What happens when swallow goes?

[Tias mum]

Mum was moved to a nursing home a week ago and we found out on friday that she has only taken less than 500ml of fluid in a week. I went in yesterday and managed to get some jelly and a milky bar desert down her. Today I went and tried to give her weetabix and some tea. She seems to be storing food in her mouth. The home have spoken to the on call dr and they advised thickening the liquids as a precaution and will get an emergency SALT assessment tomorrow.
I don't know what to do. We have a DNR in place and have decided she is not to be admitted to hospital for IV fluids.
I feel numb. This is my mum. They are suggesting an MDT meeting tomorrow. Can I tell them she's had enough? Can I ask for her to be put on end of life care? What happens. Does she have some medication. She will not take any fluid off the care staff and is not eating either. She stores the food if they get it in her mouth. How much longer does she have to suffer this horrendous disease? I don't think I can take much more.

 

[nitram]

Sorry that things have progressed to this extent, I can emphasise with you, I've been there.

Whether or not you have an H&W LPA the clinicians involved should take note of your wishes.

Put bluntly is she 'dying because she is not eating' or 'not eating because she is dying'?

 

[Tias mum]

Sorry that things have progressed to this extent, I can emphasise with you, I've been there.

Whether or not you have an H&W LPA the clinicians involved should take note of your wishes.

Put bluntly is she 'dying because she is not eating' or 'not eating because she is dying'?

That is a very good question and one I will ask them tomorrow. I absolutely cannot answer it. I do by the way have H&W LPA
Thankyou

 

[Dustycat]

My Mum was very similar. Fortunately she wasn't on life threatening medication but they decided it was too stressful for her to try to get her too take it. Thinking of you . Xx

 

[angelface]

So sorry to hear about your mum, you must be having an awful time.
This situation will sort itself out, if the carers can't get your mum to drink, then nature will take it's course. This may be what the meeting is going to tell you.
In any case, as you have POA, you should make your feelings very clear.
I did find when my aunt died in July the care staff would not tell me how long things might go on for, I don't think they are allowed to.
Sending you lots of support .

 

[Fastwalker]

Tia My mum is in a similar situation. she had three teaspoons of yogurt, 3 of semolina and 50mls of fortisip today. Yesterday was a similar situation. She seems to hold liquid too in her mouth for hours at a time. The carer said that the nurses get medication in by touching the roof of the mouth with a syringe. I tried to get her to drink until lunchtime and then couldn't do it any more. I escaped to the local Costa at teatime and left it to the carers. I asked if I should go to work tomorrow and they said yes. My mum ate a bowl of custard on Friday but wouldn't drink. I think at this stage she likes very sweet things.

 

[Pigeon11]

I feel so sorry for all of you who are dealing with this. In the hope that it helps, I will tell you what happened with my dad at the end of his life. He died at the beginning of October. I don't know whether he couldn't or wouldn't swallow but the result was the same.

At the time he was very frail and weighed under 5 stone after eating gradually less and less and being on thickened fluids and pureed foods for two years. The nursing staff came in to give me the end of life chat. They knew the end was inevitable and I think they just wanted to see how I felt about things before going ahead with withholding food/drink. I told them I thought he had had enough and we agreed not to persevere with feeding him. It was impossible to get him to swallow and heartbreaking to see him with the food in his mouth and not knowing what to do with it.

It was a very difficult decision but it meant that the last few days of his life were comfortable and distress free. He died peacefully after three days without eating or drinking. He just faded away very gently and went to sleep.

They did have a syringe driver on hand in case of any pain but it wasn't needed. I'm told this is usually the case.

In general terms, at the end of life, people are able to live for quite a long time on a little food but only a few days without liquids.

Lots of hugs to you and wishing you stregnth to get through things. Take care of yourself

xx

 

[Varandas]

Very sad! Thinking of you all.
Thanks for the clear information Pigeon11

 

[VickyG]

Hi Tias mum,

I'm so sorry to read of your situation, it's truly awful isn't it
Maybe Mum just needs some settling in time, in the nursing home ? Sometimes disruption and moving someone really does unsettle a person. On the other hand, a persons health situation can change quickly and if it is her swallowing reflex that is going, you are right to get an emergency assessment form the SALT team.
My situation was similar to Pigeon11's ...... in the end Mum just stopped eating ( for many weeks ) and then the fluids got very minimal, then stopped altogether. It's true that a person can go on for sometime without the food, it's the fluids or lack of, that in the end, brings the situation to an outcome that is unavoidable.
All i can say is, i do know, contrary to belief, many people actually do not suffer at this stage, and unless the person is in any pain ( maybe due to other illnesses or health issues ), then a lot of people do not need any pain relief. This was the case with my Mum. She just passed so peacefully, and knowing Mum as i do, she was not in any pain or discomfort. I know this isn't always the case, maybe we were just 'lucky', but you can get in place a plan for this should you need pain relief etc.
Good luck, and hope today goes well. Keep us updated x

 

[virg]

We were also similar to Pigeon11's case. Mum stopped swallowing so we let nature take it's course. I got worried about Mum dying of dehydration rather than because she was just dying and was told that at that stage, very little fluid is needed and that people can go for quite a long time without (the longest in the home was 13 days). Mum kept going for 4 days and just drifted away. I think the carers can't tell you how long it will go on for as they don't know, Mum certainly exceeded their expectations.

My Mum had a syringe driver with pain relief (and a couple of other drugs)as the care home decided that it was needed but the nursing staff should be able to assess that to make sure there isn't any pain.

My Mum died 2 weeks ago and although it was very hard, I would say to try and appreciate your time together. My last 4 days with her, although Mum wasn't awake, were very precious.

Having said all that, the carers said that people can recover but with Mum it was her time.

Good luck and thinking of you.

 

[Jennywren57]

Mum was moved to a nursing home a week ago and we found out on friday that she has only taken less than 500ml of fluid in a week. I went in yesterday and managed to get some jelly and a milky bar desert down her. Today I went and tried to give her weetabix and some tea. She seems to be storing food in her mouth. The home have spoken to the on call dr and they advised thickening the liquids as a precaution and will get an emergency SALT assessment tomorrow.
I don't know what to do. We have a DNR in place and have decided she is not to be admitted to hospital for IV fluids.
I feel numb. This is my mum. They are suggesting an MDT meeting tomorrow. Can I tell them she's had enough? Can I ask for her to be put on end of life care? What happens. Does she have some medication. She will not take any fluid off the care staff and is not eating either. She stores the food if they get it in her mouth. How much longer does she have to suffer this horrendous disease? I don't think I can take much more.

We have my Mum on ensure plus 3 cartons a day, gives all the vitamins and minerals you need and each carton is 350 calories in 200mls. Assorted flavours, although we have vanilla.