Erin Concannon

Lots of soups and milkshakes?

Gosh that is a tough one Jenny- My Grandpa had a feeding tube put in, and My Uncle, he was able to swallow up until his passing....

Lots of soft easy foods is my suggestion and I guess continue to serve them on a dinner plate so you don't get "the look".

Best of luck! xo

20 months ago

Kristi

This is a really hard stage.  My mom went through it february of last year, it made her so upset she ended up having to get a feeding tube.  But now she does not use the feeding tube because we put all the food in a blender and chop it up and serve it to her like that.  We had to do the same thing with my moms twin sister before she recentely passed away.  As hard as it is for you to do that for him you are going to have to do what is best for him, even if he doesn't want that.  Just stick by his side and keep positive, and make sure you let him know that you are by his side through everything. 

20 months ago

Heather

Hey...I would start giving some ensure.  It is what they put in tubes. He might not be ready for one yet, If he is not eating. It has the vitiamins. You can feed it through a straw. I take ensure. My Mom took it. She never fought me when I was looking after her in the hospital. . Along witth the soups and shakes. I am using ensure too, to gain weight. Change is hard for us to grasp. You should of seenme when my famiily wanted me in home care. He will adjust. It takes us time. My Mom consatatly tried to escape the hospital. Give him time.

19 months ago

Chris

When my mom first went into the nursing home, she could chew and swallow fairly well. She began getting to the point where she would choke occasionally because her throat muscles just weren't working as they should have been so she would drink a lot of liquids to push the food down. When we finally convinced her that it wasn't safe, a speech therapist suggested taking a bite, tilting her head down so her chin rested on her chest and then trying to swallow. It seemed to help her, when we could be there to keep her on track. We had to keep pushing once that wasn't enough though. My mom loved food almost as much as her independence and going from solid to pureed was just one more thing that was being taken away from her. But, as already stated, patience and letting her know we were doing it for her and not to her was how we all got through it. It is a very tough stage for everyone, here are some links that helped us from time to time:

Recipes:  http://www.hdac.org/recipe/index.php

Caregiver's Guide:  http://huntingtondisease.tripod.com/advancedstagesofhd/id6.html

Hope this helps.

- Chris

19 months ago

jenny

Thanks for all your input guys! All will be taken on board. The voice of experience is a very valuable resource.

Thank you Chris for the links...the Caregiver's Guide was particularly helpful.

(((hugs))) to all of you. jenny

19 months ago

Carlie

Hi Jenny,  I'm sorry to hear things are getting so tough you guys.  It's just awful.  I know this wont help with meal issues but the when I called the NSW Huntington's Association they put me in touch with someone who could supply me with Sustagen in bulk at cost price.  It was the puddings as well as the drinks and they are great for keeping the weight on as well as giving you some extra vitamins etc.   The puddings can be made into yoghurts and custards as well as puddings depending on how much liquid you add plus you can vary them quite a bit with different flavours etc.  I will look up her details for you when I get home this afternoon, hopefully he will like them, they will send you quite a few samples to make sure he likes them before you purchase any as well.
Sending you big hugs.
Carls xo

19 months ago

Kreg

Well...in a word , be pro-active. You say the activity exhausts him. I believe he's at the stage of being fed. Let him start the meal and then you or someone else should step in and help him finish. Ask politely if he would like the help.

Also, did you take him to get a swallowing test?! You need to inform yourself of the different thicknesses/consistancies of liquid and food,i..e. honey thick,pudding thick, using thickeners. I think you are beyond modifying his eating utensils to helping him navigate his meal. And remember to monitor how much he actually eats.

Keep an "everyday journal" monitoring everything, EVERYTHING! Contacts,observations,appointments,follow-ups,weight,meds,EVERYTHING.

That's my preach at my caregivers supportgroup that I facilitate. Keeping a journal with ALL this pertainent information at arms reach is a HUGE relief for caregivers!!! It's the secret weapon of caregiver's...when everything goes haywire,your journal will be your greatest resource!!! It is where you can control  of HD,instead of it controlling you .Keep it organized!

I can shoot you some of my supportgroup copies of the things in your journal you should keep.

Best Wishes,

Kreg

19 months ago

Melinda

My mom has been having similar problems. We do find that eating things with a spoon makes it a lot easier for her. I cut up food small, moisten it if necessary to make softer, mash it, etc...Then I let her try with a fork first if it's a food that should be eaten with a fork. If I see she's having difficulty, I just say, "here, try this it might be easier," and hand her the spoon.

As far as what to make and trying to get a response from them about what they would like to eat, we've found that if you just make the food and give it to them WITHOUT asking what they want, it makes it A LOT easier. If we ask mom what she wants for her meal, she usually says that she already had something, or she will say something completely unrelated, like "well i just had my pills, or i don't know I had some water." I'm sure you know what type of things he likes to eat, so if you try to just make them (and modify them so he can eat them) and try just having him wait for the food, and then you put it front of him and then eat while he eats his. That's my suggestion cause that's what we do with my mom. Also, lots of ensure, "thick-it thickener in liquids", and pudding, yogurt, jello salad, pasta, etc are some easy foods.

As far as bowl vs. plate, there is a product called a plate guard that might work. It gives you an edge around that plate. You can get through an Occupational therapist, or ask doctor. Keeps food from flinging around while still letting them use plate, or maybe try a plate with the higher rim around the edge. or a bowl that is not too deep, somewhere between a plate and bowl.

Let me know if you have any other questions, my moms going through same thing.

take care,

melinda

19 months ago