Hello Miho,
I have some time now to respond to your last message and I will share with you my thoughts. Remember this is what happened to us and what we did. It worked for us, but we are all different and we have to find what works for us as there aren’t any magic solutions or one cap fits all solutions.
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Our number 1 rule was and is, never take anything that anyone says at face value (that includes what I say - might sound odd for me to say that, but I have to qualify this is our experience and it may be clouded by things that may or may not be relevant to others).
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When anyone told us it is not possible or it can’t be done, we always asked why? If needed, we asked for a second opinion. In this situation, it is very easy for us to get “bullied” into accepting things or the situation can be manipulated. Sometimes, we think these are experts and they know what they are talking about. But no - they don’t know what they are talking about when it comes to my Mum. They have been proven wrong many times from when they said she would not live long or get better.
Now, I will look at your concerns/observations and respond.
This happened to us and we made the mistake of not pushing back more than we did. Sadly for us, the was in the hospital environment and rehab was available in bite size sessions. They tended to occur, or if I was to be cynical, I could suggest they were designed to take place at a time when they knew Mum would not be responsive or unable to cooperate. For example, they attempted to do things during the first month when Mum was in bed and very weak - she had been nil-by-mouth and only hydrated and essential minerals via IV drip. She had no food during this period. Imagine how anyone can have energy to do anything with no nutrition inside them and also having just had a massive stroke that damaged more then two thirds of the brain.
Note to you: First check with your Mum. You have to gauge whether you Mum is capable or willing to engage. If she is, then you must challenge the conclusion she is too weak. There are things that can be done to build up strength. You should push for the rehab, but only if your Mum indicates she can or would like to do it. Staff saying she is too weak is not acceptable.
This is good and you must try to do more of this. The more your Mum engages, the better. But beware, there may be times when she will want to rest and not engage - this is different and you just need to manage this and allow her to recharge. But contact with and encouragement from family and friends will help her. We kept encouraging Mum, but we also made it clear, it was her choice if she wanted to do something and when she wanted to do it. She was under no obligation.
OK, this is important and you should try to do this asap.
We already had this conversation before Mum had her stroke and so we knew exactly what she wanted to happen when she ended up needing care. It’s just as well that we had had this conversation as it helped us to try and get the right care and support for where and how she wanted to be cared for.
You or your Dad should sit down with your Mum and have this discussion. Try and ascertain exactly what she would like to do. Where and how she wants to be cared for. Is it that she does not want to be cared for in a nursing home? Does she want to be cared for at home? If she wants to be cared for at home, is this feasible? Is it realistic? It seems she might need maximum care support and that might include or will include family members doing caring.
We care for Mum 24/7 at home - it is not easy and it is a full-time 100% commitment from me assisted by my sister plus agency care workers 4x a day. It is a big commitment, but if that is what your Mum wants, then can you do it?
I am no expert, but I believe you can get voice operated gadgets these days, so for example you can get radios or speakers and you can say “Play Classic Radio” or something like that.
Not too sure on the phone, but again there may be options.
Whilst nor ideal, as she is in a care home, if she has the radio and phone, I would hope the carers would be able to help out with that.
Mum has been nil-by-mouth ever since she had the stroke and she is fed via a PEG tube. She was initially fed by an NG tube after 1 month of nothing. We asked the consultant why she was not being given any food when all other patients in her ward were getting 3 meals a day. We had to ask!!!
After our question/complaint, Mum’s feeding started, first using an NG tube.
An NG (nasogastric) feeding tube is a thin, soft plastic tube inserted through the nostril, down the throat and esophagus, and into the stomach. It is used to provide liquid nutrition, fluids, and medications directly into the stomach when a person is unable to eat or drink enough by mouth.
Then after a month (NG is for short term use), she had a PEG tube inserted and this is how she has been fed and watered since.
PEG (Percutaneous Endoscopic Gastrostomy) tube feeding involves inserting a feeding tube through the skin directly into the stomach to provide liquid food, medicine, and fluids.
Miho - this is not right. You must speak to the stroke consultant or GP and ask why she is not being fed. She can be fed via an NG tube to start with and then if as in Mum’s case, she still needs help after a month then she may need to have a PEG tube inserted so she can be fed and watered. Yes, she may have problems swallowing but not feeding her is not the answer.
So what are they going to allow her to starve to death? (Sorry to put it so bluntly, but that is how we out it to the consultant responsible for Mum).
I will caveat this by saying, there may be a good reason for what they are doing, but for me, it just doesn’t seem right.
Yes, they will / should do a risk assessment, but I see no reason why she cannot be fed and watered safely e.g. with an NG tube to start with.
Question:
Did she have feeding problems before she was discharged from the hospital? How was she fed in the hospital following her stroke?
My Mum’s aphasia remains but this is not related to her feeding. The aphasia is about not being able to communicate using language - Aphasia is a language disorder that impairs a person’s ability to speak, write, read, and understand language.
So Mum can understand what we are saying but she cannot speak or talk in a language we understand - when she speaks, it is just sounds that come out of her mouth, not words we would understand.
Mum was put on NG and PEG feed due to the same concerns about not swallowing safely. Sadly, Mum was never supported to get back to eating or drinking by mouth. We the family are doing this now. It has taken a long time, but a couple of months back, we managed to get Mum to drink water by mouth. This is just a start and there is some way to go because the risk of not swallowing foodstuff properly has not been assessed. She can drink water and is she swallows that down the wrong tube, the risk is low. As far as we have seen, she is swallowing safely. For now, we continue PEG feeding. There are other issues we are dealing with and they are a higher priority. Having been PEG fed for over six years, a few more weeks, months probably won’t make that much difference 
Miho, believe me, we had the same issue.
My Mum was nearly 90 years old and the consultant told us that there is little chance or no chance of recovery if indeed she even survives. Again, call me a cynic, but that is why we believe she was not even given any food or water for a whole month - there was no reason why they could not have carried out the risk assessment for NG feed sooner and would they even have done that if we hadn’t challenged them?
My sister was crying and getting upset each time she met with the consultants who did nothing to be supportive.
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