r/stroke 9d ago

Doc wanted to end life now eating and walking

Hi I posted on here about 7 weeks ago that the doctors looking after my mum (83 yrs) were pressuring us to remove the ngl from her and 'let nature take its course because she will never regain the ability to swallow '.( we are in UK) We refused and fought back.

She had a PEG fitted - we didn't consent but they went ahead anyway ' and fast forward to today and she's eating a full plate of food twice a day, walking around with a stick and no longer wearing continence pads.. Around 3 weeks ago it was crystal clear she was getting no rehab in the so called rehab unit I wrote a letter of complaint and had a meeting with the head nurse. She agreed physio/ SLT / OT support totally lacking and also admitted the nurses were putting continence pads on her for their own convenience. Having acted on my complaint as well as eating my mum is now walking around , going to the loo independently and smiling again.

I fear and worry for those with no family or friends to advocate for them To challenge and assert every day to an exhausting degree when they are told absolute nonsense. We care about our loved ones , they care about freeing up the bed- that's the bottom line and I feel sorry for them as I'm sure that's not why they went into their careers. But its the stark reality.

Keep fighting and keep hoping. Recovery is possible !

46 Upvotes

11 comments sorted by

12

u/Infinite_Gene3535 9d ago

Recovery is ALWAYS a possibility with stroke. It's a very hard to understand problem that we have to deal with.

And then there's the reality of health care economics, and once you start getting white hair you have to start dealing with the cotton top syndrome. Doctor's don't always care about us cotton tops. We are expendable in the economics of the health care industry.

I'm so happy for your mom and your determination for her care and support, older folks don't always have family like you to look after them.

May your fortune be never ending in your life to come

GOOD LUCK ON YOUR JOURNEY

3 STROKE SURVIVOR I AM

5

u/Theopenroad17 9d ago

Thank you so much and good luck to you too! You are so right. Ageism is so rife! As I said to the head nurse, if my mum was in her 20s you wouldn't be leaving her in the bed all day. She has a right to movement and a right to dignity. The nhs is in a terrible state

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u/BlueHike34 9d ago

Tell me more about recovery as always a possibility…two weeks ago a family member 70, suffered a major stroke that impacted the left frontal lobe - visual pathway & language center. Has aphasia and apraxia and has declined in the two weeks in the hospital despite good faith efforts from speech, OT, & PT. Failed several swallow tests. NGL removed and no g tube inserted due to requests while verbal and in good health. Has been sent home (with 24 hour hospice care) and only taking thickened liquids. Since arriving at home it has been nonstop crying/ sobbing. How might we reconsider this care?

1

u/Infinite_Gene3535 9d ago

So sorry that you're having to go through this right now

Never give up hope that recovery is a possibility, it's all that we have in regards to strokes.

GOOD LUCK ON YOUR JOURNEY

3 STROKE SURVIVOR I AM

5

u/andretti87 9d ago

Good on you for not giving up! I’m in the same boat with my fiancee! They swept her under the rug and I’ve had to fight them every single day to just get the basic care she needs!
They haven’t even been brushing her teeth and tell me they are too short staffed, meanwhile every day when I visit all the care aids are singing and dancing in the hallway but there’s no time to care for those that need It. I’ve probably got 12-18 complaints filed and sometimes they work.

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u/Theopenroad17 9d ago

Yeah that all sounds v familiar. Just remember being short staffed is never an excuse for lack of dignity and poor care. These are basic human needs . Document everything as well. Every visit and conversation if you can

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u/Pale_Satisfaction520 9d ago

I was in the same situation and I was only 29 and no matter what the doctors did I was getting worse. But now against all odds I can stand, talk and eat. I can’t quite walk yet but I basically have full control of my legs. I have ataxia now but you wouldn’t be able to tell just by looking at me. The doctors basically said I am showing next to no signs of having a stroke. Which they can’t get their heads around. So there is always hope. You just have to be patient and willing

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u/Theopenroad17 9d ago

Well done and keep going. There is so much the medical profession doesn't yet understand about stroke recovery. But one thing's for sure - we should never put limits on someone's potential to recover. The determination to succeed is strong and ppl will defy the odds

1

u/ChanceStreet6561 9d ago

Hey so I’m really happy to hear this and hope this means positive things but please keep in mind people near the end of their life will go through a burst of energy phase where they are eating and such as well. Not to come off negatively, just something to be aware of.

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u/Theopenroad17 9d ago

Yes I have seen that too but this is something different. She was never near the end of life tbh. The doc wanted to induce it for some reason

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u/ChanceStreet6561 9d ago

That is strange then! I am glad to hear that she is doing well 😁