2 steps foward, 1 step back...

[Isabella41]

As some of you may know from my earlier postings I have had quite the time with my mum this past while. Eventually she was admitted to a brilliant specialist dementia home last Friday and she went there willingly. I spoke to the home on Saturday morning and got a good report. Mum was chatting away, eating, sleeping and came across as very happy. I then spoke to mum and it was all doom and gloom. She hated the place. All the other residents were dummies - her words, not mine. I said she needed to give it time. I said my goodbyes and said i'd ring again. At 9pm on Saturday night the care home called and said mum wanted to speak to me. Mum came on the phone very agitated. She was demanding I come and get her and insisted she was going home. I asked home where? She then mentioned her childhood home that she left in 1959. When I told her this she went mad and said she hadn't said that. I decided not to argue with her and tried to change the subject before I said goodbye.

I rang today and was told much the same,mum was doing well and had made some friends. She had her nails done and there was a party planned for later. I told the staff member how mum was complaining. She said alot of residents do that when they first move in. She also reported overhearing mum talk to her sister and the conversation seemed to be that her sister was going to take mum to live with her. Mum later confirmed this to the staff member. Mum's sister lives in London. She has a 2 bed terrace with no downstairs bathroom and only 1 living room. My mum hasn't been able to climb stairs for over 3yrs.
I visited my mum's brother this afternoon. He was very worked up as he had been speaking to mum and she had been crying to him telling him how there was no one to speak to. She wants her own private sitting room apparently. She has a tv and an armchair in her very large double room I should add. When she lived in sheltered housing she wouldn't stay in her flat and roamed the corridors looking for people to talk to. I don't think she knows what she wants. My uncle then said that my aunt was going to speak to mum's social worker and insist that mum be sent back to her sheltered housing. I've told this social worker that I am next of kin and I don't want her discussing mum with any one other than me but she has ignored this and has spoken to my aunt in the past.

I feel I am getting nowhere fast. How can I ensure my mum is safe, warm, clean and well taken care of when my stupid aunt who sees mum once every 8-9 yrs tries to sabotage me. She told mum to fight for what she wants. I did ring the home whilst in my uncle's house and they spoke to him and said mum had spent the day laughing, singing and eating and was very happy. She told staff she loved her big double bed.
I'm at a loss what to do with my aunt. She won't speak to me so I can't appeal directly to her. Mum has a mobile so my aunt can ring her directly. This is my own fault. The phone had disappeared when she was in respite but I felt guilty so I decided to give it back but boy do I regret this now.

I'm so worn out with all this tooing and froing and constant demands from mum. I know i'll never please her so i've givenup trying. I'm just afraid my aunt will get her way and we'll be back to square one again.

[ggma]

What an awful situation to be in, but I do not think a social worker would just move your Mum back without proper consultation involving you. The longer your mum is in the home the more of an assessment they will make of her abilities and they will be able to back up your view that the best place for your mum is in care. I would be very surprised if the social worker did not take their views into account.

Your Aunt probably does not want to face up to facts and that life changes and she does not have the influence or control of her sister.

You have done really well and it does sound as through your mum is in the best place and when she is not thinking about herself is starting to settle in.

Good luck and all the best.

[jenniferpa]

Umm what about losing the phone again? Or removing the sim card? I think I would do that.

I don't have much advice for you (except not to take any notice of what your aunt or uncle say). I'd probably write to the social worker telling her that 1) your mother is a vulnerable adult; 2) that if she is removed from the home you will be unable to take any responsibility for her; 3) that you will hold the social worker personally responsible should she in anyway interfere with this placement. You might also throw in something about a duty of confidentiality to her client (your mother).

Hold on to the thought that it really is 2 steps forward, 1 step back, not 1 step forward 2 steps back - you are getting there even if people seem determined to throw obstacles in your way.

[2jays]

Forgive me....
Tell aunt to butt out.. Or
Let aunt, uncle, (who ever tells you they know best) take over.... That will show them that you have prioritised your mums best interests
Tell social worker you are going to sue them for unprofessional conduct

By the way .... Mum tells all and sundry that everything is fantastic - she tells me everybody steals from her.... Apparently even 2jays, that wicked woman, steals stuff from her....

Do not forget.....
You are amazing!
You are looking after mums best interests
To take time for yourself and tell others to go forth and multiply

Huge hugs
Thinking of you xx

[rajahh]

How about getting a new number on your Mum's mobile phone, and do not tell the aunt or put the aun6t's number in your mothers new phon5e.

as soneon6e else says tell your aunt to butt out.

[fredsnail]

I agree with losing the phone for a few mins to allow you to remove the sim card - it's the easiest way for it to stop working without her being able to figure out why.

Grandad tells all the staff how much he likes the home, the food, we've watched him from a distance when he's unaware that we're there and he's joining in with activities etc. However the minute he's aware we're there it's a terrible place, the food is awful, he wants to go to his bed, the staff aren't doing anything etc.

They know how to press the guilt trip buttons without trying.

[Onlyme]

I would make sure the charger disappears and then when the phone is flat take it home to charge it... and never bring it back.

Your Mum can obviously sound 98% ok to her sister on the phone but if your aunt spent 24 hours with her it would be a different story.

You are doing the right thing.

PS Where were they when you needed their help before things got so bad?

[Chemmy]

Yes, I with the 'remove/disable the phone' brigade.
Chances are it'll go missing anyway if spectacles and such like in a dementia home are anything to go by.

Once she hasn't got direct contact with your aunt and uncle, then she'll probably forget the conversation. And make sure the CH doesn't put any direct calls through to your mum either.

I'd agree that the SW needs to be informed of your concerns about your aunt interfering and unsettling your mum. Any other ways she might stick her nose in? Forewarned is forearmed

[Isabella41]

An update
I rang the care home today as I do every day to check how mum was. She had been to the shop with one of the care assistants. They bought her cigarettes!!! I had stated on mum's admission papers that was a non-smoker. She smoked heavily for years and stopped in 1996. Recently her new 'friends' at her old house had persuaded her to start again. Her clothes had burns in them. I saw her fall asleep with a cigarette in her hand so was really worried. When she moved into her sheltered housing she didn't smoke. I guess she had no one to smoke with. When I left money with this new care home I was asked what she could spend it on. I wrote very clearly no alcohol or cigarettes. She had also gone through a period of very heavy drinking so I didn't want that to start up again either. The staff were very apologetic and said they would take the cigarettes off her. Apparently the person taking the money from mum's wallet in the home safe didn't think to read the allowed expenditure list.

I was then informed that my aunt had been on the phone demanding that they organise getting mum sent back to her sheltered housing. She was told that they wouldn't discuss mum as I was next of kin. Apparently my aunt got very irate. This aunt has seen my mother a handful of times in the past 40yrs. She didn't come home to support my mum when dad died yet now she is trying to take over a suituation she knows little about. She believes all my mother's ramblings. I spoke to the home yesterday and was told at that very minute mum was laughing and singing along music. My aunt phoned mum about 10 mins later. Mum told her she was terribly unhappy and had been sat on her own all day with no one to talk to.

My aunt has apparently told my mother that she will find her sheltered housing in London and will take mum over to live there. Mum of course is all for it. My uncle is very ill. He is diabetic, takes regular angina attacks, his leg is on the verge of being amputated. He is in and out of hospital alot. They have no children and no family support. This stupid woman wants to bring my 84yr old mother with rapidly worsening dementia into this suituation. My aunt has said in the past that she is worn out caring for my uncle. Who does she think will manage mum, do the laundry, cleaning,medical apts etc.
I then spoke to mum today. She was very angry. She said she's getting out and that my aunt is sorting it out for her. I'm sorry but I lost it. I told her I was the one in charge, my aunt had no legal right and she was staying where she was as she was safe. For the first time I told her that she was very wrong and that she had major problems with her memory. It didn't faze her, she just abused me more. I asked the home to discreetly take the sim card out of the phone so that my aunt can't get to her. I've also asked them not to put any calls through to mum except from me. They think this is for the best to allow mum to settle. I feel like i've condemed her to solitary confinement but know I have to do it to try to get her to settle.
Can I legally insist that the social worker stops discussing mum with my aunt. I've asked her not to but she ignored me. Should I put my request in writing stating she's breaching ??? By discussing mum with someone other than me.

My poor husband and I had a real ding dong of an argument earlier. He's so fed up as all he hears is mum mum mum.

[Chemmy]

How about getting the CH manager to discuss this with the SW? She is an independent witness and should be able to confirm the upset that your aunt is causing.

Come on here any time and rant to us instead of your poor husband

[jenniferpa]

The problem is that the mental capacity act really rather forces social workers to listen to anyone who might have an interest in a persons welfare, particularly when there is no welfare LPA in place (and I assume there isn't). The SW shouldn't be telling your aunt things but she should be listening according to the guidelines.

There really aren't any rights associated with being "next of kin" to be honest so I think your approach is going to have to be that allowing (perhaps encouraging?) this sort of input from your aunt is "against your mother's best interests" as it unsettles her. She ended up in residential care because you yourself became ill, is that correct? Well you have to be absolutely clear with the social worker that in the event your mother leave the care home you will not be available to pick up the pieces.''

Can I just point out that that chances of your aunt being able to find sheltered housing in London (I assume this is where your aunt lives?) is absolutely laughable - these placements are fairly few and far between and 98% will not take people with a dementia diagnosis. The waiting lists are immense.

[Katrine]

I agree with Jennifer about the practicalities, or lack of, relating to this plan of your aunt's. Your aunt is p***ing in the wind. She has to find a suitable home that will take someone with her degree of dementia, make arrangements to escort/transport her across the sea (presumably by plane?), all after having cleared this with your mum's SW and convinced them that this move is in your mum's best interests. Oh, and presumably pay for her care out of her own funds?

Write to your aunt and tell her that it is not in your mum's best interests to relocate to another country where her only contact will be with auntie. As your mum has already been assessed as being beyond coping with sheltered housing, the only suitable option would be a CH. Since she is already in a CH where her daughter is able to support her, what benefit would she gain from moving to a CH in London? Invite her to come and visit her sister, speak to the CH manager and SW, if she feels unable to get the reassurance she needs long distance.

MIL's sister swallowed all her complaints as gospel until she came up here to stay with her and then it was "We had no idea how bad things had got." So that's someone who speaks to her on the phone every week and yet cannot understand the practical implications of having dementia until she is in the same house with her for 24 hours.

Your aunt is not in a position to support your mum because of her husband's illness, but presumably she is also elderly? She would be made just as ill as you were if she tried to support her sister in sheltered housing. If you feel that commiseration would work better than confrontation, then lay in on thick about her own dismal future and how, sadly, she is not in a position to take on the 24/7 care of her sister, much as she would like to, etc. etc. And suggest she speaks to someone in her local Alzheimer's Society branch to get advice and support with dealing with her feelings.

[Isabella41]

Hi Jennifer,
Yes you're right. I have been ill and am still far from better. I am going to try to go back to work tomorrow.

Right again. My aunt lives in West London. You've put my mind at rest by telling me no home in London would take her and that there are few if any places to be had.

I honestly feel like I am getting no where. My mother has always been a negative ungrateful person and argued with people all her life. This makes caring for her now all the harder. When mum lived in her own home 90 mins from mine my aunt was constantly berating me for not doing enough. In the sheltered housing mum was in for a few weeks I ran myself ragged and my aunt still told my uncle I should do more. She has actually said she thinks i'm putting on an act and that i'm not really all that ill!!! Mmm nearly 5 days in hospital and 1st weight loss in under 1 month. Sure i'm acting. Oooh I could scream. Thank you all for putting up with my rants.

Izzy.

[jenniferpa]

I don't know whether your mother would be self-funded or LA funded but while I don't know how much a residential home costs in NI, the cost of a residential home in London could easily be up to £1500 a week or even more. Same goes for sheltered housing - if it's self-funded we are talking massive fees (not that there are many self-funded sheltered housing schemes) while if it's LA owned - well London is like everywhere else: an aging population many of whom want sheltered housing and who are in far worse situations than your mother.

As Katrine says above "Your aunt is p***ing in the wind." It's such an unrealistic thing to believe could happen I have to say: are you sure there isn't an element of dementia there?

[Onlyme]

To be honest Izzy, I think your Mum and her sister are a matching pair. They both want to control the situation and now your Aunt thinks she can take charge when her sister would never have let her had she been in a better state of mind.

Let your Aunt bluster, its all hot air. I would write to the SW though, she is out of order to discuss her clients.