I wish it would be over

[rachelse]

Sorry it's my first post and I just wanted to write down how I am feeling at the moment .Mum is just 70. Diagnosed when she was 65 we think she has had dementia since she was at least 60. Mum started getting worse- attacking my Dad in 2009 and running off in the middle of the night. I lived nearby but with a small child, husband working away and working myself could only help my Dad so much. She was sectioned for her own safety so we decided the only way to keep her safe would be a care home. She settled in well and the home is amazing. Dad died suddenly later that year. Part of me feels he gave up knowing she would never be coming home. I have gone to see Mum twice a week since she went into the care home she is unable to hold a conversation and has no idea who I am or who my 6 year old daughter is. Her sisters find it too distressing to see her the way she is so it's just me visiting. She has lost an awful lot of weight and just paces the corridor all day in the care home. Her head is stooped over and she tends to bump into things.The care home staff are wonderful and monitor her diet really closely. She eats like a horse but is burning so many calories pacing all day. She never sits still and only seems to relax at night.
My friends and family ask how Mum is? I am truthful but try to be positive more to make them feel better and say she is happy in her 'own little world'. But is she happy? I feel like I lost my Mum years ago but have not been able to grieve for her. God forbid I should say this but I wish her pain would be over for herself and selfishly for me. She cries a lot and I feel so bad I can't understand what she may be thinking. She may be in pain but she can't tell anyone.To the outside world I cope really well but inside and just lately I just wish it was over. What an awful thing to think but I believe it will be a relief. People who knew Mum who have not seen her for a few years would not recognise her it is heartbreaking and every week I go knowing I can't even sit and hold her hand as she won't keep still and can't have a conversation with her. I do talk to her and tell her what has been going on often I think what's the point. I wonder how long this will go on for? Another 10 years? This is a truly awful disease.

 

[Grannie G]

I am so sorry Rachel, and even more sorry your mum`s sisters cannot be adult enough to offer you the support you so obviously need.
I`m sure they find your mother`s condition distressing but not more distressing than it is for you. xx

 

[dots]

I wish I didn't understand, but I do. My husband is just the same and I'm afraid I feel the same way you do. It's hard to visit when it's a fifty mile round trip and he walks so much and is/or can be aggressive with too much contact. You just end up talking to the staff. He has to have two staff with him during the day and sometimes four for personal care.

 

[Jackcat]

Dear Rachel, we have much in common! I too wish it was all over for my Mum, she is a shadow of her former self and it will only get worse, but she is in a wonderful home, tho' she doesn't agree, and I dread that this will drag on and on for many years yet. She's only been in the CH for a few weeks, but things had got really bad at home before that so we really have to have her there, there is no viable alternative. I have watched a close friend in a similar situation, and he didn't grieve when his Mum died because he had already done that while she was alive. I feel that we are grieving now for the loss of our Mum/Daughter relationship as it was, I know I cry at the slightest thing these days! The CH manager helped me greatly when she said that I will now be able to develop a different type of relationship with Mum now, and that she is not nearing the end of her life, she is entering a new period where she will flit in and out of different realities and times of her previous life, and we will care for her by making sure she has people on hand 24-7 to make sure she enjoys the journeys and is safe and respected.

I wonder if you could maybe visit less often, to give yourself time to recharge your batteries inbetween times. If you feel she needs the visits, maybe you could ask other relations to help you out, or maybe arrange a befriender through Social Services?

 

[Mun]

Rachel,
I have days when I wish that my dad could be released from his "existence", although he's still at home,he has no real quality of life,barely any speech now and just sits staring into space. I love him dearly,but the state he's in now I find so so sad

Val

 

[mike antony]

often feel something similar to you i cant even remember what my mum was like 6 yrs ago all ive seen is her ill
but now in ch seems happy cant walk finds everything funny all the anger and confusion from years ago is gone
your grieving for someone youve already lost
just have to endure this for her sake

 

[rachelse]

Thank you all just knowing there are people who have the same feelings makes me feel a bit more human. I have a great relationship with the staff at the care home 'Dots' I know exactly what you mean I spend most of my visit speaking to the staff.
'Jackcat' thanks I will try and look at it as entering a new type of relationship with Mum. She is not aware if I have visited or not but I go because if I don't I feel guilty. Silly I know.
'Val' I so sympathise with you and your Dad.
Grannie G thank you for your post sorry I should have explained Mum's sisters are much older one is starting with dementia so I think she finds it frightening to see Mum.
Thanks everyone xxxx

 

[Adagirl]

Rachel, I know that my Mum would wish it were over, if she was still "herself". Her own mother spent the last few years of her life in a "home", suffering some form of dementia, in the sixties, and my mother was about 150 miles away and distressed about it - but couldn't visit more than once a year. And she did say to me at the time that if she was in that state then I shouldn't hesitate to put her "away".
I just wrote a whole ream of my experience with my mother, but decided to delete it when I came to my conclusion - which was that you should concentrate on your child - or children - and try and start leaving your mother behind. Absolutely make sure that she is getting the best possible care - and question the pacing and discuss drugs or not drugs - but if you trust the people she's with, and if she's not recognising you and taking comfort from you - then cut down the visiting. Or at least look at why you are visiting twice a week... It is an indescribably dreadful disease, and it sounds as though your mother has a particularly distressing form of it, in that she is obviously still feeling the distress of her situation in some way. And my heart reaches out to you. But, since we are not allowed the gentle pillow as a way out, try and take comfort in the idea that, although your mother's dementia appears to have come in like a storm, I think it should become gentler as time passes. From my experience with my own mother, it was the clashing between the recognised and the unrecognised which caused the distress. That passed, and then she did seem to reach her own "happy land" for a while. Now I'm not sure - there doesn't seem to be much left at all. I have said to my close friends that I think that it's time for my mother to go, though I agree that it is a terrible thing to give words to.
But I think you should look to your mother's grandchildren (I'm sorry if this sounds like a cliche..) and concentrate on making the fact that your mother/their grandmother has lived and been and done into something valued and which was worthwhile.
And don't feel guilty - or try not to. (I tell myself that quite often)...

 

[Nanak]

Hi Rachel
My Mum is at very end stage and I feel just as you do. Mum can no longer walk, talk, realise who we are, feed herself. She is not my Mum any more. I have often thought (as I have no doubt others have) that we don't leave animals in this state, why our loved ones.
I understand completely your feelings and can only reiterate that you try and concentrate on your own life whilst still making sure your Mum is ok.
Nanak
missing what has gone and scared of what is to come

 

[lupo]

So sorry to read this. My Mum paced too, for hours, up and down as soon as she could walk after her fall in February . She rattled all the doors looking for a way out. In the new ch she paced too. However, she does seem to be more settled. GP prescribed sulpride and she isnt pacing as much, and is sleeping better most nights. Our worry is her falling, shes fell three times since she has been there which is just 2 and half weeks. Maybe its worth asking if the GP can prescribe something too settle her as she is losing so much weight with the walking. Take care x

 

[scarletpauline]

I haven't experienced things this bad myself but can so understand how you feel, and I too wish your sisters would visit and support you.
I send you love and hugs to make you strong.
Love Pauline xx

 

[Witzend]

I have said to my close friends that I think that it's time for my mother to go, though I agree that it is a terrible thing to give words to.

Well, I often think that about my mother, and I can't honestly say I really feel bad about it. She is way past her time, poor old thing - nearly 94, living a pitiful half-life, every shred of dignity ripped away, though the CH is very good and the staff very kind. She is so pathetic now it sometimes breaks my heart to see her like that, though I have had to build a sort of shell around it since it's so upsetting.

She's been there nearly 5 years and if I take her out for a drive around the park and a cup of tea/ice cream (rare now since she usually doesn't feel like it) she doesn't recognise the CH at all when she gets back. She's still constantly wanting to go 'home', though where that is she doesn't know any more - will sometimes talk of her parents' house. She does still know me, in that she recognises me as a familiar face but if anyone asked who I was I'm sure she wouldn't be able to say. She's not as bad as some people, but I know 100% that the person she was before would say, 'For God's sake, how did you let me get to this? Please, please, please, just let me go.'

And I would if I could, but she's never been physically ill once since she's been in the CH so I have never been in the position of being able to say, 'Please, just let Nature take its course.' Of course I will be very sad when the time does come, but for her, I will just be glad that it's over. She sometimes says she ought to go home and see her parents, and I think, 'Yes, that would be the best thing now.'

 

[rosaliesal]

You are grieving....every day with every thought of your mum....,,,,,,,,,,,,,,,,,,,,,

Your every tortured thought is grieving......grieving for the mum lost and grieving for the new mum she has become. You are trying to find a way to help her but you can not change what even the medical profession can not. It does break the heart but do not torture yourself imagining how long this will go on for....no one knows the answer to that. The mind plays awful games which will not help your mum and will definitely not help you. Coming to terms with this illness is a nightmare but staying strong is the only way to cope. Make time to give yourself happy moments even if it is something simple like a coffee with friends. You could even say to them that you wish to enjoy the time with them so won't talk about problems .It is not your fault you are doing your best.

Sorry it's my first post and I just wanted to write down how I am feeling at the moment .Mum is just 70. Diagnosed when she was 65 we think she has had dementia since she was at least 60. Mum started getting worse- attacking my Dad in 2009 and running off in the middle of the night. I lived nearby but with a small child, husband working away and working myself could only help my Dad so much. She was sectioned for her own safety so we decided the only way to keep her safe would be a care home. She settled in well and the home is amazing. Dad died suddenly later that year. Part of me feels he gave up knowing she would never be coming home. I have gone to see Mum twice a week since she went into the care home she is unable to hold a conversation and has no idea who I am or who my 6 year old daughter is. Her sisters find it too distressing to see her the way she is so it's just me visiting. She has lost an awful lot of weight and just paces the corridor all day in the care home. Her head is stooped over and she tends to bump into things.The care home staff are wonderful and monitor her diet really closely. She eats like a horse but is burning so many calories pacing all day. She never sits still and only seems to relax at night.
My friends and family ask how Mum is? I am truthful but try to be positive more to make them feel better and say she is happy in her 'own little world'. But is she happy? I feel like I lost my Mum years ago but have not been able to grieve for her. God forbid I should say this but I wish her pain would be over for herself and selfishly for me. She cries a lot and I feel so bad I can't understand what she may be thinking. She may be in pain but she can't tell anyone.To the outside world I cope really well but inside and just lately I just wish it was over. What an awful thing to think but I believe it will be a relief. People who knew Mum who have not seen her for a few years would not recognise her it is heartbreaking and every week I go knowing I can't even sit and hold her hand as she won't keep still and can't have a conversation with her. I do talk to her and tell her what has been going on often I think what's the point. I wonder how long this will go on for? Another 10 years? This is a truly awful disease.

 

[Iona]

Hi Rachelse
Like others who have responded to your post, I too admit to wishing it was over for Mum - though for her sake or for mine I'm not always sure. When Dad died suddenly many years ago, Mum's first words to me when I arrived home were not to be sad as at least he wouldn't become like Grandad (who had dementia), and to be thankful that he had died quickly, with little pain. I think how cruel it is now watching my Mother slowly disappear head first into her grave. She has not been spared, and we have not been spared, the prolonged ending. Yet sometimes she still is able to laugh and sing, still recognises close family - and I wish all the more that her end will come quickly before she loses even these small signs of quality of life.

Whether you go to visit your Mum, or stay away, my guess is that guilt and saddness will follow - par for the course, I'm afraid. Small comfort, I know, but at least through posting here, we know we are not alone.

Try not to be too hard on yourself when you think, what for some is, the unthinkable. Not everyone believes that wishing a life be over (in certain circumstances) is a terrible thought. Thank you for airing your thoughts in public; sometimes it just helps to know that others feel the same way too.

Thinking of you

Iona

 

[Butter]

You are not alone at all - my poor mother has been ill all her life - she has bi-polar disorder with dementia ontop. I wish all sorts of things which I hardly dare post here. But I certainly wish her suffering was over. I think the life that is imposed on her by our capacity to keep people alive is cruel and barbarous beyond belief. And I don't feel guilty at all - it is just there are people with 100% pro-life views who do not get where we are coming from.

 

[Miss Brodie]

it's nice to know that I too am not alone in that way of thinking. My dad has paced for what seems the longest of times. He too is so very thin because of it. He started falling and has been in hospital as a result of it. Dad moved into a care home two weeks ago today. We actually thought as a family the day he stops walking will be the day he completely gives in to dementia.

Don't be hard on yourself xx

 

[massolina]

I feel so much for you, my dad is not anywhere near that stage yet , but I know I would feel exactly the same way. As Nanak says we would never let our animals suffer like that , its heartbreaking. Never feel guilty about your thoughts or selfish, as you know that in their right minds these people we love would never want to exist like this. Its an insult to humanity keeping them going ,sorry but thats how I feel. Jo

 

[CINDYJANE]

Keep strong for your daughter

Hi Rachel
I wish I could say something to make you feel better.....I hope that just by offloading your feelings it will help. I agree the stress and anxieties it brings on us, to find our mothers in this way, is really dreadful. You feel bad for her, but you must also think of yourself. You need to be there for your daughter now. I am overwhelmed with anxiety too, dealing with the need to move my mother from her home soon, and it is affecting my relationships and my work. My 16 year old daughter says my anxiety is rubbing off on her and making her feel that way too. My mother's sisters tell me that my mother has had her life and I must think more of my own and my children...My mother lives alone and sees no-one except for me when I visit and the carers once a day, but strangely she seems happy in her isolation and is retreating more into her past memories. She was an aggressive person too but is becoming quieter - at least that it is how it seems at the moment. I dread to think of her in a home and not remembering much at all, like your mum. I have just read a book called The Simplicity of Dementia by Huub Buijssen (from Amazon) which I found helpful, in understanding how suffers feel and think about their condition.
Like you, I hope that something will suddenly happen to end the misery- it is so cruel that people have to disintegrate slowly with this disease.

 

[jan.s]

I haven't had your experiences, but can only imagine the sadness you feel. I just wanted to wish you, and all the others in a similar position, strength to cope.
Jan x

 

[Biddy88]

Rachel, you are certainly not alone in this. My Mum always said to us "If I ever get like Nanna, shoot me." Sometimes when the phone rings I wish it was someone calling to tell me that Mum has passed away gently in her sleep - painless. Better that than watch her suffer indefinitely and have no way of making her better. I confessed to my sister that I feel this way and she admitted she feels exactly the same.

It's a cruel, miserable, exhausting disease and, to cap it all, our days are filled with endlessly fighting to get the right help and do the right thing for the people we love.

Me saying this doesn't change anything for you one little bit, but I hope it helps a little to know that so many of us feel the same way.

Mel X