Feel so sad and guilty

Irish Eyes

Registered User
Jun 9, 2008
5
0
Cheshire
Hello,I am new here. My Mum was diagnosed with Alzheimers five years ago when she was eighty.She is in a nursing home in Ireland and my Dad now lives on his own. My sister and I live here in the UK with our families.We go back to see Mum as often as we can - usually about every 5 weeks but since October she does not speak very much and does not remember anyone not even my Dad. It is her birthday on Thursday and this will be the first time that i will not speak to her. I miss hearing her voice even though the last few years she was so angry and said the nastiest things. I came back last Sunday and for the first time I did not kiss her goodbye. I could not bring myself to do it for some reason. i just walked out of her room as if I would be back in later. My Dad is finding it so hard but he never complains. My sister is not coping very well either and my brother leads his life as normal - he wont go to see her as he says he finds it too hard....as if we don't. We used to be all so close and now we only seem to be resenting each other. I feel so sad and for the first time since Mums diagnosis I wake up crying and I am supposed to be the one who keeps everyone else going.I think this is why I registered here tonight. Sorry to waffle on. Guess I am justfeeling sorry for myself. When Mum lived with us for awhile over here 2 years ago things were much tougher and I was not like this. For some reason her birthday is affecting me. Wish I could just pick up the phone and hear her voice on thursday.
 

gigi

Registered User
Nov 16, 2007
7,788
0
70
East Midlands
Hello Irish Eyes,


Welcome to TP..

There's a lot of sadness coming through your thread..I wish I could make it go away for you..

Hang on in there..there are lots of us around with support
and practical suggestions..sometimes knowing you're not alone helps enormously.....

Love gigi xx
 

christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
Dear Irish Eyes,
Welcome to Talking Point.
We are all travelling this road to-gether and are here to support each other.
My husband is in a E.M.I. Unit and has been for 13 months and I have forgotten what he sounds like.
I visited him to-day and he no longer knows me. It is a horrible feeling and I have my husband's birthday come up in a week and what with Father's Day, it is distressful for the family because he no longer understand anything.
Sending you my best wishes
Christine
 

Irish Eyes

Registered User
Jun 9, 2008
5
0
Cheshire
Hi Christine, you are right, it is sad.I am so sorry about your husband. i have spent the last couple of hours reading posts here and other information and everyone is right...you feel better when you know you are not alone and other people are feeling what you are also. My Mum was always so strong,to be honest a force to be reckoned with!!! She was the backbone of our family and I guess we are all floundering without her. So glad i have come on this forum. It does you good to read other peoples stories.Everything I am reading seems so familiar. A couple of posts were almost identical suitations to things that we have gone through.Thank you all for replying to me.
 

May

Registered User
Oct 15, 2005
627
0
Yorkshire
Dear Irish Eyes
Welcome to TP,a fantastic place for support and virtual friends who know exactly where you're coming from.
Just wanted to send hugs, this 'bloomin' disease plays havoc with us all, sufferers, carers and family alike. Take care.
 

Taffy

Registered User
Apr 15, 2007
1,314
0
Hello and welcome to TP,

I am pleased that you have found this site as dementia has such a profound effect on all involved.

My brother acted as yours, he stayed away and continued on with his life he rarely touched base and at our mum's funeral last week the guilt really hit him big time.

It's so hard trying to juggle family commitments and distance being a factor also..... all you can do is what you can....no one can ask anymore. It's a hard road and I wish you all the very best. Love Taffy.
 

Amble

Registered User
Jun 5, 2007
128
0
Surrey UK
Dear IrisH Eyes

Sadly your pain cannot be taken away but I so hope that knowing how much people genuinely care will help to alleviate it even just a little.
Clearly you are a deeply loving person as you are the one who 'holds things together'. You may feel your well is running dry but I promise you it won't.

You are helping others too by being here on TP so it makes you a hundred thousand times welcome.:)
 

gillianw

Registered User
May 17, 2008
17
0
Welcome to TP I also feel sad and guilty I look after my mam I am the one who does everything while my brother just wants nothing to do with her and me . Like many illness's it tears familys apart.

I feel your pain this site has helped me in the short time that Iv been a member you know that some one care's

Keep posting (and reading posts )

Gillianw
 

hendy

Registered User
Feb 20, 2008
506
0
West Yorkshire
Dear Irish Eyes
Hello again! I am sorry you feel so bad right now. We all have our own way of dealing with,coping,managing.( or sometimes not- we are only human) The effect on families is quite devastating. It just adds to the distress doesnt it? It is so sad. I am glad you have found TP, you will find some comfort on here. I managed also for 5 years on my own, and have found TP such a wonderful source of support.
Keep posting!
take care
hendy
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hello, Irish Eyes, welcome to TP.

I'm sorry you're feeling so sad. It's so difficult when the person we care for can't talk.

My husband is in a nursing home, and has no language. But I see him every day, so I have that contact with him. I can only imagine how hard it is for you not to be able to talk to your mum on the phone.

We can't take your pain away, but we do know how you feel. Please come and talk to us whenever you like.

Love,
 

Mameeskye

Registered User
Aug 9, 2007
1,669
0
60
NZ
Hi Irish Eyes

I wish I could make it all go away for you, for I feel that you are at the most painful time in this disease.

My Mum died 10 weeks ago now after being diagnosed with VAD in 2003 (but to be honest she had been "peculiar" for a good 3 years beforehand1)

By the time of the diagnosis I had, in reality, already lost my best friend. I had a close relationship with my Mum but the early personality changes left me wondering if I was upside down, inside out or totally wrong about our relationship. As she drifted further and further away from me I had to come to terms with the new lady left in her place, and she changed over time too.

I lived 5 hours drive away and visited as you did at that time. Luckily as she lost the ability to speak on the phone my husband got a job closer to where she resided (though I have to admit I did not want to move as I loved where I lived).

I railed against fate and often could be found sobbing as I was grieving for the loss of my Mum, although couldn't work out for long enough what it was. I could no longer talk to my Brother , who did a few minute long duty visits as he couldn't cope. He never took her out, wouldn't look after my children to let me do it. I could not cope with it and for a while did not speak to him at all. I know he feels guilty for this now.

Her coming birthday is allowing the grief to resurface along with the desire to hear her. These feelings do not go away, and at times you can be made to feel quite low by them, even when you have been coping well. It is the same as the grief as someone dies, when you experience pangs of raw pain again, but they pass.

Wishing you strength in these coming days.

(((((hugs))))))

Love

Mameeskye
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Dear all

And Dear Moderators, please feel free to remove this if you wish, but all I Would say to the brave people on this thread is that sometimes you can't do anything at all.

Accept this, and love to you all.

Margaret
 

Lynne

Registered User
Jun 3, 2005
3,433
0
Suffolk,England
Hello Irish Eyes

Please try to accept your brother's attitude for what it is - weakness, not uncaring. Try to be sorry for him, not resentful. Holding negative feelings towards him is just a waste of emotional energy, and goodness knows we all need plenty of that! Your Mum would be so sad to feel that her illness is driving a wedge between her children. And of course the transformation of a strong character (dare I say typical Irish Mother figure?) into a sad & confused person is torture for all her family. You want your Mum back, as I do.

My brother is in Australia and has just made the decision (I think) not to come home for another visit. He wants to remember Mum as she was, not as she has become, and I really do understand that feeling. I didn't choose to be the one who lives nearest! That's just sod's law.
He does care deeply, (he adores Mum) and has helped me (financially) when I needed it since I gave up paid work to look after Mum. How will it help me, to know that he's the other side of the world feeling totally miserable? Not a bit.:(

This suggestion may be a bit obscure, but why don't you & your sister club together to order some flowers for your Mum's birthday (maybe even your brother too?). Choose red freesias because they have the most lovely scent (the red ones are best) and will give Mum pleasure even if she can't remember who they are from. And YOU will know that your thought gave her pleasure on her birthday.
 

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Quack

Registered User
Mar 25, 2008
17
0
Yorkshire
Hi

I think the flowers are a good idea, my mum has only recently gone into a home, but after a visit or a trip out we have to 'just disappear' or she wants to come home with us. That's the hardest part, not being able to give her a hug and say 'bye, see you soon. I can understand why people don't want to visit when their loved ones are in the later stages, it can be distressing, but I couldn't live with the thought I wasn't doing my best for my mum. Different folk have different ways of dealing with it.

Hope you and your family can celebrate your Mums birthday as she would want you to, she may not appreciate the day, but you obviously do and should do as you see fit.
 

Irish Eyes

Registered User
Jun 9, 2008
5
0
Cheshire
Hi Everyone,
Only just read your posts but we did organise for Mum to have flowers today and Dad brought her up her fave ice cream and he said the home had got her a cake and everyone sang Happy Birthday. He said she kept laughing which made him laugh and he seemed delighted on the phone. I rang the home and told the girls there to tell Mum that I had rang, even though I know she will not have a clue but all in all today was good. This forum has really helped me. I think the only thing I can do about my brother is not to judge him, and to be honest I have been. Just wish he would do more for Dad now but you are all right, everyone deals with grief differently. The 'Irish mother' bit is spot on!!! and I think that is what is hardest for my brother. Even though he has a family of his own, Mums influence was huge and even after the diagnosis he would get angry and say "she is just being nasty" and "she was always like that" etc etc when Mum would loose her temper. Would love to think he would have a look on here but I would be afraid to even suggest it. Anyway sorry for rambling on....going to have dinner now and make a toast to Mum! Happy Birthday and God Bless Mum x
 

JoAlvaston

Registered User
Jun 12, 2008
9
0
Families are so divided.
My aunt is our focus. She has 3 children - 1 who is brilliant and very supportive, 1 who lives near and hasn't seen for years and one who lives a long way away but who is irregular in contact.I am "only" a niece but she was a good friend to me and I will never forget that. Do what you feel you need to and take strength from your conscience - if that doesn't sound too corny...
J:)