I cannot cope with seeing mum anymore.

[doelani]

Mum started showing signs of dementia in 2003, forgetting things, being careless with her money, not washing, not eating. We were worried and arranged for her to see a phycyatrist who said it was early Alzihmers and with some help she should be able to stay in her home. I lived 50 miles away and although my brother lived closer he could not help a lot due to having a young family. I had 2 other sisiters , one of whome was ill and one who just could not be bothered, even when mum was well.

When mum seen the phyciatrist my secound sister phoned me shoutinga nd screaming at me for not informing her, she knew more about Alzihmers than any of us and she should have been asked for advise. This is the same sister who only used to telephone once every few months even though she onlt lived 20 miels away. she passed mums house each day going to work and on her birthday would have put her card through the door if she got one at all.

Mum ended up in hospital as she just was lsoing so much weight and went downhill so bad, she went to nursing home No1 which altough not an EMI home said because mum was early stage they could look after her. After 18 months this changed and they basically dumped her in hospital and cleared her room out. After a few weeks Mum got a place in and EMI unit run by local health board and about the same time I ended up in hospital myself with a breakdown. I did not see mum for a few months as I was not well enough to elave hospital and when I did see her it broke my heart. She had went from a confused woman who still knew me to a stranger . Somedays she would not even look at me.

Forward a year, at mums last review they decided she no longer needed EMI care as no longer "challanging behavour" and we had to look for home No3 in 3.5 years. this time I put my foot down and moved her closer to me. Brother had got to the point he was visiting for maybe 5 minutes every month, it breaks his heart, one sister has died, mum never knew about this thank goodness, and other sisiter still does not visit. She does not even phone and her son says " she can't bear to see her " "you've got to realise how hard it is for her " WELL IT IS NOT A BED OF ROSES FOR ME !!!!!

I now see mum most days, anything between 10 minutes and 1 hour. Somedays I enjoy seeing her but most I hate it, I hate seeing her sitting in a chair all alone with people she does not know and who do not know her. she is only a name to them, another patient. We had no choice, we had to move her. We were told she needed nursing care not EMI but I am worried if she goes back to being agressive we will have to move her again. I cannot go through that again. Please forgive me for saying this but sometimes I think she would be better off dead. Sorry for saying that I love her and would miss her but what life does she have? I just spent 30 minutes with her and she ranted and raved and seemed angrybut I do not know what about.

4 years ago she was a mum (4 kids, i now dead) a mother -in-law. a gran (13 grandkids ) a greatgran ( 10 ) a neighbour and a friend. She was an aunt and a sister ( her last 2 sisters have died since she bacame ill )

What is she now?? A patient in a nursing home, she has a seat in teh day room, a bedroom with a few photographs and one visitor.

Please do not let me end up like her.

Sorry for the rant I do not even know whay I wrote this .

 

[Canadian Joanne]

You needed to write it to get it off your chest. It's imprtant to do so. You have to vent somehow or explode. This is what TP is about, getting things off your chest that people on the outside, the people not touched by Alzheimer's, don't understand. Some are very sympathetic but it's not the same as talking to someone who is on the same path as you.

I think we all have had our moments when we want it to be over. It can be so hard and so long.

You aren't alone.

Joanne

 

[Grannie G]

Hi doelani,

You wrote this as a cry for help. You are shouldering all the responsibility, you are doing all the caring, and who is thinking of you, or caring how you feel?

As Joanne said, no-one outside Alzheimers knows how it is. Your conscience makes you unable to abandon your mother, but everyone seems to have abandoned you.

Caring is so lonely. I remember visiting my mother, it was awful. I hated everything about it. I went out of duty, but when I got there and there was no recognition, I wondered why I put myself through it. Yet I still kept going.

Have you considered going to a carers support group. I am starting one next month. At least there you will be among people who understand what you`re going through.

I hope you get some more support from TP. At least here, everyone understands.

I`m sorry I can`t be of more help, but I do feel for you.

 

[DeborahBlythe]

Your mum and you

Doelani, first off, welcome to TP. You are in the right place. secondly, don't apologise for your thread. You spoke from the heart. Thirdly. You did absolutely the right thing for your mum, moving her nearer to you. Fourth. Try to stagger the visits so that you have a little break between them? You need to LOOK AFTER YOURSELF before you can help your mum. ( Forgive me for shouting, but it's so important!) If that means backing off a little and treating yourself, eating healthily if you can , seeing different sights and keeping in touch with friends, then so be it.

Then, when you feel more 'restored' go back to the home and perhaps think about ways to improve the quality of your mum's life. Speak to the home, in all humility and ask them if they can suggest things that you could do. Then ask them gently for a chance to influence your mum's care plan. Go over it with them and see if you can think of things which would help to make things nicer for her. This is AFTER you have found a way or two to make your own life a little more bearable. Try to build a good relationship with staff and management, praising them when you see good things and quietly checking them if you are unhappy.

Cross the bridge about a future move later. If the home is happy to have your mum, even with an AD diagnosis, AND it is closer to you, then that is a really good thing. Work with it but do the right thing by yourself too. Yes your mum's situation has changed drastically and yes, her contacts are dreadfully reduced, but hey, some people in NH homes have NO visitors and your mum has you. A brilliant advantage for her, if you can hack it.

The home my mum is in makes me very dubious about the care my mum receives. I wish she wasn't in there. I hear things going on with other residents that make my heart weep when I leave and arrive, and I don't trust them to do as good a job as my mum deserves, but do you know what? I took a few days break last week and went away. When I came back my mum was lying in bed with roses in her cheeks. She beamed when she saw me and pressed my hand with affection. She hadn't missed me as badly as I had thought. I asked her how she was and she said " I'm fine. They are all so lovely here". Somebody is doing something right here, whatever my misgivings about the home. My mum also has a very reduced quality of life now, but she doesn't seem as worried about it as I used to be.

Do take care, and keep in touch. Love Deborah Blythe

 

[connie]

Dear doelani, feel for you. Hope you feel slightly better for having shared your thoughts with us. It does not do any good to bottle everything away.

Look after yourself, as others have said. It is a long road, and it's no picnic, but you know you are doing your best for mum. Stay strong, love n'hugs,

 

[leigh]

I think you should write a letter to your sister and explain your feelings. It sounds to me you have a lot of anger towards your siblings for seemingly not caring as much as you do about how your mother is looked after. Perhaps if you could build up your relationship with your sister and brother you could take turns in visiting and spending time with mum and give each other support.

It is hard for everyone equally but you actually sound like the one is coping best as you haven't abandoned your mum. Perhaps in spending more time with your brother and sister and their families you can exchange stories about the mum you used to know, I always finds it helps to lighten the mood when you can have a good laugh about the fun times. After all, when we are gone isnt that what we would all want for those we leave behind.

Stay strong, you are incredibly brave.

Leigh