Dysphagia Care at Home and In a Healthcare Facility

Let me speak of the unsung heroes of our world, those who take care of the elderly and others of all ages with challenging health conditions of all types.

We here at Essential Puree like to think of ourselves as having a caregiver perspective.

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.

The “be nice to caregivers, be nice to yourself” principle is important for those who work in private homes as well as healthcare facilities. The emotional component is still there, as the caregiver may be responsible for a number of patients, all with different needs.

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 one could 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, because while the caregiver is taking care of the loved one, no one is taking care of the caregiver.

So when the home healthcare situation occurs, here are five things you can do to help the caregiver 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. Arrange 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.  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, 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, say a weekend off, or a few days. 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. One time, my sister brought me a bottle of perfume. Once she brought a pair of black leggings. The caregiver can experience burnout, a special form of fatigue, and feel invisible. A little gift shows much-needed appreciation.

3. Understand the work that the caregiver does.  Be prepared to be a backup, which may mean learning a special skill. In our household, it was dysphagia, swallowing difficulty brought about by dementia related to aging.  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, he or she must be observed, to make sure that they are feeding themselves correctly. This is important with patients with dementia, Alzheimer’s and 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 or observe 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, 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 of 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 allows the caregiver to walk away from the situation and take a break. It even gives the loved one a break. They too might welcome a change. My mother was great at dominos. I got my friend to come and play dominoes with her. She enjoyed sitting out on the deck in the fresh air, with music playing, having a few games of dominos and an afternoon snack.

I did not realize the complexity of the job of caregiving when I began. I now know that it is very easy for people to overlook the obvious, what is right under their noses. The suffering of another human being is hard on a caregiver who may not have had professional training in how to separate one’s emotions from the situation.

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 evolving on a daily basis 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. Nothing left unsaid.

So, dear readers, my advice to you: Be Nice to Caregivers. Some day you may need someone to take care of you!

Featured photo credit:  PublicDomainPictures via Pixabay, cc