I have taken care of Mom for 6 years now, she has gone from nearly full functioning to now I have to feed her. I have been feeding her for about 4 months now and I have a situation that she burps or belches after taking a bite and then chokes. I have reduced the severity by smaller bites and waiting more time between bites and drinks of liquid in between also helps. The other problem is that she is type one diabetic and skinny as a rail. 5-7 and 100lbs. It has been a battle to keep weight on her the whole time she has been with me. It now takes about an hour for me to feed her. She has had more trouble kind of choking off and on, especially at nite. Is this the way that some LBD patients die? Any suggestions?---Jack

Jack,

You are a wonderful caregiver -- taking the time to feed your Mom slowly and with so much patience. What she is probably experiencing is quite common: difficulty swallowing. You might try an antacid before meals to help reduce the belching. To help her swallow, you need to thicken the liquids and puree the solid food. You can buy a can of ThickIt, a powdery substance to stir into liquids. It helps. Pureeing the food bypasses the chewing process somewhat and helps the food go down easier and faster.

Some people like the enriched liquids like Ensure, and which are already thick. Then there is applesauce, puddings and ice cream -- all easier to get down. If she likes yogurt or soft tofu, those are also good and healthy.

This condition will probably not get any better, so keep up the slow feeding. My husband who always loved to eat now also has to be fed slowly, but he still enjoys having the food in his mouth, especially when it is tasty.

Doris

Doris is correct that, when there is a swallowing problem, liquids should sometimes be thickened. Thin liquids are the most likely to be aspirated. They often seem to be going down fine, but, if you see an x-ray image of someone with dysphagia swallowing thin liquids, you can see that they are seeping into the trachea.

Speech pathologists are trained in swallowing evaluation. If you have access to one through your doctor, he/she would be able to best advise you. It could be your mother is not ready for that level of modification but it would be reassuring to know.
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Pat [64] married to Derek [80] for 34 years; husband dx PDD/LBD 2005, probably began 2002-2003; Stage 4. I am his caregiver at home.
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Jack,

I think the most common cause of death for someone with LBD is pneumonia. Second might be falling. Probably somewhere on the list, but low down, is choking on food.

Over the last 6 years, we've probably had 300+ people come through our local support group. Maybe we've seen 70+ deaths. I only know of one person in the last 6 years who died from choking on food (and that was about 3 weeks ago).

It took nearly 2 hours for each meal to feed my father. I ended up hiring someone to do this because I didn't have the patience for it.

You could speak with the MD about a medication that may reduce the burping/belching. Nexium might work.

To reduce nighttime choking on saliva, consider a humidifier, loratadine, gauifenesin, and elevating the head of the bed.

Robin

Thanks Robin. I also am not very patient. I pass the time with a laptop computer. I am glad to hear that choking is not a leading cause of death. I am giving her smaller and smaller bites and washing each down with a little liquid. I am also demanding that all others who help me do the same. I guess the next step is baby food. Anyone have any suggestions?

Has your mother had a swallow study done recently? Ask the neurologist to order one.

The risk with dysphagia [swallowing difficulty] is not choking but aspiration pneumonia.

I guess with the problem of pneumonia, I am doing the right thing. I walk mom about 1000 ft a day round trip. I also have her sit in a chair a lot and have her head elevated on her bed. Any other suggestions? Thanks for all of your help everyone!----Jack

Thickit, pureed foods, liquid prilosec or nexium and patience. All great advice, I did all the above and it probably kept Mom going for a few months. She developed pneumonia last week however, there isn't much you can do but the things that have been suggested above.

I wish you the best, you are a wonderful son
Nancy

NancyC,
Sorry to hear about the pneumonia. Is this the first time she's had it?
Robin

Yes Robin it was the first time she had it. She developed symptoms of dysphagia about a month ago. And the congestion actually most of that cleared in her lungs even without antibiotics but her body has just worn out from the fight of it all at this point.