Thank you, Christine, for an excellent article which unfortunately, hits myself and my Mom right where we are now living... at the edge of her life. I sincerely appreciate your words.
I do employ the use of Thick It... and for awhile things seemed to help a lot. With her continued digression though, even though I still use it - the other problems you noted have taken a more significant role with respect to lessening her abilities.
One thing I've done for a long time that I think still helps her is to serve her apple sauce each morning along with an egg. I fill the sauce with most of her ground up medications and add a little sugar to combat the medication taste. The apple sauce helps her swallow the egg and whatever else I've given her. The point is the sauce seems to more easily activate the automated swallowing sequence which helps to carry the rest of her food with it.
Thank you, again !
Christine, This is a timely post for a few of us, it seems. My mother has been having these problems since February. Things like applesauce, mashed potatoes and gravy, sloppy joes, oatmeal with butter and milk, cream soups, creamed corn and of course, ice cream seem to work just fine. It's the hundred or so other items that are problematic. Strangely, my mom can handle a grilled cheese sandwich, except for the crust. Mom spits out meat and vegetables that aren't mushy soft. For now, drinking juice and Ensure is working fairly well, too. She does occasionally cough when some goes down the wrong way. We won't be doing the feeding tube since mom stated that she didn't want to be kept alive by artificial means if she was ever determined to be terminally ill. Her chronic stage 4 kidney disease combined with advanced dementia makes the decision crystal clear and the difficulties that would ensue are what she wanted to avoid. I continue to spoon feed her until she refuses to eat any more. It's becoming a struggle and Hospice is amazed at my tenacity and mom's cooperativeness, up to a point. She has lived a week since they had predicted 24-48 hours for her. I should point out that the nurse was clear that she couldn't absolutely say for sure, but this was in the context of me saying whatever final words I had that needed to be said to her before she passed. I do appreciate their suggestion and have heeded that advice. I have said my special words to mom and know that I won't feel badly later due to procrastination. She is at peace it seems and so am I. The rest is in God's hands. I'm sure that the end isn't far off, but I'm doing my best to keep her going. Thank you for this post. Best Wishes, -- Joe --
Hi Joseph
You must be having such a stressful time at the moment. Your love and attention seem to be keeping her with you. I have heard many times from nurses who work in Hospice care that sometimes loved ones seem stay until those they will leave behind say it is ok for them to go. Like they want to know you are going to be able to cope when they do die.
All my very best wishes to you Joseph. My Pa is very ill at the moment and I suppose I am the same, although he has still a way to go before he needs hospice care. It is very hard to let them go.
Christine
Excellent suggestions, Christine, on a subject little is written about -- and which causes a lot of (justifiable) anxiety among caregivers. For furthe information about swallowing problems (dysphagia) in persons with Alzheimer's disease, Parkinson's disease, and other neurologic problems, see the recently-published book "SWALLOW SAFELY: How Swallowing Problems Threaten the Elderly and Others. A Caregiver's Guide to Recognition, Treatment, and Prevention." The book is available through www.SwallowSafely.com and Amazon.com.
Christine,
This is great post. I now understand more about swallowing. About the nasal tubing you are talking about, I think it is hard for them to tolerate it. I had it once when I was sick and it hurt my throat after 1 day or 2. It is just impossible although I had to tolerate it for a week or so.
I think in general tubing for feeding is bad for dementia elders, but it is up to the person and family.
Regards,
Nina
Thank you for this post. I wanted to share my experience with my father. His dementia is not advanced but did develop difficulty swallowing, so the doctor ordered thickened liquids. To everyone's dismay, he refused the liquids. He described the texture as like "snot". He confused "thickened water" with "heavy water" and thought they were giving him irradiated liquids. He was frankly afraid of water that was thickened because it looked contaminated. And most of the other thickened liquids tasted "nasty." The wonderful staff tried everything but my father became so dehydrated that he couldn't get out of bed. Finally the staff has been able to coax him to take more liquids in foods like soup and he will drink coffee thickened. He seems to be improving now, but I wanted to share these challenges with offering "thickened" liquids to those loved ones with Alzheimers.
Thank you for your article. Very helpful. My wife at end stage Alzheimer's can be hand fed at breakfat and lunch with very little coughing/choking. Food is pureed and liquids thickenend. However in late afternoon before dinner she starts moist coughing a lot then at dinner can hardly take a small bite with coughing etc.
Is this fatigue related? Maybe skip dinner or just ice cream or ?
Thank you again.
Bob Grady
I'd suggest giving her whatever she can take without too much coughing. You suggested ice cream. If that works, why not? Maybe jello, as well? Pudding? But ice cream melts on the way down, so that may work best. Sometimes we have to forget nutrition and go with what they can safely swallow. Take care,
Carol
My father-in-law is like your Mom taking just the same kind of food but he has not had this situation yet. Maybe it coule be heartburn (sometimes it may cause a little coughing for normal people but it is less common) but it may be that she has has food down there in her throat.
It is not fatigue. It is about swallowing. Or she may have a little bit of allergy or cold. So ask the doctor what to do.
Regards,
NC
Wonderful comments, Christine. People may also be interested in a book I reviews (written by two doctors) titled Swallow Safely. Here's a link to my review:
http://www.mindingoureldersblogs.com/2010/07/swallow-safely-timely-book-for-elders-and-caregivers.html
Thanks for a great article.
Carol