@Shelbo - so much positive energy coming from this post. Thank you for sharing 
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I’ll get back to you later on that. I’ve just put the question to someone who used to care for the elderly. But she’s been retired for some time now. But she might have some ideas. What is your mums age again? I’m not at my computer to check, and I’m still learning to navigate the forum by phone 
It’s my latest rehab exercise to help improve my motor skills and hand dexterity 
Its coming but this one fingered typing is the pits 
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Hey @EmeraldEyes - there are many fine one finger typists!
Thanks for your help.
Mum is 94 years old, but physically and mentally (before the stroke) she was much younger (there is a term for it, but I can’t think of it right now). She was more like a 70 year old or even a 60 year old. She is really quite remarkable and it’s a shame the stroke has robbed her of so much.
Hope we’ll get her taste buds going. I am using pineapple chunks and rubbing them on her lips - a district nurse suggested this might help.
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While I’m waiting for her to get back to me.
Is she physically able to swallow?
How are you looking after her mouth hygiene wise?
Another question that needs to be asked:
Does she still have all or some of her own teeth?
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Yes, transfer service is available but it takes far too long for us. A 5 minute taxi drive (or self drive when we get our act together) and a few minutes on a bus to get back to town is far more enjoyable. We’re doing things under our own steam as far as possible. “Together we stand” and all that jazz.
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Lorraine use text to speech that’s why I do
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Yes, that’s something to work on, will also help with the aphasia…having to try speaking more clearly. Good one Simon, I’ll have to give it a try 
I know you’ve used it for a while, but I’d never considered it for myself while I was still working on computer/keyboard reuse. But now that I’m advancing, that can be next target 
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Sorry it took a little longer than I expected 
I take it there are no oral/dental issues that haven’t already been considered.
The only suggestions we can make is coating her mouth with glycerine to keep it moist.
Try lemon juice on a swab to reactivate and get the taste buds tingling.
This is best done using the foam tipped swab like above. And don’t saturate the sponge in lemon juice as you don’t want to risk her coughing or joking on droplets. Mint, ginger and honey are other good ones to tickle the taste buds with. Lemon flavoured lip balm might also help entice in between times
My friend would progress to things like Lemon Sorbet’s, ice-cream and even the smooth peanut butter. She did say that she’d be surprised and very disappointed if this technique hadn’t already been advised and in practise from the beginning.
This method has always been successful for getting residents back into eating, and naturally, soft baby food consistency to start with when they reach the stage of solids again.
However, she has no experience in this with someone who hasn’t eaten for 5 years. Discussing it with her, we wonder if your mother has forgotten how to eat, teeth can no longer tolerate food and drink, the stroke has destroyed that ability in her brain.
The fact that she covers her mouth with her hand when you try to give her something orally makes us wonder if there is a dental/oral issue that prevents her eating or drinking.
It was lovely to read this comment in your post Thankyou.
Many times when it’s all too difficult and life doesn’t have any joy for me my husband will say a similar thing to me , I can’t express to you how good it is to hear . .
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Hi @EmeraldEyes,
Thank you for getting back to me with this information – sorry it has taken me a while to get back to you.
Mum is she physically able to swallow i.e. when she allows you to offer her water, she will swallow it without any problem. She also swallows a lot of the juices she generates during the day and never ends up coughing.
Mouth hygiene is a problem as she puts her hand across her mouth and blocks any attempts to clean the mouth – keeps it tightly closed. In the end, we had to “give up”. One of the healthcare professionals said it might be risky if she ends up pulling the sponge swab off and ends up swallowing it.
As a result, she now has a lot of plaque in her mouth. But when she first refused, her mouth was in a very good state of oral hygiene and she did allow it to be cleaned. Then one day, one of the hospital nurses was over enthusiastic (brushed too hard) during the clean and Mum started refusing from then on.
She has some of her own teeth but they are now covered in plaque.
Oral/dental issues may now be part of the issue since she has effectively refused oral hygiene for about four and a half years.
There is some sort of “self cleaning/oral hygiene going on – difficult to describe, but her mouth is clean (apart from the plaque), her tongue is nice and clean and her breath is fresh.
We will try to follow your friend’s suggestion and see if we can encourage Mum to resume food /drink by mouth. Thank you to you and your friend.
Mum may well have forgotten how to eat, or her teeth may no longer tolerate food and drink, and the stroke may have destroyed that ability in her brain. It’s difficult as the communication channel has also been severely impacted by the stroke.
Covering her mouth with her hand may be a defensive response (as she may have felt assaulted by the nurse who cleaned here mouth and which led her to start refusing – she was fine before that wrt oral hygiene, though of course she was nil-by-mouth at the time).
Anyway, I really appreciate you taking time to follow up and help out. If we make progress, I will make sure you are the first to know. I try to post some of our experiences on this forum.
Take care.
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hello how is your mother doing now, my husband is same refusing to eat and hates the nurses as they somehow lost that compassion and care , now nurses are harsh in a rush and shouts at him to eat and drink and he will get better . we 6 months now a home , but same just drink very little and a little soup . i was home caring for him 5 months now back to work .
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Hello @TrevorNaidoo
I hope you and your husband are well.
Amy apologies if this response is a little late - I have not been able to look in on the forum recently for one reason or another. Mum keeps us busy - looking after her is a full time job. We care for her 24/7 and sometimes you feel the effects of this.
Mum is doing very well, though she and we have picked up a virus in the last few days and we are trying to manage the effects of that.
With Mum being nil-by-mouth it is difficult to do the usual common things we do such as drink plenty of fluids etc.
I am really sorry you are having a bad time with the nurses. It does not seem right for the nurses to shout at your husband. They should be helping him, relaxing him, helping him understand the importance of taking the food and drinks etc. You should think about flagging the nurses behaviour with their supervisors. Nobody should be treated in this way.
How does your husband respond to you? Are you getting any help/support from friends and family? Maybe you can help your husband cope with the condition. A bit of tlc goes a long way. I appreciate it must be difficult for you as you are working as well as looking after your husband, but help is often available.
If it helps, I can tell you, we have looked after Mum at home including through the harsh covid lock-downs and all this time she has been nil-by-mouth. We have followed the guidelines given to us including the dieticians element of the care plan and she seems to be in remarkably good health. The only strange thing is she just refuses to take food or liquids by mouth and we just don’t know why. For now, we are resigned to this be her choice i.e. she is being offered food, but she refuses it. However, she is also being given food via PEG tube and she is not refusing that, thereby meeting all her nutritional needs.
Feel free to ask anything else you may wish to. We have experienced much and we feel we have a good understanding of what it takes to look after someone in Mum’s condition.
Take care, stay safe.
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hello thanks so much for your response. weekend he was in so much pain . i called 111 and the emerency dr said the nurses will provide me support and care and may be more stronger pain med, so they gave him same 2 mls morphine and said he will sleep sat night but all nite he cried in pain sunday called again dr visited home. he is afraid of nurses now and want to die, he is refusing soups and having lesser water . the dr increased the morphine now he is asleep and not in so much pain , he is super strong. and just says he will be ok. i am going work tommorw and get a carer to sit with him for the 3 hours i am away. he is saying he will be ok and i must go work , i am copying . work friend are amazing and some good friend bring me food and call me to talk
i hope there be more suppport but they feel he is gonna be ok because he is 56 and can start eating and drinking again and will be better
i am prying for strenght and a miracle for him, i dont know how to help him but talk about all our good hoildays and memories . and cheer him . i am buying his favourite food but he has forgotton so much so his memory has change . i am upset he was not given stroke treatment and ttreated for depression with strong drug trail like ketamin for 2 month and that he is so poorly now. none understand i feel if they gave him stroke physio he will be walking now and healthy. i feel like i was robbed of basic treatment and noone wants to take ownership. now they say he is refusing to eat, he cannot eat as too much pain. no bowel movement , the drug has taken away his basic functions and they blaming him . i love him so much no sleep , no support but we pray toghether and we are strong and amazingly happy . we cry and laught and hug and i kiss his forehead and hold hiis hand for comfort . our love will pull us thru this .
hope your mum know how much u love her . i tell trevor all the time. he tells everyone how much he loves me . we will be strong and i am praying its all in Gods hands
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Hello @TrevorNaidoo ,
You are doing well to support your husband and trying to carry on with your own life as well. It seems your husband is also offering you support and you are both encouraging and supporting each other.
Keep it up, keep up the prayers and God will look after you both.
Your love for each other and your faith in God will see you through.
This is not a race - just keep doing what you can and keep believing.
If you like music, listen to some of the music you both liked.
Also, you might want to consider singing! Music and singing are forms of therapy.
One other thing - try to get some fresh air and sun if you can (I mean both you and your husband of course).
Think positive and be positive. By all means look back, but don’t get upset by things that might have been done - that is water under the bridge. Look forward- think what you can do now and put into practice things that you might have done - it is never too late. For example, you can still get physio for your husband. It will do him good.
Stay strong, stay sage.
Best wishes. Peace and Love.
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Trevor passed away Friday 14 June 2024 10.30 am
it was hard to say bye.
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I’m so sorry to hear your sad news
My deepest condolences
I hope the painful emotions fade over time to leave all the happy memories that will allow you to smile again but take the time to grieve first
Hugs
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I’m so sorry about Trevor. 
if you want to talk, just message me
hugs
Lea
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So sorry to hear your sad news. Sending my condolences to you at this difficult time.
Thinking of you xxx
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I am so sorry for your loss, you have my deepest condolences, may Trevor rest in peace now and free of all pain 
Lorraine
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