Where has my Mum gone ???

[sheilarees53]

I visit Mum in hospital and all she does is say that everything hurts and will I please take the pain away. She says no-one loves her anymore and nobody wants her. I love her very much and wish I could make everything right for her but I can't do that. I feel useless and helpless.
We are trying to find an EMI nursing home for her but there are so few around and we are down to the last one. None of the others has any vacancies and Mum has to go on a waiting list, waiting for someone else to die.
I hate this disease and the way it takes over everything.
I'm sorry for this very negative rant and thanks to anyone who is reading it.
Take care Sheila x

 

[dmc]

Hi sheila

I know how you feel, my mums in EMI unit at local hospital, when we got there last night mum was crying saying she wanted to die and would we please give her tablets so she could sleep and never wake up.
I also feel so helpless, that theres nothing at all i can do to help her.

All we can do is keep doing what were doing and then comming on to TP to rant and let it all out.

take care hope you manage to find a suitable home soon x

 

[Whocares]

I know exactly what you mean, My dear old mum has been in a care home for the last 7 months, she is well looked after and I can honestly say if push came to shove I would choose that place for myself. I miss her not being around and feel as if the mother I had is long gone. She cant even look up as her neck doesn't support her head or her brain doesnt give the right message for her to be able to lift her head.
I am a positive person and have been glad of that, this past year, I go in and sit beside her on the floor so that I can get in her eyeline, SometimesI put my head on her knee and tell her I love her and she strokes my hair, I am the child again.

I talk to her all the time even though I rarely get an answer. Now and again she will say something profound and then is gone again, at times like that I regret that I am not with her all the time, if only to be around for the moments of lucidity.
We are a close family and I feel lucky to have my sisters and brother. I really feel for only children, I used to envy them when I was growing up, I wouldn't trade now though.

My Dad died last year while mum was on an assessment ward. He was mums "carer" now she cant even remember him. A blessing I suppose .

All we can do is love her for a few more years and be glad that there are people worse off. Not may though I bet!!!

 

[connie]

Lionel is going through the "wanting to die" scene at present. He is 64, being lovingly cared for at home.

Such is this awful desease. We can only do the best for our loved ones, whereever they are. Our best is never going to be 'good enough', and indeed, what is 'best'

Carry on, do what you are doing. That is, caring with love. We can all do no more.
Take care,

 

[Stimpfig]

She cant even look up as her neck doesn't support her head or her brain doesnt give the right message for her to be able to lift her head.
I am a positive person and have been glad of that, this past year, I go in and sit beside her on the floor so that I can get in her eyeline, SometimesI put my head on her knee and tell her I love her and she strokes my hair, I am the child again.

This made me realise that instead of focusing - sometimes excessively - on the negative aspects of the disease at any given stage, I suppose one ought to appreciate their abilities within that stage. I shouldn't worry that mum sometimes doesn't know what to do with the food placed in front of her but appreciate that she can still lift her head, look at me and ask. It's all so relative, isn't it ?

 

[sophia]

You are doing everything you possibly can

It makes you feel like this doesn't it? My mum has been diagnosed a year and has said several times she'd rather be dead and she is useless and a nuisance to everyone. Sometimes she says she feels very stupid. Or she feels people must think she is stupid. Waiting for a bed in home is like being a treated like a commodity. It's the system. It's a bad one. She may or may not realise this is what's happening, and may or may not be picking up on vibes around her. The point is you know and you know she's not a commodity. She is your mum. And your mum trusts you and looks to you for help. And you are helping her. You are doing all you can. You are being there, and speaking for her, and caring and she knows that. And you know what else? She knows how much you care or she wouldn't trust you and say those things to you. You are doing all you can. You don't need to feel 'bad' or guilty on top of everything else. Try to ditch those feelings and keep showing her you care. She needs that above everything else. And take a break when you are not there. Actively relax if you possibly can, and look after you in this. It sounds terribly stressful, try to counteract some of the stress. Caring is more than enough to be doing right now. x

 

[Lynne]

I'm sorry for this very negative rant and thanks to anyone who is reading it.
Take care Sheila x

Don't be sorry Sheila, you NEED somewhere to let out the pain and frustration. I don't know the proper psychological term for it, but there's no doubt it does help to share & express the heartbreak & distress, and (perversely?) to realise that there are hundreds of people feeling similar emotions.

Is your Mum being treated with (or assessed for) anti-depressants? They may help, and reduce the physical pain if it's neuralgia. I'm not suggesting she be doped up so that she's unresponsive, I'm suggesting an appropriate remedy and dosage, assessed daily, to try & alleviate her distress.

Best wishes