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Jun 30, 2013 11:48 AM

Tips for those with swallowing difficulties (dysphagia)

My Mother has Parkinson's and has had numerous little strokes. She now has tremendous difficulty swallowing. Her swallowing problems involve getting the food to move from her mouth to the throat. The difficulties have become progressively worse over the years.

We are now at the point where simply getting enough calories and moisture into her take the major part of each day and leave her exhausted.

I'd like to share a few of the tips we have learned in the hopes that this post can become a resource for others struggling to keep their loved ones strong.

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  1. How is her appetite? Is she hungry but can't eat? We struggled with that with my mom during chemo and radiation which left her with horrible throat pain.

    Cold soups she could sip or even drink thru a straw where helpful as were smoothies and ice cream. The docs were more concerned with over all calories but were worried about nutrition.

    When she lost her appetite it became much worse as nothing enticed her. It was only the threat of s feeding tube or those horrible shakes that kept her eating even small amounts.

    7 Replies
    1. re: foodieX2

      The whole process just is so taxing that she is weary of it all...we are at the final stages and Hospice is now assisting.
      Our current focus is hydration and calories. With the time frame she has balanced nutrition is less of a concern than even a few months ago...

      She is now on almost complete liquids. On a good day she might think "real food" appeals and perhaps eat a pea sized bit of something.

      Straws have been helpful, although in her case the speech therapist has cautioned against them. A straw can make it difficult to control the amount brought into the mouth...Cutting the straws to a shorter length allows less effort. Bubble Tea straws are handy too. Some straws are too flimsy for her. Chick Filet fast food has been selling my Father boxes of their straws since the size and thickness work best for Mom.

      1. re: meatn3

        While not a full-time staff member, hospices are required to have consultant registered dieticians available. I'd assertively ask for that consult (it's under the regular hospice cost, no charge to you). An RD can give not only guidance on getting in adequate calories and nutrition, but also on the appropriate thicknesses and produces to products that make the right thickness. Best wishes. (I worked 10 years in hospices.)

        1. re: pine time

          We have an appt. with the hospice social worker soon & I will inquire about the reg. dietician. My parents have always eaten a rather limited variety of foods. Over time that variety has become much more processed and they have become very resistant to change. My Father is of the "if it works don't change it school" and will only accept dietary advice if it comes from the Dr. My "hippy sh*t mumbo jumbo" nutrition suggestions are not well received. My sister and brother are much the same. I've been here for about a month now. I have converted them to my scratch stocks as a soup base. I'm making bone broth stocks to up the nutrition. My Father actually requested I make more which is a major "wow" for him.

          I have mellowed a bit too. We are at the point where if a Dr. Pepper appeals to her then I am just happy she is enjoying something, any thing.

          I do continue trying to pump extra nutrients into everything...sometimes I think her refusal to eat is partly because it is one of the few remaining things she has any control over.

          Thanks for the nudge! Hospice is such an amazing resource.

          1. re: meatn3

            I had hospice for both my parents. You may still need to be somewhat assertive for a dietician, since the hospice pays extra for the consultant, but it's certainly worth it for the patient and family. My Mom ended up loving the Ensure type drinks, but towards the end, she actually preferred a children's product, PediaSure. Thickness consistency is the big issue: too thin and many patients choke (and can aspirate into the lungs, even what's called "silent aspiration"), too thick and it just isn't palatable. Either the dietician or a speech therapist can test for the proper consistencies.
            Best wishes with your Mom and for your family. Hospice can be a big help, but it's families like yours that does the hardest work of all.

        2. re: meatn3

          I hear you. My mom was like that at the end too. Just so tired of the whole process of trying to eat. It was exhausting as was so many things. It was actually more frustrating for her when she was hungry but had difficulty eating than when she had no appetite.

          Do you have grocery with a "good" high end baby food section? A friend told me her dad loved the mango and pear purees she would find at WF, as well as some unique apple and other fruit sauces. She would freeze them for interesting "sorbets". Her dad had Parkinsons too.

          Funny you mention that about the straws. We never had a problem with them but the assisted living facility gave us a supply of special short straws. Never thought they must have known what they were doing and got them special.

          1. re: foodieX2

            My Father has nixed my suggestions for baby food before. I did pick up a couple of organic options I think will match her flavor preferences when I shopped tonight. The aids (8 am to 8 pm) and I are on the same page so I think we can try to sneak a few into the mix...

            I have done a bit of personal chef work specializing in helping people adapt to dietary changes in their lives. It is so frustrating not being able to help in this way here. My Mothers taste buds seem very resistant, even to old favorites and my Father is looking at calories in any fashion without regard to nutrition. There are so many other issues involved in the interpersonal dynamics at this point. So I just try to maximize my efforts when possible and not rock the boat too much the rest of the time.

            Thanks so much. :-))

            1. re: meatn3

              Family histories play as much into food as menu selection, don't they? I was still the baby of the family when dealing with my parents, even though I was a licensed professional and worked 10 years in hospice. As things got more complicated, they allowed me to manage more. I quit fighting food battles, though. It may sound brutal, but by the time my Mom was on hospice, she had little appetite and interest in food, which is common at the end of life. I decided if she wanted Hershey bars 3x/day, so be it. Well, mostly--those darned dynamics creep back in!

      2. There is a very good resource written by a nutritionist and two swallowing experts. As a well versed cook I find the recipes of less interest than the first part which deals with understanding dysphagia. There is also a good resource section. I find the recipes often spark ideas, especially at the times when you feel you have tried everything.

        Easy-to-Swallow Easy-to-Chew Cookbook by Weihoffen, Robbins & Sullivan

        ISBN 0-471-20074-3

        This book really helps caregivers "get it" - often people think the patient just isn't trying hard enough or focusing.

        1. A speech therapist told me that extremes in temperature, particularly cold, help the throat contract for a swallow. Same with tart flavors.

          We have used this tip with good success by alternating spoons of soup with spoons of Lemon Italian Ice.

          3 Replies
          1. re: meatn3

            Oh, wow this is great to know. My mother suffers from Multiple Sclerosis and is now on a soft-food diets due to frequent aspiration and as a foodie and gourmet chef she is struggling with the challenges of what to eat.

            1. re: fldhkybnva

              I am so happy this might help!

              As a member of a family which shows love through food this is a very difficult issue. My Mother was an excellent cook and it is so frustrating seeing something which was once a thing of joy and shared pleasure becoming such an issue of dread for her.

              Each day is different and the palate changes too, so keep experimenting!

              1. re: meatn3

                Thanks so much for the encouraging words, it is indeed a daily battle but we're trying to make compromises so she can still enjoy all the wonderful foods she always has. It's also quite frustrating because she enjoys well cooked meals but unfortunately most of her caretakers aren't very into that which makes her quite frustrated so I've tried to find easy ways to prepare tasty dishes which still use quality ingredients to try to come to some balance.

          2. Most of the Boost, Ensure, etc. products have about 250 calories. I recently found Ensure Plus (high calorie & high protein) at Costco! 360 cal vs/ 250 is huge at this stage of my Mother's decline.

            We add it to smoothies, serve it frozen, drink as is and for tough days thicken it to an applesauce consistency.

            1. Two other products that you can order online (I get them through Amazon) are Boost Very High Calorie and Benecalorie. The Boost VHC has 530 calories & 22g of protein in 8 comes in a juice-box-sized package, with a juice-box-sized straw which is ridiculous because it's kind of THICK and doesn't really work with that skinny little straw.

              The benecalorie stuff is 330 calories (I think) and is rather oily. It's worked best for us when we add it to smoothies (think emulsifying in the blender) or an already creamy soup.

              Something else I remember from when my son worked with a feeding therapist (he ahd a cleft lip & palate) is that you can trigger the swallowing reflex by pressing against the bottom lip. So we would use a small cup, or a specialized cut-out cup (I'll look for the link in a moment) and hold it against his mouth, pour a bit in while pressing on the bottom lip, and then quickly move the cup away (sorry I can't describe it better than that...). I also recall the advice to use cold liquids to trigger swallowing.

              Remembered the link to the cut-out cups - this company has other feeding things too but this might be helpful for your mom:

              (edited to remove typos...hope I got them all!)