newbie here

[Lola]

Hi everyone,

Just joined.

I was told about this forum some time ago, but only now do I feel able to join in.

My mum has dementia and she is in a nursing home.

I find it very hard to handle, as she isn't who she was, and when "talking" together, it is a strain as I know she wants a lot of reassuring, she panics and gets upset a lot.

If you saw me when I'm with her, I think you'd commend me on being so supportive, strong and kind with her.

But if you saw me after I'd finished visiting her, well thats a different story. It takes it out of me. I must be alone, I must switch off and watch **** tv or simply do nothing, absolutely nothing, for all my energies are used up, mentally and physically. And I just cannot cope with anything else for days afterwards - cannot handle talking to any of my friends never mind meet up with them, can't get into anything leisurely like I used to.

It feels as if my life is drifting away. I know I'm so isolated socially but I just cannot put my mind to socialising with things that don't mean a great deal to me anymore, when I'm preoccupied.

But I love my mum and intend to keep seeing her, but she is so very frail and that is a big worry.

Anyone else in the position I'm in?

 

[Nell]

Dear Lola,
(I still love the song of the same name!)
Welcome to Talking Point and I hope you find it helpful. It has been a godsend for me.

I really identify with what you say about visiting your Mum "taking it out of you". I feel much the same. Fortunately for me I don't need much "down time" to recover but I truly sympathise with your need to be alone to regather your strength.

One of the things I find most difficult (even tho' you'd think I'd be used to it by now!) is how Mum's memory loss interferes with her ability to stay on track about such things as requests. She will ask for something (eg. fruit of a certain type) or make a comment about needing something (eg. a new sweater). By the time I provide it (usually a few days later) she has forgotten she wanted or needed it to begin with! I'm sometimes tempted to just "overlook" a request, but then she seems to remember clearly that she has asked for it and I haven't provided it!! Oh wel, such are the frustrations of the disease!!

I don't have any god suggestions for recovering your equilibrium more quickly - except to say that exercise helps me. I don't look like someone who exercises
but I do find it helps to restore me to my "usual self" when I'm stressed.

I'm sure others will have good ideas to suggest. In the meantime, welcome to TP!
Nell

 

[Cate]

Hi Lola

Welcome to TP.

I can totally understand where you are coming from................awful I know............but I totally dread going to see my mum..............I never know if it's going to be a 'nice' visit...............or an abusive one...............I keep telling myself it's not mum but AD..............most of the time it doesn't help...

We all find different ways of coping..............mine is to visit TP..........read that I'm not on my own...........and to visit Tea Room to enjoy a laugh with my TP mates.............. I can honestly say its my TP mates who keep me going..............

Love
Cate xx

 

[Grannie G]

Hi Lola, Welcome to TP, I`m glad you`ve found us and hope you get as much help and comfort from logging on as I have.
It`s the most difficult thing in the world to watch the deterioration of someone you love. It`s a slow, mental torture. I`m not surprised you have problems coping with it.
I also watch a lot of rubbish TV. I need to watch stuff I don`t need to concentrate on. I used love debate and discussion, but sometimes I don`t have the mental strength to be bothered with it. I listen to the radio most of the time. It`s so relaxing.
It`s very stressful putting on an act for mum to try to keep her spirits up. Try to be kind to yourself too. If you devote all of your energies to mum, there`ll be nothing left.
She isn`t who she was, but she is still mum.
Love Sylvia x

 

[lindaj]

Hi Lola

I know exactly how you feel my mum is also very frail and it does make me feel that my life is on hold and has been for about 4 months I cannot think of much else but my mum. I can't get my head round doing anything socially either. Friends I have do not really understand how I feel and to be perfectly honest I think they are bored with it now so I do not talk about my mum to anyone anymore. Except my family but I sometimes feel they are fed up with hearing about all the problems I encounter when I visit mum. So I am glad I found TP. When I have visited mum and something has upset me I just get on the forum and someone always replies. xx

 

[Lucille]

Hi Lola

I know exactly what you mean! Mum isn't in a home yet, but I feel drained after visiting her (in her own home). It also takes me a day or so to get back into the swing of things. Fortunately, I'm able to go out to work and because it's busy I find it helps ... although sometimes I find it a bit of a struggle if mum has been a real pain in the a*s!

Like Nell, it's the constant chopping and changing I have a problem with. One minute she seems to remember things and other time she doesn't. I've always tried to explain things to her (as many times as I am able without throwing myself out of a window!! ) as I thought this was the right thing to do. But I got so stressed with it, if it's something that's been going on for months and months. So now, I just go along with something. If she says I haven't told her then I agree with her.

I don't want her dementia to define who I am. People at work are so lovely and ask about mum, but sometimes it's a constant intrusion, and I don't want to discuss her all the time. I become quite monosyllabic at times: 'forgetful'; 'fine'. Selfish it maybe, but putting some distance between me and the disease helps to keep me sane.

I also find exercise helps and I go running (well, trotting, sort of). It allows me to empty my head and it's amazing how helpful it is. That and the fact that I'm trying to get back home and be able to breathe unaided when I get there!

I understand your predicament. It is a very difficult situation.

Take heart. You're not alone.

 

[suzi]

Be Strong

Hi Lola,

I know exactly how you feel, ane yet it is so hard to describe the feeling to anyone else.

Mum is very frail now, twice last year had pneumonia and pulled through and yet is still agressive and very frustrated. her language is now difficult to understand and I spend my time just talking over and over again the same things.

It is really good to be able to share one's feelings on the is forum, and I hope it helps you to do the same.

I think we can only hope that at some stage they will find peace within themselves, I cannot wait for that time,

Be strong, and try and find someone close to talk to. Jo xxx

 

[Tender Face]

Gosh Lola ....

... and everyone else who has posted here ... hadn't quite realised ... but you are SO, SO right ..... don't seem to have time for people who have no understanding of 'the situation' .... find I can now watch any 'rubbish' on TV given the chance ..... (and maybe it's not rubbish as I rubbished it before - but that little bit of escapsim we all need sometimes....) ..... except TP, of course, where we can all share with some understanding that we are still who we are - who we were - before this 'defining' ..... (Gosh, Lucille! That hit a nerve!!!!)

Love, Karen, x

 

[Lola]

Wow, thank you for all the replies, you are all so very supportive, thank you.

You are all so right - in particular with regards to re-gathering strength, dread going to visit, slow mental torture, life on hold, friends not understanding how I'm feeling, the constant chopping and changing...

thing is, it has now reached a point where I am too drained to focus on anything else, my energies are used up - so much so that I need time out and cannot even face visiting my mum right now.

I've been through this before where I couldn't handle visiting her, and it's happening again now. Oh, but I feel so guilty, she needs me and I won't be there with her for the time being, oh this guilt is driving me nuts.

Things with her have been all over the place and however much I thought (once again) that I could cope with it and her, it's all kind of caught up with me again this week in particular.

Thank heaven for dads army dvd's, and for this forum, I do think I've come to the right place.

I will try to support you all too but obviously it's a very fragile situation all round for us all, and I don't know about you but my emotions are all over the place at the moment and mainly in the wrong places too.

But thanks for having me here, it feels right.

 

[Kayla]

Dear Lola,
I too felt as if caring for Mum was completely taking over my life and I often feel that I can't cope with visiting her on some days, so I don't. Later on I visit when I feel more in the mood and it is better.
I joined a Creative Writing Class and writing poems and stories has definitely helped me to express my emotions and get things out of my system. I'm not at all artistic, but I should think painting or pottery would also help some people in the same way. In fact trying out any new activity which interests you would probably help, and Adult Education Classes usually have a good selection of things to do at a reasonable price.
Feeling isolated and thinking that nobody else understands is upsetting, but at least on TP there is bound to be someone else in a similar situation. We can only do our best and try to take one day at a time.
Kayla

 

[Lola]

thanks Kayla, I will give some thought to which activity I could take on that isn't too taxing & is interesting.
This seems to be what a lot of you are saying, be it exercise or something with the hands, so I'll bear that in mind, thank you.