Mum is not happy

[Margaret W]

Natashalou, I really didn't respond to what you said, I was so tied up with feeling relieved by your reply. I think I have got to get to the state where I know there is no alternative, you are right, you cannot turn the clock back.

I never considered my mum living with me. I work full-time, but even if I didn't I am no carer. Carers do the job they are trained to do, I am not trained. They work shifts, so they come to each shift having had a break - if our mums were living with us that wouldn't be the case. Plus mum does have the company of other old ladies, even if she doesn't like them, it is mental stimulation from people of her own age. There would be nothing for my mum if she lived with me. She doesn't watch telly any more, she has a back problem, so cleaning is out unless it is at waist height.

Oh, I don't know. I am still talking myself into it!

Thanks, Natashalou. I don't think things will get better for either of us. Keep in touch please.

Best wishes

Margaret

 

[Margaret W]

Being a bit slow, I seem to have missed some of the other helpful replies, I apologise to those who gave them, I found them all so useful.

Quite a few of you seem to be in the same boat as me, it is so reassuring to me. I feel so much stronger knowing that it is not me, it is the illness and the system, and mum may never be happy. Like Elaine, I just hate people not being happy. I am a University lecturer and so many students are not happy, and we try to point them in the direction of help, and even if they don't succeed well in their courses, we at least want them to be happy that they have tried.

Whatever tactics I apply to students don't work with mum. I'll just have to accept it.

Thanks so much everyone, you are stars. I really did need the low-down on how bad it can all be, perhaps now I can move up a bit.

No, mum would not be interested in playing scrabble or snakes and ladders or anything else, never has been. Can't sew a button on to save her life. Never painted, never done any crafts, no puzzles. They do have a game of bingo a couple of times a week, but with half the residents not having a clue what they are doing, it isn't much fun for mum. She just isn't as far down the line as many of them.

Anyway, thanks everyone, I really appreciate it.

Best wishes to all

Margaret

Best wishes

 

[Kate P]

Hi Margaret,

I do sympathise with you - it was always going to be an upsetting time no matter how much you're doing - even if your mum had settled and was having a great time you would still have moments of guilt and doubt about whether you did the right thing - and I personally think you have done the right thing.

My only thoughts are this:

Firstly, when your mum was living by herself was she happy? Of course not and even more than that she was a danger to herself. So now she's in the home she still isn't happy but at least she's safe and warm and well looked after.

Secondly, you mention that you doubt sometimes because your mum seems "better" and this makes you doubt whether she does need to be in there. I would suggest that the reason your mum seems better is because she is being well cared for 24 hours a day and is getting her medication regularly and on time.

I was friends with a man who had Obsessive Complusive Disorder. If he took his medication he could control his condition and his severe depression would improve. However, once this happened he would declare that he was "better" and would stop taking it again and plummet back to square one again.

I think this would be a bit the same with your mum. If she left the nursing home to live by herself again it wouldn't be long before she was back in the condition that pre empted the requirement for a care home anyway.

I feel I've been a bit blathery but I'm thinking of you and hope things get better for you.

 

[scarlett]

Dear Margaret,
I am a qualified nurse who has managed care homes for last 10 years except for the 3 years after my mum was diagnosed age 56 in 2003 so I hope i can help a little from both sides.
I also have had a very difficult childhood with my mothe, a single parent who i found out after her AZ diagnosis was diagnosed with a personality disorder when i was 3 so no your saying how you feel about your mum is not hard to identify with at all. I grieved all the more when she was dignosed as it meant we would never have the good relatinship as adults that i had yearned for
despite all this i know i could not have done any more for my mum as i'm sure you will too
my mum was sectioned then had to go straight into a carehome as she also had hallucinations
everytime i visited she would great me with " its been awful" and for a couple of years i brougt her out all day for 3 days a week even bringing her home to bath her as she would not allow any of staff to do anything for her due to paranoia
she was on aricept and quetiapine which greatly helped but at times she was violent and spat at staff etc
my mum had a very high IQ and so often made me think she was much better than i now realize she was and i used to agonise whether it was right for her to be there. where one person may struggle to find a word clever people can use several others which can make you wonder at first if this awful illness is really happening or have the doctors got it wrong?
Im saying this both as a nurse and a carer.
Re the home and staff, remember bad news sells papers! how many times do we hear of all the outstanding work done by the majority of carehomes but we only hear of abuse.... as matron i am very proud of how i run 'my' home and find it extremely rewarding seeing the harrassed look disapear from relatives when they see their loved one settle. i would think it is unlikely that staff will be off or impatient with your mum as we see these problems all the time and wouldnt be in this job if we couldnt cope etc
although i mentioned my mums personality disorder i feel this is unrelated to the hallucinations she had for example when she was completely fixed on the idea that her brother who she saw as a boy was deliberately hiding when anyone attempted to reason with her . she also had fixed ideas about particular residents or staff and i have exp[erienced this many times professionally. what i really mean is by the very nature of dementia you cant believe everthing your mum is telling you BUT if you ever witness anythig amiss you should discuss with matron if possibe or go straight to CSCI details of whom by law must be displayed in a prominent place at the care home, also chek the homes inspection report which is also available online. this will give you some idea of the standards operated by the home
Really hope this helps,
Scarlett

 

[Natashalou]

There was a new tale as well. Mum says that when she went to bed one night last week, there was a man in her bed, and the staff said they didn't want him to be disturbed so she was taken to another room to sleep. I have no idea if this is true or not - she didn't tell ME about it, it could be just her imagination. Should I ask the staff? If this happened, why did they not tell me? If it is true, I think I should know.

Margaret

I very much doubt this happened, I expect it is her imagination or else she was actually trying to go to sleep in someone elses room! My mother comes up with amazing stories of things which have happened, wild parties, police surrounding the building at night, riots in the car park, her being taken out all nigh dancing (she is almost totally immobile) and some quite disturbing sexual fantasies which are pretty hard to deal with!
Of course the really worrying bit is just SUPPOSING one of her allegations IS true? Really, Id never know...after all, she accused me of being Heather Mc Cartney and travelling around the world keep having children!

 

[Margaret W]

Thanks everyone, I keep forgetting that my mum has AD. She reckoned there were two men and a woman living in her house 18 months ago, so finding a man in her bed in the care home is likely to be another delusion. I have to keep writing this all down, cos I forget the little incidents that have occurred.

Scarlett, I don't want to bring mum to my house, I think it will unsettle her. A few weeks ago we went for a hearing aid, and we passed some landmarks that were familiar to her, and she thought she was going back to her house, it was quite distressing to her. She thought the care home wouldn't have her back. Although she doesn't like it, she knows she has got a nice room, is warm, safe and is fed (despite the dreadful food she says they have).

Eh, my problems are minor compared to most, I hope no-one minds me getting worried over such little things, but to me they are big at the moment. I am just so new to all this. Only 3 months ago I was organising direct debits to pay her household bills and a fortnight later I was cancelling them all cos she went into the home.

Phew.

Ta everyone. Much appreciated, as usual.

Margaret

 

[sooty]

Margaret I sympathise so much with you. Last week I had to come to the Uk from Canada and have placed my Mom in a care home. She is just like you describe your Mom and thinks it is only temporary and not her sort of people yet it is very expensive as she is self funding. I left today in tears to but she cannot live at home. Ther home is excellent. Ther are no answers to this I am afraid . We must keep our mothers safe. Mine was onthe floor for 15 hours even though she had care three times day at home. she has had another stroke too. You ae doing the right thing I tel you and my self . Sooty

 

[Margaret W]

Well, folks, mum was right!

The lift at the home broke down on Saturday night and those residents who are immobile were given rooms on whatever floor they were on when bedtime came, and those who could walk had to sleep elsewhere.

It needs a spare part, so don't know how long this will be the case.

It leads me to wonder what would happen if there were a fire - they don't have stannahs, though the stairs up to the first floor could certainly accommodate one.

Visiting in an hour, will see what the situation is.

Margaret

 

[Grannie G]

Dear Margaret,

I think it`s reccommended not to use lifts in a fire, so Stannahs would be out of action too.

There must be acceptable fire regulations at your mother`s home, also fire staircases. There will be emergency procedures for non ambulant residents.

It`ll do no harm to ask.

Love xx

 

[jenniferpa]

This highlights a major problem - sometimes what we're told does have a grain of truth in it.

Re lifts and fires. My mother's stair lift had a manual option - a handle that could be used (with effort) to move it in the event of a (lasting) power cut (it had a battery as well that would move it a certain number of times after the power was cut off). I'm not saying it would be wise to use it in the event of a fire, just that it could be. I would be checking, Margaret, what this home would do if there was a fire.

 

[scarlett]

dear Margeret,
I'm sorry i gave you the impression i was suggesting taking your mum out or back to your house, as sometimes i write so fast not only do i spell things wrong but also its difficult to write and make sure meaning is clear (for me!)
I was really just trying to let you see that delusions are very common and reassure you about the carehome.
Everybody with AZ is an individual with their own life experiences and my mums and my circumstances not least my having been in nursing since 1985 meant that we dealt with her illness in the way we did.
We all do what we can but one of the things common to us as relatives/ carers is that we feel guilt no matter how much we do even tho we know logically we shouldn't.
I was also trying to let you see that i empathise with your feeling less close to your mum (than with your dad)
I only knew my mum and with her personality disorder I grew up with her sudden anger etc and things were usually my fault. my best friend summed it up by saying she "guilted me out" so when she was ill i found it easier to cope by doing all that i could,( which thinking back i dont know how i managed) than hear my inner voice (mothers echo!) giving me such a hard time for not.
hope this makes more sense, and try to look for humour where you can in this awful thing. there were so many things that happened over the duration that lifted me and often my mum and me were in fits of giggles. have you looked on other TP sites? like tearoom for a lift the jokes and incidents related help you to see its not all doom and gloom.
Eg handbags and purses in shop windows were like a beacon to my mum and she would just stop and want to buy one times many! I used to look at her and say "its not another bag , is it?" and we'd both laugh when she'd say "well yes, I'm afraid it is!"
love scarlett

 

[Margaret W]

Scarlett,

I don't mind what you say, I know I say things off the top of my head when "on a roll". I am interested in everybody's comments cos they all help. Thanks.

What? Have a laugh with my mum? Never had a laugh with her in my life. The most I have had is a chuckle when the cat has jumped on her knee. Never known a laugh, though. My mum is a matter-of-fact person, very working class, making ends meet, old-fashioned. Laughs don't seem to come into that.

I read the Guardain article on a Saturday "Living with mother", and am SOOO envious that the woman who writes has lots of laughs with her mother over the daft things she does, and knows she is doing them. Not so my mum. And I imagine if I ever get this illness I will be like my mum is. No fun to anyone.

My mum is simply not the cheerful old lady with a bit of memory loss. She is sad, she is unsettled, she is probably resentful (though so far not of me). It all feels so "heavy". Ah well, that is how it is.

Love

Margaret

 

[scarlett]

margaret,
my mum was always serious, angry often and her problems were always much much worse than anyone elses ( to her).......BUT as dementia progressed she relaxed more and like you, who could probably cant imagine having a good and happy relationship neither could i.
But about a year after diagnosis and possibly after i now look back and realize she had earliest signs possibly 3 or 4 years before, we became "ladies who lunch" which she found hilarious. what i mean is a strange thing happened... the changes wrought on my mums personality by dementia, were the reverse of someones sweet mum becoming awful and we made memories over about a year which now i can look back on and remember my nice sweet mum and the many many happy laughs we shared.
earlier on , before diagnosis , but scan did show it started 3 or 4 years before, my mum could be infuriating... self centred to point of distration, angry sharp tempered with my son etc etc.
It may well be that you find your mum is "better for being worse" in the same way my mum was.
love, Scarlett

 

[Margaret W]

Scarlett,

I appreciate what you are saying. Funny, over the past few weeks I have, well, not become close to my mum, and we still don't share any laughs (mind you, I'm not a fun person either at the moment with the stress of my job!), but we do have a sort of "acceptance" of each other that perhaps wasn't there in years gone by. I have begun to realise that she trusts me to be doing the best for her. It is quite a responsibility to be dealing with anyway, and even greater that she trusts me, but I am finding it quite pleasing that she does so. It is making it less of a chore than it used to be.

Thanks for making me realise that.

Luv

Margaret