APPROACHING END WITH MUM : EVERY DAY IS DIFFERENT

[Jezzer]

Jazzer, Thank you for sharing and to all for your words...when my mother was first diagnosed I’m sorry to say that after a few months I broke down in front of her, crying for myself because I knew one day she would forget me. That was 7 years ago (haven’t done it in front of her since) and she hasn’t forgotten me yet. She does forget a lot of things and people, can’t remember family names, but I know she is the same person somehow, just ‘locked in’ sometimes unable to articulate. Sometimes I can’t accept that she has Alzheimer’s although I just try to focus on making her life as stress free and comfortable as possible. She is in extra care sheltered but still needs family contact and me to look out for her and sort out her affairs. This post got to me and reminded me that people on this forum understand, don’t judge and share experiences. I find it a comfort to be able to share and have the utmost respect for the regulars and moderators who give their

Jazzer, Thank you for sharing and to all for your words...when my mother was first diagnosed I’m sorry to say that after a few months I broke down in front of her, crying for myself because I knew one day she would forget me. That was 7 years ago (haven’t done it in front of her since) and she hasn’t forgotten me yet. She does forget a lot of things and people, can’t remember family names, but I know she is the same person somehow, just ‘locked in’ sometimes unable to articulate. Sometimes I can’t accept that she has Alzheimer’s although I just try to focus on making her life as stress free and comfortable as possible. She is in extra care sheltered but still needs family contact and me to look out for her and sort out her affairs. This post got to me and reminded me that people on this forum understand, don’t judge and share experiences. I find it a comfort to be able to share and have the utmost respect for the regulars and moderators who give their time so selflessly. Thank you
Sue x

Oh Sue. Why sorry to say you broke down in front of your mum? God knows we struggle every day to keep our tears at bay yet we are human and sometimes we are just unable to stop them. And why shouldnt you cry for yourself? There is no shame in that. God knows I've cried for myself as well as mum. Why do we beat ourselves up so badly? You are a loving, caring daughter, doing as much as you can to help and support your mum. And that's the thing - "doing as much as we can". None of us signed up for this. Thrown into a nightmare, not really knowing, but dreading what lay ahead. Each one of us struggles but we learn, somehow, to do our best for those we love. There's no instruction manual. We suddenly find the rug pulled from under us and we just have to grab onto what we can and deal with this unwanted, alien and frightening new world. I've never truly accepted mum's condition and I dont think I ever will. She doesn't deserve this, nor does your dear mum and all the other sufferers of the many and varied, but always awful, forms of this condition. Nor do any of us carers so yes, we are perfectly entitled to cry for ourselves. It's not self-pity, it's because we are hurting badly. I too have the utmost respect for everyone who shares on TP and that includes you. Thank you for your post. It's helped me and others too, I'm sure. Your mum will always love you and always know you are there. With love and hugs, Jan xxxx

 

[kindred]

Oh Sue. Why sorry to say you broke down in front of your mum? God knows we struggle every day to keep our tears at bay yet we are human and sometimes we are just unable to stop them. And why shouldnt you cry for yourself? There is no shame in that. God knows I've cried for myself as well as mum. Why do we beat ourselves up so badly? You are a loving, caring daughter, doing as much as you can to help and support your mum. And that's the thing - "doing as much as we can". None of us signed up for this. Thrown into a nightmare, not really knowing, but dreading what lay ahead. Each one of us struggles but we learn, somehow, to do our best for those we love. There's no instruction manual. We suddenly find the rug pulled from under us and we just have to grab onto what we can and deal with this unwanted, alien and frightening new world. I've never truly accepted mum's condition and I dont think I ever will. She doesn't deserve this, nor does your dear mum and all the other sufferers of the many and varied, but always awful, forms of this condition. Nor do any of us carers so yes, we are perfectly entitled to cry for ourselves. It's not self-pity, it's because we are hurting badly. I too have the utmost respect for everyone who shares on TP and that includes you. Thank you for your post. It's helped me and others too, I'm sure. Your mum will always love you and always know you are there. With love and hugs, Jan xxxx

Darling Jan, what a beautiful, heartfelt post. Thank you with all heart. all love, Geraldinexxx

 

[Jezzer]

Hello my friends
Well I have mixed emotions as I write this post - surprise, discomfort, unease. gratitude,sadness.Arrived at CH to find mum's door closed which meant the staff were readying her for the day. Had a walk and passed a room containing a resident who was being verbally abusive to a carer and loudly so. Awful, vile language. I know he doesn't have dementia but he wouldn't be in the CH were he not very ill. Carer, who is a particularly kind and supportive lady, emerged in tears and I have to say I would probably have done the same. She asked if I had overheard what he had said and I replied that I had. I suspect I may be asked to give an account of what I heard and if so, I will. I have no wish to cause trouble but I heard what was said - I had no choice since I was walking past as the abuse was shouted at the lady and it was shocking. Oh dear, not a good start. By the time I arrived back at mum's room and to my utter amazement she was dressed and in her wheelchair! First time out of bed for almost two months. She gave me her lovely smile and I could have wept. I was shocked though at how she has changed. A big drop in weight, stick-like legs and oh so frail. She was quite disoriented but I think that's not unusual given she's been bed bound for so long. I wheeled her into the garden where she was warmly greeted by other residents. She seemed delighted to be in the sunshine and fresh air and we sat for about 30 minutes before she asked to go back inside. Once back we sat and I told her about what my brother and I had been doing etc. I'm not sure if anything registered because all that she said made no sense but, as usual, I stepped into her world. Then she looked at me, her face so sad, and said clearly "Am I going funny?". It was like a few seconds of clarity and realisation that things were very wrong somehow. I hugged her and said " No mum, you have been very poorly and are being looked after until you get really better". A lie I know but it seemed to reassure her. I told her, again as I always do, that she has done her shopping and tidying up for the day, that all is well, that she has nothing to worry about and that she can relax. That always seems to do the trick. I'm not sure why I feel so sad. It was lovely to see her in her matching skirt and top and out of that bed but she looked so tiny, frail and frightened. Asking me if she was "going funny" is worrying me. I hope this will not continue to confuse and distress her. To suddenly realise that you are losing your mind must be terrible. She was smiling when I left. God, I really have gone on and on haven't I? Sorry. Just had to get this out. I feel so oddly unsettled. Now I need to snap out of it and get on with some much required housework. Thanks for bearing with me through this long post. Sending love and best wishes to all xxx

 

[kindred]

Hello my friends
Well I have mixed emotions as I write this post - surprise, discomfort, unease. gratitude,sadness.Arrived at CH to find mum's door closed which meant the staff were readying her for the day. Had a walk and passed a room containing a resident who was being verbally abusive to a carer and loudly so. Awful, vile language. I know he doesn't have dementia but he wouldn't be in the CH were he not very ill. Carer, who is a particularly kind and supportive lady, emerged in tears and I have to say I would probably have done the same. She asked if I had overheard what he had said and I replied that I had. I suspect I may be asked to give an account of what I heard and if so, I will. I have no wish to cause trouble but I heard what was said - I had no choice since I was walking past as the abuse was shouted at the lady and it was shocking. Oh dear, not a good start. By the time I arrived back at mum's room and to my utter amazement she was dressed and in her wheelchair! First time out of bed for almost two months. She gave me her lovely smile and I could have wept. I was shocked though at how she has changed. A big drop in weight, stick-like legs and oh so frail. She was quite disoriented but I think that's not unusual given she's been bed bound for so long. I wheeled her into the garden where she was warmly greeted by other residents. She seemed delighted to be in the sunshine and fresh air and we sat for about 30 minutes before she asked to go back inside. Once back we sat and I told her about what my brother and I had been doing etc. I'm not sure if anything registered because all that she said made no sense but, as usual, I stepped into her world. Then she looked at me, her face so sad, and said clearly "Am I going funny?". It was like a few seconds of clarity and realisation that things were very wrong somehow. I hugged her and said " No mum, you have been very poorly and are being looked after until you get really better". A lie I know but it seemed to reassure her. I told her, again as I always do, that she has done her shopping and tidying up for the day, that all is well, that she has nothing to worry about and that she can relax. That always seems to do the trick. I'm not sure why I feel so sad. It was lovely to see her in her matching skirt and top and out of that bed but she looked so tiny, frail and frightened. Asking me if she was "going funny" is worrying me. I hope this will not continue to confuse and distress her. To suddenly realise that you are losing your mind must be terrible. She was smiling when I left. God, I really have gone on and on haven't I? Sorry. Just had to get this out. I feel so oddly unsettled. Now I need to snap out of it and get on with some much required housework. Thanks for bearing with me through this long post. Sending love and best wishes to all xxx

Never mind the housework my darling, this is far more important. My goodness, what an experience, and first of all with your beloved mum in a wheelchair and smiling at you, and your conversation. I am astonished and thrilled for you and totally understand the sadness. Of course I do.
But that abusive (sorry it's gone bold, God knows why) episode. I am so very sorry. Also as the carer was alone, there was no one to share it with, if you see what I mean. I am so sorry about the shock for you, too. God, this is difficult isn't it darling. What experiences we go through, how our emotions get pulled about to extremes. all my love, so pleased about beloved mum. Geraldinexxx

 

[canary]

Then she looked at me, her face so sad, and said clearly "Am I going funny?". It was like a few seconds of clarity and realisation that things were very wrong somehow. I hugged her and said " No mum, you have been very poorly and are being looked after until you get really better". A lie I know but it seemed to reassure her.

That was exactly the right response.
I remember when mum had sudden insight and told me "Ive lost my memory - what is happening to me?" and I too just hugged her and said "yes, I know - we are all looking after you"

 

[Jezzer]

Thanks so much @canary What I don't understand is why I feel so unsettled. It's not the business with the abusive resident. It concerns mum. There's something that doesn't sit right. Yes she's had bounce-backs before but to go from bed-bound and periods of locked in to sitting in a wheelchair, smiling? I sound as if I'm not happy about it. I AM, REALLY!!!! but how can this be?

 

[Lindy50]

Hello my friends
Well I have mixed emotions as I write this post - surprise, discomfort, unease. gratitude,sadness.Arrived at CH to find mum's door closed which meant the staff were readying her for the day. Had a walk and passed a room containing a resident who was being verbally abusive to a carer and loudly so. Awful, vile language. I know he doesn't have dementia but he wouldn't be in the CH were he not very ill. Carer, who is a particularly kind and supportive lady, emerged in tears and I have to say I would probably have done the same. She asked if I had overheard what he had said and I replied that I had. I suspect I may be asked to give an account of what I heard and if so, I will. I have no wish to cause trouble but I heard what was said - I had no choice since I was walking past as the abuse was shouted at the lady and it was shocking. Oh dear, not a good start. By the time I arrived back at mum's room and to my utter amazement she was dressed and in her wheelchair! First time out of bed for almost two months. She gave me her lovely smile and I could have wept. I was shocked though at how she has changed. A big drop in weight, stick-like legs and oh so frail. She was quite disoriented but I think that's not unusual given she's been bed bound for so long. I wheeled her into the garden where she was warmly greeted by other residents. She seemed delighted to be in the sunshine and fresh air and we sat for about 30 minutes before she asked to go back inside. Once back we sat and I told her about what my brother and I had been doing etc. I'm not sure if anything registered because all that she said made no sense but, as usual, I stepped into her world. Then she looked at me, her face so sad, and said clearly "Am I going funny?". It was like a few seconds of clarity and realisation that things were very wrong somehow. I hugged her and said " No mum, you have been very poorly and are being looked after until you get really better". A lie I know but it seemed to reassure her. I told her, again as I always do, that she has done her shopping and tidying up for the day, that all is well, that she has nothing to worry about and that she can relax. That always seems to do the trick. I'm not sure why I feel so sad. It was lovely to see her in her matching skirt and top and out of that bed but she looked so tiny, frail and frightened. Asking me if she was "going funny" is worrying me. I hope this will not continue to confuse and distress her. To suddenly realise that you are losing your mind must be terrible. She was smiling when I left. God, I really have gone on and on haven't I? Sorry. Just had to get this out. I feel so oddly unsettled. Now I need to snap out of it and get on with some much required housework. Thanks for bearing with me through this long post. Sending love and best wishes to all xxx

Oh my dear @Jezzer , what an amazing post! Every day is different, indeed.. ..
So sorry to hear about the abusive lady, I think sometimes we can forget how much staff have to manage. Well done for agreeing to confirm events if necessary.....not that you want to have to.
And your dear, dear mum....what can I say? She sounds so lovely, and you obviously have a wonderful relationship. My mum too is like a little bird, a baby wren even, I wouldn't dare ask how much or little she weighs. It's so jarring too to sometimes see her wearing the outfits I so carefully chose years ago, and that now hang off her and yet still remind me of days gone by, and of the person she is.
Mum often pleads to know why she is being kept away from home, she has no inkling that there is anything wrong. She can't mobilise at all but always says "I won't get up", when I leave....I have to smile. Anyway the line that works best is when I tell her she fell, and was in hospital, and is now here because she needs time to recover (love lie alert!) And I say the staff here are lovely mum, aren't they, and she replies oh yes, and then we're off on another topic.
I hope your mum doesn't continue to worry about "going funny". Hopefully it was just a blip
Hope you're relaxing now, even if it does involve housework. One of my big de-stressers is cleaning cupboards!
Love,
Lindy xx

 

[Jezzer]

Never mind the housework my darling, this is far more important. My goodness, what an experience, and first of all with your beloved mum in a wheelchair and smiling at you, and your conversation. I am astonished and thrilled for you and totally understand the sadness. Of course I do.
But that abusive (sorry it's gone bold, God knows why) episode. I am so very sorry. Also as the carer was alone, there was no one to share it with, if you see what I mean. I am so sorry about the shock for you, too. God, this is difficult isn't it darling. What experiences we go through, how our emotions get pulled about to extremes. all my love, so pleased about beloved mum. Geraldinexxx

Thank you Geraldine. I too am pleased about mum but also unnerved. It sounds silly I know but I can't shake it. With Love as always. Jan xxxx

 

[canary]

Its always unnerving when you think that you are looking at the end, only for them to bounce back. There is an emotional screeching of wheels as you suddenly break, turn round through 180 degrees and then you are off again in the opposite direction.
Its what dementia does. I was told 3 times that mum would not survive, only for her to be up dressed, eating and drinking having obviously bounced back.
Its an emotional roller coaster

 

[Lindy50]

Thanks so much @canary What I don't understand is why I feel so unsettled. It's not the business with the abusive resident. It concerns mum. There's something that doesn't sit right. Yes she's had bounce-backs before but to go from bed-bound and periods of locked in to sitting in a wheelchair, smiling? I sound as if I'm not happy about it. I AM, REALLY!!!! but how can this be?

One part of me wants to say, trust your feelings on this one...
A bigger part says that you were unsettled by what you heard of the other resident, and then further shocked to see your mum apparently so much 'better'. Is it possible to know why she has been bed bound? Has a new carer come in and tried a different tack?
Honestly I think it's a shock when you see anyone dressed and 'up for it' after they've been ill in bed. This will be redoubled in your mum's situation.
Sorry, I'm rambling / prattling
Love and hugs
Lindy xx

 

[Jezzer]

Oh my dear @Jezzer , what an amazing post! Every day is different, indeed.. ..
So sorry to hear about the abusive lady, I think sometimes we can forget how much staff have to manage. Well done for agreeing to confirm events if necessary.....not that you want to have to.
And your dear, dear mum....what can I say? She sounds so lovely, and you obviously have a wonderful relationship. My mum too is like a little bird, a baby wren even, I wouldn't dare ask how much or little she weighs. It's so jarring too to sometimes see her wearing the outfits I so carefully chose years ago, and that now hang off her and yet still remind me of days gone by, and of the person she is.
Mum often pleads to know why she is being kept away from home, she has no inkling that there is anything wrong. She can't mobilise at all but always says "I won't get up", when I leave....I have to smile. Anyway the line that works best is when I tell her she fell, and was in hospital, and is now here because she needs time to recover (love lie alert!) And I say the staff here are lovely mum, aren't they, and she replies oh yes, and then we're off on another topic.
I hope your mum doesn't continue to worry about "going funny". Hopefully it was just a blip
Hope you're relaxing now, even if it does involve housework. One of my big de-stressers is cleaning cupboards!
Love,
Lindy xx

Thanks so much Lindy. I identify with everything, every word you say and I think I know what's bothering me and what you, like me, hope is a blip. It's that question "am I going funny". I hope the realisation that all is not well mentally is not still distressing mum. The thought that she's sitting there alone, realising she's in a home and struggling to deal with the fact she has dementia is really upsetting me. I hope this makes sense.
Your little mum sounds lovely too, as are you.
Thank you again. Love & hugs xxxx

 

[kindred]

Thanks so much @canary What I don't understand is why I feel so unsettled. It's not the business with the abusive resident. It concerns mum. There's something that doesn't sit right. Yes she's had bounce-backs before but to go from bed-bound and periods of locked in to sitting in a wheelchair, smiling? I sound as if I'm not happy about it. I AM, REALLY!!!! but how can this be?

Because you are wonderfully normal and this of course, does your head in darling. Brain is struggling. Gxxx

 

[canary]

It's that question "am I going funny". I hope the realisation that all is not well mentally is not still distressing mum

With mum, after I had reassured her, the moment of lucidity was gone

 

[Jezzer]

One part of me wants to say, trust your feelings on this one...
A bigger part says that you were unsettled by what you heard of the other resident, and then further shocked to see your mum apparently so much 'better'. Is it possible to know why she has been bed bound? Has a new carer come in and tried a different tack?
Honestly I think it's a shock when you see anyone dressed and 'up for it' after they've been ill in bed. This will be redoubled in your mum's situation.
Sorry, I'm rambling / prattling
Love and hugs
Lindy xx

Our posts crossed I think! Mum was/is bed bound because she can no longer hold her own weight, even with the frame. And now you mention it, there was a new (new to the home) carer who, along with another, who was with her today. I think the best t hing is for me to have a chat with the Senior Nurse tomorrow. I can almost drive myself crazy with my thoughts at times! Thanks again Love Jan

 

[Jezzer]

With mum, after I had reassured her, the moment of lucidity was gone

Thank you, I hope that moment has gone x

 

[Jezzer]

Its always unnerving when you think that you are looking at the end, only for them to bounce back. There is an emotional screeching of wheels as you suddenly break, turn round through 180 degrees and then you are off again in the opposite direction.
Its what dementia does. I was told 3 times that mum would not survive, only for her to be up dressed, eating and drinking having obviously bounced back.
Its an emotional roller coaster

It most certainly is. Thank you xx

 

[Bunpoots]

Thanks so much Lindy. I identify with everything, every word you say and I think I know what's bothering me and what you, like me, hope is a blip. It's that question "am I going funny". I hope the realisation that all is not well mentally is not still distressing mum. The thought that she's sitting there alone, realising she's in a home and struggling to deal with the fact she has dementia is really upsetting me. I hope this makes sense.
Your little mum sounds lovely too, as are you.
Thank you again. Love & hugs xxxx

I have some inkling of how you feel. My dad remains blissfully unaware that anything is wrong with him most of the time but he has recently asked me if he's "going potty". I've managed to reassure him - but it does upset me when it happens. But most of the time he has no idea. I suspect this is true for your mum too. She'll have forgotten about it.

I think your response to her question was spot on.

 

[Jezzer]

I have some inkling of how you feel. My dad remains blissfully unaware that anything is wrong with him most of the time but he has recently asked me if he's "going potty". I've managed to reassure him - but it does upset me when it happens. But most of the time he has no idea. I suspect this is true for your mum too. She'll have forgotten about it.

I think your response to her question was spot on.

Thank you so much. Your wonderful responses are calming me down now! xx

 

[carolynp]

Oh Sue. Why sorry to say you broke down in front of your mum? God knows we struggle every day to keep our tears at bay yet we are human and sometimes we are just unable to stop them. And why shouldnt you cry for yourself? There is no shame in that. God knows I've cried for myself as well as mum. Why do we beat ourselves up so badly? You are a loving, caring daughter, doing as much as you can to help and support your mum. And that's the thing - "doing as much as we can". None of us signed up for this. Thrown into a nightmare, not really knowing, but dreading what lay ahead. Each one of us struggles but we learn, somehow, to do our best for those we love. There's no instruction manual. We suddenly find the rug pulled from under us and we just have to grab onto what we can and deal with this unwanted, alien and frightening new world. I've never truly accepted mum's condition and I dont think I ever will. She doesn't deserve this, nor does your dear mum and all the other sufferers of the many and varied, but always awful, forms of this condition. Nor do any of us carers so yes, we are perfectly entitled to cry for ourselves. It's not self-pity, it's because we are hurting badly. I too have the utmost respect for everyone who shares on TP and that includes you. Thank you for your post. It's helped me and others too, I'm sure. Your mum will always love you and always know you are there. With love and hugs, Jan xxxx

Every single word of this message is such a huge comfort. The bit about the rug pulled out from under our feet struck a particular chord. Thank you so much. C. xxxxx

 

[Jezzer]

Sending Love and Hugs @carolynp xxxxx