Caring out of duty?

[JustMandy]

I'd appreciate some advice.

After a couple of years of doing our best to help get the right care for our mum, I think the time may have come to stand back.

Mum's 61 and was diagnosed with "something presenting like Alzheimer's" around a year ago. We'd realised that there was something wrong a couple of years before that after some fairly strange behaviour from my mum, but looking back I think the problems may have started around 5-6 years ago.

For the last couple of years we've done all we can to help, sorting her out with accommodation, sorting out her financial affairs so that she was no longer in debt, attending all meetings with doctors, social workers, home care, etc.

The biggest problem is that my mum has had psychiatric problems all her life, and has always been a very difficult person to be involved with. Friends never stuck around and family were the only people who would stick around. Although in a practical sense we may have appeared on the outside to be a "close" family it was more about minimising the risk of another furious outburst from mum, fear if you like. Over the years she's done horrendous things to her "nearest and dearest" but we've always been the ones to back down and apologise. She's been diagnosed as having various personality disorders and for a significant period of time she was as close to being an alcoholic as to make no difference.

She's currently in the local psychiatric hospital and has been there since February. She's on Aricept now and awaiting funding for a place at a care home. We arranged to get a enduring power of attourney set up a few months ago to enable us to act for mum when needed.

Now, whether it's out of frustration at being trapped at the hospital, or just mum's difficult nature, she's apparently cancelled the EPA and no longer wants us involved in her affairs. We've been doing our best for her, admittedly out of a sense of duty, rather than love (I think) for a long time. Once she was settled we may well have stood back a bit and left the majority of her care to someone else, but right now it feels like another kick in the teeth.

I've had yet another stroppy letter from mum, implying that we’re meddling, that she's quite capable of managing her own affairs (unfortunately the hospital staff seem content not to explain to mum her condition and the difficulties it causes her) and that she's cancelled the EPA.

I know I haven't visited mum as often as I should have, but as well as finding it difficult emotionally, it's also difficult practically - my work situation has been absolutely daft for the last few months and I'm often working very long hours. I have two children still at home, a partner who finally moved in in January and I barely get time for the three of them as it is... as for time for me......

We were in the process of trying to clear mum's flat having terminated the tenancy to save her money but now I'm inclined to let social services assist mum with all that. I've no longer got the drive to "do the best I can for mum" but I'm sure I'll regret it if I stand back and limit the contact and involvement.

Has anyone else here been involved with caring for someone that they really don't love?? Will I regret it more if I stand back than if I try and persuade mum to let us take care of her affairs??

Mandy

 

[Chris]

Counselling???

Mandy - I really feel for you - have you thought of talking to a counsellor - sometimes there are counsellors who have a special interest in dementia or mental health - in the Bristol area - Dementia Care Trust run such a service.

Counselling can be very helpful at times when you need to make decisions - beign able to talk freely in a totally non judgemental and confidential environment is very enabling - having someone to talk to and listen without thier own emotions or opinions clouding the issues for you is wonderful! - it frees up your own thoughts and ability to make decisions somehow.

Writing things down also does this - sometimes reading the messages on this forum - the answers lie there in the question.

Not sure if this is helpful. You've come such a long way - done so much , whatever happens now. I get angry at the cosy photos sometimes published of people with dementia & their carers - it is not always like this & if you see enough of them it can create even more guilt in some of us. Often dementia is not the only health problem someone is dealing with.

Hope your family find a way forward soon. Take care.

 

[Brucie]

Hi Mandy

not much I can say to help, but...

remember your Mum is your Mum, and is the only one you will have. Once she has gone, you don't want to be plagued by regrets that you didn't do enough.

So, you need to take things slowly at present.

Dementia is bad enough on its own, without there being other health problems of any sort. Her being difficult in the past, and now, have not been her choice.

That being said, it doesn't make things any easier for you!

So, just do your best to evaluate whether you feel you can provide any useful help. If you come to the view that you can't - then accept that and act accordingly. You may find that, as the dementia progresses, you will wish to change your view - your Mum may become less difficult. She may get worse of course!

Keep options open, but you need to protect yourself and your family as well. When you make whatever decision you make about her care and your involvement, don't beat yourself up about it afterwards.

Chris - regarding the 'cosy' photos..... I too find they are at odds with my experience, and I do wish we could publish ones that are more representative. However, both patients and new carers read articles where photos are used, and in fairness to the patients, we want to minimise as far as possible things that will cause them added fear. For carers, it is probably best for the reality to dawn slowly, otherwise I think we would all have just run as far away as possible. With a slow awakening, many of us have found that we can provide levels of care we would never have believed. And we're all of us the better for that, if only untimately.

 

[JustAndy]

Hi guys, I've not been about for a while but Mandy mentioned she'd posted so I thought I'd poke my nose through the door again.

For those that don't know I'm Mandy's brother. Mandy's said it all here already really but here's my take on it...

The problem were having in dealing with Mum now is that she has always been difficult, aggressive, emotionally volatile, paranoid, abusive etc. and she's always become very oppositional if she feels she or her behaviour is being challenged or criticised in any way.

Mum has some very obvious dementia symptoms, behaviours you can spot and say "that's the dementia" but a lot of the way she treats us now (aggression, suspicion) is the same as it's always been. We don't have the comfort of looking at the way she's treating us at the moment and putting it all down to the dementia.

Mum will not accept there is anything wrong with her, even when we handle the topic really gently and non-judgementally. This is the most frustrating thing really as at least if there was some shared understanding of what was going on perhaps she would appreciate more what we're doing for her in terms of housing etc. behind the scenes.

Mandy isn't in counselling but I am and whilst it has made me more aware of some of my feelings on the matter and how they are steering me it hasn't helped me decide the best way to handle the situation. Mums behaviour in the past meant I was packed off to boarding school for 8 years aged 8 (social services wanted to take me into care but a "compromise" was reached). A part me still wants to do the right thing by mum regardless, wants to put up with all the accusations and insults and heartache because that would be the right thing to do. But another part, an increasingly vocal part of me, says stuff it... I've done my time, she doesn't want me to help, I don't want to help, let the authorities pick up the slack that they didn't before.

....hmm that last sentence reads pretty harsh, but I'm going to leave it in, it's how I feel.

It's hard to get across in a couple of paragraphs here what living with my mum was like and all the things she did to us kids and my dad, that's not an excuse or anything it just might help you to understand where Mandy and I are coming from, and why doing the right thing now isn't necessarily the intuitive thing to do.

 

[JustMandy]

Chris, many thanks for your post - it was much appreciated. I've "done" counselling in the past, more directly to do with another social problem, but it did rather turn into counselling about my mum and my childhood... doesn't it always?? Unfortuantely time is such an issue at the moment that I'm unlikely to be able to get into counselling again, but I'll bear it in mind.

Bruce, I also appreciated your comments, although I realised that I hadn't really made the situation very clear. Yes, mum's been ill at times over the years, and she's always had my sympathy for that, but it doesn't actually change the fact that she's not really a very nice person. I feel terribly sorry that anyone should be going through what she's going through, especially at such a young age - but her personality makes it virtually impossible to give her the support that I feel she needs.

Andy... what can I say. {{{{{{hug}}}}}} Talk to you soon. xx

Mandy

 

[Brucie]

Hi Mandy and Andy

I'm so glad I always try to put in a caveat as I did above "If you come to the view that you can't [help] - then accept that and act accordingly. "

There are some situations where things are yet more complex than normal [if 'normal' exists in the context of dementia], and where there is a history involved.

There are times when we should let the authorities handle it. Sounds like this is one.

Best of luck.

 

[Sheila]

Hi Mandy and Andy, it is shining through in what you say, you obviously care for your mum very much or you wouldn't take the time to find out how to help like this. It is the situation you are in that frustrates and causes the anguish and doubts you are having. Like Brucie I think you should let the authorities deal with things, at least at this stage when your mum is being so adamant that you feel you are banging your head on the wall (I speak from experience here) take a step back, let things sort themselves for a while, she is in a place of safety so you can and should take time out. Later, you will have the opportunity to show her you are there for her still. Right now, she is not hearing you and all and it is doing is making a tough situation even harder for you.
Thinking of you, She.XX

 

[gemini]

Hi Mandy

I've just read your posting and felt I had to reply as I can relate to so much of what both you and Andy have said. I originally posted a new thread last year about how hard I was finding caring for my mum in law that I don't love. What I didn't mention then was that my husband (I know) and his siblings (I suspect - given their attitude) have no love for her either. On the surface I know that sounds like a really awful and sad thing to admit.... but in reality, it's simply the conclusion of their upbringing. When will folks realise that not everyone is brought up in an environment like 'The Waltons'. The fact that she now has AD (early stages) doesn't suddenly change how they feel about her. It simply makes it harder to admit without feeling guilty.

It's transparently clear, that despite everything, both you and Andy have always done the best for your mum...

Duty is a very heavy cross to bear.... Only you can decide if the weight is worth the sacrifice you may be making for the sake of your own children and partner. You are entitled to a life of your own...

Best Regards
Gemini

 

[storm]

Hi all,MANDY andANDY,i think if you read through your posts again you have already answerd your question,if you stand back and let others take over thats fine i think its wrong to care for someone just through a sense of duty, but saying that i care full time for my mum in law which is something i said i would never do . we have never got along but i have looked after her for 15yrs while she lived in her own home and she was often quite horrid, but then slowly she developed A/D and she seemed to be come a nicer person. She now lives with us and my feelings towards her have very much changed and do you know something i am glad we have had this time together.Probably im lucky in that i lost the woman i didnt like to A/D and gained one i love. Hope things work for you . storm