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Hi All, 

 

Just needing more help with dad. Dad is still on an NG feeding tube but has also been allowed to have a purified diet and normal liquids. The SALT team assessed him last week and he has been on a purified diet ever since. Over the weekend and on Monday he ate well. However, yesterday and today he has refused all food apart from a yoghurt. His NG feeding tube is giving him all the nutrients he needs but dad is just being stubborn dad and refusing to eat any of the purified food.

Yesterday he told us it looked disgusting and he was able to stand his fork in it and the fork didn't move!! In all honesty I don't blame him for not eating it. 

My sister and I had a serious talk to him and stressed the importance of eating otherwise his NG tube wouldn't come out and he would take a backward step in his rehab. He thinks we are nagging him. 

 

The problem is we would love to be able to take treats and nice things in for him but he isn't allowed anything at the moment. We just don't want this to be a sticking point in his recovery. 

 

Personally, I think dad would be able to manage a normal diet as his swallow is excellent. We just need to wait for the official sign off. 

 

The news that he refused to eat this morning has come as a bit of a blow. We had a positive day yesterday with a great report from occupational therapy. Dad even started writing his own log of visitors in a little book we have left by his bedside - he refused to write for the OT. 

 

We would offer to go in during meal times but I am not sure that will make much difference as dad has always been very stubborn and even more so after his SAH. 

 

Thanks

 

James

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James

 

Don't think I can be much help but I suggest you arrange a meting with the doctors involved in his care to discuss the feeding issues. Maybe if you all sat down - with dad- and discussed why he still has the tube and pureed food he and the doctors may understand a bit better.

 

Hope you resolve things!

 

Clare

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Hi James,

 

I liked everything they put in front of me or so my daughter has told me.

My Husband and Daughter know I love pie and mash so they didn't give me the pastry but scooped out the middle of the pies added mash and parsley sauce with a bit of seasoning they said I woofed it down, sounds about right lol.

 

Good luck on the food xx

 

Win xx

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Check it's ok with team but maybe ask if it's ok to take in little pots of things like ambrosia yogurt and rice puddings, there are some fabulous compote things out there too and then make sure he is having those whilst you are visiting. You could bring him in some nice thin soup or take a small tub of ice cream if you can get it in in an cool bag without melting, oh I loved that when a friend did that for me :) but don't do it without checking first medically and ask them if they agree for suggestions of what you can supplement with. I had build up drinks galore and yes they taste disgusting !

Tell him yes you are nagging him but he would do the same for you and not eating is like trying to proceed to the 18th hole without teeing off and no clubs , you can't get there!! Channel his stubbornness into getting through this. Unfortunately he needs to prove to them that he can swallow well and consistently. Boring? Yes Horrid food, absolutely. I used to post pictures on my FB page on a later hospital stay and get people guessing!! Rarely were they correct.

Good he wrote the diary, that's a great one, maybe put some pictures up so he reminds himself he's not alone in this . Leave him little encouraging notes or 'funnies' stuck up, it keeps the spirits lifted, could be he has hit a bit of doom and gloom which is understandable and gets us all. It's hard.

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Hey all! Thanks for the responses. So - good news...the SALT team have been today and he is now on soft foods as part of a normal diet! Hurrah!!! He has had a digestive biscuit, three quarters of a banana and cauliflower cheese for dinner! Thank goodness. Mum also bought some small yoghurts and he has had one tonight during visiting. He has also been put on the waiting list to move onto the specialist neurological rehab ward rather than stroke rehab! Brilliant news. Bad news - he has a ****** cold now!!!!

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Hi James, been AWOL without internet for the last few days, but great to hear that your Dad is eating and about the rehab ward.  My Dad was admitted to a neuro rehab ward today, feels really strange leaving him there after him being home for a while, but after the few little tests that were done (the first he's had to assess him in any way cognitively) we know that he needs the input. It is so calm in the ward that Dad is in, I'm sure it will be an absolute tonic for your Dad if his hospital ward was anywhere near as manic as my Dad's was!

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  • 2 weeks later...

I can tell you it took me over a year to get my eating/weight under control.  I kept not eating as much as I needed and had to be creative to find ways to add hidden calories to my diet.  Full on ice cream, whole milk, custards, etc.  I still do this.  When I was on the NG tube, they wanted me to eat after a bit, but they were as you said, giving me all the nutrition I needed through the tube...so...I didn't want to eat or need to.

Once they started withdrawing some of the tub feeds, I was more hungry and began eating more willingly.  At first though, it was just stuffing things down to please everyone else but myself.

 

Sometimes women are better at this, but not always...I can see why your dad really feels no desire to eat unpleasant stuff.  I hope this is a hurdle that he will get over, he'll do it on his own schedule though.  The next stage for me was equally as humiliating as my husband had to cut up all my meat because I couldn't use my hands very well.  Then that stage was done and it was on to the next thing.

Once you realize the pattern, you just live in the moment and do what you can on that day and nothing is really a 'fight' anymore, because you are compassionate to yourself for how hard it is and others can do what they do and worry about what they're going to worry about.

 

~Kris

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  • 3 months later...

When I could finally eat, I ate everything the hospital/rehab put in front of me.

 

I went home on a pretty regular diet, since my swallowing had improved so much.  Nothing bad happened until I was alone, eating a salad.   A small piece of lettuce was blocking my airway, making it nearly impossible to breathe.  (I remember thinking, "Oh great, I survive a stroke only to be done in by a salad!")  I managed to remove it, and it was YEARS before I attempted salad again!

 

For years I had a habit of coughing whenever I drank something.  (Trust me, my computer screen got sprayed with coffee on more than one occasion)  I tried drinking with a straw for a while; then realized if I <really> took my time, I was usually okay.  (My pc screen was safe)

 

I'm almost 20 years post now, and I've learned to take my time, small bites, have a sip of water or something between bites, and to lower my chin to my chest when I'm swallowing; it works.

 

Susan :)

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Sue sounds like a panic attack, I am not a Doc but my Daughter gets them and she wont eat out. 

 

She'll have a water but that's all.  We took her to see Doc and the Doc checked her heart etc  and told  her " its a form of anxiety and your lungs and heart are fine " which cheered her up no end for 3 months until she choked again.

 

Do you get a dry mouth if so I suggest carry peppermints and a water with you as I found that if she has a panic attack her mouth dries up and she needs water also.

 

See Doctor and see what they think, and good luck xx

 

Win xx xx Horrid isn't it xxxx

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