HELP NEEDED NOT SURE WHAT TO DO

Mrnkar

Registered User
Oct 28, 2017
25
0
Sorry not even sure if this is the right place to post.
My father is still in hospital and the aim is to get him to 24hr nursing care.
Last Monday I received a call from the hospital to say my father was deteriorating and a Dr wanted to speak to me. This was not his normal hospital Dr as his own was away. After discussion with him by both my brother and I, he agreed that this could be due to dehydration and a chest infection, which I slowly watched happen and had already raised my concerns with the nursing staff, who said they where keeping an eye on things. The main problem is caused by the fact he is on thickened fluids but hates the taste so won't eat or drink much and also doesn't like the fortified supplements.
When in discussion with the Dr he agreed that something needed to be done as this is the 5th time, all whilst in hospitals, that it has happened and my brother suggested maybe a PEG or RIG which the Dr said yes that could be a solution and could prevent his return to hospital, when he goes to nursing care, so he would speak to Dad's own hospital Dr on his return.
My father was put on a drip and antibiotics and had bounced back to normal when I saw him on Friday.
His Dr returned on Monday. I went to see my father on Tuesday again and he was great but i was concerned as he is still not drinking or eating much and so asked the nursing staff what was the plan. Again we are keeping an eye on him was the reply. I enquired had the Dr mentioned anything about a feeding tube, to which they
replied no.
I tried to speak to his Dr and only managed to get hold of him on the telephone yesterday. I won't go into the full conversion but basically he said the other Dr hadn't spoken with him, a PEG etc was out of the question and basically he could be readmitted to hospital when dehydration occured and then kept saying how poorly my father was. I pointed out that if my father was so poorly, which in my eyes he isn't, it's only when he becomes dehydrated that problems occur, how come he was fit to be discharged to a NH.
I thought we had found a solution but now realize that his Dr is against it.
I am at my wits end and don't know where to go from here.
My father has already been refused by 2 EMI Nursing Homes as they know he will end up in hospital with dehydration again and behavioral issues.
They had a psychiatrist do an assessment, while he was confused with dehydration and deemed him to have lost capacity, but I pointed out to her that he was ill so she is coming back to reassess.
I know my father has a few memory problems but in no way has he lost full capacity.
If anyone can make suggestions as to what I can do, I would be eternally grateful. Thanks
 

Prudence9

Registered User
Oct 8, 2016
478
0
I've not had your situation come up for us yet but we would not put my Mum through PEG feeding when we reach that stage.

I'm so sorry you're in this very distressing situation.
Could you ask for a meeting with your Father's medical team?
In the meantime have a good look at all the information you can gather on PEG feeding.

I'm sorry I can't be more help, best wishes.
 

Mrnkar

Registered User
Oct 28, 2017
25
0
Thanks, but my father would be fine if they didn't keep letting him getting him get dehydrated. I am not a Dr but i can see this happening and try to get something done before it gets to that stage but they don't seem to do anything about it. My father can be a handful and will refuse blood tests etc and swear at everyone, including me.
Their main priority was to get him out of hospital ASAP, but as 2 NH's have now refused to take him, I feel they are just letting these problems occur.
Had both my brother and I not spoken to the Dr and suggested it was due to dehydration and a chest infection, which had gone untreated, I believe my father would have died.
My point is mainly it seems to be his Dr that is causing this, as when he was seen by a different Dr, his treatment and suggestions were completely different.
 
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Beate

Registered User
May 21, 2014
12,179
0
London
Peg feeding requires a medical procedure which I would not recommend with a dementia patient. If your father is on thickened fluids, does that mean he has been assessed by a SALT team member as having swallowing problems? There is another member here who's just had the same problems - her mother doesn't like the thickened fluids so won't drink enough. She's spoken to the doctor who agreed to try less thickened fluids - on the strict understanding that the swallowing problems might return and cause aspiration pneumonia. I don't think there's a perfect solution - it's a rock or hard place situation. A nursing home will not be able to put people on fluid drips so if someone becomes dehydrated, they will need to go back to hospital, likewise if they develop pneumonia, but the hospital can't keep him forever just to go on hydrating him via a fluid drip.

Is your father really able to understand the implications of all of this and able to make a rational decision, especially if he keeps being poorly and has behavioural issues?
 

Mrnkar

Registered User
Oct 28, 2017
25
0
Hi, my father had only been diagnosed with Dementia and although he has a very little bit of memory loss, he is fully able to communicate what he wants. He has other health problems which aren't causing any problem at the moment. He is confined to bed as he refuses to be hoisted. He is a very difficult person, but that is normal for him and had been so his life.
Regarding the thickening, it is suppose to be half a scoop out 200 ml, which isn't even stage 1, but I have seen it and sometimes it looks like between stage 2 or 3, so they are not consistent with making it up the same. It's the taste he doesn't like. I suggested thick milk shakes but they said no. It's the taste he doesn't like.
You are quite correct in a NH not inserting a drip, that's one of the reasons 2 have already refused him, and he will continually be readmitted to hospital, which is what I raised with his Dr, but he seems ok, that this will happen.
A RIG is alot less invasive procedure, which I along with another Dr thinks world be the way forward but his Dr won't entertain this.
If I thought in any way my father was near his end of life, I would just let nature take its course, but I don't believe he is.
 

Mrnkar

Registered User
Oct 28, 2017
25
0
Thanks will look into it. Just feel I need to speak to someone outside of the hospital.