Its still so hard ... frustration is setting in

[kingmidas1962]

Mum (85) as many of you will know is recovering (???) from carer breakdown after caring for dad (86, Picks disease) for many years.

I continue to, struggle with having become her carer - after her breakdown steering her through the psychiatric system and out of the other side, through temporary placement in a ghastly care home to her assisted living flat which is lovely (but not to her)

She is lonely - of course she is. She misses her husband - I miss my dad. Everything has changed - I know that too.

The sheer frustration I feel though is down to the fact that everything which has been done which could potentially help her is refused / cancelled / curtailed or turned away in some form or another. Not in an obvious way though - she does it almost secretly and makes her excuses along the way as to why she doesn't want/need it.

For example(s)
Visits from the Community Psychiatric Team to find her some activities to help with the loneliness

Not her cup of tea / the wrong time of day / too loud / doesn't like the people. She went once to a social club.​

Sessions with (lovely) psychologist to help her talk about her problems - to try to come to terms with things

Cancelled after two and a half sessions. 'They ask me too many questions and it gets on my nerves. How can what happened in my past have anything to do with how I feel now?' ... and yet she bottles everything up and tells me. I can't cope with it - I've been having counselling myself since APRIL!​

Activities within her housing complex

Again - not her thing, too late, too early - wrong people etc etc​

Calling a helpline when she feels lonely and wants a chat

They don't know her / they're not family / they're only on the end of the phone and not there​

I could scream (and I do)

I know ALL these things are out of my control.

I know that SHE has to make an effort towards her own recovery.​

I know I cannot do it for her​

It doesn't remove the frustration ....

I sat today and watched her cry - I felt nothing but more frustration ... and this made me feel even worse.

I have managed to peel off two weekdays for myself when I do not see her as I have to work - I am working up to one weekend day to spend time with my family but every time I mention it she cries, or asks if whatever I am doing can she come along too - or I get 20 questions about what I am actually doing and why cant I fit in a visit to her - so much so that I begin to question it myself.

It feels like the only way this will end is when she dies and it also sounds awful saying (or rather writing) THAT out loud.

*sigh*

Had a rough day

 

[angelface]

Sounds as though you are having an awful time Kingmidas.

Your mum sounds rather like my mum used to be. Mum did not have dementia, but she was very ill for a long time. Nothing I could do or say was right, or of any help. After she died, I was in a very bad state, which I would like you to avoid.

Your mum is not going to change. Is your counselor working with you on your boundaries about what you will accept from mum? One of the things I did was to go to a drama therapy group, where we acted out what we needed to say and do. I could not even role play what I needed to do with my mother, so the group did it for me, and showed me what to do.

It gave me the strength to actually get through to my mother that I could no longer go on caring for her, (even though I was not a live in carer, it had got too much).

Sending you lots of support.

G

 

[kingmidas1962]

The counselling has been incredibly helpful and it's only with the support of my counsellor that I've felt able to start to step back and reclaim those precious days for myself. Without her I think I'd still be seeing mum every day.

I feel I still have so far to go though and sometimes that I'm not up to the journey! I think I'd find role playing very helpful as I do struggle to find the words to say.

 

[CollegeGirl]

Thinking of you KingM. You can't do any more. Don't lose sight of the fact that you need time for yourself, and for your family. That is non-negotiable. You are still a huge support to your mum so you are not letting her down in any way, so don't worry about that aspect.

xx

 

[kingmidas1962]

Thinking of you KingM. You can't do any more. Don't lose sight of the fact that you need time for yourself, and for your family. That is non-negotiable. You are still a huge support to your mum so you are not letting her down in any way, so don't worry about that aspect.

xx

That's an angle I should approach it from more often really - and in comparison to a lot of the residents in her complex she does get a lot of company i.e. me ...

When she was so upset yesterday she kept asking why she can't be happy like all the other residents who always seem cheerful. I pointed out that she is very good at putting on a happy face (for everyone else but me) and they probably think the same about her....

I've also toyed with the idea of a paid carer to take her out one day a week but she'll no doubt find some obstacle to that, too. It's so tiring.

 

[LYN T]

Hi

You really have to set boundaries and stick to them KM or your health will go downhill even further. I know it's difficult but your family need you. (I know you know this already-but I'm hoping if enough people tell you it may help)

Age UK do a befrienders scheme where volunteers visit once a week or so. My Husband did this before he was ill and used to visit a couple in a CH. They were ex teachers and Pete used to read them poetry as their sight was impaired. Sometimes he used to take them to a cafe for afternoon tea.

Take care

Lyn T

 

[kingmidas1962]

Mum is so awkward - there are so few things she will even entertain. She hates being in her flat so won't accept a befriender because it means she has to stay in ... but anything else we've found which takes her out of the flat doesn't suit her either. She says she's lonely so I just don't get it sometimes. She even describes herself as difficult to please so I don't know what she expects!

Reading between the lines I actually think she was quite 'spoilt' by my lovely placid dad who went along with anything, and now she isn't finding everything going her way and she's having to accept things she doesn't like it makes it even harder.

 

[Grannie G]

Hello KM

There are lots of lonely people in the world.

It sounds hard but your mum doesn`t appreciate what she has. Her loneliness means she only wants to be with you and that is an impossibility if you are to have any life of your own. And I don`t count `working days` as time to yourself.

Somehow she will need to understand there is such a thing as compromise and nothing will improve unless she is prepared to try to make life better for herself.

If she did, it might help and she would start to feel good about herself again. The loneliness will be there. It is there for all of us who have been in long term partnerships and even for those who haven`t. We just have to learn to live with it.

 

[starryuk]

My goodness KM,
I have a friend in a very similar position with her mum. It is 'driving her crazy' too. So frustrating.

As you say, happy face for everyone else, miserable and 'guilt tripping' my friend.

While I can understand your mum's pain at her loss, I think you have to keep telling yourself you cannot be responsible for someone else's happiness. You can keep giving your mum opportunities, but if she won't/can't take them up it's not your fault. That sounds hard, doesn't it, but you must step back. Your mum needs to understand that she can't rely on you to keep her happy 24/7.

Hope I am not offending you saying this, but it so frustrating seeing my friend wracked with worry and guilt and it makes me cross. As your counsellor says, set boundaries.

xx

 

[kingmidas1962]

Sometimes I wonder if she would 'listen' and understand better if I wrote my feelings down. When she's upset and I try to reason with her she either doesn't/won't/can't listen or hear my point of view ...

I know I need to carry on stepping back - she doesn't (or won't) see how much I do for her ...

 

[starryuk]

How often would you like to visit your mum if this problem didn't exist? Perhaps you could set that as a target in your mind and work towards it?

I am sure your mum does know how much you do for her, it is just that she expects it. Somehow she thinks you will take the place of your dad.

As soon as I retired my mum wanted me to give up my life and family here and go and live with her in Australia!!! Thank goodness I would not have got a visa, so Mum couldn't argue with that! (things moved on and she is back here in a CH now.)

From what I can make out, in these situations people cannot see things from another point of view. I don't think you will ever be able to reason with your mum so you will simply have to tell her what is happening. (Easy to say when it's not your own mum!)

 

[Jaycee23]

Hi, Reading your post I can understand exactly where you are coming from with your mum refusing all help. My mum was just the same and all suggestions/options for Day Centre, Befrienders, Activity Days, Days to the seaside with us (which as soon as we got there she was ready to go home!). She would look in front of her in a trance and not take in what was around her. The only time she seemed to talk was to to tell us about her misery and loneliness (lost dad to cancer two years ago). People would tell us to try this and that but as you are aware, it just doesn't work. We heard all the time, they are not family, they are strangers etc. She wanted me 24 hours a day and wanted me to sleep at her house in between the accusations to my siblings that I was spending all her money and various other things (all paranioa beleived by siblings). I think you may be right about your mum used to having her own way. My mum ALWAYS did what she wanted to do and if she did not get her own way would sulk for days and as a child I got used to pandering to her to try and get her in a good mood. But life is tough and I have had enough! We don't know what our future holds in our old age and if I get this dreaded disease then I do not want my children messing their lives up because of it. Just lock me away and through away the key!!!

 

[ellejay]

Hi Kingmidas, It's so very frustrating isn't it? My mum would block every attempt to make things better.

If I come up with any solution to one of her (many) complaints, she almost treats it as an affront. Apparently, it's always "alright for me".

Even before mum's VasD, my sister was dancing to mum's tune, so much so that she ignored her own problems. By the time they were diagnosed it was too late for treatment, & she died a month later.

Then there was me, but I won't lay down my life for mum. I'm the selfish one, I'd rather spend time with "your family" (Do you know how much spite can be injected into two words?) I see her once a week (baring emergencies) She's in a CH now.

I try my best to make sure she's safe, warm & fed. I can't make her happy.

Take care of yourself

Lin x

 

[starryuk]

"your family" (Do you know how much spite can be injected into two words?)

oooooooohhhhhhhh yes!!!!!

 

[Jaycee23]

I can relate to that "your family"! My mum, when she lived at home would ring me and be so nice when she asked me to come and stay with her and sleep over but as soon as I said that I was staying home with my husband the sneering would come to the surface. She would say "that's right, you have a nice life, you were always selfish and have a hard heart". It was the sudden spite in her voice which was really upsetting. She would only be nice if she wanted to get you to do what she wanted. It is sooooo hard but I have hardened up and switch off now.

 

[kingmidas1962]

I don't get spite and venom, I get tears and sadness and wringing of hands ... I almost think I'd find outright nastiness easier to deal with!

How do you respond to the 'it's alright for you' statement, whether said with scorn or sadness? I never know what to say ....

 

[ellejay]

How do you respond to the 'it's alright for you' statement, whether said with scorn or sadness? I never know what to say ....

That is hard to respond to, without sounding as unreasonable as mum.

In my head I say "well mum, you're 91, My sis was 60, alright for who?" To her I say "I know it's not how you want it to be, it's how it is" mum usually responds with a "It's not fair" & I agree & change the subject.

My OH tried telling her that when she was like this it upset those who cared for her, but to mum that was just ammo. We could fix it if we gave her what she wanted (My head on a plate I think )

You're right tho' it is easier to harden your heart when the spite takes over.

Lin x

 

[kingmidas1962]

I always want to say 'yes mum, let's think of how many years it was alright for YOU. What would you have said if someone had said that to you then?' but know I'd get the down turned eyes and the trembling chin ...

 

[angelface]

Poor KM, its not all right for you at all is it?

When your mum starts up, could you actually tell her how you feel ? I think we spend so much time trying to protect other people, that we don't tell them how it is.

In the end with my mum, I had to tell her that I just could no longer cope. It was very hard to do, and she was horrified. Mum was just so used to me coping with everything she threw at me (not literally)

Just so hard to get it right is'nt it?

 

[kingmidas1962]

Yes, many times I've told her I can't cope - I need more time for myself and my family ... that I'm tired and I can't fit everything into my life ... I just think in her mind her needs override mine!