Hello everyone,
I'm so sorry to hear about the loss of your cycling friend, JM, but glad the funeral went well, despite the little hiccup. I feel for his wife, being advised to 'go out and live her life now' - you only have to look at a lot of the posts on here, from husbands and wives who have lost their spouses after years of caring, to know that it just isn't that easy - I hope what you said to her, about taking it slowly, is listened to and helps her xxx Hope your dau and her friends enjoy Porthmadog - its a really pretty area, we often head in that direction in Old Red
Amy, when we started to empty Mil's house, we were also stunned by the amount of 'stuff' she had accumalated! She had been really reluctant to let us go anywhere but downstairs and the bathroom in her house, in the 18 months before she moved in with us, and the 3 bedroom doors had always been firmly shut when we visited. We got a shock when we finally went into those rooms, because they were packed solid with an odd assortment of 'stuff' - we honestly didn't know where to start to sort it! Mil had clearly spent a lot of time in charity shops - and also watching and buying from all the TV shopping channels. Piles of second hand handbags, bin bags full of china dolls, carrier bags full of batteries, wardrobes filled with the most peculiar mixture of clothes - an awful lot of T shirts in a variety of sizes, featuring everything from boy bands to some very rude slogans! - and things like mulitple packs of garden solar lights, brand new steam and vaccuum cleaners (mostly with the accessory bits missing) and lots and lots of curtains and cushion covers. She was there when we went through some of the stuff when emptying the house, and she had no recollection of even buying the majority of the things we came across - she must have spent a small fortune, especially on the things bought from shopping channels
I also get the dilemma with food for you and Slugsta. Mil - as I'm sure you have realised - loves her food, especially anything sweet. I would have loved to indulge her in her sweet tooth, because goodness knows, little else brings her any pleasure, but she has other health issues that meant I couldn't. Hoping I can word this in a way that doesn't sound callous - it wasn't that I worried about excess weight or a cake-based diet shortening her life, that aspect really didn't bother me, I would rather short and sweet than long drawn out and unhappy, IYKWIM. The issue for me was that the pleasure she got from the food was more than out-weighed by the pain and discomfort she then had to deal with as a result of weight gain, because of her arthritis and because her breathing (she has COPD) was made so much worse by her being over-weight, and it would cause her a lot of distress. I was also worried about my ability to continue helping her with personal care, if she got to be too heavy, if I'm honest. And she also has diabetes - knowing the painful and horrible conditions that can develop from that, if her diet wasn't watched, was another reason to be careful with what she ate. But if she hadn't had those illnesses, you can bet your bottom dollar that I would have gone along the route of 'have what you want to eat'.
Slugsta, hope you can find a local agency that can accomodate your Mum's needs. Its just disgusting that you are having to do 'the leg work' to try and sort this. Its a bliddy stupid system where Social services can interpret legislation to mean that whilst they have 'legal' obligation to identify the needs of people with dementia, and their carers, there isn't actually a legal obligation for them to provide the facilties/service to meet those needs. We found that out when it came to getting respite. As long as they identified the needs and services required, as long as they met any costs that the service user is entitled to - well, that's the end of their legal obligations. They didn't
have to provide a respite bed, just like I suspect that they will argue that they don't
have to provide a home care service for your Mum - if there isn't one available, well, its not their responisbility. Its a wonderful get out for them
Hi Dad's carer
I know compassionate communication, if it works for the individual, is obviously the ideal way to respond to some of the deluded notions that our loved ones experience, but I'm with Red and R-Anne on this one. There are definitely some things that you absolutely cannot go along with. I - like others - have found that in some instances, 'going along' with certain notions simply fuels the delusion and actually leads to more upset for both the carer and the pwd, sadly. They can become 'fixations' that are returned to, time and time again and cause such misery for all. Mil's delusions often revolved around supposed wrongs done to her by specific people in her life, and she could be utterly vicious and nasty, and get herself extremely worked up if these delusions were in any way encouraged by you agreeing with her. The worst one, which I've talked about a lot, was her mistaken conviction that her son was actually her husband and that I must therefore be the 'other woman'. There was absolutely no way that we could go along with that one - it led to really innapropriate behaviour and comments from Mil, and it led to her being absolutely foul with me, and with her son. I'm afraid that against all the 'compassionate communication' advice, we corrected her as soon as that one was mentioned, and the only thing we found that worked (though not always) was to tell her to go to her room and calm down. Sometimes removing her from the immediate environment was enough to distract her from that delusion, but even if it didn't, without any 'feedback' or 'response', it was harder for her to get worked up to the point of melt down. With other paranoid delusions - such as one of us stealing from her, or her accusing one of us of physically hurting her - we would try distraction - "Oh, I'm sorry you feel like that. Shall I go and make you a cup of tea and we'll have a chat?' - but if that didn't work, the priority was always to stop her getting worked up to the point where she might injure herself (banging on doors and windows, or falling because agitation made her mobility and balance worse) or gave herself an asthma or angina attack. So again, we would ask her to leave the room. It was a horrible thing to do, but in our experience, it was the lesser of the evils on offer in a situation like that
Thanks to all of you for the kind wishes and support - as always, you guys make a heck of a difference to me xxxx
I went to the GP appointment yesterday, with not a clue about what I was going to say, that wouldn't make me sound (and feel) like a complete wuss. It turns out that my lovely GP had been more or less expecting me to show up, and to be feeling like this. I spent a lot of the appointment trying not to bawl like a baby, as what he said felt so spot on about how I feel and it was just a relief that he was able to put it into words far better than I could. He has been in a similar situation, it turns out, as he lost his Father to dementia, and he and his Mum had also had to reluctantly accept that residential care was the only option. He made a point of saying that his Dad hadn't suffered from the extremes of behaviour and paranoia that Mil does, and that he was amazed that we hadn't agreed to residential care as long as 18 months or more ago for Mil. He talked about grieving and how my reactions were natural and understandable. But he expressed concern at me taking on the new job, though he accepted that lifting the financial worries would help me feel better and could see why I want/need to work. He was refreshingly blunt about exactly what caring for someone with dementia entails, about what you encounter and what impact it has on a carer. He understood, and as I think Amy said, it heps to have the validation, the assurance that dealing with it, and the after effects, is pretty tough for anyone, that no one comes out of it unscathed. Counselling has a long, long waiting list, so he has prescribed medication, which he wants me to take for approximately 4 - 6 months. To help me sleep - because he feels that the insominia is having a really detrimental impact - and to 'take the edge off' the awful down feelings, as otherwise, he thinks I will really struggle with work. I was reluctant, I've never taken anything stronger than an occasional sleeping pill, and not even that for years and years, but what he said made sense and he has promised that it won't be for long and that it will help. I have to return to see him, in 5-6 weeks time, to see to what extent the medication has helped. He is certain it will have done, and - obviously recognising how reluctant I was - he made me promise to stick with it, until I see him next, as it can take 3 - 4 weeks to start having an effect. He's made me hopeful that it will help, and that I will be able to shake off the way I feel, without relying on meds long term.
I spent the rest of yesterday working on the wedding pics, and have finished them - with a huge sense of relief. I usually love weddings, but although the couple were lovely, and they and their guests just couldn't have been nicer, this one has been a real slog (oddly, the GP asked specifically about 'was I enjoying' my usual photography work, and wasn't surprised at me saying about how I was suddenly finding it hard). I didn't visit Mil - I went on Tuesday, before my physio appointment, and warned the staff that I may not be in for a few days, due to the physio and us possibly going away this weekend. Thankfully, the staff I spoke to didn't give off any disaproving vibes - though to be honest, if he had, I just might have blasted him, so it was just as well! I found Mil very much in her
'Come on - isn't it time we were going? You did say you would give me a lift home, didn't you?' loop. And all mixed up between being in school and being in work, talking about the 'supervisor', who morphed into the 'head mistress' midway through several of her confabulations. She is still amazingly fluent, one of the staff nurses said to me one day a week or so back that Mil's abiltiy to talk is awfully hard to reconcile with how impaired she now is by the dementia, and that it can make communicating with her, reassuring her when she is upset, extremly difficult. Its hard to find the appropriate things to say, to judge what she she does and doesn't understand when her volcabulary and speech present so well, and yet her comprehension is so poor and her logic so flawed. I'm glad it isn't just OH and I that struggle with that aspect. Mil was quite forceful in her determination to leave when I did, and in the end, I more or less ordered her to stay where she was, telling her she couldn't leave till she had permission from the doctor - to which she responded, suddenly (but thankfully) with '
Yes, you're right - I forgot I had to wait for the teachers to say I can go', and I made my escape.
Wedding pics done, I have no big plans for today - need a couple of bits of shopping, have a tiny bit of ironing (that can wait, if it needs to) and just the usual bits and bobs to do in the house. We're swithering on whether or not to go away this weekend, as the forecast for Friday and Saturday is miserble - OH is supposed to be off on Monday, so we had thought we would go late Sat afternoon, and get back late Monday - however, just found out that he has been booked into a training course, Monday afternoon, so we will have to be back for that, which is a pain. I guess we will just have to keep an eye, and hope the forecast changes for the better!
Hope you all have a good day xxx