How do you help someone with dysphagia? What is it even? It truly is a different kind of food intolerance. Solid foods.
This week my heart is breaking. For some time, I’ve been preparing food for a dysphagia patient, my sweet kind Mother. We’ve got the call for the long term care home for her. She’s 89 years old now and wants to live with her kids or stay in her own home. This is not possible. She has dementia, aphasia, an inability to speak, as well as dysphagia. And it is progressing. I’ve been off work for about 12 weeks now. My leave is coming to an end in just 2 more weeks. The call is timely, but it is heartbreaking to force her to do this.
What is Dysphagia?
So, what is Dysphagia and why would I write about it in a food allergy and intolerance blog?
Medically speaking Dysphagia is described well HERE by The Mayo Clinic. A quick description is an inability to swallow. The risk associated with that is that she could aspirate, or inhale her food and asphyxiate or choke. She could breathe in whatever she’s trying to eat and choking is a real consequence. Getting food, or anything other than air into her lungs could lead to pneumonia.
What Causes Dysphagia
While I am no medical expert, I have been researching to find out what the root cause may be. Common causes of dysphagia are a stroke or throat/esophageal cancer. The muscles for swallowing or speaking become damaged as a result of a medical crisis. However, in my mother’s case, there seems to be no real cause. Over the past 4-5 years speaking became more and more difficult for Mom. It was almost as if she couldn’t get enough air behind her sentences. The medical investigations have not shown anything except possibly the muscles have just grown weak.
Other than that slow development, the rest has all escalated quite suddenly. She’s gone from a vibrant 89th birthday where she was still 100% self-reliant and driving her own car, to losing 15 pounds and becoming quite frail in the past 6 months. The dementia is a contributing factor as well, but combine it all and it’s impossible to deny. Mom needs 24-hour care.
Dysphagia Food Texture
At this point, we’ve narrowed down her diet pretty well. One of my sisters dialled in to get the texture just right. Then it was my turn to take over mother’s care. I took what she had already established with the texture and I was able to expand on the flavours and the variety. I got her onto a full diet again.
It’s still basically nothing thicker than pudding or soft mashed potato. If a food can be melt in your mouth, even better, but she has been eating well again. While Christmas dinner was very low key and awkward, by Easter we had figured things out. Although this may not look appetizing to a foodie, it was a feast for her. She ate every bit of it, asking for seconds of turnip and turkey dressing. She then followed up further with pureed apple pie with ice cream. We Aced It! She was so happy!
In spite of this, there are still some things that are difficult to get around without some creative thinking. For example, Mom is in the habit of putting crackers in her soup. She can’t do that anymore, any lumps and she starts gagging. To an incompassionate eye, it’s pretty disgusting. To those who care about her, it is distressing and worrisome.
It’s not pretty. She keeps little garbage can beside her chair because she needs to remove food from her mouth often. Either that or it comes back out on its own. We’re not talking about a few drops. We’re talking the whole spoonful, plus saliva, and anything she may have sipped on to assist. Dinner napkins are not enough.
Preparing Food for a Dysphagia Patient.
I mentioned above that my sister mastered the texture for mothers food. Think of mashed potato with too much milk, or a dish of pudding. Nothing lumpy. In the early stages, Mom ate a lot of instant oatmeal and microwave scrambled eggs. She would sneak in wafer cookies and Cheetos because they would melt in her mouth. Oh, and don’t forget the ice cream, 3 times a day. She was able to manipulate that enough, to mush it, to make it go down. As the condition has progressed, everything except the ice cream has to be pureed in a blender.
We are only fixing food for one person so portions are small. I’m discovering institutional methods are different. For example, my mom has a problem with dairy, but to make a peanut butter sandwich or chocolate cake pureed, they use milk. A turkey club sandwich pureed, with milk. Um, No Thank You.
How to Prepare the Pureed Foods at Home
However, on the individual scale, at home, we found the personal mini blenders to be perfect. Having the option of using a chopping or puree feature, or an immersion blender has earned it’s weight in gold because of the versatility. Another trick we found that has been invaluable is portion sized freezer safe containers. We’ve used some thin plastic take-out style dishes, and we’ve used some silicone muffin baking cups. These are ideal for any left-overs or batch cooking and freezing. When I use thin plastic containers, I put a label right on the lid of the container. These stickers actually dissolve to wash off. If I’m using the silicone muffin cups, I pop the frozen food cubes out into a dated and labelled freezer bag.
It’s easy to think of mashed foods that fit our normal diet of foods that can be mashed. Potatoes, sweet potatoes, squash, turnip come to the front of the list quite quickly. If that is food the patient enjoys. But there isn’t enough variety in that week after week.
Adding More Variety
Next we can add in other veggies. Broccoli, peas, carrots, eve beets, or bussels sprouts can be pureed. Fruit too, apple sauce is a staple go to. Who would have ever thought about pureed fruit cocktail? Fresh banana, mango, pears, almost any fruit will work. Be mindful of anything with skins or seeds, they simply don’t work.
Then we come to the protien portion of the menu. Sad to say, I didn’t find real roast beef, or chicken was very easy to work with. What I did instead, was to use ground beef, chicken or turkey, and brown it nicely with onions usually to bring out the flavour. Add a fluid, and viola! Egg salad could easily be done this way, and my mother was often asking for hotdogs with brown beans.
More than Just Water
The fluid is a crucial ingredient in making all of this taste good. For fruit you can use a similar fruit juice, such as apple, or pear from the baby food area of a grocery store. The fluid I used for the meat was almost always a broth of that same type of meat. I often made up a packet of gravy to go with the meat and potato combinations. It was nice to have the option if she wanted it.
This all sounds so simple. but there is a snag you have to be aware of. In order to get the smooth texture you often had to make the food more fluid than was consumable. Thank Goodness there are products on the market that are made just for this use. I had Nestle Resource Thicken-Up.
It truly was a lifesaver for ensuring Mom was getting enough calories through this challenging transition.
Using the broth or liquid to make everything smooth, and gradually adding a teaspoon or so at a time to the desired thickness. Once you’ve got the knack, it’s a breeze. You could try the baby food route, but we found Mom didn’t like most of the varieties.
Keep offering variety. Keep thinking of the foods this oatient loves, and find way to adapt that. Hotdogs, boiled beyond reason, and the water from that to puree wth didn’t dilute the flavour of the desired treat. With that already on the counter, a can of brown beans worked very well with more of the same water. Strawberries can handle the flavour of apple juice. Potatoes take milk, and sweet potatoes would take chicken broth and a little butter. Be creative. Taste test with a separate dish and spoon if you are not confident with the end result. Portion into single serving sized portions for freezing, and you’re done.
Serving Pureed Foods
While we worked on this for several months, we discovered many nuances. No one teaches you this stuff. You have to learn by trial and error.
A plate with a raised rim, or a divided plate was most helpful.
You can either defrost portions in the fridge, or microwave them when you need them. I found it handy to microwave for a minute, try to stir, and microwave for 1 more minute. Of course different power microwaves will yeild different results. Maybe it’s 2 minutes, stir, then another minute. When stirring these foods you can see a shift in texture. Intially they don’t look like they will be smooth enough, but be patient. Once they are heated properly they will become smooth again.
- Use foods the patient already likes
- Use a suitable fluid to dilute with
- Puree Well
- Thicken up slowly as needed
- Heat well
You can do this. Hopefully your patient can communicate to you what they like, and you are observing when a texture is too thick, too thin, or too lumpy still. In Mothers case, a little note written on a small white board was the key for us as she also cannot speak.
Now that the call has come in I will be handing over the kitchen duty to the staff in the long-term care home. I will take a few portions to the home to keep in a freezer there for a few weeks as they all adjust to the new needs. Everything is dated so we will all know when it is time to toss any unused portions.
Love them while you’ve got them. Take many pictures and videos. It might be 3 years, but it may be 3 days. No one knows how long we really have. You always think you have time. Take every opportunity to spend time with your loved ones as they age. We can’t turn back time after it’s too late.