Hi
Quick resume for those who don't know. OH, age 82, went into a care home for respite shortly after Easter, for respite. It was extended cos I got tummy bug, then he got chest infection. From 3rd week in May the respite was made permanent.
He has last stages of mixed dementia, Alzheimer's and vascular and was diagnosed about 8 years ago, although he had it at least 2 years previous to that.
Since he has been in the home he has lost weight ( about 10kg, 62 kg to 52 kg), lost ability to walk, lost most of his speech. He is not eating ( he has previous form there, went down to about 47 kg but recovered). That was about 5 years ago.
Over the last three weeks he has fallen out of bed 3 times, cutting head and elbow. I have also seen him have fits that only last a few seconds, but often with both arms and legs flailing and eyes rolled up. I am assuming that it has been these fits that caused him to fall out of bed.
Over the last two days he has looked quite ill and I have assumed this was cos he really was end of life. Today, however one of the nurses told me that she had been feeding him with hi cal fluids with a syringe, I am assuming via the mouth. To be fair, he is looking better, but that might be sleeping for 24 hours!
Normally his eating is poor, because he refuses most food!
Now, when he had constipation and I asked them to undertake things that have worked for him before, this wasn't done for several days until a gp came. I have been told that the diet team has been asked to see him ( not SALT, who, I understood, did these things). I don't think the home are actually giving him the type of food I asked them to give, but on the other hand, he's just not eating former favourites anyway. But some meals don't seem appealing to a poor appetite!
Note that he is very stubborn!
Now, my question is, can they just change his diet without consultation ( I have LPA h&w)? I have visited daily whilst he has been really bad. I realise if he doesn't eat, that's it, but by refusing food, I feel, it's his decision. I would not permit PEG feeding or nasogastric tube, both if which would be removed by him in short order anyway. So why are they prolonging his life doing this?
Surely this should be a decision to be made after consultation?
I have found it very hard to let go completely after caring for so long, maybe I'm hypersensitive!
Sorry for long read!
Quick resume for those who don't know. OH, age 82, went into a care home for respite shortly after Easter, for respite. It was extended cos I got tummy bug, then he got chest infection. From 3rd week in May the respite was made permanent.
He has last stages of mixed dementia, Alzheimer's and vascular and was diagnosed about 8 years ago, although he had it at least 2 years previous to that.
Since he has been in the home he has lost weight ( about 10kg, 62 kg to 52 kg), lost ability to walk, lost most of his speech. He is not eating ( he has previous form there, went down to about 47 kg but recovered). That was about 5 years ago.
Over the last three weeks he has fallen out of bed 3 times, cutting head and elbow. I have also seen him have fits that only last a few seconds, but often with both arms and legs flailing and eyes rolled up. I am assuming that it has been these fits that caused him to fall out of bed.
Over the last two days he has looked quite ill and I have assumed this was cos he really was end of life. Today, however one of the nurses told me that she had been feeding him with hi cal fluids with a syringe, I am assuming via the mouth. To be fair, he is looking better, but that might be sleeping for 24 hours!
Normally his eating is poor, because he refuses most food!
Now, when he had constipation and I asked them to undertake things that have worked for him before, this wasn't done for several days until a gp came. I have been told that the diet team has been asked to see him ( not SALT, who, I understood, did these things). I don't think the home are actually giving him the type of food I asked them to give, but on the other hand, he's just not eating former favourites anyway. But some meals don't seem appealing to a poor appetite!
Note that he is very stubborn!
Now, my question is, can they just change his diet without consultation ( I have LPA h&w)? I have visited daily whilst he has been really bad. I realise if he doesn't eat, that's it, but by refusing food, I feel, it's his decision. I would not permit PEG feeding or nasogastric tube, both if which would be removed by him in short order anyway. So why are they prolonging his life doing this?
Surely this should be a decision to be made after consultation?
I have found it very hard to let go completely after caring for so long, maybe I'm hypersensitive!
Sorry for long read!