Please help me to stop going mad!

[JeanetteP]

Hi,

I am new here. My Mum lives with me and has Alzheimer's. She is 84 and driving me crazy. Mum doesn't look after herself and won't let anyone else do so either. Its a very unpleasant situation to be in. Last week we (myself and a nurse from Lea Hurst Day Hospital) managed to get her to attend the assessment unit for the morning to see if she liked it. The plan was then for her to attend for 8 weeks Mon and Thurs, so that things could hopefully be put in place to improve the situation.

Well, Mum said she did enjoy the morning and agreed to go back yesterday. Everything was laid on, food transport etc. I even got a friend to be at my house when the transport came to make sure they got in and took everything.

Monday morning comes, I go to get Mum up and she has a tantrum, screaming at me that she wants to be left alone in bed. The last time she did this was with a carer who tried to get her in the shower. They have now stopped coming as she wouldn't let them do anything.

Anyway, I left her in the hope that my friend would be able to persuade her to go. He did manage to get her up and dressed but tthere was no way he could get her to go.

Mum does nothing for herself, although she tells everyone who asks (District Nurses, CPN etc) that she washes and showers, goes to church etc. Mum can't use the TV or make herself anything to eat.

I work full time and am struggling to keep on top of things. I often think Mum is deliberately doing this to just be nasty.

My Dad also had Alzheimer's but he did go into a Care Home, but died in June from a blood disorder.

Can anyone suggest a way forwards before I walk out

 

[Nebiroth]

Your mum is not doing this deliberately, not in the way you are thinking anyway - although her words and actions are intentional, it is the disease that is causing physical changes in her brain that have changed her personality that are at the root of it. This is not the mum you used to know being nasty, it is in effect normal for the new person that has replaced her. It's difficult to put into words - some people might say "she doesn't mean it" but I don't think that is really true. She does mean it, but the reason she does is the illness, not anyone's fault; not hers and certainly not yours.

Most people with dementia have no insight, which often makes caring much more difficult, because they truly believe there is nothing wrong and thus do not see any reason for people wanting to intervene. As would any of us, "interference" would not be welcomed as we know we are perfectly capable ourselves. Moreover, it almost always involves a certain loss of independence and dignity - I am sure that none of us would welcome strangers wanting to help us or telling us to have a shower since we know we are capable of doing it ourselves and have already done it. That's how your mum feels and it's probably why it provokes her.

Also, persons with dementia literally forget social control and regress into a more child-like state where they tend to act on impulse and emotion - it is literally like a child who has tantrums because they have not yet learnt not to have them. Your mum have forgotten this learned control. So she acts as she feels without consideration for consequences or the feelings of others.

She may also be frightened - she may have some realisation that something is wrong. It is in part denial, and she is lashing out at anything that contradicts her internal story of being perfectly OK. But she almost certainly believes she does make herself meals, goes to church, etc.

If you are really struggling then it may be time to take a step back and let professional deal with things. This is what social services are for. You are under no onbligation to do anything. I would be inclined to contact the assigned social worker and have a good long talk with them. Remember to do only what you want to do - social workers often operate under the assumption that family members are willing and able to do everything if only they had a bit more help to enable them. If there are things you don't want to do for any reason, draw a line and say you can't and won't.

Professionals are trained to deal with this sort of thing, they aren;t emotionally involved and they get breaks!

There is no point if you carry on trying to cope and make yourself ill. It won;t help anyone - you can't do your mum any good if you have a nervous breakdown.

You are entitled to your life too.

You have a legal entitlement to a carer's assessment. This is purely about your needs, to provide help to do what you want to do, and to fill in gaps for things you can't or won;t do. I would ask for one as a starting point.

 

[Eternity]

Jeanette,

Sorry you are going through such a hard time. What you say rings so true in how it can feel.
Logic says that the behaviour is not on purpose but it can feel that way when you are under stress and you're a carer and you work and you are trying to arrange/plan things for your mum's good.

Nebiroth's advice is right, speak to your mum's social worker to see what can be done, tell them how desperate you are.

In my head I've decided to walk out a thousand times too - never have (yet) but have had to make some big changes (stopped working) so I could cope.

You need to think about your life, what you want for you and what you can do for your mum.

Good luck
x

 

[JeanetteP]

Carer's Assessment

Nebiroth,

I appreciate your reply. I can appreciate how Mum must be feeling, however there are certain things that have to be addressed. Mum very rarely changes her clothes or washes. She never showers, and if I comment or ask her to do so she gettings into a huff or goes into emotional blackmail. This means that everything she comes into contact with become flithy vey quickly. Social Services have tried carers on several occasions. The last being their special team who specialise in people like my Mum. Mum managed to defeat them. I stopped them coming when Mum wouldn't let them do anything at all. Even if they made her a meal she would leave it until I came home. I have worked for both the NHS and now Adult Community Services and so am acutely aware of how valuable and limited these services are and could not continue to allow mt Mum to waste anymore of their resources. Mum no longer has a Social Worker. Social Services advise was to buy in someone ourselves. I have tried letting her live the way she wants to but I have to live here to.

I have had a carer's assessment. Which is all well and good However, unless Mum accepts the help needed to allow me to do the things I would like to do it is not worth the paper its written on. Mum still has too much mental capacity to be able to take control.

Basically, my only real options are to put up with Mum spending all day sitting in soiled clothes and sleeping in soiled bedding and leaving everything she touches soiled, or be really hard and move out.

That is why when I thought we had turned a corner with Mum agreeing to go to the Day Centre, which would allow for some intensive cleaning and the nurses to work on getting Mum to accept some help, her refusing to go hit me so hard.

My Mum has more rights than I do despite the fact that she will probably make herself and possibly me very ill. How can this be right

I am under a moral obligation as I am not hard enough to simply walk away

I will only be entitled to a life when she dies

Carers legisalation only really works whe there is co-operation from the person receiving the care.

I am sure that this sounds confrontational and I apologise for that. But I really do feel the system doesn't help people in my situation.

 

[jaymor]

Jeantte you may not be hard enough to walk away but you may well be carried away if things carry on as they are. You really are heading in the direction of carer breakdown.

If your Mum has enough capacity to blackmail you then she has enough capacity to understand you telling her that if things don't change re cleanliness etc. then the authorities will take the care out of your hands and she will have no choice other than to do what they dictate and probably where they dictate.

If you do challenge her you will have to be really sure she is understanding what she is doing and it is not the advancement of dementia that is causing this. My husband is so different from the man he was before dementia you would swear he is from another planet.

Wishing you luck in finding some kind of a solution to allow you and your Mum to manage better than you are now.

Take care, Jay

 

[rosa4077]

Hi jeanette , I am so sorry you are going through such an awful time with your mum but as previous posters have said you do not have to do this , maybe time for professionals to come in , do you have siblings who can help out if not you must tell social services you are not doing this any more . I know that this sounds terribly wrong to you and that you feel you have a moral obligation to look after your mum but cerainly not at the expense of your health and sanity. i have experience of a mother who believed that she went to church, shopped independantly and cooked all her own meals the reality was that she was not capable of any of these ,as previous poster commented this is a form of denial due to the horrific changes they are experiencing mentally and i know that my mum was scared and frightened and this produced so much venom and dislike , it broke my heart however i got social work involved three months ago because i coud not cope anymore, now outwardly we have a friendly capable mum supported by carers and proper meds who appears to be coping well , having talked with her Care Manager this morning Mum copes much better without me being there, I love my mum but had to let go . sending you a big hug Rosa

 

[Nebiroth]

Hi, sorry that you have already tried most of the things I have suggested with little success!

I think the nub of the matter is this: you are not being hard when you walk away; you are coming to the realisation that your mum's care needs are beyond what you can provide. Moreover, if you keep on trying, it can be positively detrimental because eventually you will make yourself ill.

I think you desperately need a break and to be able to step back and look at things objectively. Who is benefitting from the current situation? Not your mum, and definitely not you.

If this carries on, it's not only your mum who will be ill, but you as well. This helps no one.

If your mum had a broken leg or somesuch illness, you would not hesitate to let the professionals step in - well, the situation you have now is exactly the same!

As a carer you do have rights, the biggest right is to walk away.

If it helps, when your mum was well, would she have wanted to you, her daughter, to essentially dedicate her life and drive herself into illness trying to look after her? I strongly suspect that the answer is no, she would not. She would have wanted her daughter to have her own life to live and to be as happy as possible.

One thought steike me: many people with dementia develop a fear of water and refuse to contemplate showers or baths. Some of them may also be frightened of the noise of a shower, or fell they may fall, or not know what to do but are afraid to admit this, or not want to submit to the indignity of being washed by a strange ror their own daughter.

In this case, would it not be possible to provide encouragements with flannels and fluffy towels, or even antiseptic baby wipes for the important bits?

As to the changes of clothing etc, might it be worth simply saying "today is the day to change mum, because the council come today to collect the clothes, they do laundry for free for people of (her age)

My experienc eis that lots of people will grab the chance of getting something for free with both hands!

 

[Jessbow]

What would happen if you told her that you'd be telling her GP of her non compliance of general hygiene, and then going and doing so?

Go to her GP, tell him/her exactly what you have told us, and that unless a plan is formulated for a way forward that you find acceptable, then you are considering yourself no longer responsible for her heath and welfare.

If you really and truly think she is being manipulative, then ask the GP to temporaily section her- it wont be pleasant or you or her, but might be enough to get a ball rolling.

Whatever you do, DONT be a stranger here, shout , scream yell all you like , we all do it!

 

[Witzend]

Your situation does sound desperate - I am so sorry. If you haven't already, could you try getting really tough and blunt with your mum, and tell her that if she won't go to day care to give you a break and enable cleaning, then SS will take over and put her in a care home?
OK, it's a fib, but many of us have had to use them.

It must be so hard when someone who is living with you won't cooperate or accept help. talk of walking away is all very well, even if you could bring yourself to do it, but where do you go? you have to live somewhere too, and pay the bills.

If things don't improve at all, is there perhaps a friend you could stay with for a couple of weeks? You could then tell SS that your mother will be alone and is at risk. From all I've heard, SS are often happy to assume that the resident carer will just get on with it - they know people can rarely bring themselves to walk out - and thus save them the bother and expense of having to intervene. I know there are some very good SWs out there but presumably they are all under pressure to keep costs down as far as possible.

 

[Hair Twiddler]

Hi Jeanette,
Oh your story is a sad one.
I think that you've had lots of good advice here. Nebiroth's comment is spot on, many older folk, in particular, do grab with both hands services that are offered free, as they have "paid into the system" - I use this ploy often with my mum!
The mention of SS stepping in and taking over is also useful - my mum only accepts some things that she doesn't want to do because I blame SS, doctors etc for forcing us to comply and I will get into trouble for not adhering to their plans. I usually end these conversations with a cheery "We know better don't we but for now let's go along with them".

The only piece of advice I can give which I don't think anyone else has mentioned is your job. Whatever you do carry on. If it is at all possible, put your home life behind you when you are there. It will keep you sane - IMO. Is work and mum balance getting too much? What about your social life?
You have much on your plate - TP'ers are here to help & listen.

You will often see the words "rant" and "vent"(usually with a "sorry" attached to it!) in posts. We all do it from time to time and believe me it really does help!
- Twiddler

 

[Delphie]

What a difficult situation Jeanette. You have a lorry full of sympathy from me because my mum was very much like yours, in denial and with major, major hygiene issues (and the rest!). She stopped washing and although she sometimes changed clothes, they weren't being washed either so the changing didn't really achieve much. She got very smelly indeed, to the point that when I was sometimes trying to find her and went to places she was likely to be, I'd smell her before I'd see her. It got bad!

I didn't live with her, and that's why my heart goes out to you so massively. I simply couldn't have done, couldn't have shared the same living space with someone so incredibly dirty. I couldn't even use the loo in her house and would go to a nearby cafe or supermarket on some pretext instead. So yes, I take my hat off to you for sticking it out.

As well as showering you with sympathy, I wanted to post to tell you that in my mum's case at least, the hygiene issue wasn't actually that important on the SW's list of priorities. My mum refused to engage with carers provided by the social services and she equally refused to engage with people from a private agency. She mostly wouldn't let them in, or if she very occasionally did she wouldn't let them clean and certainly not wash her. As far as she was concerned she washed regularly or had a very good reason for temporarily not doing so, but took any suggestion of help as a major affront. So we had a very stressful time, all of us, her included, of trying to get her to accept support but once I found out she was climbing over the back garden wall to dodge the carers knocking on the front door, well, I had to put a stop to them coming.

What happened was that she was allowed to live in filth and to carry on getting smellier and smellier. The eventual decision to have her sectioned (I placed her in care before that happened) was made largely due to overall self-neglect with her refusal to put the heating on through the winter months being placed at the top of the list. There were also massive issues with her calorie intake, her fridge being full of rotting food she'd refuse to part with, her forgetting whether she'd eaten or not and so on. But I really think, in my mum's case at least, if it had just been a case of her being incredibly dirty she'd still be living at home now. The line the professionals I was involved with took was mostly about 'real' risk, such as hypothermia or too big a weight loss.

I know that this doesn't really help, but I thought I'd share anyway.

 

[Miss Merlot]

Is she living in your house?

If so, you can tell SS you are no longer prepared to home her and then they will have to intervene.

 

[Dunkery]

Hi JeanetteP,
Welcome to TP. I hope you will find it helpful and comforting to be able to be in touch with other carers. I am in a very similar situation to you. I live with my 87 year old mother,who has dementia but is also in total denial that anything is wrong. I really feel for you. I have just had to come back early from a carers' support group because I had left a sitter with mum at home. She was ok to begin with but suddenly went outside in the garden looking and calling for me and got so upset that a neighbour phoned me. As soon as I was back, Mum was fine and is now asleep in the chair.
Mum has been going to a day care centre one day a week for the past month but has not gone very willingly and this week was so disruptive that the manager says they don't think they will be able to continue to have her, unless she improves on the next visit. As I am the sole family member, I rely on these times to be able to go out on my own. I am feeling really despondent at the moment. Mum says she just wants to be at home with me on our own and that she will not be forced to do anything she doesn't want to do. She does not recognise that I need to have a break at all! Like your mum, mine does not like the carers doing anything for her and this morning was shouting down the stairs for me to get her dressed while the carer was here.
I do not have any answers for you I am afraid, except to say I think that other people have made some good points about not feeling guilty about wanting to have time to yourself and also about being honest with the professionals involved about how much strain you are under.
Take care.

 

[stillcaring]

My mum's much the same - much love and good wishes!
I HAVE convinced my mum that she gets 2 hours free help a week because she's 87 and she just about lets the carer take her to the hairdresser (her hair doesn't smell now) and hoover her house. (Obviously I pay the carer with my mum's attendance allowance, but she doesn't need to know that)
But I don't live with her and have my own (OK I admit it, not very clean) home 5 minutes walk away.
And I don't use the loo in my mum's house or eat or drink anything that's been there.
No advice really, except take advantage of the dementia as much as you can - eg my mum goes to the loo and forgets she has done so so often goes 3 or 4 times before we go out. In the time it takes her I throw out the mouldy food, water the plants, sift through the places she may have hidden the post, swipe dirty clothes and secrete them in the boot of my car for washing, reclaim money from her purse that I've spent on parking etc etc. Sometimes I really upset her by making her do something she doesn't want to (like take off a filthy top) but then I go away briefly (post a letter or something) and she's forgotten by the next time I see her.
But you probably do all this anyway.

 

[JeanetteP]

Hi All,

Thank you so much for replying you have been a great help

It is a relief to know this is a common problem.

Fortunately Mum is not very mobile so she can't leave the house unaided, so she can't hide from any carers if there were any.

Our GP is lovely and fully understands the situation with Mum, she says she is in complete denial and there is nothing she can do. However, she is always looking out for me. In fact when my Dad died on 20th June she phoned me up to ask what time I wanted off work.

Social Services - again not much help. They can't force Mum to accept help they say They also only offer a time limited service for special situations after which things are suposed to go to a business as usual footing. We have never made any progress towards getting even close to that point.

On a plus note fingers crossed I have managed to get Mum to agree to go to the da centre tomorrow by saying it is going to thunder all day and she wouldn't want to be at home alone in that

All your stories are so similar to mine its frightening

Will let you know if she actually goes tomorrow.

Thanks again - need to post something on another thread now

 

[SueShell]

Nebiroth,

I appreciate your reply. I can appreciate how Mum must be feeling, however there are certain things that have to be addressed. Mum very rarely changes her clothes or washes. She never showers, and if I comment or ask her to do so she gettings into a huff or goes into emotional blackmail. This means that everything she comes into contact with become flithy vey quickly. Social Services have tried carers on several occasions. The last being their special team who specialise in people like my Mum. Mum managed to defeat them. I stopped them coming when Mum wouldn't let them do anything at all. Even if they made her a meal she would leave it until I came home. I have worked for both the NHS and now Adult Community Services and so am acutely aware of how valuable and limited these services are and could not continue to allow mt Mum to waste anymore of their resources. Mum no longer has a Social Worker. Social Services advise was to buy in someone ourselves. I have tried letting her live the way she wants to but I have to live here to.

I have had a carer's assessment. Which is all well and good However, unless Mum accepts the help needed to allow me to do the things I would like to do it is not worth the paper its written on. Mum still has too much mental capacity to be able to take control.

Basically, my only real options are to put up with Mum spending all day sitting in soiled clothes and sleeping in soiled bedding and leaving everything she touches soiled, or be really hard and move out.

That is why when I thought we had turned a corner with Mum agreeing to go to the Day Centre, which would allow for some intensive cleaning and the nurses to work on getting Mum to accept some help, her refusing to go hit me so hard.

My Mum has more rights than I do despite the fact that she will probably make herself and possibly me very ill. How can this be right

I am under a moral obligation as I am not hard enough to simply walk away

I will only be entitled to a life when she dies

Carers legisalation only really works whe there is co-operation from the person receiving the care.

I am sure that this sounds confrontational and I apologise for that. But I really do feel the system doesn't help people in my situation.

You are so right and you situation is not dissimilar from mine except I live next door to Mum not with her. It's the guilt thing. My Mum has always been very challenging all her life and now with AD is even worse. I'd love to walk away but can't and I so agree with everything you've said, sounds so much like something I would have written. My Mum wants to die, I want her to die and there we are. She is made to suffer because its illegal to help people on their way, and I want my life back. What I've said is no consolation I know, but you are not alone in your thoughts and yes, I feel that SS think 'stuff the carer' let's listen to the thoughts of the person with AD instead, which is totally ridiculous, stay strong, xxx

 

[AlisonI]

Hi, I am new to this. I live with my Mum who is 83 and is also driving me mad. Her problem - or is it mine? is exactly the same as the other posts. She won't shower because she says she already has had one. She smells,she won't change her clothes and tells everyone that she cooks, shops and cleans. She is really good at confabulating and unless you know her you would think that what she tells you is true. I've asked for help from the social services but they won't do anything unless she agrees - which of course she doesn't.
I get over the dirty clothes bit by sneaking into her bedroom while she is asleep and taking her dirty clothes away to wash. If I didn't she would wear the same things for ever. When she needs new clothes I just replace her old stuff and don't mention anything. She sometimes asks me if say, a cardigan is hers but as long as we pretend it is she seems to accept that and will wear it.
I am wondering if I should get a private carer to come in a couple of afternoons a week to be a sort of companion and maybe to take her out for a walk or just sit and talk to her. She absolutely refuses to go to day care. Has anyone else tried this - and where do you find the right person?

 

[1954]

Strange as the SW didn't really ask MIL if she'd agree to respite and Day Centre. He just told her that was what was going to happen! We do the same.

We do give her options but they are only the ones that we want for her a bit like a toddler I am afraid.

MIL would not wash and has a fear of water. I inform her she has a choice, wash or NH it's her choice.

She has no access to any clothes and we take all her clothes away every night. I put all her clean clothes in her room about now or a bit earlier so she can not ferret them away before the morning

I feel very controlling but I couldn't cope with the smell that would be constant.....

I only got SW involvement as I called them hysterically and said I could not cope anymore. I also got some great help here especially from one person

This sounds dreadful but I have come to the conclusion the SS maybe overloaded but that's not my problem

 

[Witzend]

MIL would not wash and has a fear of water. I inform her she has a choice, wash or NH it's her choice.


I feel very controlling but I couldn't cope with the smell that would be constant.....

we also found that getting tough was the only way with showering. Mind you, I say we but it was really my sister who lived over a 5 hour drive away and was thus there far less often than I was. I don't mind admitting that I couldn't face the tears and tantrums. My sister didn't ask - it was a case of 'Come on - you NEED a shower - you smell.' She wouldn't take no for an answer. And of course the tears and upset were quickly forgotten. Looking back, I guess I was there so much I sort of got used to it, whereas it would hit my sister in the nostrils whenever she came!
I do realise this won't work for everybody, though.

Oddly enough the only other time I could get my mother into the shower was when the mobile hairdresser was coming and I said she must wash her hair first. (It used to smell horrible). If she had been a regular at the GP I dare say she might have showered for him, doctor being akin to God, but she was so rarely actually ill.

 

[AlisonI]

My sister is just the same. She lives 2 hours away and when she comes she manages to get Mum to shower, with a little argument, but none of the major tantrums that I would get.
Maybe I am just ground down with the constant battles to manage our lives. No-one else has to stop her making a sandwich from kitten food(I kid you not!) or start the washing machine all over again when she fiddles with the dials or go and fetch her from the neighbours when she takes decides to go and play with their children - I've had the parents round asking if I would mind coming to take her home so the children can go to bed!. While I am writing this I realise that some of the things she does are quite funny but when you are in the middle of it you seem to lose your sense of humour.

I want to give her as much freedom to do the things she likes for as long as possible. So I've bought a battery lawnmower which she actually manages to use - apart from not being able to put the grass box back on - and at least she can't cut the cable. I've superglued the iron dial to "cool" so she can iron but not burn everything including herself and trained the dog to follow her whenever she decides to go for a walkabout. My next challenge is the showering - maybe the solution is a clothes peg on my nose.