Thanks Ann, all/any information is so welcome and helpful - this forum is a life saver, makes me realise I'm not the only one and there are people coping with so much more than I am. Just got back from my mothers, spend most of my free time there now, she's very suspicious of the new carers and hid in the bathroom this morning when they came, they phoned me and I told them to leave her cereal out with a jug of milk but not to push it with the tablets - she's refused them 3 times now. Would only take them from me but not the new one, so we may never know if the Risperidone works or not! Place was a mess, I think she's been up all night - water in the sugar bowl, tea in the glass of water, all this evidence is telling me she is now starting to have problems with simple tasks that she could manage even a few weeks ago. The carers didn't feel they should do anything so the place is untidy, the kitchen floor is sticky and the toilet bowl not cleaned. The bed never gets made anymore and I had to put her washing on again today. Sorted out her fridge again yesterday and did all the shopping, vacuumed the house and generally tidied up., (What am I paying these carers for?). Anyway, she reckons last night there was some kind of party, all the "gang" came home late and made all this mess. Made the big mistake of saying, do you think it could be a dream (I know, I know, wrong and stupid of me, but I'm still obviously in some kind of denial) - she got all huffy and said that's it I'm not telling you anything anymore,. Then 5 minutes later after I made her some lunch she told me all over again. This time I just sympathised and her world was ok again.
If I had a big house, if I had a ton of patience, if my partner and his son are willing to live with this problem for the foreseeable future, maybe I could avoid the CH situation. Should I sell up and move into somewhere with her? Should I use some of her money and get a downstairs toilet/shower room built so she can move in with me? Ive been thinking about releasing some of her equity (I have LPA ) and have a live - in carer, but her place is so small and there's no guarantee it would work. Like yourself, I have worked in the caring setting and my experience has told me to step away from the residential care scenario - having said that, there is one really good home about 10 miles from me that has the best reviews, the happiest people and the loveliest carers - but how do I even bring the subject up with her. I think it probably has to come to a crisis before we could even consider it.
Hi Count2ten,
We had the same issues with carers, with Mil before she moved in with us
It took a long time, but in the last few months, Mil had finally agreed to just one carer visit a day. However, she would not let them actually do anything once they got there. Her LA had a minimum 30 minute visit rule, and the staff would come in (usually with the key from the keysafe, as Mil would not answer the door) check her blister pack to see if she had takne the previous nights and that mornings tablets - not that they could do anything other than note it, if she hadn't taken the night ones, was too late then for her to take them - and if they were lucky, she would make them a cup of tea and chat for a short time, before telling them to leave. If she let them stay 15 minutes, they were doing well! So, like you, OH and I would be down there, 4 or 5 times a week, trying to persuade her to let us help with all the things the carers were supposed to be helping with - not that she would always let us, either!
The medication issue was another biggie for us. It wasn't so much that she would refuse all meds, as that she would forget to take them, or take too many or generally mix and mess them up. Have you tried giving the respiredone covertly? Yes, I know thats frowned on by the medical profession, but as carers, we all know, needs must!
Please, please, think long and hard before either moving in with, or having her to live with you. There are two of us here, with Mil, and though I do the bulk of her care, at least I have OH, who can and will step in regularly, when he is home, and share the load. On the days when he is working a 12 hour shift, and I am solo with her, I am exhausted even on the good days. On the bad days, it goes beyond exhaustion. You do become very isolated, and you do find that 99% of everything you say, do and think is all about the person you are caring for - its all consuming, and as 2jays said - its relentless. You can't plan anything - even with really good day care available for Mil, I have to cancel so many plans last minute, either because she is ill, or because something comes up that needs sorting for her and it can't wait. In the last 3 weeks, I've had to drop out of two photography assignments, because Mil had the runs and I had to be at home to deal with cleaning her up - she won't let OH help with personal care, she can't do it herself and it can't be left, even for an hour or two. I also, during this time, cancelled one of my weekly volunteer stints at a gallery, as I got a last minute phone call saying that the extra banister rails we needed were going to be fitted that day - and I cancelled lunch out with friends simply because I was so tired, I couldn't face it! Other days, whilst she is at day care, I've been dealing with paperwork, out shopping for and picking up stuff for the bathroom adaptations we have had to make, on the phone sorting appointments for her, picking up meds, and tackling jobs that I can't do when she is around - like mopping floors, and searching her room for hidden, smellie undies. Finding time for the rest of the family is a huge effort at times - finding time for myself - er, pass! Not happening a lot of the time. What about work, if you work? I'm a free lance photographer, and it takes military style planning for me to be able to get to say a wedding job - OH often has to use a days annual leave, so I can maybe take on one wedding a month. And it will impact on your relationship with your partner, no matter how strong that is - OH and I have found that a lot has changed, and though we are doing OK, it hasn't been easy - and its not going to ge easier.
I could go on and on, but you will have got the picture. Suffice to say that even with experience, even with good day care, even with OH so I'm not solo, I often wonder if I am going to be able to sustain this - so far, I'm managing - but, to be blunt, we all know that with dementia, its probably only going to get harder, hun x
It was a 'nasty' day, yesterday - first one in nearly 2 weeks! All 'I want' and when and if she couldn't have, straight to insults and digs. I'm apparently evil, I like being cruel, I'm spiteful, I'm lazy, I have no heart, I do absolutely nothing for her, it would kill me to even give her a tiny bit of help when she needs it, I get a 'kick' out of making her miserable - and the best one?
Its a good job she can take care of herself because she would be stuck if she had to rely on me!!!!. As is typical, she would wait till OH wasn't in earshot, before delivering ewach comment - however, he is wise to that, and heard plenty. Thats a tough one for him - he knows what i do, and he has trouble getting his head round hearing his mum being so horrible to me
Sundowning made everything worse - again, no extremem agitation, but constant 'Home, home, home'.
Sample going into GP's today - think it must be a UTI, or maybe that should read, I
hope its a UTI! Its been nice having the comparative calm of the last couple of weeks, don't want this to be the start of another phase of upset
