So bizarre !
- Thread starter Ann Mac
- Start date
Oh 2jays that’s so beautiful! I love that image. It’s all of us holding on to @Ann Mac and her family. From all round the world. Thinking of you, Ann, at this sacred time. Love to all.
Ann - so sorry to hear how MIL is but I completely understand your relief that it looks like it is the end of her journey. I do hope your son gets to see her. Sending you all massive hugs.
Photos of birds are fab.
I was pleased to hear you mention your son has another dog, when his other one is so poorly.
Sorry to hear youngest has been so difficult. Strops due to upset are part of the pattern she has got herself into - not easy to break out of though. Always sad to hear about a young person dying suddenly, I've seen a report on the BBC which I presume is the young lad you are referring to, such a waste of life.
My dau seems to have turned a corner, it has been getting slowly better for a while. Much of her strops were related to her iron issues, and the fatigue, which seems to have gone, then the pneumonia, from which she is recovered but not back to fitness, and prior to that with the bullying at school, she had changed. I could see that the changes from the bullying slowly were disappearing with the move of school, but illness got in the way, much of her confidence in herself has returned, and hopefully she'll get fit and it will fully return now. Due to less tiredness, strops have considerably reduced, and she has strted doing a bit of housework again (she did quite a bit before she got ill) so life is easier.
Photos of birds are fab.
I was pleased to hear you mention your son has another dog, when his other one is so poorly.
Sorry to hear youngest has been so difficult. Strops due to upset are part of the pattern she has got herself into - not easy to break out of though. Always sad to hear about a young person dying suddenly, I've seen a report on the BBC which I presume is the young lad you are referring to, such a waste of life.
My dau seems to have turned a corner, it has been getting slowly better for a while. Much of her strops were related to her iron issues, and the fatigue, which seems to have gone, then the pneumonia, from which she is recovered but not back to fitness, and prior to that with the bullying at school, she had changed. I could see that the changes from the bullying slowly were disappearing with the move of school, but illness got in the way, much of her confidence in herself has returned, and hopefully she'll get fit and it will fully return now. Due to less tiredness, strops have considerably reduced, and she has strted doing a bit of housework again (she did quite a bit before she got ill) so life is easier.
Ann, I've followed this thread from the time I joined TP - and have gained so much insight from all you've shared.
As MiL's journey with the awfulness of dementia comes to its end, may she slip peacefully away, finally free.
And for you, your husband, and family I wish peace and strength too. You've given MiL such tremendous care for years - you did everything possible to ease her journey.
As MiL's journey with the awfulness of dementia comes to its end, may she slip peacefully away, finally free.
And for you, your husband, and family I wish peace and strength too. You've given MiL such tremendous care for years - you did everything possible to ease her journey.
It is lovely to see so many posts from people who have 'lurked' on the thread previously. Good to know that so many people care xx
And I can't tell you how much I appreciate it - thank you, all, so much xxx
I am just back from the CH and the meeting. I went in this morning to find Mil up, washed, dressed and in the reclining chair in the lounge. Very sleepy, but more aware than yesterday. Nurse L came to speak to us. Mil has had a small gastric bleed, and she believes there is the possibility of what she called a 'catostrophic bleed'. If that happens, then the CH is not equipped to deal with it, and Mil would be in severe pain, She wanted us to agree to hospilization, purely on the grounds of easing pain and distress for Mil if it happened. We had to agree. OH went off to work, and I left to grab some shopping, going back to the CH for 1.45. Mil was awake - and back to the writhing and squirming, crying out in pain, jerking and twitching. I could have cried, I was so upset to see her like that again. Every couple of minutes, staff were rushing over to stop her squirming off the seat. She was telling me she loved me one minute, cursing like a navvy the next. Begging for her Mum, over and over. Every now and again, she would go rigid, and twist, gripping her stomach and crying out as if in pain. It was just horrendous.
2.30, the time for the review came and went. At 2.55, the CH started phoning, asking where this chap from the health board was? At 3.15, this 'chap' rang the care home, and asked to speak to me. Crackling phone, clearly he was driving, he was very sorry but had been delayed - could we perhaps do a quick review on the phone? I told him no, we damn well couldn't. He then asked could we re-schedule?. I told him no. He then said OK, he would come - but would be another 40 minutes. He then asked was he correct in thinking that Mil was part funded under 117 and part funded by CHC? At which point I lost it, I'm afraid. I had been worried that this whole thing would be dictated and decided on the basis of funds, and was determined that would not happen. I blew. I told him that he had better get his bloody ar$e there, quickly - and that I would be complaining about the unprofessional, ignorant and unacceptable behaviour. I hung up on him.
He turned up at 4.10 pm. Unluckily for him, I was outside the front of the CH, having just made a phone call to his office. I absolutely flayed him. He kept apologising, saying he had been booked into two care reviews, miles apart and no time allowed for travelling, but I just wasn't in the mood to listen to excuses. I told him that was neither mine nor Mil's problem, and I wasn't interested. He followed me to the CH, to be met by the two staff who were also attending - they made it very clear that they were pretty disgusted too.
We went into the meeting room, and straight away he asked again about funding. And he got told by me in no uncertain terms that I would NOT discus funding, that this was about Mil's care and well being, and I didn't want to hear a damn thing about costs. He apologised and meekly said that he was asking because his notes weren't too clear and he wanted to be sure. He said he wouldn't ask again.
The staff, Nurse L and N, a senior carer, were fantasic. They had everything to hand, and pulled no punches. They detailed all the risks, the behaviours - and they also had compiled a huge list of all of what they considered to be 'failures' on the part of Mr R, Mil's previous consultant - that really rocked me back on my heels, because it was also very detailed, and painted a picture of someone who was too arrogant to read notes, and too disinterested to respond to repeated requests for urgent reviews and requests for help. They had even pointed out that despite it being noted on the front of Mil notes that she was not to be given resperidone, he had tried to insist that she was given it. I added about how he had phoned me, to ask me to tackle the GP about the resperidone and maintenance AB's for Mil - it was pretty clear that that had been a backside covering gambit on his part.
The staff listed all the incidents and described in graphic detail the behaviours. I wasn't the only one reeling, because there were quite a few things that I was unaware of. The chap from the Health Board was simply stunned. He just kept apologising and apologising as the staff related their frustrations with a health service that had let Mil down. They had evidence, times and dates, of how many times they had requested help, and the list of non-returned calls and responses was just beyond belief. They detailed Mr R coming to the CH on one occasion, standing in the lounge, watching Mil screaming, banging on doors and windows, verbally abusing and attempting to pysically attack staff and residents, scratching at herself and pulling her own hair, and described how he walked away, saying he would 'get back to them' - and then read out the notes showing that they then had to phone and email and badger for weeks, and still he did nothing, other than suggest drugs that had already been tried and failed. He apologised to me too, saying that my opinion of the NHS and its staff must be terrible - and he didn't blame me. He said that Mils situation, her presentation, was the worst case of disturbed behaviour he had ever come across in a dementia patient. Without any of us even uttering the words, he said that she needed 1-1 care urgently, 24/7, whether she was on palliative care or not, that the risk to her, other residents and staff was too great, that she was too unpredictable. He agreed that she should be on pathways and that a medication strip must happen - it was clear that none of her meds were helping her, that it was even doubtful that the meds for COPD or angina were doing anything useful at this point. He went through the check list, ticking one 'severe' after another, detailing the evidence and accounts. The staff had a huge thick file of behavioural charts, safeguarding reports, incident reports, as well as all the details of the failures of the Mental Health team and consultant to respond. It was quite overwhelming.
He told me he was seeing his manager tomorrow and this would be escalated to get the 1-1 in place asap, though he couldn't give me a definite time scale. He said that he would recommend that the funding would now be 80% CHC, 20% 117, because clearly the nursing needs were severe, and the risk factor as high as he had ever seen. The assistant manager joined us, and added even more weight to what the staff and I were saying. The staff said that they would get copies of everything photocopied for him before he left - they had already copied a lot of the behavioural, incident and safeguarding stuff, but he wanted all tyhe notes on the failures and responses from the Mental health team, led by Mr R, and copieds of the care plan notes too. We are talking hundreds and hundreds of pages. He said he would be remaining at the CH, writing up his reports and wait for the photo copying - it would take 2 - 3 hours. I had more sympathy for the CH staff who would also stay late to get the paperwork done. I was totally wrung out, and knew I was close to tears. I made my escape, getting home at just after 5.45.
On the surface, it sounds as though, finally, someone has listened. The staff were so relieved. I am a little more cynical after the last several years. This chap is supposed to phone me back tomorrow, at around 2pm. I'll wait and see what happens then. Meanwhile, Mil is on palliative care and a pathways care plan is going to be drawn up and put into effect, ensuring that when necessary (and they still think it is only a matter of days or weeks), morphine and anything else is there and ready to meet her needs.
I am so tired, and the last thing I want to do is go back to work tomorrow morning, but as I think I may have to take some more leave shortly, I don't have much choice. I am more grateful than I can say about the way the CH staff went out to bat for Mil - they were as determined as I was that Mil would get every single thing that she needed. I hope that their faith in this chap is justified.
Thank you again, all of you xxxxxx
Wow, oh, wow! That’s told ‘em! But WHY should these things take so long. One rotten apple, Mr R ( shouldn’t that be Dr R, he’s not a surgeon?). If he was any kind of an expert, he’s failed!i hope he has mil on his conscience!
But, how good of the staff to compile that huge document! Laying everything on the line! Hope they managed all that photocopying!
Hopefully things will be better for mil.
I don’t wonder you’re wrung out, I would be as well.
Lots and lots of (((((((((Hugs))))))))).
But, how good of the staff to compile that huge document! Laying everything on the line! Hope they managed all that photocopying!
Hopefully things will be better for mil.
I don’t wonder you’re wrung out, I would be as well.
Lots and lots of (((((((((Hugs))))))))).
Oh my goodness. What a day you have had
I understand the cynical thinking.... but I did do lots of ooohhhmmms so that positive vibes were sent your way.....
Oh for all your sakes I do hope this person comes up trumps for you
If you can’t face work tomorrow. DONT GO
You deserve some respite for yourself so I give you permission not to go to work tomorrow xxxxxxx
I understand the cynical thinking.... but I did do lots of ooohhhmmms so that positive vibes were sent your way.....
Oh for all your sakes I do hope this person comes up trumps for you
If you can’t face work tomorrow. DONT GO
You deserve some respite for yourself so I give you permission not to go to work tomorrow xxxxxxx
I wholeheartedly agree with this
I'm shocked at the whole thing with the consultant, if he is treating MIL like that how many others
Ann, I am glad that the meeting eventually happened. Well done to the NH staff for getting their ducks in a row and presenting the evidence so clearly.
It must have been awful for you to hear the catalogue of failures and problems and to have MIL's behaviour spelled in in detail like that (((hugs)))
I completely agree that your own health, physical and mental, must come first. If you need to take more time off then please do so. I am sure your GP would do a cert if it would help.
It must have been awful for you to hear the catalogue of failures and problems and to have MIL's behaviour spelled in in detail like that (((hugs)))
I completely agree that your own health, physical and mental, must come first. If you need to take more time off then please do so. I am sure your GP would do a cert if it would help.
I dont know what to say, just that I am so, so glad that this has all come to light.
Yes, If you dont feel up to it - dont go to work
Yes, If you dont feel up to it - dont go to work
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