Morning everyone x
Spamar, we have had a couple of good thunder storms in the last week - not much lightening, but loud rumbles that have had Seamus the dog crying like a baby, and torrential rain. Its also been very hot and humid, too. At the moment we seem back to warmth and a fair bit of sunshine, thankfully. I have - from what I can mae out - two families of sparrows at the feeders at the moment. That's definitely down on the numbers from last year though, as are the blue and great tit numbers, whilst most of the other birds seem to have increased.
2jays - I am so sorry that you have been poorly again - but very glad that you made your sons wedding and that it was such a wonderful day xxxx
Thank you to you, and to all you other lovely people, for your support - it lifts me to be able to come here and read your advice and of your experiences, because it all helps so much xxxx
The falls issue is getting to be a major problem. When oldest and I arrived to visit Mil yesterday, we were told that Mil was in her room, on 15 minute obs, because of that very thing. However, she had still managed to wriggle/writhe her way out of her chair several times, inbetween obs. By some miracle, she hasn't sustained any major injuries, though all feel its only a matter of time before she really does hurt herself. She is however, badly bruised on her arms and legs, with a couple of minor skin tears too. The staff went through all the options and things they had tried with Mil. They have tried propping her up in bed with a rail, but she screams blue murder and gets really agitated, demanding that they 'let her go'. The recliner works for a limited time, usually when she has someone sat by her giving her one to one attention, but eventually the agitation kicks in again, and she becomes 'almost hysterical'. She has also come close to wriggling herself off even the recliner, a couple of times - and the general feeling is that if she manages to 'fall off' a chair like that, then she is more likely to sustain serious injury, so they don't feel its safe to put a recliner in her room for now. She does remain calmer, in her room, on an ordinary upright arm chair and with sensor mats around her. But that isn't working well either, because even when she seems quite calm, the mats are going off all the time because she is on the floor again. As much as they are able, they have staff with her for long periods on a one to one basis, but they simple can't do it all the time. No one can work out why she is doing it - if its because she is uncomfortable, if its because her delusions and general unrest leave her thinking she has to 'go somewhere', or what. They think a waist strap will add to her agitation. Besides which, its 'restraint' and can't be used until the usual best interest or whatever meetings are held to sanction it. The staff was obviously concerned and very frustrated and willing to consider any suggestions from me - but I can't come up with anything either. I'd be grateful for suggestions, if any of you have any.
Canary, I also got a chance to speak to Nurse D, the staff who phoned me originally about the medication strip - its as you say, that is now all up in the air because of Mil's deterioration, though they are still trying to pin the consultant down to an 'urgent' best interest meeting. However, Mil is now so non-compliant with meds that more than half the time, she isn't having them, she is just refusing point blank. I would prefer them stopped completely - Nurse D confirmed that it is extremely unlikely that at this point they bring Mil any benefit at all. And I have concerns for another reason too. I told you guys that I'd gone and bought a load of lip balms/salves and vaseline products on our last visit, because of Mil's lips being so cracked and dry. I'd also noticed her tongue was 'white' . Now I know that from my care worker days as 'cotton mouth', and have always been told that its linked to both dehydration and likely to be caused by medication. As well as the cracked lips being really sore, the 'white tongue' makes food and drink taste unpleasant. I spoke to Nurse D about it and he confirmed that its yet another recently developed side effect of the medication, in his opinion, and that its a vicious circle. Her lips are sore, making it uncomfortable for her to eat and drink, plus the white tongue makes food taste horrible - so even if hungry she refuses, which makes dehydration more likely and both the condition and her agitation worse. I'd been in to see Mil, briefly, before going to see Nurse D, and again Mils lips were in a mess. I'd also been told that she had again been refusing all food and drink for several hours. I'd searched for and been unable to find any of the balms I'd bought, so had asked, and found that they were being kept on the medication trolly, and being applied each time the nurses did their rounds - so about 4 times a day. Its not enough. I asked for the salves etc, but poor Mils lips were too sore for her to even 'pucker up' for her 'lippy' - though, bless her, she tried - and so I'd instead smeared a lot of vaseline around her mouth. I asked Nurse D to please make sure that the balm was applied far more often. (When I go in today, I'm also taking another small vaseline lip care pot, and I intend to put it on top of her wardrobe in her room, where Mil can't get it- but where we can so we can apply it when we visit!)
I was a bit narked to be honest, about this - if Mil is refusing food and drink because she has just reached that stage, then its one thing. But if she is actually thirsty and hungry, and is refusing because the 'cotton mouth' is making it painful, or because things are tasting bad, its a different matter. Making it less painful by using lip balms will encourage her drink - and the more she drinks, the less the awful taste, so she will also be more likely to eat if she is hungry. Which will relieve one of the possible sources of discomfort for her. Its simple - isn't it? After I raised these concerns, I was told that Mil will now be put on a fluid chart - basically, rather than just monitoring what she is drinking, they will be making a concerted effort to get a set amount into her, and they will be using the balms more often. I just think that it shouldn't have taken me pointing out what is so obvious to get this sorted.
Going back to Mil, the improvement was already really noticiable on her lips, so a passing staff at our request, brought her a drink of fanta - she always loved her fizzy pop. Mil drank nearly two full glasses. From being semi-asleep, she perked up, we got smiles and even some laughs. Her speech became clearer, and she told staff that oldest was her 'niece'. They brought a bowl of soup, and she ate the lot, back to the little bird impersonation, with her mouth opening for more as soon as she had swallowed the previous mouthful. Oldest asked would she like a trifle - and Mil beamed at her, then very deliberately gave a cheeky wink. The trifle vanished extremely quickly too.
It was actually a lovely visit, and we stayed for nearly 2 hours. We had a couple of the sudden rigid spasms and gutteral cries, but mostly she was fairly alert, calm, and even tried to sing along to Moon River and Paddy McGinties Goat. Oldest showed her some photographs and Mil, when she saw a pic of Busta, our oldest mutt, said very clearly 'My favourite dog'. Having said that, physically, again she looked even more frail and her breathing wasn't good. And we several times had to stop her wriggling down in the chair to try and get herself off it.
I am so grateful that it was such a lovely visit, for oldests sake. If she doesn't get to see Mil again, it will at least be a good last memory for her. After oldest went home, she sent me a text that had me nearly in tears. She thanked me for looking after and doing what I can for her Nana, said she felt it must be hard for me after Nana gave me such a hard time when she lived with us, and that she 'really, really appreciated' it.
I'm going to visit Mil again this morning, taking her her own supply of her favourite pop to be kept in her room, so its to hand. Its still limboland, so just taking each day as it comes.
Thank you again, all you lovely peeps. Will keep you updated and much love to all as always xxxxx
There is talk of switching her from the pain relief patches to morphine - I want to find out if that is likely to bring her relief, being as that seems to be regarded as 'acceptable' in palliative care, and if it is, push for that too, though.
