JULY 15, 2019 BY JAS 🍦
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.
Oops! There I go…musing on caregiver self-care, caregiver support, caregiver respite… they will appear separately in months ahead.
Each day do something to make others smile and your heart sing! ~jas
“Caregiver Résumé” © 2019 Judith Allen Shone
Please ask your library to order it so others can read it. Thank you.