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Tips for those with swallowing difficulties (dysphagia)

meatn3 Jun 30, 2013 11:48 AM

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.

  1. meatn3 Nov 9, 2013 04:44 PM

    Just an update of a personal nature:

    After several predictions of death within a few weeks my Mother is on the upswing!

    Her quality of life had deteriorated to the point that my Father decided to let her go. All medical advisers felt her organs would begin to shut down within a few days of going off her numerous meds...Interestingly she became stronger and more alert within two days. She is now eating real food at almost normal amounts. Her weight is within safe limits, she is talking, her mind is clearer and she is taking enjoyment in everyday things. She still has issues but she is so much better than she has been in years.

    My personal opinion is that the Dr.'s were dealing with symptoms to such a degree that she was medicated to the point of being a zombie. Either way, we are happy to have an upswing to this roller coaster and to see her back with use in a greater capacity. Oh - it has now been 2 months since her meds stopped.

    3 Replies
    1. re: meatn3
      4
      4Snisl Nov 10, 2013 05:44 AM

      Thanks for the update! So happy to hear that she has made such progress.....It's also been great to read what you've found helpful for your mother- the tips may work for other people as well.

      1. re: meatn3
        m
        msjo55 Nov 10, 2013 11:36 AM

        Thank you for your suggestions. Mom does use a thickener with everything but its becoming boring for her. Magic cup is good but dont think its lactose free.
        Wonderful news about your mom. sometimes it does help to come off of the meds at least for awhile.

        1. re: msjo55
          meatn3 Nov 10, 2013 01:06 PM

          Thank you.
          :-)

          It did occur to me that souffles might be an option...I had good luck with them with my Mother.

          The lactose issue is difficult. So many of the products use milk proteins or whey.

          I'll post if any other ideas come to mind. It is such a difficult situation to deal with...

          edit: We did good with finely chopped egg and tuna salads. I also found mini bow tie pasta by Manichewitz gave some texture but was easy for her to process.

          http://www.manischewitz.com/assets/im...

      2. m
        msjo55 Nov 9, 2013 02:14 PM

        my mom has swallowing problems too. she has dysphagia and suppose to get mechanical processed food which she hates. she is also lactose intolerant and low salt diet. she doesnt eat much and does not drink much at all during the day. she gets tired out. the speech therapist suggested ways of swallowing but seriously...shes 92. they are against straws although i think she would actually get more liquids in her if she used a straw. need some suggestions and different ideas.

        1 Reply
        1. re: msjo55
          meatn3 Nov 9, 2013 04:34 PM

          A sippy cup for seniors (a good medical supply store will have or can order) works well. Less chance of aspiration but has some of the pluses of a straw.

          There are thickening products (we use Tickenup by Nestles) which are very helpful. You can thicken liquids or pureed foods to the desired level. Liquids can be difficult to manuveer in the mouth for those with dysphagia. My Mother does well with an applesauce level of thickness.

          Can she suck on ice chips? If so you can freeze broth too.

          I think the speech therapists recommend against straws from a fear of aspiration. We use them because they work. We have had no aspiration issues. Each case and family is different though...

          We have also had good results with a product called Magic Cup. There are four flavors - berry, chocolate, vanilla and orange iirc. They can be consumed frozen or defrosted. They are available by mail from:

          http://www.hormelhealthlabs.com/2colT...

          One of my Mothers aids said the berry flavor was the most popular in a nursing home she worked in. My Mother likes the vanilla and chocolate best.

          We did have some success with treatment with a tens unit.

          Best wishes to you and your Mother. This is such a difficult situation to be a part of. My heart goes out to you both. Please use this thread to note what works or doesn't work for you. Hopefully others will be able to benefit from our experiences!

        2. rmarisco Jul 19, 2013 09:05 AM

          have you tried coconut water? excellent hydration drink - my husband uses it for half marathons - and healthy. It looks like water. Try a few brands - i find the flavor varies greatly. I like one we get that is called taste nirvana real coconut water. It comes plain, with pulp, or with aloe gel. I really like raw coconut water when i can get it - but it's harder to find (my whole foods has it in the cold drinks case - needs refrigeration). It's high in potassium so i don't know if that will have any effect on meds.. good luck to you and your family. hospice is difficult, i know, but I found it a comfort to have them close by.

          1. meatn3 Jul 11, 2013 06:05 AM

            I have no expert opinion behind this, but perhaps this observation will be helpful:

            My Mother has always liked a soft drink with her lunch, Dr. Pepper being her preference the last 20 years. She gets a small Dixie cup sized glass with her lunch.

            Yesterday something about the temperature and the fizz allowed her to almost chug down a whole bottle of the stuff! She had 8 swallows in a row without difficulty or pause. Which is amazing since one swallow can take 45 min. on a bad day.

            I'm thinking carbonation might be a useful tool. Perhaps tonic water or club soda added to a chilled fruit soup...or make a float with soda and a vanilla Magic Cup. Anyhow, I'm going to play with the idea if she is agreeable. If nothing else it will provide a bit of relief from my on going laundry stain removal self education which has been one of the more interesting aspects of my recent weeks... :-))

            2 Replies
            1. re: meatn3
              Melanie Wong Jul 18, 2013 11:33 PM

              Yes, carbonation triggers swallowing. When my late father was on thickened liquids (that he hated), his speech therapist returned from a conference all pumped up that carbonated drinks were controversial but some were advocating for them. We got extra calories into Dad by serving him root beer floats and kept him hydrated with a couple cans of ice cold sugary soda a day.

              1. re: Melanie Wong
                meatn3 Jul 19, 2013 12:44 PM

                Thanks for the confirmation! I'm not usually a fan of soda's but in this situation they are a useful tool.

            2. g
              gimlis1mum Jun 30, 2013 07:07 PM

              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 oz...it 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:
              http://www.talktools.com/blue-cut-out...

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

              1. meatn3 Jun 30, 2013 12:06 PM

                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. meatn3 Jun 30, 2013 12:01 PM

                  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
                    fldhkybnva Jul 9, 2013 04:10 PM

                    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
                      meatn3 Jul 9, 2013 09:41 PM

                      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
                        fldhkybnva Jul 10, 2013 07:50 AM

                        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. meatn3 Jun 30, 2013 11:56 AM

                    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. f
                      foodieX2 Jun 30, 2013 11:54 AM

                      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
                        meatn3 Jun 30, 2013 12:15 PM

                        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
                          p
                          pine time Jun 30, 2013 12:44 PM

                          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
                            meatn3 Jun 30, 2013 07:23 PM

                            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
                              p
                              pine time Jul 1, 2013 08:59 AM

                              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
                            f
                            foodieX2 Jun 30, 2013 12:55 PM

                            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
                              meatn3 Jun 30, 2013 07:32 PM

                              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
                                p
                                pine time Jul 1, 2013 09:04 AM

                                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!

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