You're pretty amazing the way you cope Annie. I think you're allowed tears. I wanted to cry again today. Do you think it's the moon's influence???? 
Am I losing her?
- Thread starter florence43
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Dear Annie and Pied,
Reading your descriptions of your mothers makes me realise that I am not the only one watching someone I love fade away.
Annie, the spasms are because the damage to the brain is now global and all movement is involuntary. My mum throws in the odd seizure for good measure to keep us on our toes. She is on sodium valproate which seems to help slightly.
Mum is mostly bedridden now and the contractures have become more marked, she seems not to be in pain though, which is a relief. When I visited today, they had moved her to the conservatory as it was such a beautiful day. I really appreciated it as it is hard work moving her. I think she knew I was there, I imagine I saw a small smile.
It is awful to watch and feel so helpless. All we can hope is that they are kept comfortable and don't suffer.
Thinking of you both,
Love,
Jeanne x
Reading your descriptions of your mothers makes me realise that I am not the only one watching someone I love fade away.
Annie, the spasms are because the damage to the brain is now global and all movement is involuntary. My mum throws in the odd seizure for good measure to keep us on our toes. She is on sodium valproate which seems to help slightly.
Mum is mostly bedridden now and the contractures have become more marked, she seems not to be in pain though, which is a relief. When I visited today, they had moved her to the conservatory as it was such a beautiful day. I really appreciated it as it is hard work moving her. I think she knew I was there, I imagine I saw a small smile.
It is awful to watch and feel so helpless. All we can hope is that they are kept comfortable and don't suffer.
Thinking of you both,
Love,
Jeanne x
Annie, my pet, my thoughts are with you. I know exactly what you mean when you say she was here but it was different. It seems to me to be a part of the journey of separation that is to come, a distancing. As I have said before there is nothing you can do to prevent it but give her your blessing to go and give her your love to take with her when the time comes , I hope it will be peaceful and for now, all you can do is love her. Maureen.x.
Thank you again...
Pied, so many of us are side by side here, but our mums are particularly close in terms of their stages and how it affects us. I know we will be right there for each other later down the line, and it's a great comfort.
Jeanne, thank you for the explanation of why she spasms. I've wondered for so long, thinking strokes and all sorts, but this makes sense to me. It also saddens me, as it's another physical sign of deterioration that reminds me constantly of her stage.
Maureen, thank you for speaking so kindly. You talk like my mum would have, full of love, practical advice and kindness.
But I'm scared to say she can go. What if she hears me and thinks I want her to go? I'm frightened, and the only way I know how to be is light and airy, like we were sitting in the kitchen having a cuppa. I seem to go to autopilot and naively think that if she hears normal chatter, she'll feel normal. If I change tact, and say it's ok to leave, will it make her sad? (I know the answer to this, but with my head in sand I like to think her thought processes and feelings are still the same, just "trapped").
My eyes still hurt, but I have managed to dance with my children today, have a few tickles and laughter and I feel ok with that.
It's all about balance and stepping off the fairground ride now and then. Stay on too long and you don't feel like yourself anymore.
Love to all,
Pied, so many of us are side by side here, but our mums are particularly close in terms of their stages and how it affects us. I know we will be right there for each other later down the line, and it's a great comfort.
Jeanne, thank you for the explanation of why she spasms. I've wondered for so long, thinking strokes and all sorts, but this makes sense to me. It also saddens me, as it's another physical sign of deterioration that reminds me constantly of her stage.
Maureen, thank you for speaking so kindly. You talk like my mum would have, full of love, practical advice and kindness.
But I'm scared to say she can go. What if she hears me and thinks I want her to go? I'm frightened, and the only way I know how to be is light and airy, like we were sitting in the kitchen having a cuppa. I seem to go to autopilot and naively think that if she hears normal chatter, she'll feel normal. If I change tact, and say it's ok to leave, will it make her sad? (I know the answer to this, but with my head in sand I like to think her thought processes and feelings are still the same, just "trapped").
My eyes still hurt, but I have managed to dance with my children today, have a few tickles and laughter and I feel ok with that.
It's all about balance and stepping off the fairground ride now and then. Stay on too long and you don't feel like yourself anymore.
Love to all,
So sad for you but your mum won't feel this sad.
I am so very very sorry for you and your family. This is the most difficult thing to have to cope with and to get through. However, despite all of your pain, I believe your mum is now in a place where she does not feel this distress...for which you can be thankful. In order to cope you have to be strong enough to give yourself a happy moment on a regular basis to keep your life as normal as possible. Depression and crying is normal when you love someone but you must keep your spirits up in order to carry on. I hope you get some peaceful moments but sometimes these have to be worked on i.e. put yourself in situations where you can have a moment of fun or appreciation of life. It is not wrong to do this it is your own personal medication. One day you will look back and remember all of the good times shared with your mum no matter what you go through now.
I am so very very sorry for you and your family. This is the most difficult thing to have to cope with and to get through. However, despite all of your pain, I believe your mum is now in a place where she does not feel this distress...for which you can be thankful. In order to cope you have to be strong enough to give yourself a happy moment on a regular basis to keep your life as normal as possible. Depression and crying is normal when you love someone but you must keep your spirits up in order to carry on. I hope you get some peaceful moments but sometimes these have to be worked on i.e. put yourself in situations where you can have a moment of fun or appreciation of life. It is not wrong to do this it is your own personal medication. One day you will look back and remember all of the good times shared with your mum no matter what you go through now.
I know what you mean about taking a break, keeps us sane, doesn't it?
Your kids must be a great solace to you just now.
Does your mum hiccup? I have read that is because of damage to the brain stem. My mum hiccups all the time on and off and sometimes they are unfeasibly violent, scary hiccups.
Your kids must be a great solace to you just now.
Does your mum hiccup? I have read that is because of damage to the brain stem. My mum hiccups all the time on and off and sometimes they are unfeasibly violent, scary hiccups.
Small cough...
Mum used to hiccup. But she doesn't anymore. I wonder if it's because she eats so slowly, and with such tiny mouthfuls. It's all mushy too. That's interesting, what you say, Pied. There are so many things I'm learning here, and I still, even so far down the line, feel the need to fit the missing pieces into the puzzle. Just like with the spasms...not happy to just know she does it. want to know why.
But mum is coughing a little after fluids. It could be that she's drinking too fast? (I say, naively, again...) but the cough is all from the throat, very dry and uncomfortable. It's not a chesty cough, or phlegm, it doesn't involve much breath or any gasping for air, and she doesn't rattle when she breathes, it's always after a drink. Just a dry, cough in her mouth, and it looks like hard work for her.
Does anyone know what this is? (I think I can hazard a small guess). I want to know, but don't want to. I feel like I'm writing about someone else...not my mum. There's a huge part of me that won't accept she'll ever get to "that stage" or that I'll ever get "that phonecall" and need to post "that thread".
Maybe I'm practicing?
Mum used to hiccup. But she doesn't anymore. I wonder if it's because she eats so slowly, and with such tiny mouthfuls. It's all mushy too. That's interesting, what you say, Pied. There are so many things I'm learning here, and I still, even so far down the line, feel the need to fit the missing pieces into the puzzle. Just like with the spasms...not happy to just know she does it. want to know why.
But mum is coughing a little after fluids. It could be that she's drinking too fast? (I say, naively, again...) but the cough is all from the throat, very dry and uncomfortable. It's not a chesty cough, or phlegm, it doesn't involve much breath or any gasping for air, and she doesn't rattle when she breathes, it's always after a drink. Just a dry, cough in her mouth, and it looks like hard work for her.
Does anyone know what this is? (I think I can hazard a small guess). I want to know, but don't want to. I feel like I'm writing about someone else...not my mum. There's a huge part of me that won't accept she'll ever get to "that stage" or that I'll ever get "that phonecall" and need to post "that thread".
Maybe I'm practicing?
Thanks Kassy,
I think I might do that. The carers don't mention it to me as a common problem, but I'm aware that they're not necessarily hearing the alarm bells or seeing the signs when it comes to late stage dementia. I have seen a carer give mum a drink and when she coughed, the carer just waited patiently for her to finish, then carried on, but didn't seem overly worried by it.
May I ask what the district nurse concluded with your mum, Kassy? I won't take it as read that mum is the same but at least I can ask the district nurse to rule in or out certain problems.
Love,
I think I might do that. The carers don't mention it to me as a common problem, but I'm aware that they're not necessarily hearing the alarm bells or seeing the signs when it comes to late stage dementia. I have seen a carer give mum a drink and when she coughed, the carer just waited patiently for her to finish, then carried on, but didn't seem overly worried by it.
May I ask what the district nurse concluded with your mum, Kassy? I won't take it as read that mum is the same but at least I can ask the district nurse to rule in or out certain problems.
Love,
sorry you are having such bad time annie i think we all want to know the truth about things that are happening with our love ones but deep down we dont want to except it
mum coughs after eating or drinking sometime choking she had a swallow test before we come away and they said that when she swallows it takes along time to go down and that i should only give her small sips of drink at a time hope tomorrow is a better day for you love larivy
mum coughs after eating or drinking sometime choking she had a swallow test before we come away and they said that when she swallows it takes along time to go down and that i should only give her small sips of drink at a time hope tomorrow is a better day for you love larivy
Thanks Larivy. Again, that makes common sense when you put it like that.
Mum doesn't respond to a straw the 1st 2 or 3 times I put it in her mouth, so I drop a few drips of drink on her lips then put it back in and it's like a button has been pushed and she starts sucking. But then she drinks like a thirsty child, sucking with all her might, and can down a glassful in seconds. I will have to work on a method of giving her small sips, without confusing her more whilst also making sure she's getting enough.
She always seems so thirsty. Or maybe she just sucks until it's finished because she's started...so she'll finish. Don't know. Her fluids chart says she's being well-watered....
Totally at a loss.
Mum doesn't respond to a straw the 1st 2 or 3 times I put it in her mouth, so I drop a few drips of drink on her lips then put it back in and it's like a button has been pushed and she starts sucking. But then she drinks like a thirsty child, sucking with all her might, and can down a glassful in seconds. I will have to work on a method of giving her small sips, without confusing her more whilst also making sure she's getting enough.
She always seems so thirsty. Or maybe she just sucks until it's finished because she's started...so she'll finish. Don't know. Her fluids chart says she's being well-watered....
Totally at a loss.
hi annie sending a big hug !!!!
i wish i could put my arms round you and say it will be ok! but we know that's not the case! i understand how you feel been there like lots of other people have! my mum was very similar to yours but she may be getting tired ! may be she needs your blessing ! we don't want to loose them but we also don't want them to suffer any more not sure if this makes sense what im trying to say
i wish i could put my arms round you and say it will be ok! but we know that's not the case! i understand how you feel been there like lots of other people have! my mum was very similar to yours but she may be getting tired ! may be she needs your blessing ! we don't want to loose them but we also don't want them to suffer any more not sure if this makes sense what im trying to say
Hi Annie
I've had tears running down my face while reading this thread.......I can't answer honey, maybe its because i've been there before and know how your feeling and can't face going there again with my Mum just yet......all i can say is your in my thoughts.
Kind regards
Alex x
I've had tears running down my face while reading this thread.......I can't answer honey, maybe its because i've been there before and know how your feeling and can't face going there again with my Mum just yet......all i can say is your in my thoughts.
Kind regards
Alex x
Thanks Kassy.
Funny because I was mulling this over in my head this morning and I remembered your mum wasn't in a Nursing Home, and the district nurse bit made sense then.
I did, in fact, call the home this morning, and chatted it over with the staff nurse and she said it hadn't been a worry to any of the staff that mum can cough a little. They say she still eats 3 meals a day and can drink, both of which need gentle encouragement and plenty of time, but since that is all stable, they haven't been given any cause for concern.
She agreed with the pain worries I have and said it is very difficult. They have the Oromorph for the big moves (baths) or when she shows signs of severe pain, but just use paracetamol 4 times a day otherwise.
I said I might ask the GP to come and just assess her, for our piece of mind and general understanding of her current condition. Obviously I made it very clear that it had nothing to do with the standard of care or nursing, because we're very happy with that. Her GP is a geriatric specialist whose father had dementia and I think she could just enlighten me, and also check that there is/isn't any more we could do to make mum comfortable.
Hope I wouldn't be wasting her time. What do you think?
Funny because I was mulling this over in my head this morning and I remembered your mum wasn't in a Nursing Home, and the district nurse bit made sense then.
I did, in fact, call the home this morning, and chatted it over with the staff nurse and she said it hadn't been a worry to any of the staff that mum can cough a little. They say she still eats 3 meals a day and can drink, both of which need gentle encouragement and plenty of time, but since that is all stable, they haven't been given any cause for concern.
She agreed with the pain worries I have and said it is very difficult. They have the Oromorph for the big moves (baths) or when she shows signs of severe pain, but just use paracetamol 4 times a day otherwise.
I said I might ask the GP to come and just assess her, for our piece of mind and general understanding of her current condition. Obviously I made it very clear that it had nothing to do with the standard of care or nursing, because we're very happy with that. Her GP is a geriatric specialist whose father had dementia and I think she could just enlighten me, and also check that there is/isn't any more we could do to make mum comfortable.
Hope I wouldn't be wasting her time. What do you think?
Hi Annie, I've just managed to read this thread right through for the first time without crying. My heart goes out to you and crying does you good I did a lot before and after losing my Dad. We don't need to be medically qualified to know when things have changed just enjoy your time with your Mum that's what we did with Dad its still awful at the the end but knowing that you did everything that you could makes it so much easier to deal with. Thinking of you and sending a big ((((((HUG))))))
Dear Annie,
I have just read through your thread and it has touched my heart. I am sorry that it has taken until now for me to catch up. You are always there to support everyone and I am glad to see that you are being supported yourself now in your time of need
This reminded me of myself!!! The tears just dropped out of my eyes.
Please do contact the GP if you need reassurance Annie. You will not be wasting anyone's time. You don't seem like a time waster to me It is important that you do everything you can to be able to live with what is happening at some later stage and it will always save you from having to say "I wish I'd done this" or "I wish I'd done that". I told my GP that I needed to question things in order to spare myself regrets later on and she not only understood but was pleased that I was able to look after myself.
I empathise with your distress Annie at seeing your mother's fragile self and I only wish I knew of a way to ease the pain and anguish.
Love and a (HUG) xx
I have just read through your thread and it has touched my heart. I am sorry that it has taken until now for me to catch up. You are always there to support everyone and I am glad to see that you are being supported yourself now in your time of need
This reminded me of myself!!! The tears just dropped out of my eyes.
Please do contact the GP if you need reassurance Annie. You will not be wasting anyone's time. You don't seem like a time waster to me
It is important that you do everything you can to be able to live with what is happening at some later stage and it will always save you from having to say "I wish I'd done this" or "I wish I'd done that". I told my GP that I needed to question things in order to spare myself regrets later on and she not only understood but was pleased that I was able to look after myself.I empathise with your distress Annie at seeing your mother's fragile self and I only wish I knew of a way to ease the pain and anguish.
Love and a (HUG) xx
I am so sorry to hear your pain and hope that you can gain comfort from all the well wishers. My mom is now in a nursing home and we were told last Wednesday that her body is shutting down - her fingers and toes have gone dark blue/purple. She barely eats or drinks and sleeps a lot. However she beams when she sees my 2 kids (young adults really) who have been a tower of strength and I cherish those moments. The home have implemented the Liverpool Pathway end of life care plan and I live in dread of the phone going at the moment. This is so difficult, my brother says she seems brighter today which worries me as I know this often happens before the end.
mine too
Annie, my Mum is sometimes as you describe yours and yet she rallies some days and then she is still alert and they sit her in a "jelly" chair and I push her around the place. My Mum was a Sussex lass and they bred them tough down there.
I go to see Mum twice a week and sometimes her condition moves me to tears. I always say: "see you soon love" as I go as I don't know if there will be a next time.
Sue.
Annie, my Mum is sometimes as you describe yours and yet she rallies some days and then she is still alert and they sit her in a "jelly" chair and I push her around the place. My Mum was a Sussex lass and they bred them tough down there.
I go to see Mum twice a week and sometimes her condition moves me to tears. I always say: "see you soon love" as I go as I don't know if there will be a next time.
Sue.
Hello Annie, my apologies for not responding to this thread earlier. I'm really sorry to read about your mum's frailty and how this is affecting you. I agree with Helen33 that you are very far from being a time waster, and I am sure whatever you raise will be worth raising.
I just wanted to ask whether the drinks your mum takes are thickened or not. When my mum had problems swallowing it was recommended that the drinks were thickened a little as this makes them easier to accept.
I expect you have been through this one and come out the other side but I just wanted to mention it anyway.
I hope you are managing to bear up under the strain. You are being a most attentive and loving daughter and I can't imagine your mum lacks for anything whilst she has you around to comfort her.
Love and hugs from Deborah
