Coping with an ill loved one’s difficulty swallowing can be heartbreaking, frustrating and frightening for caregivers. Providing care for someone we love involves nurturing and nourishing them. When the ability to provide pleasure through food is taken away, caregivers may end up feeling rejected.
Of course, that’s illogical, but when our best efforts result in our loved one coughing or gagging, it’s hard to feel good about ourselves. What we need to understand is that this is not our fault. Many diseases can cause swallowing issues. As caregivers, all we can do is learn to cope the best way that we know how.
Hospice personnel often work with people who have this issue, so I asked Antoinette Ryba, RN, who is a Patient Advocate, Care Manager and Health Coach, for some suggestions. Ryba is also a member of the Hospice and Palliative Nurses Association.
Ryba tells us that difficulty swallowing, clinically known as dysphagia, can occur for a variety of reasons including oral neoplasms (growths that may or may not be cancerous), neuromuscular disorders like multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS), Parkinson's disease (PD), strokes and dementia.
“There are recognizable, yet often subtle, signs and symptoms indicating dysphagia,” Ryba says.
Signs of dysphagia include:
- Extended time and effort spent at meal time
- Food, liquids or saliva leaking out of the mouth
- ‘Cheeking’ foods
- A gurgling voice during and after meals
- Coughing while eating
- Weight loss
- Chest congestion
- Aspiration pneumonia
“When these signs occur, it is important for caregivers to further explore the cause,” Ryba says. “Treatment and management will depend on an official assessment, which is commonly performed by a speech therapist.”
“In Alzheimer’s and dementia patients, difficulty swallowing will occur at some point during the disease trajectory and is an indicator of disease progression,” Ryba continues. “The cause is a loss of gag reflex or decrease in level of consciousness, which requires increased care and supervision. This can be extremely difficult for families since food is one way to nurture and show love. However, aspiration pneumonia is one of the most common causes of death in Alzheimer’s patients.”
How to cope with difficulty swallowing
Ryba tells us that it’s important to first determine the exact cause of the swallowing problems through professional assessment, but she does have some suggestions to help you, the caregiver, cope:
- Thicken liquids with commercial thickener (“Thick It” is most common) or pureed fruit, such as apricots and prunes. Thickened liquids won't trickle down the throat as readily as thin juices.
- Puree or finely chop foods and stick to a soft/mashed diet.
- Take ample time to allow adequate chewing and full swallowing.
- Remove any distractions at meals to allow concentration and focus.
- Be cognizant and alert to cues that indicate distraction or food still in the mouth.
- Ensure positioning is upright, not slumped forward or reclining, to allow easier swallowing.
- Schedule mealtimes for the most alert times of day.
- Some Alzheimer’s patients do better with finger foods that will tap into the automatic motor rhythm they have used all their lives.
“Once dysphagia becomes so severe that swallowing is no longer possible, the disease may have progressed to the point of considering hospice evaluation,” Ryba advises. “Weight loss and inability to feed oneself and swallow are included in the indicators for hospice criteria. An evaluation by a hospice professional would be appropriate to determine if it is time for end of life care,” she says.
While I have been, so far, fortunate not to have experienced this problem with my loved ones, I do know that rushing my father during mealtimes was counterproductive. It’s easy for the person doing the feeding to become impatient as we sit and wait for each bite or sip to be swallowed.
Feeding is yet another caregiving task that requires lots of patience. Give the person space and all the time they need to finish their meal. Let your loved one make choices and honor those choices—don’t be forceful. Let care and love show on your face rather than fleeting irritation at their slowness.
Use eye contact and encourage them with visual cues such as opening your mouth when they are supposed to sip or bite. Follow Ryba’s suggestions for practical tips to help you help your loved one swallow more safely.
Thank you, Antoinette Ryba, for your help. These tips are valuable reminders that there are things that we as caregivers can do to keep our loved ones nourished and avoid aspiration of food.