Crisis point please advise

[netsy22]

I have just had a huge argument with my mother and I have ended up shouting because she absolutely refuses to have any help from cleaners or carers - she wants me to do it all. She refuses to socialise and won't go out without me.
I'm at the end of my tether. I am neglecting my husband and (adult dependent ) daughter. I can't go on holiday unless my cousin comes to stay and look after her. I know shouting is not the answer but I finally lost it.
I have switched off the phone because I can't bear to speak to her about it again. I don't know where to go from here.

 

[cobden28]

I wonder if your Mum is able to realise that you aren't able to look after her any more, so I wonder what she thinks is likely to happen then? Surely if she can't do things for herself and you are no longer able to then it's either a case of she has careers going in regularly or she goes into residential care?

How would your Mum feel about going into care, do you know?

 

[Philbo]

Hi Netsy22

I am relatively new to TP so was unaware of your circumstances but looking at some of your previous posts, I've sort of filled in some of the gaps (mine, not yours).

You've mentioned before that your cousin has been very helpful so I wonder if you could get together to hatch a cunning plan on how best to withdraw a bit from the burden of caring for your mum (and I mean that in the kindest sense)?

Not sure if you've got social workers involved already but the more organisation you can enlist to back up your efforts the better?

It is very difficult when the PWD does not accept or comprehend the impact of their condition on themselves and their families. So it may be worth considering perhaps telling your mum that due to an illness, other problem you'll not be able to help her for xxx (depends on how long you want to give it a go for)? Maybe arrange for someone else (cousin?) to keep a crafty eye on your mum during this time and see how she gets on?

Forgive me if you've been down this route before but I do know that a problem shared....?

Other, more experienced forum members will no doubt have more useful advice.

Best wishes.
Phil

 

[netsy22]

I wonder if your Mum is able to realise that you aren't able to look after her any more, so I wonder what she thinks is likely to happen then? Surely if she can't do things for herself and you are no longer able to then it's either a case of she has careers going in regularly or she goes into residential care?

How would your Mum feel about going into care, do you know?

I would love her to go into a care home. She would be fed regularly and may even get some social interaction. However, she blankly refuses to consider it. In her head she is still the same as she was 3-4 years ago, able to live a somewhat independent life with a little help. She truly believes that she still does some dusting and prepares herself meals - in reality she scavenges on bits of bread, biscuits and cake. She is incapable of washing a cup properly. The floor is splashed with tea spills and the bathroom has toothpaste splattered everywhere. If you ask her what she had for lunch her automatic reaction is - I had a sandwich when clearly she has not. If carers go in she tells them she has just had something or is not hungry or will have something later. They believe her. (She does hostessing really really well.) When I ask her what she had for dinner she says she microwaved a meal when there are none gone. I have tried to be diplomatic and/or devious but I am a Yorkshire lass and very blunt I can't do subtle.

 

[netsy22]

Hi Netsy22

I am relatively new to TP so was unaware of your circumstances but looking at some of your previous posts, I've sort of filled in some of the gaps (mine, not yours).

You've mentioned before that your cousin has been very helpful so I wonder if you could get together to hatch a cunning plan on how best to withdraw a bit from the burden of caring for your mum (and I mean that in the kindest sense)?

Not sure if you've got social workers involved already but the more organisation you can enlist to back up your efforts the better?

It is very difficult when the PWD does not accept or comprehend the impact of their condition on themselves and their families. So it may be worth considering perhaps telling your mum that due to an illness, other problem you'll not be able to help her for xxx (depends on how long you want to give it a go for)? Maybe arrange for someone else (cousin?) to keep a crafty eye on your mum during this time and see how she gets on?

Forgive me if you've been down this route before but I do know that a problem shared....?

Other, more experienced forum members will no doubt have more useful advice.

Best wishes.
Phil

My cousin lives 180 miles away! There is no point in SS as she is self funding. I tried getting carers in when I was away for a couple of days but they accepted her word when she said she did not need anything. Sorry, nothing seems to work.

 

[Rosettastone57]

Hi sadly this all sounds too familiar to me. My mother-in-law has mixed dementia which was diagnosed in 2015 however she has been a difficult demanding needy selfish person all her life and has put unnecessary demands on both my husband and myself over the years . We have no other family to help in this situation or certainly no other family who are even willing or prepared to take any responsibility.

You say you don't do subtle then I'm afraid it's time to be blunt and take control of the situation. You obviously realise that this situation cannot continue for your own sanity and for that of your family. Over the last 30 years my husband and I have slowly taken control with my mother-in-law and kept her at arm's length .We have developed coping
mechanisms and strategies to deal with her successfully. Now with a dementia diagnosis these strategies have come in even more useful.
These strategies always come unfortunately for my husband with a certain level of guilt however we have made quite clear over the years that we are not prepared to do everything for her. Due to her poor mobility we introduced carers for her before her dementia diagnosis. She has had difficulty in getting out of bed and laying in bed all day until about 3 o'clock we also found that she had been unable like your own mother to prepare her own meals successfully . On that basis we both decided that we would not help in this situation partly because both of us worked full time and we would not be able to devote all our spare time to mother-in-law. .We told her that we would be introducing carers whether she liked it or not. Of course she was extremely resistant, she was rude offensive , shouting , but in the end we stood firm and have continued to stay firm since the diagnosis three years ago. We did try getting her to a Day Centre but that didn't work out as there was always someone who apparently had upset her. She tried to use the refusal of the Day Centre to mean that she would no longer be able to have carers to cook her lunch and then she would do her lunch herself. We already had a plan in place being always one step ahead of her, to enforce the meals. So what we did once the day centre was out of action , I organised carers 7 days a week to come in and prepare her a lunch whether she liked it or not. We made it quite clear to the care agency in the care plan, that carers were to come in and place the meal in the microwave to heat up at lunchtime whether she liked it or not. If she didn't eat it then that's fine least your conscience is clear and the care plan has been carried out. Mother-in-law is also self funding so we were able to simply enforce this and pay for it. We also have power of attorney over health welfare and finances which made organising this type of thing a lot easier.
Like your mother , my mother in law has a complete lack of initiative. Sometimes the only way of dealing with this is to reinforce with the agency on a regular basis the type of situations they going to deal with . If she tells the carer she has eaten and doesn't want anything done then that's fine there's little more you can do at the time. The care agency then report back these situations to us and we can then reinforce with the next visit what needs doing the housework or what we think should be done for example preparing a sandwich for mother-in-law to eat later.
3 years on from starting the carers mother-in-law no longer has that level of resistance we recently introduced a further teatime visit to make sure she was ok in the evening whilst we went on holiday again this was initially met with a huge amount of resistance but as my husband made it quite clear that it would be happening whether she liked it or not.There was a lot of shouting from her about her expecting to cancel it whilst we were away . The agency would told quite clearly that only either myself or my husband will be able to cancel it , not on her
Say so. More and more she has come to accept that we control the situation totally that we're in charge and the decisions around her welfare are down to myself or my husband. It's now come to the point where she will tell people there's anything that needs sorting out has to come through her daughter in law.
The carer situation is now accepted by her as normal we don't regret taking those actions and making those decisions. It was the only way to stop is totally being sucked into her dementia life and taking over.

Personally I find trying to have a discussion about mother in laws welfare with her and trying to use logic is a complete waste of time. She will never accept her diagnosis and will never accept there's anything wrong with her.
To some this may sound harsh and in particular decisions around the carers may sound particularly blunt but we have no regrets about any of it.

 

[Lancashirelady]

My Mum was very like this, though she did have carers visiting 3 times a day. At least they got her to take her meds and got her dirty clothes in the washing machine while she was in the bathroom in the morning, though in 3 years they never got her in the shower!!!She would tell them she'd been out for lunch so didn't need any tea and when I left her a fridge full of ready meals for the weekend I'd arrive on Monday and find she'd eaten 2 packets of biscuits and not a lot else.

The crunch came after a) she went wandering and ended up in hospital with a UTI and b) the day she came home some toe rag conned her into letting him in the house and he pinched her purse. I was due to go abroad on holiday shortly afterwards; she must have been quite affected by what had happened though she didn't appear to remember anything about it as she was quite enthusiastic about going to a home for respite care while I was away. Once she was in the home that was it. 2 years later she still sometimes asks f I'm taking her home but she has no real idea of where home is. Things just eventually fell into place for us - I hope the same applies to you. Good luck!

 

[margherita]

We told her that we would be introducing carers whether she liked it or not.

So what we did once the day centre was out of action , I organised carers 7 days a week to come in and prepare her a lunch whether she liked it or not.

We made it quite clear to the care agency in the care plan, that carers were to come in and place the meal in the microwave to heat up at lunchtime whether she liked it or not.

we recently introduced a further teatime visit to make sure she was ok in the evening whilst we went on holiday again this was initially met with a huge amount of resistance but as my husband made it quite clear that it would be happening whether she liked it or not.


To some this may sound harsh and in particular decisions around the carers may sound particularly blunt but we have no regrets about any of it.

The key-words are " whether she liked it or not"
I completely agree.
How can you persuade a person who can't reason or use judgement?
What you say doesn't sound harsh to me , also because sometimes being blunt is the only choice left.

 

[Rosettastone57]

The key-words are " whether she liked it or not"
I completely agree.
How can you persuade a person who can't reason or use judgement?
What you say doesn't sound harsh to me , also because sometimes being blunt is the only choice left.

Thanks for the comments. I do think that sometimes the situation depends on the relationship between family and PWD. If the relationship is a good one then I think having to deal with the nastiness and stubbornness is a difficult situation to cope with all of a sudden. If however the relationship is poor as it always has been with my mother-in-law then we were used to the nastiness and extreme emotional abuse. My mother in Law's dementia diagnosis came as no surprise to us at all it was simply an extension of the behaviour we've been used to for a number of years. I have been able to form a detached view of the care that she needed so it was a lot easier for me to cope with in the first place.

Its not easy dealing with dementia and I don't propose for one minute to have all the answers . I enjoy reading this forum its given me a lot to think about and given me many ideas.

 

[Fullticket]

I absolutely agree about the 'whether she likes it or not.'
Mum had a fall the other day (fortunately nothing serious) but we ended up in A&E. While they were drawing bloods and, she thought, out of my hearing she voiced the complaint that when she was a little girl her aunty told her what to do, then her mother told her what to do, then her husband told her what to do and now her daughter tells her what to do AND SHE DOES NOT LIKE IT! Frankly, it has always been her telling everyone what to do - but that's another story.
I would say be assertive, get on with it and they can like it or lump it. WE know we have their best interests at heart but at the same time we have lives and loved ones of our own.
I try to find humour to deal with it but there are certainly times when, to avoid banging my own head against the wall, I would like to aim a kick at a certain part of her anatomy.

 

[Beads]

Thanks for the comments. I do think that sometimes the situation depends on the relationship between family and PWD. If the relationship is a good one then I think having to deal with the nastiness and stubbornness is a difficult situation to cope with all of a sudden. If however the relationship is poor as it always has been with my mother-in-law then we were used to the nastiness and extreme emotional abuse. My mother in Law's dementia diagnosis came as no surprise to us at all it was simply an extension of the behaviour we've been used to for a number of years. I have been able to form a detached view of the care that she needed so it was a lot easier for me to cope with in the first place.

Its not easy dealing with dementia and I don't propose for one minute to have all the answers . I enjoy reading this forum its given me a lot to think about and given me many ideas.

Hi Rosettastone57, I agree with all you have written only in my case it is OH,I only wish I could be more assertive..I have been married a long time & most of this has been emotional abuse & controlling. Now I'm his carer & not a happy one at that,because as you have said this is just an extension of the behaviour I have been used too over the years. Plus now memory loss & mobility not good. This has left me very resentful, but as I read on this forum there are so many in this situation. I am trying to get into the mindset of just saying it as it is am sick of walking on eggshells. OH is in denial. ...

 

[netsy22]

I will do it whether she likes it or not!

Thank you thank you thank you for all these supportive replies. My brother also says just do it. I do have LPA for health and finance so that should help. Although mum is saying she is grateful for all I do, she is manipulative. She has never done much for me in my adult life and when she was my age she was going out several times a week and had multiple holidays a year! So I don't feel I owe her anything.

 

[Oh Knickers]

Netsy,

Sorry to hear it has come to this. Dealing with a PWD is like living with a vampire sucking the life out of you. It does sound as though it has got too much.

If you feel it has got too much you have got to the stage of carer breakdown. This is then the stage to start the walz with the SS (Social Services). Contact the SS on the County Council Adult at risk line. It is not what the PWD wants - it is what the PWD needs- is important to remember. Organisation that can give you guidance are:

(Scroll down the page and put in your postcode and the local number will come up.)

Alzheimer's Society
www.alzheimers.org.uk

Age UK
http://www.ageuk.org.uk/

I have found both pools of sanity and fonts of knowledge. Really good place to offload. And, please, offload. It does sound as though you have crossed the Rubicon with mum. You have not done wrong, it has just got too much. Write down a brief diary to give then an idea of what has been going on. It will give an indication of the stress you have been working under.

Please update us here on what is going on.

 

[Amy in the US]

Netsy, some great advice and suggestions above and I echo everyone else in that you should just get on with it, and do your best to keep that Guilt Monster at bay. Do you need the special TP pointy stick, to poke it in the eye with? Someone here will pass it to you!

My mother was not like some I've read about here on TP (no child abuse), but was also not exactly the world's best mum, and we were never close. I'm an only child and have power of attorney, and now I am in charge and responsible for her, whether I like it or not (and I don't like it one bit). She was unpleasant to me at times, as an adult, and she was certainly difficult, challenging, and frustrating. To be honest, I mostly avoided her, until she started to have problems with what I now know, was the early stages of her dementia.

I struggled at lot with her increasing needs and the demands on my time and energy and emotions. I had a lot of unhappiness and upset and resentment--she was never there for me, she didn't take good care of me, so why should I have to do this?

I will be honest and say a lot of those issues for me, are probably still unresolved. I spent a lot of time with a therapist trying to work through things and it helped. What worked for me was to think about it from the standpoint of, what do I have to do, to be able to live with myself? What do I need to do, so that at the end of the day, I can look myself in the mirror and be okay with what I've done? That's mostly how I approach things.

My mother is now in a care home near where I live, and I don't visit as often as I might, or stay for long visits (she can mostly no longer manage longer visits so that's probably a moot point), or do a lot of the things that I know "other people" with relatives in a care home do with/for their PWD. Our lack of a past relationship means some of those things aren't practical or desirable. But I do care about her, and I do want her to get good care, and I do what I think, needs to be done. I make sure she is safe, getting the care she needs, and I manage all her finances and paperwork and so on, to the best of my ability. It's all I can do. (Some days I am able to be more detached and get on with things; other days the paperwork reduces me to tears. Nothing about dementia is easy.)

At the end of the day I answer only to my own conscience, and if possible, perhaps you can find a way to look at the situation like that.

You are important. Your relationships with your husband and daughter are important, and they are important. You have a right to your own life and those other relationships. Dementia will absorb all the time and energy we throw it, and then ask for more. Don't give it everything!

Sorry for all the rambling, but hope something in there is helpful. We are here to support you. Sending all possible best wishes.

 

[Fullticket]

Amy in the US - it's so true for me as well. That is probably why I treat what I do as a 'job' - it's the only way to tackle it as far as I am concerned. I got sucked in because, although mum had never had much time for me, I was the only family member concerned enough to sort out her ailing finances and do something about the clearly awful state she had got into. Prior to me getting involved I was adamant that I would walk away from anything like looking after her as she had, frankly, never really looked after me.
Then it is all change and you can't walk away from it if you want to live with yourself.
Someone, cruelly, said that I just wanted to be a 'saint' and have everyone admire me. They have never had to look after a PWD so I ignored them but I did examine my motives and as far as I am aware no-one admires me (I am sure some do but not for dementia care, if you get my drift)
I think I am squeaky clean on that score but as we go down the dementia road I do ask myself how much longer?