I know I will need to refuel compassion and patience by having support to continue this challenging role. I look forward to caring for your loved one. I trust support, respite, and time-off will be arranged in some way.

Both scenarios reflect the wide spectrum of skills and understanding that are required of the caregiving role, a position for which many are unprepared, untrained, reluctant, or totally uninclined.

But there's more!

Throughout all of the activities that make up a day, there will be dialogue, the conversations that may, or may not, make sense. Repetition of questions by loved ones, and caregivers answering the same question over and over, as if for the first time, drains patience. Loved ones don’t always want to be supervised, so discussions that ensue to urge the activity to take place can become stressful. 

The loss of memory impacts the issue of trust. Trust depends on good memories of experiences that are no longer there. Learning to be a super strategic planner while conjuring up trust over and over again, takes magical powers.

Are you exhausted yet?

Is it any wonder caregivers feel terrified or that they become overwhelmed? The expectations that a caregiver can give-and-give without support, respite or reward is unrealistic. This link in the care-chain will break. 

Support is the beginning of self-care for a caregiver. 

Support refuels caregivers and is a top-of-list requirement, a paramount and unparalleled necessity of unquestionable significance. Indubitably. 

If you are a caregiver, here are ways to ask for help: 

1) Place a call to the local organizations related to dementia and ask what to do.

2) Appeal to your family or friends for help, or for assistance finding support you know you need.

3) Make your family doctor aware of the situation, and inform your loved one's doctor.
   

4) Very Important: Join a local caregiver support group or startup your own. See the Accepting the Gift of Caregiving Support Group information on the author's website.

Oops! There I go...musing on caregiver self-care, caregiver support, caregiver respite... they will appear separately in months ahead.

Do something each day to make your heart sing!