After over a year and a half of nothing by mouth - only a JPEG tube - my husband is now able to eat and ENJOY yogurt, applesauce, custard, coffee, water, and mashed potatoes and gravy!!! Who could have anticipated this? About three weeks ago I had to put him in a personal care home. This is a private home with a couple who have years of experience caring for older individuals. They take in two people to care for. Currently, they only have my husband and he is getting spoiled with all the attention!
The man of the couple is the cook and he was really frustrated that my husband could not swallow. He was anticipating being able to cook regular meals. I'm not really sure how they got the idea to try feeding him but I am so happy that they did. This has made my husband really perk up and he loves it so much. The hospice nurse has checked with the doctor and they both approve and encourage this feeding. Just cautioning them to be very careful.
Has anyone else ever had this happen? Can anyone explain the physiology behind it? Nothing else about my husband has improved. It is all a down hill path. And, needless to say, I feel guilty that I didn't try this for all the time I had him at home. All we ever tried was a little coffee every now and then which he managed to swallow most of the time with a little coughing.
Caroline
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carolinesimmons
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First of all where on earth did you find a personal care home that only takes two people?! , sounds like a perfect solution and how did you get the hospice involved, our hospice has told us that they cannot help us.
But seriously, up until recently my husband has fed himself quite well, the food is mashed or chopped small and he has managed it, but I now have to feed him a lot myself, either way he coughs and chokes a lot, but we manage. He will not have a PEG.
These homes are hard to find because people don't want to share the information. I got my information from my daughter who works for a church (not her church). They had had several members who were cared for here. But when I worked for hospice (for 18 years) I was privy to the location of a number of these homes. Some people do it for extra money, others feel they have a calling to do it. And I guess there are as many reasons in between. Call your hospice social worker and ask her if she knows of any homes like this.
Our local hospice came out once to assess my husband and declined to take him. Then several months later they came again and took him. He had changed dramatically over six months or so. Hope this helps.
Caroline
Hi Caroline
Good to hear your husband is being cared for so well. I guess only a speech/swallowing specialist can answer your query. I suspect that the cranial nerves and associated control areas responsible for your husband's swallowing have had little to do except help with swallowing saliva. Although damaged, the swallowing reflex has "kicked in" again with the stimulus of "food" entering his mouth. As we know from other symptoms of PSP, intermittent "bright spots" do occur as the brain receives the occasional extra stimulation.
May he continue to enjoy his food as long as possible, and it's good to have the approval of the nurse/doctor (with caution).
I know this is with regard to the eating-thru-mouth retraining. I would like to share my experience with you all about my husband's retraining of the bladder. He was on a catheter in the penis with a bag attached after his fall last year in Oct 2012. He was on the catheter for almost 2 months-- with all the added-on urinary tract infections, fever etc.. Around Dec 22, the urologist told me that they could have a supra pubic catheter inserted.
So the procedure was done on Dec 28th, 2012. I asked them how long would this be in him-- they told me it could be anything from 4 mths to 15 years. They also told me that the bladder could be retrained ...So this is what I would do. When my husband would indicate that he wanted to pass urine, I wouldn't release the clamp. Would tell him to pass as much as possible thru the regular way-- it could be 5 cc or 10 cc- then would release the clamp and release the rest of the urine. By March 1st week of this year, the equation had changed-- major amt thru the penis and around 10 cc or less through the tube. Mentioned this to the the urologist who was surprised at this very quick recovery . Did his urometric tests and the tube came out on March 15th of this year.
From then till now, he is passing urine thru the regular route. A couple of weeks ago we got a sono done for prevoid and post void urine-- and the post void was 7 cc.. All of us are happy.
As far as eating goes, my husband used to use his fingers and the spoon and eat normally. Now he is unable to collect the food with his fingers to put into his mouth. So I help him -- sometimes he does it and most of the time I feed him. Lots of people have told me that maybe mashed food will help.. but my contention is -- till the time his jaws are moving and he can chew, I want him to eat normal food -- and this is like a mouth exercise too .. he sometimes chokes, but then a big sneeze gets it all out same way with liquids-- i have a sippy cup for emergencies -- otherwise I give him with a steel tumbler with a rim on the edge-- he inhales the liquids-- so some inhalation is done hand over tablets in his hand -- and he tries to swallow- if not he just bites it and swallows it-- thankfully he has only sinemet twice and they are not of the delayed release variety too
So what I personally feel is - the more we try to normalise things, everything will work-- the brain will retrain itself -- maybe i am being very optimistic-- but atleast to a certain extent we can postpone the deterioration.
hope this helps ..
padma
Just a quick PS
Studies have been carried out relating to the possibility of oral feeding AFTER PEG insertion:
I agree with you Pram about keeping things as normal as you can for as long as you can. I think that some professional carers are very prone to introduce aids prematurely. I remember when I visited Mum in hospital after one of her falls seeing her drink from a spouted feeding cup. I was dismayed, one, because it seemed to indicate a deterioration in her condition and, two, because I had failed to see this need at home. I went straight out and bought one. Unfortunately there are no pretty china ones to lessen the blow. However when Mum came home she refused to use it, ever. I believe she felt shamed by it. And more than anything else it is the psychological, holistic, approach to over-all care that has to be considered. Well done you.
My mum had a stroke a really bad one and was given a PEG straight away . After a while in the nursing home they started to try her with a spoon and hey bingo . She continued to have both the peg and oral feeding she loved another three years without any trouble .
My husband also uses his fingers until I see he is struggling toooo much then I step in .
As a matter of fact I think he finds it easier to have small amounts f solids rather then mash he can control it better
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same way with liquids-- i have a sippy cup for emergencies -- otherwise I give him with a steel tumbler with a rim on the edge-- he inhales the liquids-- so some inhalation is done
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