Dysphagia Care Is A Family and Caregiver Matter
Let me speak of the unsung heroes of our world, those who take care of the elderly. We, here at Essential Puree, like to think of ourselves as having a caregiver perspective. (I am speaking here of the phenomenon of Baby Boomers taking care of elderly parents, a generation-wide phenomenon. Before too long, Baby Boomers taking care of Baby Boomers, or Millennials taking care of Baby Boomers. Time marches on.) I speak from personal experience. I am an author and a journalist. I am an Asia specialist and I have traveled all over the world in search of great stories. Through a chain of circumstance, I left the life of traveling the world and came home to take care of my mom for five years. I was the primary caregiver, although I had help. My mother asked it of me. It was a revelation, and an opportunity for growth. My writing got better, and I broke through to deeper ways of rendering characters and dialogue, a more profound understanding of my subjects, but, that is a story for another blog post. In our family’s case, we wanted to keep our mom at home. After booking herself a nursing home that she personally selected for the quality of its care, she decided that she wanted to be at home. She requested that I be the one to be her caregiver, since she thought I would do a good job. I won’t say why. I don’t want to dis anyone in the family, but let’s just say it had to do with the fact that my mother was an excellent judge of character. This is how our adventure began and it continued through five years. My mother’s doctor, Martinez, the brilliant Cuban-American internist, supported this idea. He thought it was a good idea for Cathie G to be at home, because he approved of my caregiving and was certain that it would not be matched in a healthcare facility. That was my family story, but in many cases in this country, keeping a loved one at home is a necessity. The cost of nursing homes is rising. The home healthcare choice is expanding in the United States. Which brings me to the subject of the caregiver at home, whether family member or professional, such as those provided by long-term care policies. In a home healthcare setting, the primary caregiver expends energy in many ways. Some are physical, such as performing regular household tasks. Some are emotional, such as being responsible for another person’s life and well-being. Sometimes things get emotionally rocky. Sometimes, one’s store of energy is depleted and the batteries must be recharged. Who knew there was a syndrome of caregiver burnout? Who knew that the doctors advise you to take care of yourself, or you will not be able to take care of another? Who knew that perhaps some ancient boundary that disappears between a mother and child kicks in with caring for the mother, or the dad in my case, and that one can lose oneself in the care of another. One does not even realize the energy must be regained. I was told very sternly by Dr. Martinez, that sometimes the caregivers die before the patients, in extreme cases, when the giving is extreme. So, when the home healthcare situation occurs, and when one person is a caregiver, here are five things you can do to help the person stay in good shape: 1) Realize that caregivers may become isolated. It is no fun to be stuck in the house with no way to get out. What can the nearest and dearest do? Plan an event where people come to the house. This can be a takeout lunch brought to the home and set up in a family room. It could be an outdoor picnic, or an outing to a restaurant planned by you and executed by you. You do every detail, from the transport, to the event, to the cost. A walk in the park, in the fresh outdoors. If the person is mobility challenged, take a wheelchair. Go to the farmer’s market. Go shoe shopping, my mother’s favorite pastime, if the patient can tolerate being out in public places. A word about mindfulness: It is very important that all of this be done with an open heart and a good attitude. Resentment shows. A negative attitude does not help the situation. It increases tension. It is easy to act out sibling rivalries from the past, but really, dear readers, if you can work through some of the baggage, it’s better for you. This is not a power contest over whom Mommy loves more, or a revisiting of childhood grievances. Forget about it. Be here, now, as the meditation guru says. 2) Give the caregiver a break, as the caregiver needs down time, including quiet time and personal time. This was true in my mom’s household, even though she had an excellent long-term care policy, and we had help in the form of aides, CNAs, from a nursing agency. The downtime can be as little as an afternoon, or longer, like a weekend or even a few days off. This could be a little favor, such as volunteering to do the grocery shopping or pick up meds at the drugstore. This could be a store run for pharmacy supplies. A little gift for the caregiver never hurts. I remember one time my sister brought me a bottle of perfume. Once she brought a pair of black leggings. Sometimes the caregiver can get burnout and feel invisible. A little gift shows much-needed appreciation. Even the aides needed to take a walk around the garden. 3) The feeding of a dysphagia patient is a skill that must be learned. It must be done correctly if the patient is unable to feed him or herself. If the patient has the ability to feed him or herself, they must be observed to make sure that they are feeding correctly. This is important with patients with dementia or Alzheimer’s as well as those who have had a stroke. In any home healthcare situation requiring caregiving, it is of the utmost importance to have backup. To have more than one family member who is capable of feeding the dysphagia patient is a good backup plan, for in an emergency, more than one person should know how to feed the patient. To all of those who might pitch in: Learn the skill. Follow the guidelines set down by the healthcare professional, usually a speech language pathologist or the hospital nursing staff with the discharge documents. Practice with the primary caregiver observing or one of the aides who provides that service. Allow yourself to be corrected and get it right, even when feeding takes a long time. This is literally a matter of life and death. Aspiration of food into the lungs through coughing leads to bacterial pneumonia, an infection that can be life threatening and is difficult to cure. Bearing this responsibility alone is hard on the caregiver. It is a great relief simply to know that the burden is shared, that one is not alone. 4) If you are a family member, make time to sit down and discuss the whole situation with the caregiver, making sure to cover any problems that have come up that might need a solution. This applies to professional caregivers who may be working in the home or to the family member who is a caregiver, whether spouse or sibling or other relation. This is about inclusion, consideration, connection and respect. Sometimes the mind gets jammed up trying to solve problems on one’s own. In my case, the great Dr. Martinez always had helpful suggestions when I would voice an issue, or he would inquire of my mother and discover an issue that needed resolution. The emotional support makes all the difference. Bouncing an idea off another person who is trusted to have the family’s best interest at heart is an immense relief. 5) Spend time with the loved one alone. This gives the caregiver a break and gives the loved one a break. My mother was great at dominoes, and I got my friend to play dominoes with mom. I did not realize the complexity of the job when I began. I now know that it is very easy for people to overlook the obvious, what is right under their noses, such as the suffering of another human being, or the opening in the fabric of life, where a good deed means illumination, self-respect, spiritual evolution, good vibes. One does not want to miss the opportunity to experience joy and there is joy in this work. It blasted through walls in me that I did not know that I had. It deepened the emotions I was able to put into my writing. It was all so simple really, that one could miss it. There were those in our family who simply wished to escape responsibility and pursue their own lives. I was not one of them. They thought they were crafty, getting out from under the job. Actually, if the truth-be-told, they missed out. I was learning by doing the right thing. I believe in the simple principle of “Do Unto Others”. I cannot count the number of times that my mother and I had good times, laughter and fun. I cannot tell you how much that meant to me. I cannot tell you how I treasure the things she said to me, the rebellious daughter, making final peace with the headstrong mom. The wheel of life goes around. First I was her baby and then she was my baby. No regrets. So, dear readers, my advice to you: Be nice to caregivers. Some day you may need someone to take care of you!