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Posted: Wed Sep 16, 2015 3:02 pm
I am sorry if I ramble a bit here. I am quite confused about what to do for the best and tend to swing in various directions.
I moved my mother in with me 18 months ago as we had recently lost my father and she was having difficulties managing on her own. As I was working full time and going round to see her evenings and weekends I thought it would be easier to have her with me and cut down on the travelling time. Mum is 91 and I am a single woman of 58. About a year ago Mum was diagnosed with dementia and I gave up full time employment to be able to care for her more. I took on a part time job. She has since had a couple of TIAs. and numerous falls (nearly always when I am not around). These have lead to problems with infections etc. Her dementia is not too bad most days, however some days she can be really confused and anxious. I need to help her more and more as she in incontinent and doesnt always know how to dispose of her pads or put new ones on. As she can also have problems at night I am sometimes up a couple of times with her although some nights she sleeps right through.
I want Mum to be happy and she is most of the time, and do not want her to go into a residential home yet, however I am not sure if I can continue to work part time ( I am on unpaid leave at the moment and have been for two months) My problem is that although I want to look after here, sometimes I get resentful and that makes me feel really bad. I dont feel as if I can not leave her for more thatn an hour or two, and even then I am anxious she is alright. She does have a piper alarm so I shouldnt worry so much but I do. The only time I feel confident not to worry is on the one day a week she has respite care from 10 - 3. I enjoy this free time catching up with things around the home I can not get on with while she is around. I feel isolated and do not have many friends - those that I do must be getting really fed up with me as I dont stay in contact often. I do not think I will be going back to work and feel isolated. I do have a brother who is very busy and can not help me out in a practical way although he always phones Mum at least once a week. If I whinge about anything he says pperhaps it is time for her to go into full time care. She would not like this and I want to do what will make her happy and do not feel the time is right, so I do not complain too much to my brother now, but sometimes I just want to let off steam and say how frustrated I feel.
Sorry for not making much sense, but it does feel good to put "pen to paper"
Must go now I am being called!
Posted: Wed Sep 16, 2015 3:22 pm
Hi Bridget and welcome to the forum, many of us are in similar situations, it's such a shame we can't meet up for real on here but the forum is a very good second best.
I would just say that if you feel the time isn't yet right for your mum to go in to a home, then it isn't the right time! I am sure you will know when the time comes and it becomes the least worst option. Brothers sound pretty much the same all round- they like to be a back seat driver with their pearls of wisdom if you are lucky but mostly they run and hide in a dark corner hoping things will sort themselves out.
It does sound as though you need to let go a bit and even make better use of "me time" It is not for cleaning the house
Do your local council offer any respite, have you and your mum had carers and needs assessments respectively?
Posted: Wed Sep 16, 2015 6:15 pm
Thank you for responding. I am not sure if my local council have any facilities which would be suitable for us. Mum does have some savings and so do I, mine is relatively small and I expect to rattle through this not working any more. I believe when my savings are below a certain amount (?16K) I would then be able to claim income support perhaps.
At the moment I use Mums money to pay for her day care. I have tried to persuade her to perhaps go twice a week, but she is not keen, so I should be grateful that she does agree to go once!
Thank you for confirming that I should keep her at home with me as long as I can, its good to get approval
It is also good to have someone who understands - many thanks for the contact
Posted: Wed Sep 16, 2015 7:08 pm
It would probably be a good idea to contact eh Carers UK advice line who can advise what you may be entitled to. You should be able to claim carers allowance which is not means tested in any way. Your mum should be claiming Attendance allowance which is also a none means tested benefit. You can't claim CA until your mum is claiming AA.
You may well still qualify for other income such as IS but speak to the advise line.
You certainly shouldn't be both living off your savings alone.
Posted: Sat Sep 19, 2015 10:12 am
And welcome to the Forum. I too cared for my mum with dementia and I am single. So I know what it is like to have it all on your shoulders.
If at all possible, I would recommend NOT giving up the part time job as without it, I suspect you would be even more lonely. You are doing much better than I ever did. I failed to get mum to day care!
Have mum / you had an assessment from Social Services? If not, I would suggest starting there as you are legally entitled to one. And yes, you would be entitled to Attendance Allowance which is non means tested. I used mums to pay for dementia sitters from Age UK. I believe Bluebird Care provide the same service if they operate in your area. If mum has a dementia diagnosis, I would also check that she has to pay council tax; she should be exempt.
All of this will not solve the problem but may allow you a bit extra cash to make life easier. I agree that you will know when / if mum needs more specialist care. One word to the wise though, after a fall and yet another urine infection, I had to find a home for mum within two days as she ha deteriorated so much. It may be worth looking at homes now even if you think you will never need them.
Good luck, and join in where you feel like it. You are amongst people who understand here,
Posted: Sat Sep 19, 2015 10:43 am
Thank you so much for your reply, it is so good to know I am not alone! I know there are loads of carers in my situation and would love to be in contact with some.
Mum already has attendance allowance and I have just applied for carers allowance. I will get in touch with my local council re council tax - thank you.
Mums AA helps to pay for day to day needs and there is not much left after paying for day care etc!
The main reason for me giving up part time work is she is not safe to be left for too long on her own.
I feel a bit guilty about her day care, as she says she does not like it (but according to the staff she is really happy and cheerful, enjoying conversations with other members)!
I think I need to organise myself a bit more and try to be more motivated, which I am struggling with at the moment. I need to get myself into order
Most of the time I do enjoy caring for Mum, but occassionally I do get resentful - then feel guilty, but I guess everyone has the same emotions.
Mum was a really good mother to me so I want to give back a little. She may not have many years left and I want them to be happy for her.
I do have some really comical moments which lift me up when I share - like when I woke her this morning, she wanted to know if she was working today
Thank you again for taking the time to contact me
Posted: Sat Sep 19, 2015 11:59 pm
Bridget, please don't be too spooked by your mum saying she doesn't like day care! it's very, very common, I promise you! Think of them now more like 'toddlers' who just automatically say 'I don't like school' - but when they get there they do.....
They do, alas, sort of 'try it on' and maybe what they genuinely don't like is the effort of being taken there, both physical and mental (ie, to adjust to a new environment), and maybe, too, it 'scares' them to see other 'old people' as that reminds them that they, too, are old (my 91 y/o MIL regularly refers to 'the old dears'.....as if she weren't one herself!).
But day care is good for both them - all that external stimulation and change of scene does help with the brain cells! - and it's good for you too, as it gives you a much needed break. Caring is all about 'pacing yourself'. Breaks are essential. And, sadly, for that reason, even if your mum genuinely 'doesn't like' day care, it is something she will need to have to endure because it is her 'contribution' to the situation. Were she in her full faculties, as a good mother, she would not want to make unreasonable demands on you her daughter. You too, have a right to a good life....
Posted: Sun Sep 20, 2015 9:05 am
Thank you for your reply, I know you are right about Mums day care and your confirmation is really appreciated.
It is just like having a toddler, unfortunately I dont have the same amount of patience and energy, as I had with my own toddlers!
Posted: Sun Sep 20, 2015 9:50 am
Yes, I agree about having more patience with 'real' toddlers! I think too there are additional psychological complications on both sides. For a start, even though they have dementia, our parents still think of themselves as our parents, and us their children - so that means (according to them!) they still get to 'call the shots'. In a way, they want it both ways - they want to tell us what to do (parents to children) and yet also want us to look after them (ie, be 'our' children!!!). That's very common, and very pernicious. I'm afraid you have to 'break' them of it (not nastily, but firmly!), and move into the parent space yourself. That means you stop 'asking' them what they want, and instead 'tell' them what is going to happen -
'Today you're going to day care Mum, let's help you with your coat' that sort of thing....
And be honest about why - 'I've got things I've got to get on with in the house' or 'I need a bit of a break mum,' or 'I'm meeting a friend for coffee'.....then remind them when you are collecting them again ,'I'll be back after lunch'....keep timing 'vague'. When I visit my MIL (in a care home) now, I always say 'I'll see you next time' or 'in a day or two' of 'after the weekend'.
one of the 'blessings' (!) of dementia is increasing vagueness about time, so hopefully they don't really realise how much time is passing.
When you say you worry about leaving your mum for too long, what is it you fear will happen? They will fall, need the loo and not be able to get there, try and do something they can't (eg, boil the kettle), wander out of the house? If you isolate exactly what it is you fear, then maybe you can take steps to reduce the risk - eg, lock the kitchen door so they can't get at the kettle!
Or is it you fear they will be bored? Sadly one of the (many!) things that makes caring for someone with dementia so 'wearing' is that they lose the ability to entertain themselves! Again, like toddlers left alone with a box of toys, they don't know what to do - they need 'someone else' (us!) to 'direct' them. My MIL can't really watch TV on her own any more- she needs me to interact with her, and discuss the action, and laugh with her (increasingly she loves slapstick - she likes old Morecombe and Wise and laughs away at their 'silliness' - it's another sign of loss of cognitive faculties alas....)
If it's just a fear they will be bored, I wouldn't worry about it too much. Not only is, as I say, time becoming increasingly vague to them, but, to be blunt, providing they are physically safe, I'm afraid their stint of boredom is, just like having to put up with day care, part of the 'deal' with you. You give so much of your life to them, and put so much of yourself and your own wants on hold for them, that they really have to do something in return (even if they have no idea any more why!!!)(like I say, measure it against what your 'real' mum would say and want, were she still in command of her mind - I'm sure she would NOT want you to sacrifice everything for her - no mother would - we wouldn't want to do that to our own children either)
As for your bro, can he step up to the mark from time to time - eg, however busy he is (or says he is!!!!!!!!)(or his wife says he is!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!), he does need to make time for his mum from time to time - that may be things like 'every Thursday eveing after work he comes and spends the evening with her, so YOU can go out with friends'...or, better still, has her say, to stay, one weekend a month (so YOU can get a weekend off, or, better still, away on a mini-holiday!). I do appreciate he will probably refuse, and say 'well, put her in a home' but I think you have a right to ask him to help you all the same.
By the way, financially, I would INSIST that whatever your mum's care costs in the end, he does NOT get a true half of whatever is left! YOU should 'allocate' some of her money to you, as your 'salary' for looking after her. This is not because you wouldn't do it 'for free' anyway, but because there is no way that your bro can opt out of all the work of looking after his mum, get you to do it for free, and then put his hand out after she dies for half of her estate! No way!