End of my tether....

[Suzie G]

I've posted before on several occasions and had fabulous advice and support. Thank you! Not been on for a while as everything has got a bit too intense. I'm at the end of my tether emotionally. To summarise:
I'm sole family carer for mum. She lives a 100 mile round trip away, still in her own home. I gave up my job 18 months to care for her. She's deteriorated to the point she now has a social worker and a carer comes in twice a day to take some of the pressure off me. I was visiting 3/4 days a week and it was just too much. The main issue - apart from all the usual stuff is that we have always had a tricky relationship. Mum is not warm. Nothing I have done in the past is ever good enough. She is, frankly, manipulative, vicious, selfish and ungrateful. This is the way she has always been, the Alzheimer's has just magnified it and made it worse. I have a brother we never see any more. He had enough of her and has left me to get on with it. My husband and 2 daughters are brilliant.
Her behaviour towards me now is making me ill. I have POA for finance etc and took over managing her money 18 months ago after the bank refused to keep issuing her with debit cards that she'd then lose.
To mum I am a thief, a liar, an evil woman. Her words. Over and over again. 17 phone calls yesterday threatening the police etc. . Her paranoia has now reached ridiculous levels. I've researched this. I know all about the paranoia, hostess mode, I know about sundowning, all through this forum. Well meaning people say
"Aw, bless her, she can't help it, it's the illness not her!". I've been telling myself this for 4 years and it doesn't make it better any more. I want to walk away. Her emotional and verbal abuse is constant. My husband and I managed a short break last week. We didn't tell mum. I had 37 voicemails in 3 days. I don't answer the phone now, I let it go to voicemail so I can stay calm and choose how best to reply to her, if at all.

If I could walk away I would. Any love I used to feel for her has gone and any good memories I had have been over taken by the brutal way she now treats me. I am her punch bag. I know she is scared and it must be terrifying and if she knew what she was putting me through she'd be appalled. But I don't know what to do as I just want to run away right now and not come back.
Can anyone help please? I am sobbing as I write this...

 

[annierich]

I’m so sorry - you sound as though you have reached ‘Carer breakdown’. Do you think that it’s time for you to take a step back from your mum and organise some respite for her or perhaps it’s time to consider a move for her into a care home? There others who are professionally trained can take care of her and you can eventually resume the role of her daughter. Is she self funding? If not perhaps you need a Carer’s Assessment so that SS can see exactly how your mother’d Dementia is affecting you.

 

[Suzie G]

Thank you for your reply. Mum refuses point blank to go into a Care Home. Her Social Worker told me last week that they can't make her. That it would have to go to court before a judge in order to make her, but that mum is not 'at risk' yet and can "carry on at home with carers 4 times a day and over night if necessary".
I don't understand the point of me having POA if nobody takes any notice of what I say. I act in her best interests but SS say we have to wait for a 'crisis'. Mum answers the door half naked. How is this not 'at risk'? Do I have to wait for an accident to happen or her to burn her house down or leave the house and get lost? (We've not long had the gas cooker disconnected as she couldn't use it safely) The SW said she could be like this, still at home, for years yet! I don't think I can carry on for weeks more let alone years of this!

 

[Rosettastone57]

Thank you for your reply. Mum refuses point blank to go into a Care Home. Her Social Worker told me last week that they can't make her. That it would have to go to court before a judge in order to make her, but that mum is not 'at risk' yet and can "carry on at home with carers 4 times a day and over night if necessary".
I don't understand the point of me having POA if nobody takes any notice of what I say. I act in her best interests but SS say we have to wait for a 'crisis'. Mum answers the door half naked. How is this not 'at risk'? Do I have to wait for an accident to happen or her to burn her house down or leave the house and get lost? (We've not long had the gas cooker disconnected as she couldn't use it safely) The SW said she could be like this, still at home, for years yet! I don't think I can carry on for weeks more let alone years of this!

I really empathize with your situation this is so familiar to me. My husband and I had many years of this type of verbal and emotional abuse from my mother-in-law. My mother-in-law had a personality disorder and other mental health conditions way before the dementia diagnosis her daughter moved abroad many years ago and has had little to do with her over the years. It sounds as if you are not self-funding so unfortunately you are very much in the hands of social services. My mother-in-law was self-funding and quite frankly had reached the stage even with carers where she needed to go into full-time care. She had always refused point-blank to go into a care home and my husband was not prepared to deceive her in order to get her into a home at that stage. We just waited for a crisis to happen which it did last summer she went into hospital and once there we started the search for a care home there was no way at that point that she was going back into her own home. I'm sorry to say I have no other better advice or suggestions but I'm sure others will be along soon to give their best advice
.

 

[lis66]

Hi Suzi G so sorry for how you feel at the moment ,this illness takes all you have got,I find it very hard sometimes not to argue back with mum you need the patience of a saint sending (((hugs))) to you xxx

 

[notsogooddtr]

You can tell Social services that you are no longer able/willing to support your Mum NH let them take over.Don't let anyone guilt trip you into risking your own health.

 

[Suzie G]

Thanks for the comments. I actually have a meeting with the SW and Agency co-ordinator set up for next week because some of the jobs I've asked the carers to do are not being done so we're reviewing the whole package of care. This will be the best time to tell them how I feel and that I need to step back a bit for my own sanity and health. I know I'll have to do it and I also know I feel guilty as hell just writing about it. I somehow feel I should be able to cope better. It feels like failure to admit you just can't do it any more doesn't it?

 

[Suzie G]

Hi Suzi G so sorry for how you feel at the moment ,this illness takes all you have got,I find it very hard sometimes not to argue back with mum you need the patience of a saint sending (((hugs))) to you xxx

Thanks for the hugs!

 

[Sirena]

I think you have to step back. If the social worker thinks she's fine at home with care visits, let her carry on with that, they will probably quickly find she is not okay, a crisis will occur and she will have to move to a care home. It is in large part your input which ensures she is able to carry on at home, without it things will deteriorate. You are right that SS are waiting for a crisis to occur in exactly the way you describe. This is mainly due to funding, it is cheaper to keep her at home.

Please don't feel guilty, no one should have to cope with this - but as long as you are willing to, SS will be only too happy to let you.

 

[Sam Luvit]

Hi @Suzie G

It’s hard when you are doing all you can think of, to get the accusations & vitrol It does seem that the main Carer gets it a lot, I sure did

You do need to look after yourself. You are important. You can’t help anyone if you are unwell. Please go see your GP & tell them how you are feeling. Your GP should then be able to push SS a little on your behalf

At your meeting with the SW & Agency, please remind you them that “the duty of care” rests with them. It’s not your responsibility to care, it is theirs. Also, remind them she is “a vulnerable adult”. Those two phrases are key in getting anything moving

Tell them you think you are heading for “Carer breakdown” & you need them to sort something, even if it’s just a two week respite break in a CH.

I know the guilt of walking away will be nagging at you, but you need to convince the SW that you are walking away (even if you don’t). They need to decide on the level of care they need to provide if you step back & do nothing for your mum.

 

[Bod]

It's tough, but the as others have said, for your own sake you need to step back, allow the SW to setup what ever care they deem needed. Without you.
The true situation will soon be found. Your mothers needs, will outweigh her wants, there will be difficult times. BUT it will be in her best interests, and by that yours and your families.

Bod

 

[Suzie G]

I know that what you are all saying is the right thing to do but it's so hard isn't it? I am comforted by the knowledge that you are right. Sirena, it's so true that she's only managing to stay at home because of my input. I have to accept it's for the best, and in her best interest. What matters is what she needs, not what she wants.
Thank you all for your support. I'll let you know how things go........

 

[Banjomansmate]

As I too found out, a European Court of Human Rights ruling means that if someone says they do knot want to go into residential care, even if they lack capacity to make that decision, they cannot be made to go without a decision from the Courts. Even though the medics, the Social workers and the LPAs all agreed that The Banjoman was no longer capable of returning to his home, all the while he said that he wanted to go back there we could not move him out of the hospital. Thankfully, after several weeks we managed to persuade him that a Care Home was preferable to staying in hospital for months and paying a fortune in going to the Court of Protection who would only agree with us anyway.

If you can get the Social worker to put in as much care as they are prepared to pay for and you cut down your input to the minimum, (I said I would stock up his fridge with microwave ready meals each week,) there will come a time when the carers will say they can no longer cope and throw it back to SS. Then it will be up to them to decide on the possibility of residential care.

In the meantime try to step back and reduce your visits to purely necessary ones. You have financial LPA and can probably claim Assistance Allowance for your Mother if she doesn’t already claim it and that will go towards any care/help you have to pay for.

I hope next week’s meeting goes well. Until then hang in there!

 

[Rosettastone57]

Thanks for the comments. I actually have a meeting with the SW and Agency co-ordinator set up for next week because some of the jobs I've asked the carers to do are not being done so we're reviewing the whole package of care. This will be the best time to tell them how I feel and that I need to step back a bit for my own sanity and health. I know I'll have to do it and I also know I feel guilty as hell just writing about it. I somehow feel I should be able to cope better. It feels like failure to admit you just can't do it any more doesn't it?

Remember you have a husband and family and they need you as well. You are entitled to a life of your own . Don't let your mother and her illness control the situation .

 

[canary]

Is she taking any medication for the anxiety and paranoia?
Perhaps it would be helpful to have a word with her GP about medication. The GP may refer her to the Community Psychiatric Team to assess medication.

 

[KMH]

@Suzie G please take care of yourself. My situation with my dad was very similar to yours except my mum was still in the house, also with dementia, and my dad is not only verbally aggressive he is violent. I ended up with a grade 3 cancer. I learned that social services still won't do anything if that happens except look sorry for you. And the health services will still expect you to take your abusive relative to hospital if needed.

I was doing the 3-4 times a week 100 mile round trip thing but learned during my own treatment that once a week, three times a week, or once a month, the abuse was the same, I just got more of it if I went more often. I really affirm you not answering the phone. My dad was also a serial phone caller and if ignored he eventually did stop. A pendant alarm can make sure that attention can be given if it is really needed.

Nobody has a licence to do this to you, however ill and frail they may be. I agree with @Banjomansmate, reduce visits to a minimum and @Sam Luvit, consider walking away altogether. You would not be the first, and if you did, services would just 'get on with it', because they would have to.

 

[Suzie G]

Thank you, all of you, for the helpful comments. The guilt involved in 'backing away' is something I will have to deal with, but I believe it cannot be worse than the dread and fear I feel every time the phone rings or every couple of days when I visit.
Talking with my husband last night, I think my plan will be to cut the visits down to once a week. It means I can stock up on food etc - thanks @Banjomansmate for that tip. The carers will have to step up and do more - change the bed, brief food shop, empty bins etc. All the things I've been doing for 4 years. Hopefully they'll agree to this when we meet next week. Well actually, they'll have to won't they, otherwise I'll walk away completely!
@canary, following your suggestion, I'm making a call to see her GP next week as well. Over Xmas she paced all night and virtually ransacked her house - and my daughters and mine - looking for paracetamol to take as she has headaches. I give her 2 pills and 5 minutes later she's looking for more and if I refuse, then I'm trying to kill her! Oh the irony! I have serious concerns about this so it's time to see the GP.
2pm meeting today at mum's with the consultant psychiatrist so we'll see how that goes, if mum lets me in to the house!!

 

[Sirena]

Yes SS will absolutely have to agree with it, the amount of care you do, whether a lot or none, is voluntary. Withdrawing support is the only way they will see the true picture. There was another member who used to go round to help his mother every day and it became too much for him. He withdrew most of his support and got SS to provide daily care. He used to still go round to visit, but from what I remember he didn't undertake any 'caring', he just checked she was alright. After several months the social worker agreed that his mother needed to move to a care home.

Good luck with today's meeting. If you mother doesn't let you in, that will be a big clue to the psychiatrist that things can't continue as they are.

 

[doodle1]

I feel for you. However I am with @canary in that my first port of call would be the GP. Maybe some Citalopram to ease the underlying anxiety to start with. It is so often prescribed for dementia.it is an anti depressant. My mum similar situation was absolutely foul to me but it did improve on Citalopram . Worth a try ?

 

[Suzie G]

I feel for you. However I am with @canary in that my first port of call would be the GP. Maybe some Citalopram to ease the underlying anxiety to start with. It is so often prescribed for dementia.it is an anti depressant. My mum similar situation was absolutely foul to me but it did improve on Citalopram . Worth a try ?

Absolutely, yes. Phone consultation with the GP is booked for Thursday.
Nightmare with the Consultant Psychiatrist today. Mum wouldn't let me in the house at first. Doctor arrived, persuaded her to let us both in. Mum was foul to both of us. I couldn't believe it! She was physically aggressive as well. Her paranoia was quite extreme and she argued non stop with the Consultant and eventually told her to leave, before chucking me out too! It was in one way awful, but in another way I was glad. It's the first time any professional has seen exactly how bad mum can be. They usually get a snap shot and say "Oh isn't your mum sweet?". This time the Consultant could see exactly what I've been putting up with. She advised me to take a step back, she will be in touch with SS to get additional care set up and she's also prescribing medication(not sure what, missed the name, but assume some kind of anti-anxiety drug) to calm her down.
I finally feel I am believed!
So, a strange couple of days of highs and lows but I feel clearer on what I have to do. Trying to stay positive!