Where/how do I find some empathy?

[GillU]

My dementing Mum (84) is really getting to me. I know I should feel/act more sympathetically than I do but I actually resent her and her constant demands and the way she speaks to me. Suddenly I am totally responsible for her and she orders me around (I'm 58 for god's sake) and wants to know my every move and whereabouts and I am ready to walk away. She's always been awkward (she fell out with both my brothers, who would be more than willing to help if she'd let them) over 25 years ago, long before dementia provided her with an excuse to be rude and judgemental.

Have had to go back again tonight (every night so far this week) having only left an hour before, because she couldn't get her tablets out of her dispenser. When I got there, all I did was turn it upside down and they came out. Last night she couldn't find either pair of her glasses - there they were, both side by side on her dressing table. I could go on but am asking myself when enough is enough? Am trying so hard to keep her in her own home (which is where she says she wants to be) but (selfishly) my life is rubbish. I actually feel so guilty saying that because I know she can't help it, but when do you throw the towel in? Should I even be reacting to her every demand? It wouldn't feel so bad if she was more pleasant but all she does is criticize everything I do and it's never enough.

Where do you all find the empathy that I can see in your posts? I actually don't like my mum at the moment and am finding it very difficult to not show my irritation at her.

Have just read this back and it sounds awful but am going to post it anyway because I don't know where to go next

 

[fizzie]

My dementing Mum (84) is really getting to me. I know I should feel/act more sympathetically than I do but I actually resent her and her constant demands and the way she speaks to me. Suddenly I am totally responsible for her and she orders me around (I'm 58 for god's sake) and wants to know my every move and whereabouts and I am ready to walk away. She's always been awkward (she fell out with both my brothers, who would be more than willing to help if she'd let them) over 25 years ago, long before dementia provided her with an excuse to be rude and judgemental.

Have had to go back again tonight (every night so far this week) having only left an hour before, because she couldn't get her tablets out of her dispenser. When I got there, all I did was turn it upside down and they came out. Last night she couldn't find either pair of her glasses - there they were, both side by side on her dressing table. I could go on but am asking myself when enough is enough? Am trying so hard to keep her in her own home (which is where she says she wants to be) but (selfishly) my life is rubbish. I actually feel so guilty saying that because I know she can't help it, but when do you throw the towel in? Should I even be reacting to her every demand? It wouldn't feel so bad if she was more pleasant but all she does is criticize everything I do and it's never enough.

Where do you all find the empathy that I can see in your posts? I actually don't like my mum at the moment and am finding it very difficult to not show my irritation at her.

Have just read this back and it sounds awful but am going to post it anyway because I don't know where to go next

oh i am so sorry that you are feeling so bad. It must be very hard for you.
Can I suggest that as well as this forum you go to your local carers cafe - you will find friendly faces who understand where you are coming from without long explanations, a cup of coffee and perhaps some cake but most of all a LOT of local info that you won't find anywhere else - most of it unprintable lol

I am wondering if your mum goes to a lunch club or day centre - that is sometimes a good idea at this stage and perhaps slowly to introduce a carer (you may find info on this at your local carers cafe). You could perhaps think about sheltered housing with extra care - or flexicare - which means people have their own flat but with a care team on site 24/7 who will do as much or as little as required. Some of them have their own lunch clubs.

While you are at the carers cafe you will get info about homes too, perhaps she isn't ready for that yet but at least you will have an idea of good and bad and excellent and you can start to make a Plan B which will probably make you feel that at least you have a safety net.

This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

Do have a look at it
http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf


This might be difficult when I understand that you are fighting for survival right there at the moment - but your Mum is probably very scared, the world of memory loss is a very frightening place or can be, and that sometimes manifests as agression as does someone fighting for survival which she is also doing xxx

Take care and keep posting, we are all here to support you xx

 

[Pinkys]

I have felt this myself, with difficult MiL. And my husband has been very distressed by his complete lack of empathy. After reflection, I have come to think that you do not have to love, or even like the PWD. You can 'act out' love, by making the best and kindest decisions for their care, but you do not have to feel it. And it is the hardest thing, giving up the hope of a good parent/child relationship, accepting you ain't gonna get approval from your parent and cracking on with being their parent in effect. Hard hard hard.

People who are able to genuinely feel compassion and love for the person they care for may have had a better relationship in the past, perhaps. I recently spent time with a man with advanced Altzheimers and the love his wife still felt for him radiated out. My MiL was always a demanding and selfish woman. Hard to love at the best of times. I found it useful to imagine her fear and confusion. It sounds like your mother panics at the slightest thing, understandably, and calls on you. Her situation is pitiable, but you a)can't fix it and b) are not responsible for her illness or her isolation from other family members.

So don't beat yourself up. Do start planning for change in the situation. It will not get better, and you cannot live like this indefinitely. If she wants to stay at home, she needs help, and not just from you. And there may well come a time when what she wants is not sustainable and things have to be put in place, acting from compassion, even if it is not felt. You need help, advice about options and practicalities like money and local services. This forum is v useful but you could find a lot of help local to you, starting with Social Services who can point you towards what is out there.

Best of luck. It's a rubbish situation for all parties!

 

[marionq]

At my husbands day centre today I chatted with an elderly lady who was very lucid but clearly admitted she didn't know how she had got there, how often she came, if she had been attending long etc but she was quite sure that she recognised my husband and that she was glad to be out of the house.

Your mother is making a nuisance of herself because she can no longer judge what is reasonable behaviour. Like the old lady I spoke to she needs company and something else to think about. Speak to SS about a couple of days at day care to get her used to other people and start looking at care homes with good activity programmes so that you have one in mind when it all goes pear shaped.

 

[JohnBG]

Who they are now.

My own mother has become demanding to that I only visit once a day nothing is that important that it requires a second time visit. To some extent the more we do will never be sufficient I have a life also. One of her traits is to tell people not to park outside her house, the more people comply the more she thinks that view is correct.

Blister packs are useful although those can be a challenge at times. I do separate her illness as some of these traits requests or even strange comments are not things she might have said previously.

All those emotions we feel are normal as a constant carer, if things are not working for you change them if possible, adapt or address specific areas one at a time. Remember you are doing a good job .

Good luck take care.

John.

 

[MollyD]

Oh, but give yourself some credit. You've been hanging in with your mum (returning each evening to boot). It's hard. It just is. I had a good relationship with my mum before her dementia and I have to love thru' action a great deal now because some of her behaviours are so taxing.

I'm so glad you posted, allowing yourself all your feelings on this lonely road is a positive thing.

I've nothing to contribute other than support and to give you a virtual hug (and glass of vino). There are some great contributions in the posts above.

Mind yourself in any way you can at all. ♡

 

[GillU]

Thank you!

Many thanks for your responses, am on glass No 3 already MollyD !! There's a lot of constructive advice on here and have found a memory café locally next Tues (didn't even know they existed!) so will pop along and see what I can find out. Maybe when I get up tomorrow it will all be better and can start the day with a fresh sheet (as long as Mum doesn't ring me up at 5.40am to tell me she hasn't got any washing up liquid)

Thanks again x

 

[fizzie]

Many thanks for your responses, am on glass No 3 already MollyD !! There's a lot of constructive advice on here and have found a memory café locally next Tues (didn't even know they existed!) so will pop along and see what I can find out. Maybe when I get up tomorrow it will all be better and can start the day with a fresh sheet (as long as Mum doesn't ring me up at 5.40am to tell me she hasn't got any washing up liquid)

Thanks again x

That is great news, I really hope you find the memory cafe useful - there are two types of cafe - some memory cafes are for both the carer and the cared for and other (just called carers cafes) are just for you. In our area Crossroads run them. Both have great advantages and you will probably have both in your area so worth looking for all of them and trying different ones. It is also worth looking for your local carers organisation - Carers in Hertfordshire for example , ours offer aromatherapy sessions, courses on the practical things, and a discount card

You might also have singing for the brain in your area which you can do with your mum and lots of people find it a really positive thing to do together and a lot of fun.

Is your mum receiving attendance allowance? It is non means tested and she should be getting it and they are going to stop it soon so if not then give Age UK a ring on 0800 169 2081 the forms are tricky and it is useful to have someone help you do them, they have trained volunteers who will come round and help you do them xx

 

[Otiruz]

Hello GillU

As you can see you are among friends. We are united in our feelings of frustration, guilt, and yes downright resentment at the way dementia (but not the person) treats it's nearest and dearest, the ones who actually do care, do keep picking up the pieces, do keep loving even when everything is strained to its' absolute breaking point. We are the silent ones who just keep keeping on. There will come a point when you decide your mum needs more help than you can provide or your own health is compromised or something will necessitate a change - it happens to nearly all of us. Until then you are doing the very best you can with a disease that takes no prisoners. Your mum, my mum and thousands of other mums with this disease are confused, frightened, frustrated, angry and a lot more besides. No one seems to sit down with a carer to explain what can happen to the sufferer and no two journeys are the same BUT the emotions for us carers are typical to all of us. Just knowing you are not alone and that there is support and friendship on TP is a great help.

 

[GillU]

Attendance allowance

That is great news, I really hope you find the memory cafe useful - there are two types of cafe - some memory cafes are for both the carer and the cared for and other (just called carers cafes) are just for you. In our area Crossroads run them. Both have great advantages and you will probably have both in your area so worth looking for all of them and trying different ones. It is also worth looking for your local carers organisation - Carers in Hertfordshire for example , ours offer aromatherapy sessions, courses on the practical things, and a discount card

You might also have singing for the brain in your area which you can do with your mum and lots of people find it a really positive thing to do together and a lot of fun.

Is your mum receiving attendance allowance? It is non means tested and she should be getting it and they are going to stop it soon so if not then give Age UK a ring on 0800 169 2081 the forms are tricky and it is useful to have someone help you do them, they have trained volunteers who will come round and help you do them xx

Did this just yesterday via Age UK and the forms are on the way, they will be coming out to help us complete them within the next few weeks. Didn't realise they were stopping it soon!

 

[jknight]

Did this just yesterday via Age UK and the forms are on the way, they will be coming out to help us complete them within the next few weeks. Didn't realise they were stopping it soon!

Can anyone advise when the cut off point is?

 

[WORRIER123]

Hi Gillu
You aren't alone I feel the same and so bad for feeling that way and I live with Dad so no escape
He is not mobile anymore due to bad back pain and wants to know my every move and why I can't do more for him
I work and no longer am able to socialise after work. I have had to request amended hours so I am home at a reasonable time. I work from home one day a week as I feel bad being out all day. Dad has carers come in.
I feel like a prisoner and yes resent is what I feel too. My 4 holidays a year, nights out, weekends away have stopped.
Part of me blames myself as I think I have built a rod for my own back doing more than I should.
Sending another vino your way X

 

[GillU]

You're an angel!

Hi Gillu
You aren't alone I feel the same and so bad for feeling that way and I live with Dad so no escape
He is not mobile anymore due to bad back pain and wants to know my every move and why I can't do more for him
I work and no longer am able to socialise after work. I have had to request amended hours so I am home at a reasonable time. I work from home one day a week as I feel bad being out all day. Dad has carers come in.
I feel like a prisoner and yes resent is what I feel too. My 4 holidays a year, nights out, weekends away have stopped.
Part of me blames myself as I think I have built a rod for my own back doing more than I should.
Sending another vino your way X

Goodness me your predicament makes me feel so humble! I don't think I could live with my mum and remain sane. What a shame the pleasurable bits of your life have had to stop. I still go away regularly but get severely 'punished' before I go and when I come back, and there is ALWAYS a 'crisis' every time I'm away, usually self-inflicted. This disease is so hard for everyone, patients and carers alike.

Cheers for the wine, here's one back at you! Sometimes I think it's the only thing that keeps me going! (Oh, and gin!) x

 

[cragmaid]

I once wrote that hated my Mum...I carried on caring for her and the feeling lessened....but at that particular time I hated her.
As far as I am aware, there is no cut off date for At. All. defined yet.....but I may be wrong.
According to one website I read( I googled Due Date of At. All Abolished) it reads:

Created: Friday, 08 January 2016 11:23

The Conservative government is about to launch a consultation on abolishing attendance allowance for all new claims and giving the money saved to local authorities instead.

The news was quietly released before Christmas in the Local Government Finance Settlement which explained that:

“The Government will also consider giving more responsibility to councils in England, and to Wales, to support older people with care needs – including people who, under the current system, would be supported through Attendance Allowance. This will protect existing claimants, so there will be no cash losers, and new responsibilities will be matched by the transfer of equivalent spending power. The Government is planning to consult in the New Year on this proposal, including on the right model of devolution and the level of flexibility that councils would need in order to effectively deliver this additional responsibility

It is only a consideration at present and any expected change is unlikely to happen before 2017......so they say!

 

[jknight]

I once wrote that hated my Mum...I carried on caring for her and the feeling lessened....but at that particular time I hated her.
As far as I am aware, there is no cut off date for At. All. defined yet.....but I may be wrong.
According to one website I read( I googled Due Date of At. All Abolished) it reads:

It is only a consideration at present and any expected change is unlikely to happen before 2017......so they say!

Thanks, Maureen x

 

[Amy in the US]

Hi, GillU, and sorry to hear things are so challenging for you. I think if you are feeling constantly tired, frustrated, and irritated, that you are having an understandable reaction to the demands of the situation.

I will leave it to the local (UK) experts to advise you about specifics, but I think it sounds like it is time for some sort of change in the situation with your mother. Whether that is someone else providing some or all of her care, help with domestic issues, day care, more support for you, some of all of the above, I'm not sure, but I hope you will find a local support group/carer's cafe and see what the options might be.

As regards the empathy and being a caregiver for a difficult person, please do not feel badly about what you perceive as your lack of empathy. While you may not feel warm and fuzzy towards your mother, you are clearly seeing to it that she is cared for. That is a great deal more than a lot of people would do, so give yourself some credit for that.

I am the caregiver for my mother; not hands-on, as she is now living in a care home, but I have PoA and take care of things. Before the care home, I assisted her as much as I was able/permitted to. I am lucky to have a supportive and helpful husband. I will be honest: I hate this job. I have never liked my mother; she was not likeable even before dementia and we were never close. While not abusive, she wasn't a great mother. I do things for her out of a sense of duty, not affection. At the end of the day, I make the choices I have to make, in order to be able to sleep at night and live with myself. I hate that she has dementia and I don't want her to suffer, ever, in any way, but I am not motivated to care for her out of a sense of love or warmth or for the sake of our previous relationship (because there wasn't one!). I do it because I feel I must. I'm an only child, as is my mother, my parents divorced when I was young (and my father is dead), and there isn't anyone else to do this. So here I am.

So please don't tell yourself that you should feel more sympathetic, because if you don't, you don't. I do hope you are able to find support for yourself and a way forward so that your mother has the care she needs but you are able to live your life as well.

I'm sorry it is so difficult and best wishes to you.