A Salute to Caregivers
If you feel that I have ignored your long-time role and sacrifices, I sincerely apologize. Your daily care for a person living with Alzheimer’s is essential. Thank you for everything you do.
The circle of life. It’s a cold, hard reality. Our mothers, fathers, or other loved ones raised us. From the minute we came into this world, they fed us, protected us, bathed us, and dressed us. They taught us to walk and talk. They taught us to love and feel compassion. They taught us to treat others as we want them to treat us. They loved us unconditionally and without any restraint.
Eventually, the tables turn. Our parents and loved ones need us. For some of us, our parents need us to remind them to take their medication, to eat, dress, and bathe. Some of us become responsible for our parents’ safety.
As a caregiver, you often have to put your loved one’s needs above your own and even above the needs of your own family.
Cognitive impairment in all its forms changes the lives of caregivers like you. Typically, caregivers lose touch with family and friends. They are often among the hidden and forgotten people at the center of the ugly cage of memory loss. Most caregivers do their job at a high cost financially, physically, emotionally, and spiritually.
In 2016 alone, family and friends provided more than 20 billion hours of unpaid care to people with some cognitive impairment. Women provided most of that care.
Someone who has not experienced any kind of caregiving to a person with cognitive impairment cannot really imagine how hard this job is—the endless days and nights, the building anxiety, the deep sorrow of seeing your mom or dad forget who you are, the exhaustion of having parents argue with you about what they need to do. They slip away in every respect except physically. Even if you are not crying, you are grieving.
But there’s an even more substantial burden that many caregivers must carry.
If we take care of loved ones after open heart surgery or knee replacement or even cancer and chemotherapy, it can be physically and emotionally exhausting. But as we help them, they are still with us. They smile, thank us, respond to us in familiar ways, and we have hope that they can get better. Sadly, the circumstances involving Alzheimer’s dementia differ substantially.
When you care for your loved ones with Alzheimer’s, you are taking care of two people—the parent who still lives in your memory and the one whom your parent is becoming. Increasingly, you mourn the person who loved and cared for you, but at the same time, you must care for a person who doesn’t know you and may even resent you. You are helpless in the face of this horrible disease, and inevitably guilt moves into your house like a bad smell.
Worst of all, you have no hope that things will ever get better, only worse.
Children become increasingly independent. Your loved one with Alzheimer’s becomes less and less so. The day comes when you can no longer leave your loved one alone. You will no longer go to the store without arranging care for them. Vacations are a thing of the past—a memory of a happier time. Often, your loved one becomes more agitated and increasingly violent. You never know what your loved one’s mood will be from day to day.
One day, you will realize that you can no longer take care of your mom or dad. You already keep the door locked so they cannot go out on their own. You have taken every step you can to eliminate dangers inside your home.
But now your loved one feels threatened and has become increasingly aggressive. You have to be with them continually, and it’s hard to find time to go to the bathroom without putting them at risk. You are becoming sleep deprived because of the demands of caregiving and the added stress is a terrible burden.
And so you arrange for your loved one to move into assisted care or a nursing facility. The day when you walk away from the facility, knowing that your loved one will not be leaving with you, is often devastating. Many caregivers feel like they have failed.
If you are lucky enough, you may know the physician at the facility or one of the staff members. Knowing that someone at the facility is on your side helps a little with the guilt. Even so, at the nursing facility, your loved one will not have their pets, furnishings, or familiar surroundings. The rooms they now use are different, as is the glass they use for drinking water, the mattress they sleep on, and the many unfamiliar faces. This makes them deteriorate faster and faster.
Eventually, with Alzheimer’s, your loved one will forget everything—to eat, to drink, even to swallow, and ultimately, they will forget to breathe. Then the long good-bye will end. So much loss!
If you are a caregiver, I suspect you have already thought about legal and financial plans, about long-term care and government support. I will not cover any of these, nor will I suggest a plan of care, because as the caregiver, it will be primarily up to you to devise a plan of care for your loved one.
But I do want to remind you to take care of yourself as you care for your loved one. In fact, for the sake of your loved one, take care of yourself first. In airplanes, the flight attendant says to put your oxygen mask on first and only then to help your loved ones. You need to care first for your own physical, emotional, and spiritual health if you want to keep meeting the needs of your loved one.
In particular, you must take care of your cognitive health during this difficult time. Think of all that the task of caregiving has brought into your life—anxiety, stress, inactivity, lack of sleep and exercise, and often less than adequate nutrition.
All these increase your risk of Alzheimer’s. If you fail to care for yourself today, you may be the one who needs a caregiver tomorrow.
You are not alone. There are people in your community who want to help, who understand what you are facing, and who are willing to give of their time and love to help you through the nightmare you are experiencing.
We are witnessing history. A pill or effective treatment is still in the future. For now, for the sake of our families and our communities, we must all work together to do what we can to defeat the loss that comes from Alzheimer’s.
And that includes doing all you can to avoid your own risk of Alzheimer’s.
I sincerely wish you all the best.