Hello everyone
Essie, nice to see you back
xxxx
Spamar, so glad the necklace has turned up for you - what a relief! x
Oh, Slugsta - I am so sorry about little Cleo - sending massive {{{{{{{Hugs}}}}}} Losing a much loved pet leaves such a huge gap in your life, I know - its heartbreaking xxxx
I don't quite know where to start now! OK - first - the funeral. Finally got hold of SD (who claimed to have been trying to ring, yet his number didn't show even once on the call log!) - anyway, he has given me the information needed. The funeral is next Wednesday, at the crematorium. Still waiting for confirmation that oldest can get the day off work - youngest has an exam on that day, but we have had permission for her to sit it at midday, and will go straight to the service after picking her up - that was her choice, she knows that whatever she chose to do was OK. That actually works out possibly better in a way - SD wanted us all at the house to leave together, but I feel that's another potential point where there could be a kick off, so I'm happy to avoid it. My Mum's coffin is going to SD's house the night before - I suspect that it will be for people to see her for the last time. Youngest does not want to see her (she terms the whole idea of viewing someone after they have died as 'gross'!) so again, her exam helps us avoid that for her, without the risk of causing offence. Son is also going, but will be leaving directly after the service as he has a meeting with his disertation 'adviser' late that afternoon, so has to head back to uni - though he will be home again that night. SD also let me know that 'family flowers' are expected - how stupid is it that till that point, I hadn't even thought of flowers! After talking it over with OH and kids, just because on balance it felt like it was the right thing to do, I've organised a wreath -I'll pick it up on the morning, and I'll go by myself to SD's house to leave it there, and to see him and brother before the service - hoping that will appease them too. Unexpectedly, one of my nieces has been in touch to say that she fels she would like to go and could I ask SD if that would be OK? (Her Mum is the sister who flatly refuses to attend) - SD was actually really pleased that she wants to be there, and that seems to have appeased him over my sister not going, thankfully. Yet another sister (my half sister, who I am actually really close to and have the most contact with) who lives in Ireland and who is also not attending, has also contacted me to warn me that brother is apparently not happy about the cremation, but feels as though he has been railroaded into it - she feels that there will be a blow up between him and SD and had wanted me aware of it so I can avoid getting 'dragged in' as she put it. All I am hoping for is the chance to say a quiet and dignifed 'Goodbye' and then leave. If that means leaving right after the service and not going to the pub, then that's what I'll do - all it will take is one hint of any trouble from bro or SD, and we will be off!. I feel 'comfortable' with what I have decided to do/not do and quite happy to accept that if SD, brother or anyone else has an issue with my choices, then that's up to them and I won't feel guilty or have regrets about my actions. I have considered their feelings as well, as much as I feel I should, which as OH says, is quite probably more than they have done for me.
Now on to Mil! OH and I went to the meeting, more than half concerned that there would be some sort of a curve ball thrown at us. OH was sure that there would be pressure to have her home within a day or so - I was just 'ready for anything'. Awful as it sounds, neither of us expected them to be absolutely honest about what she is like. We got quite a shock, though not a nasty one. The last med she was on, the memantine, was finally stopped (after being reduced in tiny increments over the last 2 - 3 weeks) yesterday. All that's left is an anti-depressent that they feel could well be helping, and the prn med, which works - but they warned us, not instantly. It takes up to an hour or maybe a little more to calm her down. They cannot find a med that works quickly, Mil is surprisingly resistent - as we know for ourselves - to a lot of the sedative type drugs available. The consultant then passed over to the ward manager, who is on the ward all the time when he is on duty. The WM told us that there is still paranoia and fear, which they see mainly towards the evening (sundowning) where Mil frequently gets 'very agitated' over men coming to kill her, shoot her, etc - wanting to leave, wanting her husband/parents. He also said that they sometimes encounter her getting cross at being woken - commenting that 'she really likes her bed, and really doesn't like getting up!'. In between, she was described as 'very settled', that she gets involved with a lot of the ward activities, and seems quite 'happy and content'. He quickly pointed out that her calm periods, if they continued at home (should she come home) would coincide with DC and that
if she came home, we would be the ones dealing with both the sundowning and the sometimes early morning difficult behaviour - and added that it is still 'very difficult', she does still sometimes get 'very upset', and that it could be very intense. The consultant also chipped in with saying that they really don't know to what extent the meds are responsible for the day time calmness and content that they are seeing - he pointed out what a lot of you have pointed out - that the ward environment, where she doesn't have to leave to go to DC, where there is a very structured routine, could be helping her a lot too. Along with the fact that there are staff to 'share' her care when she gets upset, which makes dealing with it less stressful than it would be if just one individual had sole care, and that it doesn't give Mil the chance to focus on getting upset with just one 'carer'. So it may well be that the 'environment' has had more to do with managing her needs and behaviour than the medication changes. However, as he pointed out, until we actually take her home, we wouldn't/couldn't be sure of any of that. There was/is a chance, particularly if it is the meds, that she could be even more settled at home. But it was clear that everyone there doubted it.
So, here is what they have advised. In 2 weeks time Mil is coming home. BUT its for a trial period of 'about 2 weeks', her bed will be kept on the ward, she will remain under the section 3. Day care will be in place as before. If it seems that its working, that she is better at home, that we are coping OK, that 'trial period' can be extended. But if we feel that no, she is worse, that being home doesn't provide the structure that helps her, then she will be re-admitted until a suitable placement can be found for her - if that happens, then its obviously the structure that is what's needed to 'manage her needs' and the consultant feels that it would not have to be an EMI nursing home that is specifically needed, EMI would probably be enough. Which gives us far more choice. The consultant also said - first time that they have even mentioned this - that if she goes into a home, she would be fully funded.
I can't begin to describe the relief that both OH and I feel. For a start, it was instant justification that we have been right to fight and argue and stick to our guns over the whole insisting on a proper assessment. It really feels that they have finally had chance to see what the issues are and that they have now had to address them properly. It also feels like we have absolutely done everything, explored every single option that there is, in order to care for Mil. If it works out that she can stay at home - great. If it doesn't, I really feel that we simply couldn't have done any more to at least try and keep her with us, that we have done everything we possibly could have done, to do our best for her and - more importantly - what is right for her. I think the hospital expect us to have to go down the care home route - we also are well aware that that is a very likely outcome, what you guys and what they have said about environment and structure makes sense - but knowing we have a much greater choice now over where she might go (if necessary) is a massive relief, along with knowing that we will probably be able to keep her local - knowing that makes it a lot more acceptable to us than the idea was previously. If it does end up with the care home option, I guess then there will be a different set of battles ahead - I've read enough posts on TP to know that 'residential' absolutely dose not mean the end of caring, simply that there are different issues to face. I'll also need to find out about this 'funding' - specifically, if there is a time limit on it, if it can be withdrawn, if there are reviews that happen that might lead to it being withdrawn - Mil has enough to self fund for about 18 months - what I don't want is for us to get to the end of that period, if funding can be and is ever withdrawn, and possibly face a situation where the LA say that where she is is 'too expensive' and she will have to move - I'd rather know in advance, if possible, what at least some of the potential outcomes might be!
The next few days, I intend to just try and relax. It feels like the last two weeks especially, have been quite unreal and really 'full on'. I want a bit of just 'plodding along' for a little while, to get the funeral over, to sort out preparing for Mil coming home - its going to be strange going back to a toddler proof house! - and hopefully, give myself a bit of a rest to see if this stupid hip will ease.
Again - a massive, huge and heartfelt 'Thank you' for every single bit of advice, support and good wishes from you all. These last couple of months feel like they have been a particularly rocky part of our dementia journey, and I know I have said it before, but every one of you have helped me far more than you may ever realise. Thank you xxxxx