Morning everyone,
Again, massive thanks to each and everyone of you for the support and advice xxx
Spamar, so sorry to read about the hassle with the card. There do seem to be a lot of incidents involving fraudulent use of cards happening at the moment. Oldest dau had her card used to purchase several things on-line, about 2 weeks ago, and both her pay-pal account and email were hacked at the same time. She spotted it quickly, thank goodness, and got it sorted, but such a pain in the btm to deal with. Sending {{{{hugs}}}}
I will be emailing the HBM (Health Board Manager) probably on Wednesday afternoon, but before I do that, I need to speak to Mil's new consultant on Wednesday morning, Dr S, at the medical review. Firstly to ask if she can attend the CHC review next month, and secondly, to get her opinion on the points raised by the HBM, which I think (and the CH think) she is likely to use to try and remove 1-1 care. Specifically, the suggestion that Mils behaviour has been caused by recurrent infections, and the insistence that an 'in house OT' should see if they can come up with some sort of seating that will stop Mil ending up on the floor, either through deliberately throwing herself to the ground or through her writhing, wriggling and jerking herself off the seat, due to the TD.
There is plenty of documented evidence that infections, whilst they may have caused some worsening of the behaviour when Mil has had them, overall have had nothing to do with the decline that has led to the need for 1-1 . That need is down to the TD, and the increased psychosis caused by a combination of the dementia and over-use of meds. I've already explained this to the HBM, as have the CH and even the CHC assessor who came out to see Mil, but she seems inclined to ignore and ride over what we have said - I think it needs the clout of the new consultant to get through to her. My big concern here is that the HBM and Dr R may try and insist on more medication, possibly in the form of extremely strong anti-biotics. Struggling to find a way of writing exactly what it is that worries me about that, and a little worried about how it might come across. But - taking a deep breath - I'll be blunt. She is dying. Declining physically, getting frailer, breathing getting worse, and basically slowly but surely her body is 'shutting down'. That's the opinion of the staff, nursing staff and her new consultant. And I can see for myself that they are right - it may be days or weeks away, but its happening - and I hope that everyone understands me saying that its time now, that this is what is right and best for her. She has been through enough. To give her continuous strong antibiotics could prolong this process for her, whilst at the same time give unpleasant side effects, upset stomach, vomiting, etc. And will probably do absolutely nothing to relieve the TD symptoms or agitation. I feel so strongly that at this point, all emphasis should be about making this last part of the journey as comfortable and comforting as is humanly possible - not experimenting with yet more meds that could extend and make this stage horrendous for her.
The talk of an OT to look at 'chairs' worries me. After the CH trying out alternative seats that would prevent Mil ending up on the floor, and not finding anything that she couldn't get out of, the only thing that seems to be left is to look at restraint, particularly as one of the issues is Mil falling from her bed as well as chairs. The CH - and I - guenuinely believe that if bed rails are put in place, Mil's strength and ability to 'thrash' her legs and arms around will lead to probably injury, and possibly, her managing to throw her legs/body over the rails, and her ending up with an even more serious injury due to falling from what amounts to a greater height, or banging herself on the rails as she falls. As for a waist strap or similar in a chair, the huge concern there is that it will cause her immense distress and agitation, and the poor woman is distressed enough - to take action that would almost certainly increase her misery and upset is cruel. She already has a tendency to gouge at herself, and pull her own hair out when she is frustrated and upset, there is real concern that preventing her from moving from her seat will increase the liklihood of self injury, and also increase the incidents of her hitting out at staff/residents if they get within her reach. She is still considered to be 'mobile', because she can still get herself up and walk on occasion. Because of this, as I understand it, any form of restraint would be usually considered totally inappropriate, especially as restraining someone to a bed or chair increases the risk of bed sores, and her skin integrity is already compromised as a result of skin tears and severe bruising. Again - an 'experts' opinion on this will, we think, carry more clout than anything we say.
If the HBM comes up with anything that may make Mil's quality of life better, then I am more than happy to consider it. But, there are two major obsticles to taking that approach. Firstly, the worry that if we agree to try something new, that the 1-1 will be withdrawn before we know if the 'suggested solution' works or not, and then we will face a huge battle to get 1-1 back. And secondly, by far the biggest concern is knowing that anything the HBM suggests is going to be based around saving money. No matter how skillfully she tries to present her suggestions as being in 'Mil's best interests', we all know what her bottom line is.
The email will also say that I have 'no confidence' in Dr R, in light of the concerns raised by the CH, and request that he is not involved. I don't know if the HBM can ignore/over rule that request - it seems like she can interpret the rules and make decisions as she wants, no matter what I or anyone else thinks - but I want a paper trail of that request being made. In the meantime, I have asked the CH to provide me with the notes that pertain to how many times they approached Dr R for help and advice, and his responses. I have only seen a few so far, none of them show him in a good light.
The suggestion to request to see all notes/correspondence relating to Mil under FOI is brilliant - Thank you Red
I'll be following that up - and I've also requested from the CH a list from Mils notes of all her medications, what was prescribed and when - and by whom. So many different consultants involved in her care - I need to be sure about who prescribed what - and why! I think, no matter how I approach fighting for Mil, all that information will be very useful to have.
Visited Mil yesterday, but found her deeply asleep, and I only stayed 20 minutes or so. I know the bean bags on the floor are the safest option for her at the moment - but dear God, its pitiful to see little, frail Mil sleeping on the floor, with bean bags and mattresses and cushions heaped around her, her legs and arms sticking out and covered in bruises and tears. Add a few cardboard boxes, and she would look like a bag lady. Her door is left open, to accomodate the bean bags and make easy access if more staff have to rush in, in an emergency. I see other visitors passing and looking horrified at seeing her like that. Just no dignity for her left at all, all I can do is be glad that she is probably totally unaware of just what her current situation is.
One nice thing during the visit was that several staff I saw came over to thank me for the email I sent to the head office, saying thank you to them all for fighting so hard for Mi, and for caring for her. I am so glad I made the time to do that - it seemed to mean an awful lot to them all.
OH went back to work yesterday - thankfully! Because having a bloke recovering from Man Flu in the house is a bit like living with Victor Meldrew ! Youngest is actually being Ok, none of the major tantrums/kick offs that I have been anticipating (well, not so far, anyway). Meanwhile, we have booked the travel for us to go to Ireland to see my sister at the end of next month (so looking forward to that!) and, having had a run of bad nights, have at least had time to catch up on sorting photographs and get on top of the housework (You have to lok for the silver lining where you can, I guess!). Today, I will pop to see Mil again and just pootle I guess.
One of the photographs I've finally edited, I thought I would share. I have a 'thing' about damsel and dragon flies, I think that they are just beautiful, and on one of OH's kayaking runs, wandering by the river, I saw dozens of my favourite species of damsel - the Beautiful Demoiselle. They are absolutely stunning little creatures
Much love to all of you xxxxx