Update on mum - was asking about pregabalin

[Jenny11]

Hi all,
Firstly, can I say thank you for all your comments & support over the past couple of days. When you're dealing with something so horrific by yourself, it can get really overwhelming. You being there for me is really appreciated ?

I've spoken to the doctor today. She agrees my mother's medication needs reviewing. My mother is now only 6 stone & her albumin & protein levels are low. This means she's no longer absorbing any nutrition, and her prognosis is therefore poor ?.

Dr has said that my mother is likely on too much sedative medication, & because of her constant weight loss, the dosages of her normal medications may likely be too high now as well.

We're having a multi disciplinary meeting next Tuesday to decide on a care plan going forward. Guess we're looking months then rather than years then, as this most probably means we'll all be agreeing to stop any intervention if my mother has any more TIAs or infections etc. ?

It'll be a hard day but I have to do what's best for my mum. Trying very hard not to feel guilty about being relieved it's nearly over. The law around this disease is so inhumane.

 

[LouLance]

I’m so sorry Jenny11 this is so very hard for you and I know its not what you want for your mum.
But as you say it will be a relief when the time comes but then you have a whole host of new emotions to try and deal with.

You are right the law is so cruel for dementia sufferers. The assisted dying bill going through parliament currently only covers those with mental capacity, and with all the political shenanigans right now it will be on hold for the foreseeable Im sure. We really are more humane to animals and the idea that someone with dementia should not be able to pass away with a modicum of dignity is barbaric. My father never wanted this to be his final curtain call. He always said if I ever get Dementia I want you to shoot me... how ironic and the fact he is also now incontinent would just appall him. It is just so unbelievably sad for all those involved and I’m sending all my thoughts to you at this very difficult time xx

 

[Jale]

Keeping you all in my thoughts - one thing is certain with this awful illness there is no quick end. I hope that the care plan is now sorted and that your Mum can be kept comfortable and pain free.
Similar to what LouLance has said, my mum said if ever she lost her marbles (her words) then I was to put a pillow over her face. She would hate living if she was aware as to what was happening to her.
Take care and try to stay strong x

 

[Jenny11]

I’m so sorry Jenny11 this is so very hard for you and I know its not what you want for your mum.
But as you say it will be a relief when the time comes but then you have a whole host of new emotions to try and deal with.

You are right the law is so cruel for dementia sufferers. The assisted dying bill going through parliament currently only covers those with mental capacity, and with all the political shenanigans right now it will be on hold for the foreseeable Im sure. We really are more humane to animals and the idea that someone with dementia should not be able to pass away with a modicum of dignity is barbaric. My father never wanted this to be his final curtain call. He always said if I ever get Dementia I want you to shoot me... how ironic and the fact he is also now incontinent would just appall him. It is just so unbelievably sad for all those involved and I’m sending all my thoughts to you at this very difficult time xx

Thank you ?. My mum was a nurse & told me exactly the same thing. If she could see herself now, she'd be horrified. I'm convinced as it is she's going to haunt me for letting it get this far ?‍♀️

 

[Jenny11]

Keeping you all in my thoughts - one thing is certain with this awful illness there is no quick end. I hope that the care plan is now sorted and that your Mum can be kept comfortable and pain free.
Similar to what LouLance has said, my mum said if ever she lost her marbles (her words) then I was to put a pillow over her face. She would hate living if she was aware as to what was happening to her.
Take care and try to stay strong x

???

 

[canary]

I do hope the meeting next week comes up with the best solution possible.
xx

 

[Jenny11]

I do hope the meeting next week comes up with the best solution possible.
xx

Thank you ?. From what the doctor inferred, we'll just be confirming no intervention from now on. Then it's just time ? but I will post how the meeting went as it may be helpful for others in a similar situation.

 

[Roman223]

Hi all,
Firstly, can I say thank you for all your comments & support over the past couple of days. When you're dealing with something so horrific by yourself, it can get really overwhelming. You being there for me is really appreciated ?

I've spoken to the doctor today. She agrees my mother's medication needs reviewing. My mother is now only 6 stone & her albumin & protein levels are low. This means she's no longer absorbing any nutrition, and her prognosis is therefore poor ?.

Dr has said that my mother is likely on too much sedative medication, & because of her constant weight loss, the dosages of her normal medications may likely be too high now as well.

We're having a multi disciplinary meeting next Tuesday to decide on a care plan going forward. Guess we're looking months then rather than years then, as this most probably means we'll all be agreeing to stop any intervention if my mother has any more TIAs or infections etc. ?

It'll be a hard day but I have to do what's best for my mum. Trying very hard not to feel guilty about being relieved it's nearly over. The law around this disease is so inhumane.

Jenny11: Hello. I'm so sorry to hear about your mum. It sounds like you are at a similar stage to where I am with my mum.(I can't sleep so I'm up writing this). I too am in discussions with doctors re: an advanced care plan! I was asked last week if I had heard of an ACP and I had not. It is not something that I have ever discussed or really want to start to at this point.. As I have mentioned before In other posts. I hate dementia and what it has done to my mum and everyone else's loved ones on this forum and around the world. Thinking about it my mum too would not really have wanted to be still here in the poor state she is in. I am thinking about you & your mum at this incredibly difficult time.

 

[Jenny11]

Jenny11: Hello. I'm so sorry to hear about your mum. It sounds like you are at a similar stage to where I am with my mum.(I can't sleep so I'm up writing this). I too am in discussions with doctors re: an advanced care plan! I was asked last week if I had heard of an ACP and I had not. It is not something that I have ever discussed or really want to start to at this point.. As I have mentioned before In other posts. I hate dementia and what it has done to my mum and everyone else's loved ones on this forum and around the world. Thinking about it my mum too would not really have wanted to be still here in the poor state she is in. I am thinking about you & your mum at this incredibly difficult time.

Thank you ?. The dreaded meeting is tomorrow. When I went in to see my mum on Sunday, the nursing assistant confirmed that she was deteriorating. It's so hard to watch ?. ((Hugs)) to you, I am here if you need to talk xx

 

[canary]

The dreaded meeting is tomorrow

I'll be thinking of you
xx

 

[Sarasa]

Hope the meeting goes well @Jenny11.

 

[Jaded'n'faded]

Thank you ?. My mum was a nurse & told me exactly the same thing. If she could see herself now, she'd be horrified. I'm convinced as it is she's going to haunt me for letting it get this far ?‍♀️

My mother also threatened to come back and haunt me if she ever got 'like that' and I didn't put her out of her misery. (She'd kept a load of morphine and similar drugs from when my dad died years before, for just this purpose!)

During her last 3 years in a care home, if I could have authorised euthanasia, I would have done. Mum had made a Living Will making her thoughts and feelings very clear - there was no doubt. Instead, like many people here, I watched her deteriorate till there was barely anything left. She was terribly unhappy, angry and disturbed and had no dignity whatsoever. I feel very sorry that she had to endure that.

It's nearly 3 years since she died and no haunting so far...

 

[Roman223]

Thank you ?. The dreaded meeting is tomorrow. When I went in to see my mum on Sunday, the nursing assistant confirmed that she was deteriorating. It's so hard to watch ?. ((Hugs)) to you, I am here if you need to talk xx

Jenny11: How did the meeting go? I received a call from the hospital that mum has deteriorated and has another infection. They're saying it's a chest infection. She is having difficulties with her swallowing. She is not wanting to eat or drink and today a nurse has been syringe feeding her fluids. My eyes are swollen from crying so much. I hope you are ok? x

 

[Jenny11]

Jenny11: How did the meeting go? I received a call from the hospital that mum has deteriorated and has another infection. They're saying it's a chest infection. She is having difficulties with her swallowing. She is not wanting to eat or drink and today a nurse has been syringe feeding her fluids. My eyes are swollen from crying so much. I hope you are ok? x

Oh my I'm so sorry. ((Hugs)) xx I wish there was something I could do to help. Sending much love!

I've not been able to log on for a few days either because it's upset me so much. Doctor has agreed that there will be no more ambulances unless it's a broken bone. Basically agreed that if my mother no longer wants to eat or drink, then they won't force her. They'll treat as much as possible in the home, but if my mum doesn't want her medication, well so be it.

I've just come back from visiting her. It's breaking my heart. She's trying to talk but can no longer form words. I had one sentence I could understand in an hour of being there. My mum is now under 6 stone. I've had to buy her new clothes. She has an eye infection, her hair is still not washed & her nails looks awful because she won't let anyone clean them. Why do they make us watch this? Why does my mother have to be left to become so brain-damaged all we can do is stroke her head to try & comfort her? It's not right ??

 

[Jenny11]

Update on mum:. Apologies I've been a bit absent. Too raw I guess.

I had my meeting with the doctor & everyone is agreed. No more ambulances unless it's a broken bone. They won't force my mother to do anything. So, if she doesn't want to take her medication, or eat, or drink etc. that's ok. I've had to buy more clothes as she's like something out of Belsen. My dad is asking me to think about sorting out my mother's clothes at home, as they are never going to fit her ever again. ?

My mother has now deteriorated to the point that she can no longer speak properly. She's like a severe stroke patient - and I guess that's exactly really what she has become. She won't let anyone clean her nails, her hair is awful & she's developed an eye infection. I've never seen her nose hair or her whiskers so long. ?‍♀️??

My mother has gone. All I can do is try and comfort a frail old, confused & frightened lady, who's getting more and more distressed.
It's a living death. I can't do anything, only sit & watch & wait....??

 

[canary]

This is such a difficult time. Im so sorry.
I made the same decision for my mum - no hospital except for broken bones and it is so tough.
Does your mum still respond to music? If so, it may calm her and you could play her favourite when you visit. I found one of mums books - a Golden Treasury of Verse - and read some of the poems to her. She still responded to that too.

Please look after yourself during this time - it is all too easy to neglect yourself
xxx

 

[Jenny11]

This is such a difficult time. Im so sorry.
I made the same decision for my mum - no hospital except for broken bones and it is so tough.
Does your mum still respond to music? If so, it may calm her and you could play her favourite when you visit. I found one of mums books - a Golden Treasury of Verse - and read some of the poems to her. She still responded to that too.

Please look after yourself during this time - it is all too easy to neglect yourself
xxx

Unfortunately my mum is deaf without her hearing aids which she no longer wears. The only things that seems to calm her are looking at a picture of her & me together when she was well - I sent in a Mother's Day card I had done with Moonpig - and my stroking her forehead & sitting with her. She shouts a lot for my dad & is distressed because she wants to leave there. She keeps trying to get out of bed but can't of course. She spends much of her time asleep now, exhausted. Her only pleasure is apparently eating & cups of hot tea!

 

[Jenny11]

Just sat here, can't concentrate on anything. Nursing home has rung me to say that my mum is deteriorating ?

I said all the right things, like don't worry if she's not eating or drinking or wanting to take her meds, but by God this is bloody hard. Not knowing how long we've got, whether we are going to be with her at the end. Dad said she looked better when he went this afternoon. They didn't speak to him about it - probably didn't want to upset him - so he was surprised when I told him.
All I can do is keep visiting & wait for the call....

 

[Jenny11]

Jenny11: How did the meeting go? I received a call from the hospital that mum has deteriorated and has another infection. They're saying it's a chest infection. She is having difficulties with her swallowing. She is not wanting to eat or drink and today a nurse has been syringe feeding her fluids. My eyes are swollen from crying so much. I hope you are ok? x

Just wanted to check in on you. Hope you're ok xx

 

[Cat27]

Just sat here, can't concentrate on anything. Nursing home has rung me to say that my mum is deteriorating ?

I said all the right things, like don't worry if she's not eating or drinking or wanting to take her meds, but by God this is bloody hard. Not knowing how long we've got, whether we are going to be with her at the end. Dad said she looked better when he went this afternoon. They didn't speak to him about it - probably didn't want to upset him - so he was surprised when I told him.
All I can do is keep visiting & wait for the call....

Wishing you strength for this phase @Jenny11