Mum won't eat

Hi all.
Its now 3 month post stroke since drs said my 80 year old mother would not make it following a bleed and two blood clots. She is now settled in a nursing home however has lost up to 16kgs in weight. She has been assessed by SALT and is still on a pureed Level 2 diet.

The strokes resulted in paralysis of right side. She can speak very little. The words she says are wow and hello. Weve gathered she cannot read or write however she is very expressive with her face, either blinking, smiling. She has had days where she has been very emotional. This was a couple of weeks ago, which completely upset all of us.

Each week is different. She can have a good week where she is alert, aware and eating and drinking. But then the next week she will be in a daze. Not eating, drinking. Staff will be unable to wake her for food. She refuses to open her mouth. Pushes food away.

Dr still states that mum is end of life care. Weve requested they restart her omeperazole but not sure this is the case. She gets intermittent pain but she cannot communicate yes or no so she receives low doses of morphine.

Can anyone explain is this typical post stroke. The hospice is saying that improvements should have been seen already for rehabilitation to occur. They say my mum is too weak but for her to suffer with such massive strokes of 3 in a week, that surely time is a healer. I feel they are expecting so much more from her.

I am really concerned about her lack of eating. Does food taste different after a stroke.

Many thanks

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Hello Tek

So sorry to read about your mothers condition and of course how much anguish that must bring.

There’s a few threads on here about things tasting different after stroke and I can recall a number of different comments of how people were no longer able to stomach somethings post stroke.
For me personnaly I did suffer for quite a few months with my own eating after my stroke in Jan 22, at first a lot of that was to do with sensory overload, the shock of having and surviving a stroke and the sense of heightened awareness that brings and all the problems that causes, my gut brain axis, like a whole host of other brain connections were in a terrible state and it took a long time for them to settle down and for me to start to be able to fix things one by one.

I know this will bring you no solace to hear, but your mother, surviving a bleed and two clots has endured and survived more than most of us have, I understand completely your worries for her, but she has by all accounts experienced a very large amount of trauma, some of which will have started healing, but this is no straight forward process. The brain is uniquely unique and traumatic brain injury (TBi) is not often straight forward and more often a journey of many variables and adjustments.

There’s a whole catalogue of posts on here that might be helpful to read, but also, might not be too helpful…
I wish you and your mother well and all the best going forward.

Regards Al

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@Tek50 so sorry you’re having such a troubled time with your mum. She has been through so much & i’m sure she is probably exhausted as much as anything else.

Progress usually starts to be made in the early days following a stroke but given that she had 3 it would probably be delayed. Progress can be very up & down so having a better week followed by a bad week is not unusual.

For me food tasted different after my stroke & things I used to enjoy I could no longer eat. That did get better over time though.

Emotions are also often all over the place & sounds like your mum has a lot to deal with so its not surprising she has been emotional.

It must be very difficult for you all. I assume they have explained to you why shes on end of life care and why they think she isn’t going to progress? Sadly sometimes people don’t recover from such a large event and however difficult it is we have to accept that that is the case and make the most of the time we have with them. However you know your mum best and maybe you should seek a 2nd opinion.

I really feel for you. It’s such a difficult situation to find yourself in.

Wishing you & your mum my very best wishes.

Ann xx

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@Tek50 so sorry to hear about your mum, it must be so difficult and heartbreaking to see her like this.

Best wishes to you all, take care

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Yes, food does taste different after stroke. Also, if she had a right side stroke often food is difficult to swallow. Yesterday, I visited my 87 year old cousin who had a right side stroke in June. She also had to go into a home. At first she had no speech and couldn’t swallow, so she was fed on puréed food. Her speech began to come back but I thought it unlikely she would survive.

I hadn’t seen her for a month since she had another spell in hospital and another occasion when she broke an ankle. On my earlier visits she was very tearful and said she wanted to be gone. Despite having no speech, she did understand everything said to here. Yesterday, her speech was much improved and she could have more of a conversation. However,some words just won’t come. She is now settled in her home and can eat again.

All strokes are different and a lot depends on encouraging the individual and their own willpower. I can’t say your mum will improve, but my cousin’s progress has been better than I first thought.

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@Pontwander thank you. Your personal experiences of stroke are helping me understand what my mom may be going through. I understand that each person is different and healing takes time.

I don’t believe my mom is at end of life care as shes not actively dyeing. Just because the drs said this 2 months ago, so much has changed.

Just her progress is slow but the dr says its a slow decline.

Im 5 hrs drive from my mom so its really hard to communicate info to and from to my dad and sister as they both have conflicting views.

Such a hard time seeing my mom going through this.

Thanks for your suggestions :blush:

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Hi Ann @Mrs5K.

Thanks for your kind message. Weve chatted previously. Thanks for your lived experience on stroke as it is helping me greatly understand what my mom is going through, and shes not alone in her experience.

I am also a reiki master so I do regular reiki on her distantly which helps a great deal. She is also a reiki master and is very receptive to the energy. In the early days I was sending her reiki and whilst she was in periods of lucidity she responded to it so well.

I pray my mom starts to eat soon as she loved her food and cooking.

@Mahoney Thank you, its so very hard. Thanks for your kind wishes :pray:

Hi @John_Jeff_Maynard

Thanks and sorry to hear about your cousin. She has 3 strokes on the left side of her brain. So right side paralysis. It makes sense for the decreased appetite.

Mom looks half the woman she was. She has decreased in size. Its heartbreaking to see. I really hope that she starts to improve and begin to eat again. Also she knows what she wants to say but her words just dont come out but are slurred. I feel for her so much and just know how frustrated she must be. :sleepy:

Thanks for your thoughts.

Good morning Tek50 . My mother had a massive stroke aged 80 and spent her remaining years in a nursing home having a good quality of life and died aged 93. When we saw her directly after the Stoke we thought she wouldn’t survive. After a few months she miraculously regained her speech but spoke gobble-de -goop but slowly learnt to talk again. I can’t remember if there were feeding issues but will get in touch with my sister and let you know. Don’t know if you have heard of book ‘ My Stroke of Insight ‘ by Jill Bolte Taylor. It maybe not relevant in your Mums case but what maybe useful is reading Appendix B at back of book. Forty Things I needed the Most which I feel might be of help to you and your Mum.

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Good Morning Tek

I can’t begin to comprehend what it must look and feel like for you to see your mother like this, my experience was from the other side looking out, but I was incredibley lucky to keep my speech and movement so could, all be it a struggle, communicate with my own family.
I felt terrible guilt for being poorly, for bringing the anguish and trauma of my own stroke to them. Stroke is very uninvited and very all encompassing, it happens to entire families, not just to the individual.

When I was in hospital the two gentleman either side of me had being savaged by their strokes, the couldn’t move, talk, communicate more than a few audible grunts and had no swallow reflex or bowel or bladder control, but…they were in there, I felt I could see this in their eyes as they followed me walking about, cognitively all the thoughts are still there, but the persona is trapped behind a sound proof glass creen, unable for their words and motions to be inacted by the paralysed body.
I would say communicate with your mum, talk to her, by phone or face time if you have to, ask to be set up and ring her, and tell her what you’re learning, what you are finding out, because I’m very very sure behind the screen she’s there, maybe unable to communicate, maybe unable to tell you what she’s living inside, but maybe desperate for information as to what has happened to her, what is likely to happen and possibly, maybe, some information that she needs about holding on, finding a way out and back to some sort of living.
It took me a long time to reconcile what had happened to me, I thrashed and screamed and riled against my losses both physically and mentally and I had most of my faculties to help me do so, it will take your mother as long if not longer to fight her way back and if I was asked, I would say, she is hearing everything that’s said, listening trapped inside her glass box possibly whilst otehrs talk around her like she’s not there. Maybe you can be the difference, fill her ears with words of love and hope and kindness, maybe a plan, a contract even, to loyally be by her side and love and nurse her in any way you can, because I think it’s maybe what she needs teh most.

I don’t know how far over any line I may be writing and speculating as I have Tek, and I’m sorry if I have, but I do know for sure a few things, the will to live will not be surpressed, it exists in all things right until the last spark has stopped and life finds many many ways to continue often in the face of great adversity and the other thing is there is no greater healing force than love, the feeling of care, of empathy and devotion that only love can bring to your mother and that only you and a few others can provide.

Keep talking to her if you can Tek, she’s in there and will heal more from your words and understandings than anything the Doc’s are going to bring to this.

Take all the care in the world and you have my sincerest thoughts for you and your family as you care for your mum.
Al

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Thank you @Pds for your insight and so sorry for the loss of your mom. Just spoken to her today. She said hello. I will certainly look up that book. I have audible so will try see if its available on the app to read as too much to do. I have so much faith in my mom and know deep down its not her time.

I suppose what will be will be and will take each day as it comes xx

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@Pontwander sorry its taken a while to respond. This time of year is so busy. Your words made me cry and you write so beautifully and with such clarity and truth. Everything resonated with me and as @Pds recommended the wonderful book, Stroke of Insight, it has struck me how important shared experiences of strokes are as it is bound to be meaningful to someone or resonate with them on a level.

Thank you,
T

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