Still Hanging in There..

Hi all

Its been a long time since I have been on here. Mum is now in her 10th year of CBD and is in the advanced stages. She is unable to move or communicate (except with her eyes), has double incontinence and is having great difficulty swallowing. she is on a pureed diet but this is now a struggle and she has long coughing bouts which involve her bringing up the food again. This regurgitation is becoming daily and every time I feed her. I want to call in the GP but my Father who is her main carer says its the way I am feeding her, and that she never regurgitates when he feeds her. He is saying he doesn't want any more interference from the medical team as he is worried that she will get taken into hospital. I have the dietician and SALT appointment next week to discuss again the PEG feeding dilemma with us as my Mother still has mental capacity.

Does anyone have any experience of regurgitation and CBD?

I am feeling overwhelmed at the moment..

Thanks in advance for any advice received..

[Kevin_1]

Hi Martina

I'm sorry, but that it not something we have had to deal with. Hopefully someone else will answer more specifically.

I am aware that vomiting can be a symptom of severe constipation though and that would be serious and need immediate intervention.

Perhaps get your father to show you how he feeds her? Naughty, but it would get the issue open and on the table.

I expect the SALT nurse will be very helpful with this issue, but if it is constipation that would be too urgent to wait.

The medical team cannot force her to go into a nursing home - period. It is her choice.

I hope this helps. Ten years is a lot of struggle and suffering.

Warmly

Kevin

[Dadshelper]

Dad,CBD, never went through any phase of regurgitation unless something else was wrong. He got a bowel blockage once and that lead to massive amounts of vomiting and diarrhea as his body was trying to clear the blockage. This resulted in surgery, which was a do or die situation. He managed to eat until the end but it was a very slow process.

Ron

[Kathrin87]

Hi Martina12, my mother has CBD , she can't move or talk proper except some few word such as yes or no, but it takes 1-2 hour for her to be done with a meal of food

[kenh1]

Never had any problems with regurgitation and any hint of constipation was cleared up by nurses with suppositories and enemas. Best wishes. Ken.

[Birdman34265]

You could get test done for swallowing called Videofluoroscopy which

may show up some problems,also puree food should be soft.

Hope it helps ,, Peter

[Hidden]

Hi all thanks for all your replies I am truly grateful. I have an update..my Mother was admitted to hospital for severe constipation. She had a phosphate enema and this cleared the blockage. She is still in hospital but the suppositories are not shifting another blockage...the nightmare of all this continues. I think another phosphate enema is on the horizon..

[SewBears in reply to Hidden]

Thanks for the update about your mom. Wow, you’ve all been through so much! I feel for you. My husband had trouble just this week and we had to cancel his weekly PT appointment. Eventually the problem solved itself but after reading this post I was all set to take him to the hospital. I make a wicked oatmeal with lots of chopped up raisins and that seemed to do the trick along with stool softeners so I feel like we dodged a bullet this time. There are so many things that can happen with this disease that you have to be on the lookout for everything! Since he skipped PT he’s been complaining of weak and sore legs. I talked about having him do his exercises here at home with me but he was stubborn about it so I relented and let it go.

I hope your mom gets over the second hurdle. Keep up the great care, it’s exhausting!

❤️ from I SewBears

[dollydott]

Hi. I faced the same challenge when i cared for my grandma in later stages she always used to cough and choke. With mum not so much. We got the physio to see grandma and she got a cough assist machine. Which she used twice daily to help her to cough as she lost her ability to do so. This helped her reduce infections which unfortunately aspirated food/fluids can do. My mum maybe like you dad was a proffesional at feeding even though it could take an hour just to eat a small amount.

Good luck

Xx