When a spouse or loved one has dysphagia, or if you are hired as the caregiver for someone with dysphagia, your attitude has a lot to do with the potential for improvement or rehabilitation. That may seem like it is putting additional pressure on you, who already has a lot of responsibility and pressure for the positive outcome of the patient. Was that my intention? Yes, but let me lay it out for you…

When a spouse, loved one, or patient has dysphagia, it is a very scary situation for everyone. The dysphagia was caused by something else, so there is that primary incident, surgery, or disease to deal with. On top of that, they can feel that things are not working as they should when they try to swallow. They may feel pressure in the chest following eating or drinking, feel like something is stuck in their throat,  experience coughing or choking either during or after a meal or their medications, or all three! Because things are happening all over the place, it’s hard to pin down exactly what is going on, and it can become overwhelming for everyone. You, in the position in which you are sitting, can make a huge difference and get this recovery and/or rehabilitation going in the right direction.

First of all, being able to swallow safely protects the lungs from having food or liquid fall into the airway. When food or liquid falls into the airway, a person normally would try and cough it out. If, however, the nerves that innervate the pharynx and larynx are not functioning properly, the patient does not feel the food and/or liquid as it falls into the airway and, as a result, aspiration can occur without response. This is called silent aspiration, meaning that they don’t know they experienced it and therefore no cough occurs. Understanding how this works is vital to the caregiver as this can eliminate the need for arguments with the patient concerning whether something ‘went down ok’ or not. I see, in my patients and loved ones or caregivers, this conversation going on and on and on unnecessarily when this is not a question that can be accurately answered from outside of the throat. The patient clearly doesn’t want to be debilitated, meaning that they don’t want to have dysphagia. As a result, often they want to debate whether they really need to follow a certain diet or drink a certain thickness of liquids. Unlike diabetes, for example, there is no finger stick to see whether dysphagia is occurring as there is to assess blood sugar levels. This is an argument that you want to avoid. It’s a no win situation because you don’t have the answers they are looking for.

Secondly, think what it is like to be ok one minute and then something happens that changes your life considerably. You were in control of your life, and now you have lost control and need the assistance of others, the advice of others, or a regimen that was prescribed to you by your healthcare professionals. As a result, personalities can change, and not always for the better, and that’s ok. The patient has to mourn the pre-incident health that they lost and are hoping to get back, and the caregiver has to mourn the life that was being led pre-incident. Likely the hospitalization and rehabilitation or post surgery period was uncomfortable for all involved, and the future seems very uncertain. This is all normal! Please know that it is ok to feel this way.  Issues will arise, however, if you don’t learn to deal with this new, hopefully temporary-normal that has entered your lives.  What can you do? I suggest the following five things to get you started:

1. Take a deep breath and realize you are all doing the best you can do.
2. Normalcy as you knew it will not return in a moment. It may take weeks or even months or years to get as far as you are going to go, but don’t lose sight of the normal that you are hoping for and working towards. My brother had a horrible stroke 5 years ago and although the road was tough, he is back to playing golf 5 days a week and is healthier than he was pre-stroke. He may only play 9 holes and not 18 every day of the week, but he is playing golf, which was one of his goals.
3. Realize that it is not in anyone’s best interest to debate or argue about every little thing. What I mean by this is that what the patient liked or could eat or drink before the health incident may not be possible at this point. It is best not to discuss it or comment on it. Simply try and find some things that are safe and can be easily tolerated at whatever level they are on at the time, and be positive and change the subject as much as possible. Pointing out what they can’t have is negative energy that no one needs. If they ask for a particular food or liquid, assure them that you will figure out how to make it safely so they can enjoy it. The prospect of enjoyment might be enough for the moment to pass.
4. The patient may perseverate on one aspect of the healing or rehabilitation process and ask the same questions over and over. It’s not that they can’t remember the answer. It’s more about it being stuck in their mind and it is bothering them, or they may be hoping for a different answer. Simply answer again without commenting on the amount of times they have asked. This is difficult but I promise you that it shall pass as the healing process moves forward.
5. Confusion is a natural part of rehabilitation and healing. The days and weeks meld together. Added to that, the brain can fatigue with short term memory loss, looking for the right words, thinking it is another day, or even confusing family members’ names. There are many reasons for this cognitive process to be diminished, and just know that it is not unusual, and will likely get better throughout the rehabilitation process.   Your goal when this confusion happens is to reassure your loved one with the answers, lovingly point out the day or time if asked, and to keep the environment stable and calm. If you say something like “you just asked me that five minutes ago”, or “don’t you recognize Janet?”, the anxiety and stress associated with rehabilitation and healing will increase and these cognitive systems will function at even lower levels. Cognition needs the energy provided by adequate nutrition, hydration, and a positive environment to function at its best.

Most importantly, take care of yourself. Find a way to give yourself the time to take a walk or chat with family and friends. Get a good night’s sleep when you can and be sure that you stay nutritionally sound and hydrated as well. This is a marathon journey toward getting you and your loved one’s life back, so treat it as such. Find someone to talk to if you need help, because how well you are doing will have a direct impact on how well your loved one does. Sometimes it may seem like everyone is only interested in the patient, but you are important too. Find those professionals who are willing to help you adjust and cope and be the best you can be!