Human Rights ???

[Grammy]

Thank you Shemmy.

I see you are in Yorkshire - my happiest childhood days were when I was evacuated to Bridlington to a wonderful caring lady who loved me and could have taught my mother a few things.

Do you know Bridlington it is soooo lovely

[Chemmy]

Thank you Shemmy.

I see you are in Yorkshire - my happiest childhood days were when I was evacuated to Bridlington to a wonderful caring lady who loved me and could have taught my mother a few things.

Do you know Bridlington it is soooo lovely

I do and yes, it's a lovely place. Great beach. You clearly should have stayed

[Lou]

I am a new girl and joined to interact with others in the same situation as me. I am the sole carer for mother aged 98 and I am no youngster myself!

I have a carer in the morning to assist with personal hygiene and dressing etc. My mother hates me for 'interfering' in her life and bringing in strangers! This is not the illness I think she has always disliked me and it takes a brave lady like me to admit that the feeling is mutual. I was an only child and had to do everything. My mom's dementia/ALZ sorta came to a head about the same time my husband's congestive heart failure was getting worse. I could not care for both of them. I am an only child. If you can get her doctor to say, and put it in writing, that she has ALZ then you should be able to move her into a nursing home or an ALZ care home w/o any problem since you have the POA. Do you have the POA for Health Care too? I really don't see you having any problem.

She is obstinate unco-operative and rude and aggressive to her carers and myself.

I was a war baby and like so many others at that time was evacuated 200 miles away. She never once came to visit me in all that time and I think she was pleased to have 'given me away'. Only after 6 years did she allow me to come home and by that time she was a stranger to me with the title of 'mother' - and now some 65 years later the relationship is no different. It is obvious that there is no love on either side. I think I am doing what I do out of some sort of guilt and for my own conscience. I imagine you are, and you need to get some help, talk with others that feel like you do. As far as her being moved into a NH (nursing home) it maybe the best thing for both of you. Go shop around. DO NOT MAKE APPOINTMENTS. You don't want them to know you are coming. Mornings, right after their morning meal is a bad time in any NH. They are like babies. They eat then need to potty. Some wear diapers and until they are all cleaned up, the hall ways will smell something awful. That's after each meal. It they will let you, you might eat pay for and eat lunch there to check out the food. Again, not telling them you want to do this so they can't prepare for you.

Everything I do for her is thrown back at me including the shopping and the cooking and the maintenance of her home. I know it would be in her best interest to be in residential care and I have Power of Attorney so I thought I could make that decision on her behalf in her best interests but apparently not. I have been told that it is against her Human Rights to remove her from her home unless there has been an incident which shows she is in danger. I don't know where you livel, but I have never heard this in Texas. Do not leave her by herself. You'll get in trouble for that. It's dangerous to leave people with dementia/AlZ alone for very long. You can make a run to the store but do not leave her all day or over night with no one to care for her. You could be turned in and you'd be in trouble. So far that hasn't happened - but I believe I am in danger of having a breakdown if I have to carry on taking all this abuse and aggressive behaviour. Everyone says she was like this before the Alzheimers it has just got worse.

Surely the fact that she is unable to care for herself and forgets to eat does mean she is in danger It is.
Social Services dont seem to be much help due to cut backs so we soldier on but are now near breaking point. Most people, even a lot of doctors do not know how to handle ALZ. Find a good Geriatic Doctor. They are up on everything and can really be a good help to you.
Does anyone know if I can insist that she goes in to care against her will. Yes, you can. I did. I would sell her flat to fund the charges so that would be no burden on the state. Are you living in the flat? IF so, stay there. The cost of NH's is very expensive, but if she has any assets, you can pay for that out of her assets. Once she runs out of money, then you can get her on MediCAID and they will pay for everything. You need to get, not only a good doctor for your mon, but a lawyer to help you handle her assets to the best advantage.
Any advice would be much appreciated
Thanks
Grammy

Mercy...it seems as tho since I replied withing the original post, that I've not written enough. I find it easier to answer within the post, right next to what I want to answer so it's right there. I am not just spending time and space so this post will, hopefully, go thru this time.

[Grammy]

Thanks Lou - I am in London and the Human Rights laws of the UK are different to the US. You cannot force someone to leave their own home unless they are deemed to be a danger to themselves or others. As there has not yet been an 'incident' of danger or neglect she cannot be forced to go. She does not need a nursing home she is physically fine just mentally ill and therefore needs a care home - but she disagrees adamantly !

As I do not live in her flat but in my own home her flat will need to be sold to pay for her care = it is classed as an asset

Thanks for your great help and care and attention to my plight it all helps

[sharina]

"If only I had the courage"

Do you have the courage to keep caring for your mum with all these confused emotions?

I think you need to be honest to Social Services so that they are fully in the picture. At the very least they need to sort out some urgent respite for you so you can think straight.

In all the circs they need to decide what is best.

I don't want you to lose it one day and get into trouble. I don't want this to upset the rest of family life.

[PurpleJay]

Hi Grammy

Could you try to increase the input from carers? Are they from SS?

Could you tell them that you are not longer able to make sure your mother is eating and make them responsible for this aspect of her care? My mum lived with us for 2 years until last summer and was very resistant to outside help. When we went on holiday, I contacted SS and they arranged for daily visits at lunchtime to make her lunch and (if she wanted/allowed) leave her something for tea. They at least discussed what she would have if she were to get it later herself. She used to moan that they didn't know how to cut bread or put to much cheese on her sandwiches but I could relax a little bit knowing someone would keep an eye on her. The last time we went 3 months before her admission to hospital they did return on a couple of days in the evening as she wasn't eating much and felt sickly (due to what turned out to be a gastric stricture) so they checked on her and would have called the GP if necessary (we'd had them just before we went and she had prescribed anti sickness and anti depressants). Mum at that time was undiagnosed but was certainly suffering from dementia and had memory problems. She wouldn't be able to find things under her nose and would loose track/have no concept of time.

In mums case, she was very reliant on me and was very demanding which was a worsening of her natural personality. She could be very hard work and very frustrating and I wish I had known she had dementia at the time as I think I may have coped better. Following her admission to hospital with a severe UTI she was eventually moved to a care home as she requires 24 hour nursing care. Mostly I don't feel guilty because there was no choice. I couldn't care for her at home as she cannot be left and I work part time and have a 5 yo son. She worsened a lot in hospital and was diagnosed with vacular dementia. She was aggitated, anxious, agressive, tearful and confused. She is now on medication to help and in between periods of agitation and confusion she is calm. She does not appear anxious most of the time and when she is it is short lived and soon forgotten. Initially she was determined to hate the home and thought she could manage at home/I could look after her. They persevered and with love and kindness won her round. She is now very smiley with the staff but gets agitated when left alone at all. She really wants constant attention which unfortunately isn't possible. My visits used to be full of fury from her but now she is just happy to see me. I think I see her at her best - she is more settled when she has company. It makes her much easier to visit even though the whole thing makes me so sad.

I would hope you could get increased support. I know people often advise stepping back all together but many find this very hard, I know I would. You can tell them that you have reached breaking point though and need help and they should provide it. Could you book a holiday to get this set up initially and then see how it goes? My mum used to resist outside help but did accept (while having a good old moan about it) that she had to have it when we went away. She was at risk of falls and it at least meant she would not be left to long if she did fall. She refused a lifeline of course! Trouble with dementia is she thought that aside from her mobility problems (she walked with a zimmer) she could manage fine. She is still the same and thinks she can go and make a sandwich even though she has completely lost her mobility. Very weird at times.

I wish I knew then what I know now about dementia as I wouldn't have tried to reason with her so much. We used to go round and round and it is pointless. Now I go along with her as much as possible. I try to be matter of fact about things and distract, distract, distract. I only ever disagree when I can't see a way out of it.

Good luck and keep posting.
Jane x

[PurpleJay]

Hi Grammy

Could you try to increase the input from carers? Are they from SS?

Could you tell them that you are not longer able to make sure your mother is eating and make them responsible for this aspect of her care? My mum lived with us for 2 years until last summer and was very resistant to outside help. When we went on holiday, I contacted SS and they arranged for daily visits at lunchtime to make her lunch and (if she wanted/allowed) leave her something for tea. They at least discussed what she would have if she were to get it later herself. She used to moan that they didn't know how to cut bread or put to much cheese on her sandwiches but I could relax a little bit knowing someone would keep an eye on her. The last time we went 3 months before her admission to hospital they did return on a couple of days as she wasn't eating well and felt sickly (due to what turned out to be a gastric stricture) so they checked on her and would have called the GP if necessary (we'd had them just before we went and she had prescribed anti sickness and anti depressants). Mum at that time was undiagnosed but was certainly suffering from dementia and had memory problems. She wouldn't be able to find things under her nose and would loose track/have no concept of time.

In mums case, she was very reliant on me and was very demanding which was a worsening of her natural personality. She could be very hard work and very frustrating and I wish I had known she had dementia at the time as I think I may have coped better. Following her admission to hospital with a severe UTI she was eventually moved to a care home as she requires 24 hour nursing care. Mostly I don't feel guilty because there was no choice. I couldn't care for her at home as she cannot be left and I work part time and have a 5 yo son.

I would hope you could get increased support. I know people often advise stepping back all together but many find this very hard, I know I would. You can tell them that you have reached breaking point though and need help and they should provide it. Could you book a holiday to get this set up initially and then see how it goes? My mum used to resist outside help but did accept (while having a good old moan about it) that she had to have it when we went away. She was at risk of falls and it at least meant she would not be left to long if she did fall. She refused a lifeline of course! Trouble with dementia is she thought that aside from her mobility problems (she walked with a zimmer) she could manage fine. She is still the same and thinks she can go and make a sandwich even though she has completely lost her mobility.

I wish I knew then what I know now about dementia as I wouldn't have tried to reason with her so much. We used to go round and round and it is pointless. Now I go along with her as much as possible. I try to be matter of fact about things and distract, distract, distract. I only ever disagree when I can't see a way out of it.

Good luck and keep posting.
Jane x

[Grammy]

PurpleJay - Thank you for all that good advice I have read it and have taken what you say on board.
We are self funding for the carers morning and evening and I know she needs more hours but I have to keep to a budget
Also when they come in she refuses to co-operate with bathing etc and they cant force her as they say that would be deemed as abuse! Then she says she has already had her breakfast when they come so wont eat what they give her so I feel that the money is wasted anyway.
This is one of the reasons I am ready to give up as it is obvious to everybody that she needs residential care except to her who thinks there is nothing wrong with her.
Hence the title of my first posting "Human Rights" she just refuses to go!

Social Services will not take this any further until there is an accident or she is admitted to hospital then they will have a reason to act. It seems that they think until then she is ok and I just have to get on with it.
She now wont even get in the car with me to go anywhere in case I am going to put her in to a care home

[Chemmy]

It's easy to think you can't possibly step back, but those of us who are distance carers have no choice.

My mum lived on her own for nearly two years after Dad died and I live over two hours away. The neighbours kept an eye on her but as she was a wanderer, I couldn't arrange carers popping in or meals on wheels as she was never in the house.

I had no choice other than to let her get on with it. Yes, she took the occasional tumble but she was returned home; yes, she ended up in hospital with her leg in plaster once (I was abroad at the time. Did I fly back? No, she was safer there than at home)

She used to turn up at the day centre on days she wasn't supposed to be there; so what was I supposed to do? Drive down the A1 to fetch her back take her home? I'm afraid I just said, sorry, there's nothing I could do, and let them sort it out. It wasn't exactly life-threatening after all


I have no idea what she ate - probably toast and scones with jam. I provided other food, but I wasn't there to make sure it was eaten.

Seven years on, she's still here, so it did no lasting damage.


All I'm trying to say I suppose is that you CAN step back. Keep an eye on things, obviously, but don't try and over-manage the situation. That way there will be a managed crisis which, hopefully, should resolve the problem.

I should add, those two years were the worst. Moving her into the CH was the best thing for both of us.

[sharina]

Social Services have a duty of care to your mother......end of . She is a vulnerable adult. If you are not there to support her and she sustains injury they are responsible if they know the situation and the accident /injury is forseeable.

What does her CPN think? What does her geri psychiatrist think. Have you seen any assessments/ medical reports.

You have to firmly say to them "I quit as her carer " so you are not responsible under the MCA. You could write this in a letter to them explaining why yo feel that your mother should be in a home and remind them that they will be liable if she suffers due to their neglect.

Could you not ask to speak to the supervisor of your mum's social worker and ask for a review of the situation?

If you send a clear message to SS they would have to act. I just feel that guilt stops you sending a clear message and you want them to take that decision out of your hands. You have no reason to feel guilty.

You have done more than others have done with more caring mothers. I speak from experience. I had a brother who refused to help me and said "she (mum) should be in a home" and put the phone down on me when I begged for help. (I had a mum with severe dementia and dad was out if action on cancer scare, rest of family in France.) This brother (like the rest of us) was given thousands yearly by my parents (family dividend) but he had no heart. He did cash the cheques .In contrast your actions are saintly.

SS have a new policy of encouraging people to stay in their homes as long as possible to cut their care costs (even self funders because the money may run out given some huge care home fees. easily £45000 - £50000 per annum for privately funded dementia care ) I wonder if you have had the misfortune to have run into that policy.
Perhaps your mother could move into warden controlled accomodation.Perhaps you could explore that possibility with SS and your mum?

This policy of keeping people in their home as long as possible means you could be waiting some time for SS to decide she needs a residential home.


In the meantime there are some holiday companies that offer holidays for people with dementia that could give some respite. (google dementia nursing holiday ) There is also the option of day care. Have you asked Social Services for this. Your mother might enjoy it. I guess she will just refuse to go. If SS said she does not not qualify for day care you could self fund it if you could afford it. Are their local dementia groups that could support you/ advise what is available in the area?

If SS still insist that she has to live at home but you refuse to shop or do laundry etc they would have to put in a decent care package and they would have to pay for it .If there are insufficient liquid funds I guess they would put a charge on the flat to recoup the cost on your mother's death or when the flat is sold when she moves out to a residential home. Others on this forum can advise the position here. Someone I knew used to get direct payments? I am not sure if they still do that. Again others on this forum can advise.

SS cannot force you to be a carer!

[PurpleJay]

Morning all.

I understand that it is hard to step back when you have been so close although it may be the best thing to do. It is hard not to feel responsible for someone when you have been doing so much and then to think about withdrawing some of that support. My mum would never have agreed to go into a home and we tried to avoid it by having her live with us but in the end it was unavoidable. I never dreamed when she came to live with us that we wouldn't be able to cope. I had no experience of dementia and while aware her memory was a problem and she was unable to deal with new things, I just thought she was 'difficult' and hoped to relieve some of her anxiety by making her safer. This was successful to some extent although she found the move hard. She ate better for a long time and had no falls for over 18 months after we moved before they started again. She had more company which she enjoyed and was able to let go much of her remaining responsibility. No garden or house to care for or washing/cooking to do other than the odd sandwich or microwave meal. She enjoyed playing with my son and he with her.

I was relieved she went to the home from hospital so that I didn't have to try and convince her to go. Initially we said it was for a while until she got better but she did hate it to start with. She would have been worse off at home though as I couldn't be there 24/7. It may have been easier to persuade her from her own home but I doubt it. She would most likely have had another fall resulting in hospital admission and subsequent move to a care home much sooner had she still been living by herself. She doesn't ask to come home now and if she asks how long she has to stay there I just say I don't know and to lets take it one day at a time. She has been there 6 months now but has no idea it has been that long. I visit 3 times a week.

For family members living away, while very worrying, they are not able to provide so much help in the first place and so don't have to withdraw as such. I was to close to mum to have been able to withdraw my support. She would have made me feel terribly guilty and if anything had happened to her I would never be able to forgive myself. If she hadn't lived with us she may well have reached crisis sooner than she did because you cannot be with someone all the time and that would have been fair enough. She did have falls and one time spent almost 24 hours on the floor before I found her. She still refused a lifeline, so I used to phone her everyday and if she didn't answer I went round. I think many families end up waiting for something to happen and proceed to move their relative following a hospital admission, initially on the premise of respite rather than as a permanent thing. The problem is there is no reasoning with a person with dementia and they think they can manage and don't need help. They tend to think they are fine and everyone else is bonkers!

Jane x

[Grammy]

I have to say you are an amazing bunch of people! What a great support this TP is. In the last three posts - Purple Jane, Sharina and Gemmy you have hit the nail on the head with your experiences and I really appreciate your advice so much.

She wont go to the day centre or anywhere else for that matter - she wont get in any car in case they are taking her to a home. She is 97 (or even 98)?? so cant be bothered with anything. She tells the Social Services that she shops and cooks (she does neither) she says she runs her own home, she doesnt, I do.
She wont go on any holiday or respite care as she thinks that is some conspiricy to put her in a home.

Her CPN told me she has second stage Alzheimers and get used to it as it wont get better and suggested that it was me who needed counselling to learn how to deal with it!!! Nice one.

I have made a start after all the good advice I have received here. I will first buy the book 'Toxic Parents' I have now made an appointment with her GP and I am going to tell them exactly how I stand and how it is with her. I have then made an appointment with my own GP to tell him how I am feeling and I will set the ball rolling.
But the best news is that I have booked a holiday for my husband and I in July and she will just have to deal with me not being here - and if she cant - there is my amunition for residential care.

I think I will plead for the "Best Interests" meeting and see if that works

Thank you again for you wise and thoughtful advice. I have taken in every single word

[optocarol]

"They tend to think they are fine and everyone else is bonkers!" Oh, how I agree with this!

Just 1 thought, Grammy, it seems to me that if the situation were reversed, even when your mother was ok, she wouldn't feel guilty about not looking after you.

[Grammy]

optocarol - how absolutely right you are!!!

[Chemmy]

But the best news is that I have booked a holiday for my husband and I in July and she will just have to deal with me not being here - and if she cant - there is my amunition for residential care.

Briliant. Best thing you could have done - others in this situation, take note