Need Some Advice

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
What would my position be if I just stopped being responsible for mum?
Who do I need to inform that I am no longer prepared to make sure mum is looked after by the carers and entertained by the day clubs I have got her into?

Mum is self funding. Mum has Vascular Dementia,COPD and was in intestine care for 6 weeks in 2010 and is unable to look after herself.

Mums doctor is on an unlimited sabbatical - what ever that means.
Mum gets full rate attendance allowance. Has a blue badge. I have financial POA. Awaiting Welfare POA. She doesn't eat unless prompted. She showers once a year at most. She hangs up her tena lady pads to dry because she only "did a little tinkle" on them and she diesnt want to be wasteful she cannot remember how to use her inhalor, i arranged for her to have all the gizmos to help her use them, instead of 2puffs she can have 4-8 puffs and overdoses on ventolin, so getting giddy and the shakes she stumbles on the pattern of a plain carpet she comes across as extremely capable to the point that the red cross befriender suggested to mum she gets a job with the WVRS.

Mums CPN suggested I get the council tax relief for mum because she has full rate attendance allowance. The doctor covering mums doctor has just refused to sign the council tax form. so why did the CPN put me up to be patronised and smacked down?

I have had enough of the brick walls. I have had enough of putting others first. I have had enough of the so called support being as obstructive as they can be. I have had enough of having to double check transport for mum for it to fail, I have had enough of hearing outright dam lies

I need to put me and my husband first. My husband needs me. I need my husband. We don't have time for each other.
 
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bunnies

Registered User
May 16, 2010
433
0
I sympathise with how your feeling, and remember feeling the same way. I think there comes a point when you do have to decide if you are able to put your mother's needs before yours for a longer period, and the demands are great. I think it would be brave, and sensible of you to step back at this stage.

If I were you I would write to social services, to a named social worker if you have one, and just state very neutrally that you are not longer able to sort out your mother's needs and in future you will visit once a week or once a fortnight or whatever you decide, but other than that, and paying her bills, you cannot help in other ways. I would outline the problems your mother has. I would then send the same letter to her GP. After that I would make sure that every time you hear you mother has a problem that you ring social services and inform them, or if it is a medical problem ring the GP and tell her. This will in itself take time, but to be fair to your mother it is the only way that you will (eventually) get some attention for her, so don't be tempted to step in and help.

The most likely outcome, if you follow this through, is that they will say your mother needs to go into care since this is the simplest solution for them. If you don't want this to happen, then I am afraid it will be down to you to arrange extra care for her at home, and in my experience, if you are self-funding, social services will not help at all in managing these arrangements....
 

Clementine

Registered User
Apr 15, 2011
140
0
Dorset and Zug/Switzerland
Regards arranging care help at home we received help from the Social Services, i.e. they suggested what care she should have, they telephoned for us, they brought gadgets to the house, i.e. bath seat, zimmer frame, comode etc. although Mum is self funding. When she needed to go to the Nursing Home they suggested which home they would recommend. I initiated the Social Services help via Mum's GP.
I appreciate your despair, it's so difficult to deal with loved ones, I think this is where the carers come in, they are much more used to deal with it, they will be much more blunt and it may be that your mother will listen to them more than to you. If your Mum can afford it I would put carers in place as soon as you can, so you can return to being the daughter rather than the "parent" and that you will have more time for your husband.
 

moogie

Registered User
May 29, 2012
4
0
I feel so helpless for you. I am new to this site so not sure if i will say the right thing, but I will try.

This may sound stupid but you need a BREAk. I can tell you are at breaking point and I sympathise. Can nobody take some of the responsibility for acouple of weeks? I don't know how any of the system works yet because, like I said, i'm a newby.

Could your mum go into care temporarily, to give you some space to think clearly?

I'm pobably not helping much. You've probably tried all this. If you have, do whats right for you and your family. You're mum wouldn't want you to feel so desperate (your old mum i mean), and you sound like you have done so much already.

Please take care of yourself, without any guilt.
 

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
Thank you so much bunnies, clementine and moogie

Mum lives in Shropshire I live in the west midlands

In the two years since mum came out of intensive care and after 3 disasterous months of mum living with me and OH I arranged for mum to go back to her home with carers twice a day. I rang social services for help-info but was told that as I was self funding I would just have to organise things myself. So helpful and (now I know) a down right lie

I arranged for Wiltshire foods to be delivered and mum broke the microwave (no idea how) carers didn't notice mum was not eating - what was I paying them for, oh yes, just to sit around talking to mum, drinking her coffee and for them to tell her their problems, which would then upset mum and mum would ring me to sort put the carers problems with their children, husbands...... silly me, I thought I employed them on mums behalf to make sure her fridge was clean, she had a shower, the food in the freezer was eaten and that the microwave worked. - changed company they promised that all the other company were not doing they would do - ok shouldnt be picky, but hoovering once a month when a certain carer is on is not good enough, but it's more than I was getting. Mum rang me last night to say a friend of one of her carers was moving in as her husband had kicked her out. Initially I thought this was confabulation - WRONG it was true - until I put a stop to it - we'll I think I have.

I arranged for new day care days for mum with dial a ride transport to take her. Confirmed times by three people, we confirmed dial a ride were going to pick mum up. They didn't. Had to ring three phone numbers -carers, day centre and dial a ride to find out what was happening. Mum out on the street waiting for the bus, so couldn't contact her to let her know what time the bus was arriving.

If she is eligable for full attendance allowance, has a blue badge, has carers 2x a day, has dirty clothes (thanks for the support carers) has an aroma all of her own making but the doctor thinks she has capacity then she must have mustn't she.
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
So sorry to hear you so despondent. It is difficult enough without the 'proffessionals' giving you more grief. With council tax I just got a form from the local council regarding asking for 25% discount as my husband receives attendence allowance. I qualified for carer's allowance but could not be given it as I had retired but had a letter to show it was my age that stopped it being given so it still qualifies when asking for anything else. I sent a copy of the attendance allowance and the carer's allowance along with the application and it was granted. Did not need GP t be involved at all. Keep smiling and I hope you get sorted soon.

Jay
 

hollycat

Registered User
Nov 20, 2011
1,349
0
Hi 2jays

Had a lond hard think about this one as not too sure myself what to do.

Having thought about it, I would write a letter to both GP and SS advising them you have reached breaking point and strongly suggest that they arrange a few weeks emergency CH respite.

1. Will give everyone thinking time.

2. Will be best place for mum.

PERSONALLY, I would then CON my own mum and say house not ready and try and convert the temp respite into full time CH.

SORRY if it sounds a bit harsh but if a CON is a sin in mums best interest, then that is going to make me a sinner one day.

The RESULT of doing what is in mums best interest, ALSO provides a PERSONAL SOLUTION FOR YOU !

Hope this helps, but perhaps wise to wait for the more experienced voices to express their opinions.

I sympathise, empathise and offer any other THISES I have not mentioned !

To finish on a bit of a daft and happier note,when my OH is feeling low a phrase he comes out with is:

ALL THE STRAWBERRIES HAVE GONE BANANAS !

Means absolutely nothing to me, but just makes me laugh the way he says it.

May all your bananas be strawberries !

If you find my PLOT by the way, please send it back...........I lost it years ago


My kindest regards x x x
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
I think Hollycat's long hard think has been VERY fruitful. (Hope you notice how clever that was).

Yes. Carehome. It is so obvious when you think about it. It need not be forever but clearly it must be the only way to get respite.

Your mum seems to be so friendly (too friendly?) and maybe she would love the company and the other residents and staff would love her.
 

turbo

Registered User
Aug 1, 2007
3,852
0
Hello 2jays, I think caring for your mum from such a distance would be difficult enough if you had support from the various agencies. Without this support I think it is impossible so yes I think you do need to take a step back.
It does sound as if your mum needs a lot of care. It does not help you at all that she presents so well to outsiders.

turbo
 

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
thanks Jaymor, Hollycat, butter and turbo

My favourite saying at the moment is KBO (wont translate :D - think churchill) but I do like the bananas and strawberries one :D trouble is if I started using it my family would think I have lost my bananas and strawberries :D :D

Right. Long hard thinking has gone on here, plus a few tears, a smashed flower pot - wonder who could have thrown that, ah yes it wHas me.

Rang the care agency after my last post, 3pm was it? Just got off the phone.
I did not rant, accuse, blame, but I did cry. I was understanding towards how difficult getting mum to do things, I was understanding that it was difficult to do things for mum, I was understanding that some carers are better than others but I was not understanding that I don't get feedback. That I have just found out that mum was taken to the doctors nurse by a carer and I was not informed, therefore I was not understanding that the nurse doctor thought I was a neurotic for making mum go to the clinic twice in one week for the same problem (asthma clinic) I was not understanding that mums clothes are dirty, that I had to defrost a freezer draw so mum could get at the icecream in it, that mum still had last weeks frozen meals in the freezer, that the "girls" who visit mum don't seem to know how to monitor mum and make sure that atleast the sugar bowl can be picked up from the kitchen side, the bed is changed, and the bathroom was clean, and that she ate her meals.

I was also hoping that the care company understood me that as the doctor said mum had capacity, I was considering mum didn't need carers anymore.......

I asked if they understood me. Anazingly, They were very understanding of me

I told them that I would hold them responsible if mum went into hospital due to malnutrition.

I told them that I wanted a new care plan drawn up and for it to be adhered to.
I told them I could easily draw up a care plan for them, but why the L should I, but if they wanted me to do one so they knew exactly what I wanted them to do, it would cost them one weeks fees.

I then rang the invisible. She has an answerphone message to listen to

Phew! Felt like I was kicked in the teeth by the doctors educated opinion. It knocked me hard. Still is. Still feel like I don't want to do this anymore.

If mum goes into respite - I have to organise it - not going to
But thank you so much for suggesting it I do appreciate people's opinions and support and understanding and and .... oh thank you. xxx

What I will do, tomorrow, once I've.... -well I was going to say, once I've slept on it - ooh sleep, that would be nice - I am going to compose an "educated opinion" letter and send it to the doctor surgery so it can go on my mums file

This letter will also be sent to the CPN with an added bonus point, especially for her

I hadn't thought is writing a letter, but I am so used to thinking of ways round complicated things to deal with, the simple answers just get missed.

My final comment is to butter - groan very clever, but groan :D :D
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,447
0
Kent
You are not responsible for the care of your mother 2jays.

I would contact SS and use the terms `vulnerable adult` and `at risk` which are the buzz words to use.

I do not understand why she has been refused the council tax 25% rebate if she lives alone. Anyone who lives alone in entitled to it, dementia or not.
 

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
I'm sorry GrannieG, I didn't make myself clear. The rebate I was talking about was the one the CPN told me mum was entitled to, which is that she shouldn't pay any council tax as she had full attendance allowance. I arranged the 25% one when she first moved back home 2 years ago.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,447
0
Kent
Your mum would need to be on means tested benefits to be allowed full rebate 2jays. Attendance Allowance is not means tested so doesn`t count.

The CPN gave you incorrect information.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
I think that what 2jays was talking about with regard to the council tax issue was the disregard for severe mental impairment. That was the issue that brought me to this forum in the first place - that mummy's GP wouldn't sign that damn form. It's almost impossible to get round if you don't have a consultant. It really irritated me because at the time mummy wasn't using a single local authority service: even the rubbish collection was privately contracted. I finally got him to sign by whining to him every opportunity I had.
 

jeany123

Registered User
Mar 24, 2012
19,034
0
74
Durham
Example 1: The person with dementia who lives alone
Anyone with a severe mental impairment, including dementia, who is living on their own and is receiving an appropriate disability benefit (such as attendance allowance, or the higher or middle care components of disability living allowance) is exempt from paying any council tax.

this is taken from the council tax site

Jeany
 

GZN

Registered User
Nov 2, 2011
19
0
I so sympathise with what you are going through. My mum is in Hampshire and I live in Wales. It took ages to get mum diagnosed, then it took ages for the consultant to do anything, then she was on Aricept for a month, then because the Aricept didn't work she was discharged, without it being made clear - I did think that they were slow on their follow up! Adult Services acknowledged her as in need, but did nothing other than get a bit angsty with Mum's inability to accept that she was in danger of a possible fall upstairs (the solution she refused was that WE put in an upstairs phone AS were not going to do one single thing for her - yes the dreaded self-funding closes all doors) I got very very tired of my life being turned upside down, and of running up and down the country, and of the banging of my not unintellligent head against the brick walls of the supposed support network of the NHS and social services. I did wonder what would happen if I abandoned her, as I was tempted to especially when being asked the time at 4.00am., to them alone?

The two organisations that have been beyond amazingly fantastically brilliant are MIND and the carers they put us in touch with, (Moderator note: care provider name removed), a small local firm near Andover. Remember that, as the pay master, you can change care providers and there may be one that is a lot better than the one who is failing you at the moment. Our carers - mum calls them her friends - phone me all the time and do more than is expected of them every time.

However, my mum has declined and began wandering. Despite feeling very, very resentful that no one was helping us, and that no one would treat dementia as a mental illness, it is not just 'getting old', and, to be very candid, resentful that Mum and Dad's careful saving and hard work will get them no more in their old age than if they had been wanton spendthrifts , despite all that, we 'bit the bullet' and put mum in a care home. Only happened a couple of days ago and I am still in trepidation, but today I heard that she told a visitor that she likes it there. I might, jusy might, actually be able to get a holiday for the first time in four years....
Good Luck to you - I hope you can find the right way through this ghastly illness for you and all your family.
 
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Biddy88

Registered User
Mar 17, 2012
127
0
I got very very tired of my life being turned upside down, and of running up and down the country, and of the banging of my not unintelligent head against the brick walls of the supposed support network of the NHS and social services.
GZN

I'm straying off the point slightly now 2jays, but I from what I've gleaned since I joined TP I think many of us fruitlessly bang our heads on walls, don't we? What GZN says reminded me of a recent conversation.

Some (genuinely) lovely ladies I know on another forum are nurses - we all have varying degrees of the same medical condition. One day they were sympathising with another forum member whose hospital operation had been cancelled. There followed an exchange about pesky bed-blocking elderly folk and black-humoured suggestions for getting them off the wards. This included mention of how some families 'dump' elderly relatives at A&E and leave them "just so they can go off on holiday". Ignorance is bliss....

So I put them straight. I told them that elderly people have as much right to a hospital bed as anyone else. I asked them if they'd ever considered that a person who dumps their elderly relative at A&E and leaves them there has maybe reached their limit of endurance and can no longer care for them. I pointed out that in both cases the elderly person is probably where they are because of the catastrophic failure of The System to provide the help they desperately need.

Oh, and then I mentioned my Mum has Alzheimer's and it just so happened that at the time she was busy 'bed-blocking'.

Needless to say, they apologised. Maybe next time they'll look at things from another perspective.

I agree with what's already been said. I think you have to make your position clear in writing. My family had to do this too. Mum went into a care home yesterday and it's fair to say if we hadn't bombarded all the powers that be with regular protests (exhausting!) and eventually 'letters of resignation', I think we would still be in the same awful position. X
 

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
Well done you biddy88. if only we could get the feelings of utter dispair understood by the medical proffessional closer to home, like mums doctor.

GZN Seems like we are living the same lives, thank you for helping me not to feel so alone.

Jeaney - that's what I understood, that if mum had VasD she would get exemption. I didn't think she needed to be a vegetable, (no offence meant, I can't find the correct terminology I am looking for) just confirm she has VasD that isn't going to get better.

Jenniferpa thanks for the clarification, brain all a buzz and doesn't always link with the fingers.

GrannieG. No need to apologise. Thank you for helping me be better understood.

Ok so the wall has a few more dents. My head is an interesting shape after all the bashing. And the self confidence and humour have had a shakey day, but thanks to all your support, the humour is on its way back, the self confidence is a tad behind, but all the support, understanding, words of wisdom are doing their job.

Crazy isn't it. All this brewhaha because the doctor wouldnt sign a blurry form. At the end of the day, so what if she doesn't get exemption - she still has VasD. She still isn't able to look after herself. The carers visit at the least, so she if she fell it would only be overnight before she was found, and not a week later when I visited, she goes to a club 3x a week so she gets a meal 3x a week. What am I worrying about?!!!
 

Pon

Registered User
Dec 11, 2011
61
0
wales
I also need some advice if possible

I'm absolutely shattered my husband was sectioned yesterday morning as his lorazapam was no longer working and he tried to trash our home they sectioned him for 28 days to assess him and when i came home from visiting him this evening I had in the post a prescription for 3 months supply of donepezil 10 mg sent from the hospital in which he is being assessed

I am utterly confused as the social worker called this morning and said that I had the right to get him discharged at any time within the 28 days but her advice was to let the assessment take place and use the time to recharge my batteries and treat it as respite
care

Can anyone out there shine any light on this as not I've stopped looking after John for a 15 and a half hour day excluding taking him to the toilet twice in the night I am physically drained and cannot think straight myself as it all happened so quickly

thanks

Pon