I am looking for help feeding my son please (dementia, family, mother)

[Sy01]

I am Korean in case anyone can help or has references. I am getting help from another user and trying fixing things with my husband so I'm very happy for this community. I Would like to know if anyone can help my situation until we can get further help. My son and I have always been very very close even though we have not seen each other in a long time before the injury and I wish to not forget him and do what I can for him and make him comfortable.

My son is 25. He is slightly underweight because he was recovering from an eating disorder and some damage before the injury. A bit back ago he came home from the hospital after he have suffered severe TBI. He suffers vision problems for which she is getting another appointment in a few days, he can see us and a family member and reacts. He also responds to me talking to him and reading to him even though he cannot understand or speak. He is often dead weight as he gets very confused but he has been a little more alert recently. I would like some help understanding or help with the feeding. I am scared to use a tube because I do not like the sound of it and he has been prone to ulcers and infections before and I know these can cause those problems.

He lays down mostly but now for some hours through the day he will sit back reclined with support from pregnancy pillows or sit reclined in my arms. There are more opportunities to try having a meal when sitting but most don't go well. He is capable of opening his mouth for spoon or a suringe. He will move food with his tongue or lightly with his jaw. I cannot get him to take more than 5 bites of food in that time. It will be mashed vegetables or blending rice with a little salt. He will take a few drinks of Gonttomil shake or milk every couple hours, from a serving spoon or a handled lid cup. No soup or juice or shake I make. He will not have water unless it is in the food or milk or Gonttomil shake. He had some of his favorite food yesterday which was much easier to keep focus but cannot eat that all the time. He will not eat anything my husband feeds him and he will stop any eating when husband is even at home, fortunately husband is mostly working or going out for the night. Son likes a lot of coaxing and responds well but husband told me to not do that.

He made a little progress the first week home but has since went back or stopped. I made ice pops and he liked them but could not handle the cold. I bought a mesh pacifier dummy for fruits and vegetables that I can use instead of the spoon and he seems to enjoy it but cannot do it for very long at one time. He's getting there because now he likes to help hold the handles of his cup by holding my hands, or holding my hand when I put the spoon to his mouth but has a very loose grip.

The minimum he will eat is half the shake and some mash from the dummy or five bites. He is not terribly hungry because he will get an unsettled mood swing or fall asleep during feeding or after a failed attempt at eating. I understand he has a small stomach but he needs to eat. The biggest meal he had was at yesterday morning and it had a whole serving of shake, a mash of 2 radishes and cucumber, mashed nashi, and a few bites of my salad and mushroom soup.

[Sassybluesy]

Does his doctor think he's underweight? I understand he's thinner than you'd like, but does his doctor think he's malnourished?


When you say you don't want to use a tube, are you talking about a stomach tube? Maybe a visiting nurse could train you on the usage, so you'd be more comfortable with it.


Can he swallow food ok? I'm wondering if you could get a baby syringe and just...squirt the food in? If he's able to swallow OK, that might work. Can he suck on a straw?

[germaine2626]

You probably will get more responses on the caregiving forum.

I have had several/many students with feeding tubes and it is not as scary or hard as you may be thinking. I also had some students who ate a little by month but received most of their nutrition from a stomach tube. Of course, this is something that you need to work with a nutrition specialist and his doctor to figure out what is best for your son. Also, discuss with the nutritionist about ways that your husband, and/or a health care aide, can take over more feedings to your son. If everything falls on your shoulders you may "burn out" quickly.

I am not familiar with Gonttomil shake. In the US we have several types of high calorie and high vitamin filled shakes like Ensure and Boost. They are about 220 calories for the regular and 350 calories for the Ensure Plus or Boost Plus.

My late husband, with dementia and a Traumatic Brain injury, drank a very high calorie shake (in addition to eating "mechanical soft" (very finely chopped food or foods like mashed potatoes) or pureed food. I do not know the name of the shake but it was designed to be used in tube feedings and had something like 650 calories per shake. So, one shake would take the place of three shakes of Ensure or Boost.

They also make things like very, very high calorie ice cream, Jell-O, and soups which your son may like. These have to be specially ordered and you may need a prescription from his doctor (at least in the US).

Caring for someone with a TBI can be quite difficult. Please get, and use, all the services that are available to you. Good luck.

[CraigCreek]

My mother's ability to eat foods with certain textures was affected by a severe stroke. However, she could still manage mashed potatoes, apple sauce, ice cream, pudding, oatmeal, milk shakes, and scrambled eggs, plus other foods if they were blended first. I obtained Meals on Wheels for her, which provided two meals a day that were blended to textures she could safely eat.

There is also a product called "Thick-it", which can be added to drinks to thicken them to a safe texture. Thus, fruit juices and even water can be made safe. It does not require a prescription and is often available at pharmacies.

It is important for him to be sitting upright when he is eating, and for a short while afterwards, to make sure he doesn't swallow his food the wrong way and choke. Can he drink from a straw?

If he has a hospital bed, it could be adjusted to an upright position to make it easier for him to eat. Does he have a wheelchair? It would also be safe for him to eat while seated in a wheelchair. Lying down or even reclining too much can make it difficult and uncomfortable to eat or drink, due to reflux.

A dietician could provide more suggestions and guidance. Call the hospital where your son was treated and ask to speak with a dietician.

Your son is blessed to have you caring for him. Best wishes to you and your family.

[Scorpio60]

I am a caregiver for my Mom who can't chew. I use my food processor for boiled chicken breasts so the chicken gets ground up. Then I take a can of chicken soup and add the ground chicken to it and cook it so it ends up like a soup.

I also use my blender to blend green leafy veggies with a banana (I add almond milk to that). It tastes delicious and my Mom loves it.

Look up blender foods.

Good luck with your son!

[JackieLovesSun]

this sounds so hard for you and I hope you can get some help.

can you ask your son's doctor to order therapy for him? Speech Therapy addresses swallowing and Occupational Therapy positioning, either or both might be appropriate.

I wish you good luck with this.