How life has changed

Miss Marple

Registered User
May 10, 2018
17
Life used to be happy, fun and full of laughter. Now, it's sad, isolated and very withdrawn. There's no time to enjoy the morning sun with a cuppa, no time to enjoy prepping dinner, no time to just be and not think. Every day, every minute is wrapped with guilt, worry and feeling miserable. I look out of the window and see flowers and sunshine but I no longer feel the joy they used to bring me. I see my best friend but don't feel the laughter hurting my stomach muscles. I try to sit quietly and think of nothing, just for five minutes, but no it doesn't work. I look in the mirror and I see a middle aged woman looking old and lifeless; I don't see me. I don't have Dementia, my mum does. We are both losing our lives, just in different ways. I want the old me back. I want my life back. I want my mum back. I hate dementia, I hate feeling like this, I hate my husband seeing me like this, I hate seeing myself like this. I hate seeing my mum disappearing into a haze. I hate you dementia with all the hatred in the world.
 

pipd

Registered User
Apr 12, 2015
78
Leigh on Sea Essex
Very thought provoking post. I felt exactly the same not so long ago. My mum passed away in January and after several years of me caring for her with all the sadness and stress it brought I'd give anything to have her back but I'm also relieved to almost 'have' me back too.
 

Littlebear

Registered User
Jan 6, 2017
81
Life used to be happy, fun and full of laughter. Now, it's sad, isolated and very withdrawn. There's no time to enjoy the morning sun with a cuppa, no time to enjoy prepping dinner, no time to just be and not think. Every day, every minute is wrapped with guilt, worry and feeling miserable. I look out of the window and see flowers and sunshine but I no longer feel the joy they used to bring me. I see my best friend but don't feel the laughter hurting my stomach muscles. I try to sit quietly and think of nothing, just for five minutes, but no it doesn't work. I look in the mirror and I see a middle aged woman looking old and lifeless; I don't see me. I don't have Dementia, my mum does. We are both losing our lives, just in different ways. I want the old me back. I want my life back. I want my mum back. I hate dementia, I hate feeling like this, I hate my husband seeing me like this, I hate seeing myself like this. I hate seeing my mum disappearing into a haze. I hate you dementia with all the hatred in the world.
How I sympathise..... I recently wrote a very similar post to yours. In my case it's my husband who has dementia (Alzheimers) and I hate what it has done to both of us. Two lives lost. I just feel so alone. Tonight I was talking to my dad on the phone when my husband decided to have one of his strops, which involve lots of banging and crashing & general nastiness. My elderly father's comment was 'well he's got every right to behave like that'! No he doesn't, dad. I'm the one that cares for him, loves him, no he doesn't have a right to be nasty to me. He might not be able to help it but that's different. Now I feel sad because even my own father doesn't support me. There is no happy ending.
 

yak55

Registered User
Jun 15, 2015
616
Life used to be happy, fun and full of laughter. Now, it's sad, isolated and very withdrawn. There's no time to enjoy the morning sun with a cuppa, no time to enjoy prepping dinner, no time to just be and not think. Every day, every minute is wrapped with guilt, worry and feeling miserable. I look out of the window and see flowers and sunshine but I no longer feel the joy they used to bring me. I see my best friend but don't feel the laughter hurting my stomach muscles. I try to sit quietly and think of nothing, just for five minutes, but no it doesn't work. I look in the mirror and I see a middle aged woman looking old and lifeless; I don't see me. I don't have Dementia, my mum does. We are both losing our lives, just in different ways. I want the old me back. I want my life back. I want my mum back. I hate dementia, I hate feeling like this, I hate my husband seeing me like this, I hate seeing myself like this. I hate seeing my mum disappearing into a haze. I hate you dementia with all the hatred in the world.
Ditto, all you have said I feel too x
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
Life used to be happy, fun and full of laughter. Now, it's sad, isolated and very withdrawn. There's no time to enjoy the morning sun with a cuppa, no time to enjoy prepping dinner, no time to just be and not think. Every day, every minute is wrapped with guilt, worry and feeling miserable. I look out of the window and see flowers and sunshine but I no longer feel the joy they used to bring me. I see my best friend but don't feel the laughter hurting my stomach muscles. I try to sit quietly and think of nothing, just for five minutes, but no it doesn't work. I look in the mirror and I see a middle aged woman looking old and lifeless; I don't see me. I don't have Dementia, my mum does. We are both losing our lives, just in different ways. I want the old me back. I want my life back. I want my mum back. I hate dementia, I hate feeling like this, I hate my husband seeing me like this, I hate seeing myself like this. I hate seeing my mum disappearing into a haze. I hate you dementia with all the hatred in the world.
Oh yes fun, where did that go. I completely get what you are saying, I walk past the weeds in the garden and I don't care, I don't care about the dust any more in the house or the mess in the kitchen. It is all unimportant, irrelevant really. I feel old, I feel guilty. I love my dad but sometimes he gets on my nerves then I really feel guilty. I don't want to do anything, I don't make plans. I don't go shopping, I have no new clothes and I don't want any, there is no point. All I do is look after dad and he is ill as well as having dementia so double guilt for having selfish thoughts.

I have an irrational belief that I will die the day before dad does. I am convinced of that. There will be no time for me, no freedom that I crave for.
 

Littlebear

Registered User
Jan 6, 2017
81
.

I have an irrational belief that I will die the day before dad does. I am convinced of that. There will be no time for me, no freedom that I crave for.
I have the same with my OH, although not quite so irrational as he's only a year older than me. Sometimes it's only those thoughts of one day being able to resume my pre-dementia life that keep me going. Not that I ever wish for him not to be here with me but I'm sure you understand what I mean. It's that longing for a lost life. I'm sure many of us feel it.
 

Reman

Registered User
Jan 21, 2018
27
Completely understand your feelings, my OH has dementia, also he can not walk, so I'm on toilet patrol all the time, and at his beck and call. This time two years ago I yearn for a holiday, last year an afternoon with friends, this year I would like to go to bed when I want to. You lose friends, they are well meaning saying things like 'you got to look after yourself' 'make time to for yourself' How? I have a good friend who I text all the time with my rants, she replies with funny quips, it helps a little. My only escape is reading at night if I'm not too tired.
 

kindred

Registered User
Apr 8, 2018
2,340
Completely understand your feelings, my OH has dementia, also he can not walk, so I'm on toilet patrol all the time, and at his beck and call. This time two years ago I yearn for a holiday, last year an afternoon with friends, this year I would like to go to bed when I want to. You lose friends, they are well meaning saying things like 'you got to look after yourself' 'make time to for yourself' How? I have a good friend who I text all the time with my rants, she replies with funny quips, it helps a little. My only escape is reading at night if I'm not too tired.
Oh yes to your little wants. For four years I longed to go to the toilet alone or sit down in the bath. OH was always there, asking me what we were going to do next. All my sympathy and thoughts. This is beyond hard for thousands of us.
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,810
Nottinghamshire
Life used to be happy, fun and full of laughter. Now, it's sad, isolated and very withdrawn. There's no time to enjoy the morning sun with a cuppa, no time to enjoy prepping dinner, no time to just be and not think. Every day, every minute is wrapped with guilt, worry and feeling miserable. I look out of the window and see flowers and sunshine but I no longer feel the joy they used to bring me. I see my best friend but don't feel the laughter hurting my stomach muscles. I try to sit quietly and think of nothing, just for five minutes, but no it doesn't work. I look in the mirror and I see a middle aged woman looking old and lifeless; I don't see me. I don't have Dementia, my mum does. We are both losing our lives, just in different ways. I want the old me back. I want my life back. I want my mum back. I hate dementia, I hate feeling like this, I hate my husband seeing me like this, I hate seeing myself like this. I hate seeing my mum disappearing into a haze. I hate you dementia with all the hatred in the world.
I could have written this. And it's affecting my kids too. Hate dementia :(
 

Reman

Registered User
Jan 21, 2018
27
Oh yes to your little wants. For four years I longed to go to the toilet alone or sit down in the bath. OH was always there, asking me what we were going to do next. All my sympathy and thoughts. This is beyond hard for thousands of us.
It certainly brings life down to the basics, wanting to go to the toilet in peace and quiet!!
 

Frankie15

Registered User
Dec 13, 2016
17
Life used to be happy, fun and full of laughter. Now, it's sad, isolated and very withdrawn. There's no time to enjoy the morning sun with a cuppa, no time to enjoy prepping dinner, no time to just be and not think. Every day, every minute is wrapped with guilt, worry and feeling miserable. I look out of the window and see flowers and sunshine but I no longer feel the joy they used to bring me. I see my best friend but don't feel the laughter hurting my stomach muscles. I try to sit quietly and think of nothing, just for five minutes, but no it doesn't work. I look in the mirror and I see a middle aged woman looking old and lifeless; I don't see me. I don't have Dementia, my mum does. We are both losing our lives, just in different ways. I want the old me back. I want my life back. I want my mum back. I hate dementia, I hate feeling like this, I hate my husband seeing me like this, I hate seeing myself like this. I hate seeing my mum disappearing into a haze. I hate you dementia with all the hatred in the world.
What powerful words and I'm sure Im not the only person who will have nodded in agreement and cried at recognition of the experience. I hope knowing that you're not alone will go some way to giving you comfort and strength x
 

elvismad

Registered User
Jan 8, 2012
289
Life used to be happy, fun and full of laughter. Now, it's sad, isolated and very withdrawn. There's no time to enjoy the morning sun with a cuppa, no time to enjoy prepping dinner, no time to just be and not think. Every day, every minute is wrapped with guilt, worry and feeling miserable. I look out of the window and see flowers and sunshine but I no longer feel the joy they used to bring me. I see my best friend but don't feel the laughter hurting my stomach muscles. I try to sit quietly and think of nothing, just for five minutes, but no it doesn't work. I look in the mirror and I see a middle aged woman looking old and lifeless; I don't see me. I don't have Dementia, my mum does. We are both losing our lives, just in different ways. I want the old me back. I want my life back. I want my mum back. I hate dementia, I hate feeling like this, I hate my husband seeing me like this, I hate seeing myself like this. I hate seeing my mum disappearing into a haze. I hate you dementia with all the hatred in the world.
I so understand. My life revolves round mum. Although she is in assisted living, it feels as though there is no respite. When I am with her I feel sadness & immeasurable loss, as I see the fear and confusion on her face - she is anxious and tearful when I leave. It is heart breaking. I now have some free time but cannot get her out of my mind when I am not there. I worry constantly, if shopping I am looking for things for mum. I too couldn't care less about clothes & stuff and my standards in my home are slipping. I go through the motions to get out and do things with others but there is no joy. I pretend I am coping because people just don't want to hear the truth of mums condition. Now we are waiting for the outcome of the last assessment form the MH team to see if mum qualifies for a care home environment with a greater level of 1:1 care to ease her distress. I feel as though its all such a battle to get mum what she needs. The guilt I feel for not looking after her myself is debilitating but I know I couldn't have coped a moment longer.
 

kindred

Registered User
Apr 8, 2018
2,340
I so understand. My life revolves round mum. Although she is in assisted living, it feels as though there is no respite. When I am with her I feel sadness & immeasurable loss, as I see the fear and confusion on her face - she is anxious and tearful when I leave. It is heart breaking. I now have some free time but cannot get her out of my mind when I am not there. I worry constantly, if shopping I am looking for things for mum. I too couldn't care less about clothes & stuff and my standards in my home are slipping. I go through the motions to get out and do things with others but there is no joy. I pretend I am coping because people just don't want to hear the truth of mums condition. Now we are waiting for the outcome of the last assessment form the MH team to see if mum qualifies for a care home environment with a greater level of 1:1 care to ease her distress. I feel as though its all such a battle to get mum what she needs. The guilt I feel for not looking after her myself is debilitating but I know I couldn't have coped a moment longer.
Yes, I know, it is a battle and we put on a false self. I tried to be life and soul of the party as I was afraid I would lose even more friends. You have obviously coped for so long, so well done for that. Mainly to say with you every inch of way. Thank you so much for posting.
 

elvismad

Registered User
Jan 8, 2012
289
Yes, I know, it is a battle and we put on a false self. I tried to be life and soul of the party as I was afraid I would lose even more friends. You have obviously coped for so long, so well done for that. Mainly to say with you every inch of way. Thank you so much for posting.
Thank you kindred for understanding
 

Miss Marple

Registered User
May 10, 2018
17
I so understand. My life revolves round mum. Although she is in assisted living, it feels as though there is no respite. When I am with her I feel sadness & immeasurable loss, as I see the fear and confusion on her face - she is anxious and tearful when I leave. It is heart breaking. I now have some free time but cannot get her out of my mind when I am not there. I worry constantly, if shopping I am looking for things for mum. I too couldn't care less about clothes & stuff and my standards in my home are slipping. I go through the motions to get out and do things with others but there is no joy. I pretend I am coping because people just don't want to hear the truth of mums condition. Now we are waiting for the outcome of the last assessment form the MH team to see if mum qualifies for a care home environment with a greater level of 1:1 care to ease her distress. I feel as though its all such a battle to get mum what she needs. The guilt I feel for not looking after her myself is debilitating but I know I couldn't have coped a moment longer.
I hope things pick up for you and please take solace in the fact you are not alone. It is a never ending battle and whatever steps are tried to be taken result in a battle with emotions, family and services. I feel for everyone in this situation.
I so understand. My life revolves round mum. Although she is in assisted living, it feels as though there is no respite. When I am with her I feel sadness & immeasurable loss, as I see the fear and confusion on her face - she is anxious and tearful when I leave. It is heart breaking. I now have some free time but cannot get her out of my mind when I am not there. I worry constantly, if shopping I am looking for things for mum. I too couldn't care less about clothes & stuff and my standards in my home are slipping. I go through the motions to get out and do things with others but there is no joy. I pretend I am coping because people just don't want to hear the truth of mums condition. Now we are waiting for the outcome of the last assessment form the MH team to see if mum qualifies for a care home environment with a greater level of 1:1 care to ease her distress. I feel as though its all such a battle to get mum what she needs. The guilt I feel for not looking after her myself is debilitating but I know I couldn't have coped a moment longer.
I can empathise with you. I'm not looking forward to the years ahead and wish they were not coming. However, we are where we are but take solace knowing you are not alone and listen to the advice given by other members on this forum xxx
 
Last edited:

Miss Marple

Registered User
May 10, 2018
17
I have read many posts on this forum, read books, leaflets and searched the Internet until I don't really know what I'm reading any more. The information out there is vast and somewhat repetitive. However, no matter how much information I am armed with I still keep thinking of the same bit of advice read many times over.

Mum has started taking a tablet now to slow the process down and hopefully stop or reduce at least her hallucinations, we will see.

She has her up days and I treasure the moments she is on these and have started to keep a book for myself of our happy times with photos of days out and times together. I need my memories of mum to be fun and happy. I will not let dementia take the loving person she is away from me.

I've done an awful lot for mum emotionally, mentally and physically and I have reached a real low in my being. But, I've listened to you, I've read what others go through and I've stepped outside of my emotional box and had a good look around me. Yes, I'm tired, scared, worried and tearful. More importantly, I have realised there are family and friends that are there for me and I have to include them and take on their offer of help. I have to take note that I'm not in this alone. I have to do the best for mum yet I also have to do the best for me.

Many times I have read, "your mum will deny help because she has you".

I never really fully understood this as, hand on heart, I thought my mum would never do that to me. Well, I was right, my mum wouldn't do that to me, but, dementia would gladly do that and probably laugh in my face at the same time.

My battle isn't with my mum, it's with dementia. I've separated them and am beginning to slowly see my mum again and not dementia. This in turn is changing our relationship for the better.

We have many roads to wander on this journey; some with great hills to climb some with flowing streams to enjoy.

I wouldn't have started to turn my views around, even if they only last for a while, unless I had read the advice of "your mum will not accept help if she has you". I've taken a step back, mum has started to notice things are different, she in turn is now showing signs of being calmer and taking her time.

Mum said to me on the phone the other night "don't do too much love, I don't want you ending up like me"...
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,498
Yorkshire
good on you @Miss Marple
sometimes someone says something just at the right moment and it changes everything - TP is pretty good at that, many of us have benefited from a kindly, well-timed suggestion
isn't it lovely, too, when the parent of old pops up and says just what we need to hear - good on your mum :)
 

Rolypoly

Registered User
Jan 15, 2018
2,319
Well done @Miss Marple for making things better for you and your mum. My mum has said to me that I should be out doing things for me, it’s not mum stopping my ‘me time’, it’s that blasted dementia. It stealthy takes over your life, bit by bit, without you realising. It is now a major part of my every day life and thinking, and life, every thing, revolves around it. I keep positive but sometimes it gets too much, but there is nowhere to hide. Like you, I treasure the good moments and the getting rarer lucid times. Confusion is now the norm. Wishing you and your mum well.
 

kindred

Registered User
Apr 8, 2018
2,340
Well done @Miss Marple for making things better for you and your mum. My mum has said to me that I should be out doing things for me, it’s not mum stopping my ‘me time’, it’s that blasted dementia. It stealthy takes over your life, bit by bit, without you realising. It is now a major part of my every day life and thinking, and life, every thing, revolves around it. I keep positive but sometimes it gets too much, but there is nowhere to hide. Like you, I treasure the good moments and the getting rarer lucid times. Confusion is now the norm. Wishing you and your mum well.
Thank you, you express this so well. Dementia is a hungry beast and will take up our thinking space. It's very hard to resist this. We are so brilliant in that we can function in the real world when for us, confusion is the norm.