Terrifying

[Careenh]

Last night mum suffered the most horrendous choking episode. I really thought she was going to die. I felt so helpless... and I could see she was afraid. After things settled down and she was calmer she spelt out 'drowning ' on her letter board.. . This must be what it feels like. Not sure that I can cope much longer seeing her suffer like this. I am in a bad place today....

[Escada29]

Hi I know just how you feel totally terrifying. We had an episode last night with a coffee and jaffa cake I think my nerves can't take much more. x

[Yvonneandgeorge in reply to Escada29]

Yes us too, on mashed dinner, I hate it so much xxxx

[Zeberdee]

We too had a dreadful choking episode a couple of days ago and it is absolutely terrifying. Nerves on edge with every drink and small amount of food. Jxx

[Marie_14]

Careenh has your Mum got patches to help stop this happening? Has she got thickener for her drinks? Have you got a suction machine to help? If I have forgotten anything people can you please add?

Hugs to you. It is a frightening time.

Love from Marie x

[Careenh in reply to Marie_14]

Hi Marie, yes she has thickeners. Seeing the GP about suction and patches. This happened out of nowhere... she wasn't eating or drinking so I'm guessing it's a build up. God I hate this disease!! X

[Marie_14 in reply to Careenh]

Careenh sadly this can happen even when the person isn't eating or drinking! The saliva becomes thick and stringy and causes the choking.

Eastern has given you the names of the best medication. I don't know where you live but I couldn't get Atropine for my husband and struggled to get Glycopyrrolate. He only got that the day before he died! He had a patch which I can't recall the name of now. Anyone out there know what I mean?

You need the support of your doctor for anything but you also need help from the OT. If you are near a Hospice contact them. They are very good at offering support. You need support as does your poor Mum.

Hope you get that help asap. Don't forget the PSP Association too. In fact a Parkinson's nurse I rang on their Helpline was really helpful too. I felt so desperate at the time. She was able to tell me how long she thought my husband had left. Nobody else could or would! She was right by the way! Bearing in mind of course people can die if they aspirate. This happens to many but yet they pull through, so it really is different for everyone. Just remember we are here for you.

Hugs to you.

Marie x

[LuisRodicioRodicio in reply to Marie_14]

Please. What is "patches"?

Thank you.

Luis

[Marie_14 in reply to LuisRodicioRodicio]

Luis they are small pieces of plastic with a drug in them which helps stop drooling and makes dries up the stringy phlem for a while. It doesn't work for everyone but my husband had a lot of relief from using them. They are usually stuck just behind the ear.

Marie x

[LuisRodicioRodicio in reply to Marie_14]

Thank you.

Regards.

Luis

[easterncedar]

It is frightening! The suction machine helped, also atropine, then glycopyrrolate for the gluey saliva. When he was coughing, my guy liked to have help raising his arms above his head. He said maybe this action helped to open his airway, but for sure it helped keep him from panicking, because he had something to do.

[Jafarrar]

I have not had to go through this as of now. But I know I will be terrified also. My heart hurts for all of you going through this now. Lord Jesus I lift up these wonderful friends taking care of their loved ones that are so sick and chocking Lord send your peace and mercy to be with them send yourAngels to comfort them and lift them up when they are down renew their strength and bring sunshine to lighten their days. In Jesus precious name Amen.

[Althea-c in reply to Jafarrar]

Much appreciated prayer.

Althea🙏

[Spiralsparkle]

Big hugs to you. Hope the GP gets the other bits sorted for you quickly.

Xc

[Melhukin]

I know how you feel.

You feel helpless as you can’t do anything, you just have to sit there and watch them until they control their throat muscles.

It’s the expression on my dads face that haunts me when he’s choking. The look in his eyes that makes me think is this the end? It’s terrifying.

I’m not sure when the medical profession/the nursing home/or the family decide when a peg should be fitted?

Heartbreaking. X

[Julieandrog]

Hi

Had a long discussion on my own with the hospice cons last week as rog has had exactly what you guys described. He has declined a peg and i support him in that.

His last wishes which are documented dictate no treatment for choking. My fear was a paramedic would come racing in wanting to do their job , and his last moments would be fear, with me trying to keep everything together.

Wise Dr. Suggested a few things, laminate a sheet of instructions to keep with dnr etc so you can just hand it over, things like they can just try simple suction,monitor his O2 levels for a short while and maybe give a little oxygen, if his wish is to stay at home they can get docs and DN's in to give meds to alliviate any aggitation.

He also told me there is a document being rolled out to emergency services with accompanying training called Respect which highlights the needs and legalities of treating palliative care patients.

To finish the patches are called hyoscine worked well for a while, atropine is not licensed for oral use but we use it 4 drops four times a day max dose, not sure how well it works though.

Julie

[Marie_14 in reply to Julieandrog]

Julie thank you for the name of the patches. I totally forgot the name of them! They worked for my husband for a few months and gave him great relief from all the drooling and so on. I can still see the smile on his face when I told him how well they were working. It's all so sad this disease. I hope they find a cure asap.

Marie x

[Kevin_1]

Hi Careenh

The choking is a terrible thing. I feel so helpless when it is happening.

I hope you get into a better place soon.

Warmly

Kevin