What happens if you tell doctor you can't do it anymore?

[sarahp]

Hi all

I am having a bad week and I'm sure that's all it is.

But, what happens when you go to the doctor and say I just can t do this anymore.

I have visions of the ss and drs all coming and taking mum away kicking and screaming.

If mum refuses care will they section her? What's the process?

If only mum would just agree to some kind of outside help then I wouldn't have to consider this but I have my own health to get to grips with I'm a newly diagnosed type 1 and I just can't get my health on track with all the stress. At the same time I feel it may be more stressful to do this. I don't know of I'm ready to give up on her but would be helpful to know what actually happens.

Xx

 

[legolover]

I can't say what your doctor will do, but should certainly talk with you about how you are feeling. You cannot be forced to care for someone against your will. Sorry to hear you are feeling so bad and at the end of your tether. Maybe phoning the Alzheimer Society Helpline will also be supportive and give you some ideas

 

[sarahp]

Thanks

I'm sure it's just a bad week, and next week will be fine, everything has been fairly stable for a while but mum has started the not sleeping at all at night faze again, has again started the bouts of crying for no reason which I find hard because it's heartbreaking and I can't do anything because I ask her why and she says somtjing like it's my cat, I say what about your cat? It's because I love him! And there's nothing I can say or do even putting the cat in front of her and fussing him. To say he is fine. so I too have had very little sleep all week. I'm sure after a good bout of sleep I will be fine.

I'm sure it's something to do with the summer as last summer was the same no sleep, putting umpteen coats on and hyperactive throughout the night!

But even though I will cope again after sleep, it is inevitable that one day the day will come as this is my only option as mum refuses any social services assistance so they refuse to help me!!! So just wandered if anyone else had done this and could tell me what happened and if they regret it or not. And have been informed to go to the doctors and tell them you can't do it anymore. But at the moment that option is unbearable I would feel like I have let her down big time! I want a week off so I can go on a course to manage my diabetes but she won't go into respite! If only she would agree to that and I could be fully back with her! X

 

[CJW]

Hi there, From my experience as long as you cope everyone will leave you to get on with it. The only way I made progress was through writing letters with details of Mum's problems and refusal to accept help of any sort. I also had to say I would not care for her anymore before social services got properly involved. Mum still refused help but at least they were aware and vigilant and when the crisis point came, in fact there were several, they reacted. Mum is finally in a care home. She is completely out of her mind and is as unhappy there as she was at home, but she is safe and I am able to sleep at night.
I know how hard it is to step back but, believe me it is the only way to get help. Be strong, you need to do this for your mother's sake as well as your own.
Lots of love...

 

[bilslin]

Hi sarahp and welcome. You sound like you could do with some help with your mum. Thing is if your health is suffering then who will be fit enough to care for your mum. We've all had bad times , where it just catches up with you. So please try and get some sort of help.Do you have SS involved. Having care come in does mean that your mum will be independent in her own home for as long as possible. Hope you are feeling better, some times its just what's needed to get things off your chest and share your problems here on TP. Good luck. lindax

 

[sarahp]

Thanks all

Thanks for the responses.

Yes ss have been involved but they just keep closing our file as every time they come round (mum lives with me) even though mum doesn't know who I am sometimes or people close she puts on a sterling performance and knows exactly who they are and what they are there for, same with the doctors and she just keeps saying I am fine no I don't need any help etc. The doctor is the only one who endorsed a little trickery and said what about a little holiday in a home and tried his best a persuading her she point blank refused. So each and every time even though I'm there saying the opposite they say there's no more we can do we have closed your file!
Cjw What happened when your mum went into a care home with her refusal? Thanks all again. x

 

[CJW]

Thanks for the responses.

Cjw What happened when your mum went into a care home with her refusal? Thanks all again. x

Dear Sarahp,
There is no quick solution when the patient outright refuses help. Do you have a power of attorney for her health and welfare? If, like me you don't the decision to remove her against her will from her home can only be taken once she has been deemed to not have the capacity to make this decision for herself and has to be agreed upon by the SW, mental health professional and two doctors. They refused to do this for my mother as she insisted she would rather die than go into a home. I knew she did not have capacity, she was not eating properly, mismanaging meds, hygiene had gone to the wall, she was delusional and paranoid, but as is often the case she could fool everyone over a short length of time. I eventually got the SW on board once I told her to sit with my mother for an hour or two and that if she thought she had capacity after that I would never bother them again. Even admitting that she did not have capacity THEY still thought she was fine. Mum eventually stopped eating and drinking completely and they put in carers three times a day. There was still no persuading THEM that she was a danger to herself and others until alerted by a neighbour and ultra wierd telephone conversation with my mother I drove over and found her in the street running away from the americans with a knife and metal skewer in her bags! I drove her to A and E and she was kept in hospital for a week before being released into a care home in her "best interest".
You ask about sectionning. They will only do this in extreme circumstances, when there is a clear and imminent danger to herself or others.
I am afraid you are in for a long haul, but you need to get to know your social worker, call her every time something goes wrong, or you anticipate a problem. My mothers SW soon realised I was accurately predicting what would be the next disaster and our relationship changed for the better when she realised that it wasn't that I didn't want to care for my mother but that she wouldn't let me or effectively anyone else.
So if I was you, and having made all sorts of mistakes, I would write to everyone with all my concerns, step back from day to day care, but be on hand to cope with the series of minor crises that may have to happen if she continues to resist help.
My heart goes out to you and your mother....be strong and look after yourself...

 

[sarahp]

Thanks again cjw

Yeah I thought as much!! That's the same sort of situation I am in, I wish to god I had for the Poe for health and welfare but when it was explained to me I had no idea it was for things like this, it was described as you have the decision to do not resuscitate and I thought I don't want that decision so stupidly didn't get it. If only i had known! Knowledge is power haha.

My mum doesn't live on her own though she lives with me. Maybe that was a mistake, she couldn't look after herself at all. But how do you watch your parent struggle you can't!

I just wandered to see what my future options would be.


I'm only having a bad week or mum is which has a knock on effect, I'm sure it will pass. As you know things go in fazes with this disease and I will wait til she has clearly lost capacity! Well clearly to the powers that be and I will write to them. Thanks again.

Thanks

 

[sarahp]

Thanks xxx
Hi sarahp and welcome. You sound like you could do with some help with your mum.

 

[Eleonora]

Hello Sara - you do seem to be running on empty; what with trying to stabilise your type one diabetes, whilst coping with a difficult mother.

I wonder if a c.c.t.v. camera set up to monitor your mother's behaviour might provide the evidence you need to prove that she is not the, 'firing on all cylinders' old lady she gives the appearance of being to outsiders.

It would appear that these cameras are very effective in disclosing poor care in hospitals and care homes; but maybe they can also be used to show just how unreasonable a patient can be once they think no one is watching them.

I do hope things become more bearable for you - Hugs,

Eleonora

 

[SueShell]

Doctors have no sway whatsoever, according to SS! The person that knows the patient the best, including yourself of course, the said Doctor, has no sway with SS. I have that in writing from SS themselves. SS don't take a blind bit of notice of what your GP says, very wrong I know, but very true.

 

[CJW]

Dear Sarah, I understand you are thinking about the future, but do ask for an assesment from SS now. The machine is slow and you have a much better chance of getting the help you need when she needs it if they have been following her progression. Eg If she is charming and lucid on first meeting they will note as abnormal the fact that she is perhaps aggressive and disorientated the next and not just think she is a bit of a grumpy old lady. I know it is a hard step to take and feels like letting her down and admitting defeat to ask for help but believe me it is better to start building a relationship with the SW sooner rather than later. Remember no one will take your word for it that she has lost capacity they need proof! Also they can provide help that means you can keep her at home for as long as possible and the sooner you get her used to that the easier your life will be too.
I sympathise and know what you are going through. It is one of the hardest stages to cope with because none of us have a clue what we are doing.As time goes on it of course doesn't get better but we are perhaps more accepting of the fact that the situation almost inevitably becomes more than one person can cope with alone. I do my very best for mum and I have now got rid of the guilt and day to day just try to make sure her life is the best it can be. She isn't happy, but she wasn't happy at home, she is warm, fed and watered and given the right meds, picked up when she falls and has company. I spend a few days each week at her home so I can spend time with her in her care home. She still hates me most of the time but when she first sees me her face lights up, before she starts spitting venom. That is what it comes down to really, as the practical side of things requires more help than you can give, your presence and love remain important.
sorry for rambling on... Hope things improve. Your mother is lucky to have you....

 

[sarahp]

Thanks so much all for taking the time to write back. I will try the Ss again, 3rd time lucky. Good idea Eleanor.

I am going to have to I think. I can't cope with no sleep and the neighbours are going to start complaining soon because she is banging so hard I the front door it sounds like as one kind of raid! at night for hours trying to get out to the non existent people. Starts the dogs barking throughout the night and keeping my other half awake who has work the next day so I think I've gone as far as I can! My family are all Down so I think enough is enough however heartbreaking it is going to be. I'm already getting emotional writing it! I hope it's a care home that will allow her to be out daily all day! That's also the thing that scares me to they take away deciding on care homes away from me etc Xx

 

[CJW]

Hi Sarah,
If you are self funding you can choose the care home. Although it depends on where there are vacancies. If the council has to pay either you go along with the homes that fall into their fee limit or you can choose to top up fees for somewhere you might prefer. Again the SW is the best bet for pinpointing the best places for your mum. They are not allowed to state preferences but a face to face meeting means you do get a pretty clear indication. I initially chose a home I wasn't very convinced about and when I explained my doubts the SW asked me which ones I had seen and suggested I should perhaps check out one I had not bothered to visit because of a neighbours negative comments. It turned out to be miles better than any of the others...So the best thing is to get out and start visiting....there are some really depressing places but don't despair there are also some lovely ones with caring staff, good food and happy residents. I think I chose Mum's care home because the residents seemed like people she would have liked to have as friends when she was ok and the staff are very cheerful and chatty with everyone. If the SS dont react when you call go via the GP tell him you can't cope a day longer...a referral from the GP got prompt action for me and mum..
Be brave...I will be thinking of you.

 

[Tinkerbelle258]

Hi Sarah, I've only just read all of your thread, and my heart goes out to you.Whatever you do, it's not going to be easy. You say your Mum lives with you, is it your house? If so, you could try "evicting" her, (yes I know it sounds cruel but sometimes drastic actions are needed). Write to social services with copies to gp and anyone else involved stating that as from such and such a date your Mum will be homeless and not your responsibility.
I know to many this may seem heartless but it worked for my friend who really was at the end of her tether. Social services finally realised that something needed to be done and her Mum was taken (against her will) into emergency respite care. It took several weeks for my friend to recover but eventually, together with social services, a good care home was found.
It's such a shame that social services can't work with us in the early stages before carers health has to suffer.

 

[sarahp]

Thanks so much for your time guys I really appreciate it. I am struggling because not sure what's more stressful plodding on or doing these things. I completely agree if only this **** system they have could be improved. Only a little help could have prevented this. But they refuse.

I'm going to have a couple of weeks where I take mum to lots of places she enjoyed and to have a last memories to keep , well for me anyway. Then I am going to ring the ss. Will let you all know how I get on!

I really don't feel even though I do realise why it came to that , but I am not able to evict her. I just couldn't live with myself.

Not sure she will be self funding or not, she only has a state pension but has a property that is for sale but it is only worth £40k. So not sure how that would work. You know I am never so lost with anything. I am usually such a knowledge seeker that I can solve any problem but this disease and the system has me completely stumped!

Thanks again for all your advice guys xxxxxx

 

[dottyd]

Thanks so much for your time guys I really appreciate it. I am struggling because not sure what's more stressful plodding on or doing these things. I completely agree if only this **** system they have could be improved. Only a little help could have prevented this. But they refuse.

I'm going to have a couple of weeks where I take mum to lots of places she enjoyed and to have a last memories to keep , well for me anyway. Then I am going to ring the ss. Will let you all know how I get on!

I really don't feel even though I do realise why it came to that , but I am not able to evict her. I just couldn't live with myself.

Not sure she will be self funding or not, she only has a state pension but has a property that is for sale but it is only worth £40k. So not sure how that would work. You know I am never so lost with anything. I am usually such a knowledge seeker that I can solve any problem but this disease and the system has me completely stumped!

Thanks again for all your advice guys xxxxxx

If your mum has anything over £23.5k then it's up for grabs.

You need to talk to LA finance dept.

They might put a charge on the property so that they reclaim the money when the property is sold.

 

[Boredhousewife]

In the same boat

I am in the same boat as you. Mum does have some carers, because she is not aware she has the opportunity to refuse them (shhh! Don't tell the SS!) She lives about 100 miles away from me and cannot live with me. We tried. Didn't work in a massive way! She has been assesed as needing to go into Extracare. Basically her own flat, attached to a care home, with carers in the daytime and a warden at night, meals in the care home. I find the gap difficult to deal with. I mean, Mum has been assessed as not having the capacity to decide her living arrangements for herself, but she still has the right to refuse to be moved. ***? How the heck is that supposed to work?! If a person is ill enough to need care and cannot understand the consequences of refusing it, that ought to automatically negate their right to refuse it, surely? Or at least, it didn't ought to get dumped on unwilling family. I dont have the right to refuse to care for her.... Not if I don't want her to starve in her own filth and for my brothers and sister to take all her money.... SS are using that rights thing to excuse themselves from taking responsibility. And unless you are callous enough to see your beloved parent suffer... Well it turns out that if there are no family willing to stand up and take responsibility, SS have a legal duty to treat that person the same as if they have no family and take over the care of them. They don't tell you that, though, do they? If you opt out, you can always opt back in if you feel your mum is being abused or abandoned. Do not drive yourself into the ground. Make them catch you before you fall.

 

[sarahp]

I know I agree. It seams crazy doesn't it. I asked the social services to come round and not say they are the social services. Because of the stigma that causes immediate upset. It puts mum on the defensive straight away. I just wanted them to say their name. Because as anyone knows with this disease to help the situation a little white lie is needed now and again to restore calm anyway. But they said they are not allowed to do that! No white lies allowed. They come with briefcases and make it all formal which just scares her. The first thing they did was say they where the social services! I saw mums walls go straight up, oh no I'm fine thank you!!

 

['Are' Lou]

Hi Sarah, I'm in a similar position with my mum. She still lives alone (I'm about 10 mins away) She cant make any meals, she struggles to decide what to wear. She struggles with everyday living to be honest, making a cuppa is difficult for her, she forgets to wash & clean her teeth, cant cope with phone calls unless its me. She struggles with conversation with more than one person and so on. I go every morning and do whatever is necessary. I go every tea time after work, make a meal spend some time with her maybe do a jigsaw, watch Tv, go for a walk if weather good etc. I have every Wednesday off to take her out and do things I think she'd like. I try my very best to spend as much time with her as I can over a weekend. However, she cries everytime I leave. She asks why I'm leaving her alone. She is very anxious. She gets very angry with me for dumping her and making her stay on her own. She sometimes calls me in the night to ask if its right that she is on her own? She is always looking for someone. I have a family (very understanding thankfully) but it is becoming harder and harder to give my mum the care she needs. I have had some health issues lately, brought on mainly as I have been neglecting myself and am stressed (surprisingly)
I asked Social Services to come and do an assessment, that I was at my wits end and could no longer cope.. They came and she put on a marvellous show for them. Talked about all the things she used to do. All the meals she used to make. Said she was ok, but just didn't like being on her own. They recommended she get a pet to keep her company a cat or a budgie! (she cant even look after herself!!) She would be self funded if she went in a care home, but they said if they were funding her, they wouldn't recommend she went into fulltime care!
I was amazed. They didn't seem to have listened to what I had told them.
I went on holiday recently and after a lot of soul searching I decided put mum in a care home for respite care while I was away. Previously friends and relatives had helped out. She's too far gone for that now. I had taken her to the home for days for a couple of weeks previously to me going away. The night she went in for the week she was very distressed. I nearly didn't go away. However, although it wasn't perfect she was quite well and happy when I collected her a week later.
Now she is home she is completely confused. Keeps asking me to take her home? Doesn't know where she is.
I have decided that for my mum's well being and my health and well being she will have to go into a home permanently. It is not ideal, of course, she will be self funded and will have to sell her home. But how much longer can I go on before I completely collapse and then no good to her at all. I know it'll take her a while to settle. I know she'll ask to go home, but she is doing that now. I know that I'll find it difficult, upsetting and heartbreaking and so will mum probably. But nowadays she is not happy anywhere, she is confused and anxious in her own home, so what do we have to lose by her going in a care home.
It has taken me a long time to come to this stage and everyone has to do what they think is right at the time. I am only ringing the care home today to arrange for my mum to go in permanently. Money is a masssive factor. Mum only has enough money, even with the sale of her house, to last maybe 3/4 years if we're lucky. The home is approx £600pw the council would allow approx £450 pw if they were funding. My main concern is that when her money runs out, I can not top the difference (been working part time to look after her for years so not built up much savings myself) will she be moved to somewhere else? However, things are at such a stage now that I just think I'll have to cross that bridge when I get to it.
I sincerely send you my very best wishes that you get sorted. You may feel that this week is just a bad week (hell knows we've all have them) but if you're realistic you know there will be lots of bad weeks coming up. I strongly feel that carers have to become selfish (which is alien to us) think of yourself. You have to have a life. You have to give yourself a break. You have to be fair to yourself. Then you can be fair to your mum. You can give her what she needs from you, which is a mother daughter relationship and leave the caring to professionals. Someone at an Alzheimer meeting told me that if my mother had Cancer there would be carers available to help her and help me. No-one would expect me to be her only help. No-one would expect a non professional to care for someone in the latter stages of cancer alone. So why should it be any different if my mum has dementia? Why should my mum not have the care she deserves?