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Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.
Thanks marionq. I don't know how much longer it will all last, its getting harder.
Its OK I know when I am beat and need to do something father ted, I am fed-up of feeling the way I do so I need to do something about it, so for now its tablets.
Yes, I was happy to leave her they managed her really well. Its time to start pushing it more I think
I do feel bad some days about it all, but essentially I am powerless over this. Not much I can do other than carry on until something happens and inbetween try to sort myself out
Well mum's churpy, off to bed she goes, about the right time for her, be another 40 mins before she settles, plus she's found her hair net (which makes me chuckle) but tonight no fights over tablets or bouncing around till late-phew!
I on the other hand feel utterly fed up with things, just like many others on here. I can't even be bothered to watch TV.
Tomorrow is another day
Lovely lady, your Mum - very smart!
I think a very high % of us are at risk of carer breakdown. We are doing a job we don't want, aren't qualified for, not paid for, at the same time watching a much loved person, descend into the abyss that is dementia - it's enough to make anyone weep - especially in the middle of the night - when I think most of us do........
I quite agree, its a rollercoaster of things, never being able to settle, because as the disease progresses we have to re-adjust, and then again, and again, each time a deterioration
I'm very aware I'm feeling quite low at the moment, GP has signed me off for two weeks, so I'm here with mum all day. I still haven't completed all the stuff for mum's financial assesment, which I'm dreading, but I will have to see what comes and take it from there
Mum herself is still in bed, she's flipped from being early riser to getting up later. I'm sure she's beginning to sense something is wrong, not surprisingly as I'm finding it hard to hide how I feel at the moment, I need to find a better place within me so at least I can be more cheerful around her.
Ironically I have just recieved a letter in the post from the LA, they have set mums weekly contribution based on the information they already have, I am pleased because my stress levels were through the roof after being scrutinised over her finances -it's an unpleasant experience, but all done now -thank god!
It's a relief to have that sorted. I hope that you manage to get more help sorted soon.
Lovely photo. Your Mum looks great. Lovely hairstyle. Xxx
Thanks anxious annie, I have to say my tolerance of the financial assesor was beginning to run out
Yes, she's a sweetie on good days, but can be fierce when her mood changes, I have to dodge her lethal weapon -her walking stick. Getting her hair done has helped improved her self image I think, lets hope it lasts for a while. Very glad I tok her to the dementia complex where they have a hairdresser, rather than take her to her old place as they couldn't cope with her anymore
Thank you Lawson58. I think as humans we do what we do, this forum is an epitaph of that. I liked your use of 'evil' as real world entity philosophically -there are real evils in the world as well as good, what we choose to do about those evils will shape our future destiny.
Many of my colleagues burned out after the bombings, most of us have moved on, some like myself have changed direction and I now work in acute medicine as an advanced clinical practitioner, I'm simply too old to work in a busy city hospital critical care unit these days.
I just completed my MSc and might go on to PhD and leave the clinical world of the NHS behind as I get older.
Stay well x
Mum has her shoes on, handbag ready and is poised looking at me to go for a drive and have coffee somewhere, so as I have nothing better to do (as in clean the house, change bedding, do the garden etc etc) I will take her for a drive and see where we end up -probably Costa as she likes the blackberry and raspberry cake thingy they have.
Like many, my health is increasingly struggling, just keep at it!
It took months before I could arrange suitable transport, now I have two mornings a week.
Bliss but not to be taken lightly! There is a little reluctance starting to creep in.
Now I am trying for respite,
I too had a master plan of a home nearby with a day centre, in my case I came across a county border problem.
It has been agreed I need respite for my husband so I can rest, albeit at home. The wheels run very slowly.
Yes I thought I might have the same county border problem with the day care, but I remembered that where it is falls within Cheshire -just.
We are still waiting to hear about the package of care, which seems to be increasingly unlikely, although I know outside agaencies are commissioned -might be their books are full of clients??
I feel as if I live inside a bubble, gets very lonely sometimes, mum and I can't have a conversation like we used to, I guess thats why I've suddenly fixed on talking point, although useful ya can't beat a good chinwag over coffee. Plus everyone asks me how mum is, I seem to be invisible most of the time.
The neighbours though very good, tend to keep their distance as mum gets worse. Mums friends have stopped calling and visiting, clearly they feel they can't be of use if they can't have a full fledged conversation. Its fine I understand some people do find it difficult to know how to remain a friend when communication is challenged along with memories.
Thanks for your support, it does spur me on when someone out of the blue pops me a message or two. I have to keep to going, keep chipping away at it
You are right, it is not just about us but everyone else in a similar position. We fight for us all. Sometimes this wider fight gives me confidence as it means it is not just about me.
I feel the present system of county funding is working against the system in many ways and affects the quaility of care. We have to drip drip drip, when we find the energy!
The feelings of being lonely is insidious and often unexpected. We can rationalise out then it hits at unexpected moments. I agree about the idea of a chinwag over a coffee, but this is the next best thing. No time restrictions either!
Sometimes it feels as if we are the new lepers to so many.
It is good to have you on here, though I am sorry for the reason why. Your Mum's photo was lovely. Alice x
Its certainly not an equitable system, thats for sure.
Yes the loneliness can get very insidious, and without a break it can begin have an affect, which I can't describe on somedays, but certainly a feeling of being torn by it somehow. I think your use of the words new lepers is a good description, also add on to that humility.
I feel as if we are written-off, which I can understand the mentality behind that, but is it acceptable? I humble myself by thinking that those who mock may find themselves in this situation sooner or later and then think thats an awful thing to wish on someone.
Talking point has been helpful, and for now I will contiue to post, even if somedays are quite dark, but how I long to be back before all of this started, with friends and being 'normal' if such a status exists at all.
Yes mum is doing well, thats my only saving grace at the moment. Not had many bad days in the last few weeks (unusually), but I have noticed she's sleeping more in the day than before and she is changing physically and eating less and less. I sometimes look at her and think maybe we won't get to needing a care home. Wouldn't surprise me as she is determined not to.
Mum has again managed to beat me into submission to take her out for a 'drive'. I can see she's wanting to go somewhere and I suppose in order to keep her in good spirits I will have to give in and go somewhere. I might go shopping but I try to avoid that as mum only adds to her huge stash of cakes and chocalate, which at some point this week I need to sort through for expiry dates. I'm in a cold sweat at the thought of shopping, but needs must as its Friday .....and we have nothing of nutritional value for tea. I will be entirely bald at this rate....