end of life care... 3 weeks after diagnosis.

[LBD26]

Hi,

im just looking for someone to talk to.

My nan went into hospital repeatedly because she kept falling over at home. She had a water infection but nothing drastic. she was healthy before this, no signs of memory loss or instability. This happened over a period of about 3 months. She has now been in hospital for 7 weeks. the doctors could not find the problem or why she was deteriorating. she started refusing food about 4 weeks ago and was talking and shouting words like "mum" or shouting my name constantly. I could talk to her to a certain extent but couldn't hold a meaningful conversation. she's now at a stage where she wont eat or drink and cant talk at all. she just looks at me. She's starting end of life treatment but this has all happened so quickly. has anyone ever experienced anything like this? the speed is horrifying.

thanks,

Lewis

 

[Selinacroft]

Hi Lewis,
Very sad to hear how quickly your Nan has declined since hospital admission. How old is your nan ?, perhaps she is simply winding down as the hospital haven't been able to intervene. I think there are many variations of dementia and all seem to progress at different rates so this may be one of the reasons. They always say that hearing is one of the last senses to go so keep talking to your Nan when you visit as she may well be listening even if there is no visible response.

 

[Slugsta]

Hi Lewis and welcome to the forum - but I'm sorry that you have found us in such worrying circumstances. It sounds as if everything has happened so quickly that you have not had time to process things and come to terms with them.

I do hope that your Nan is given the help she needs to stay calm and pain-free.

 

[Bill Owen]

hi,

im just looking for someone to talk to.

My nan went into hospital repeatedly because she kept falling over at home. She had a water infection but nothing drastic. She was healthy before this, no signs of memory loss or instability. This happened over a period of about 3 months. She has now been in hospital for 7 weeks. The doctors could not find the problem or why she was deteriorating. She started refusing food about 4 weeks ago and was talking and shouting words like "mum" or shouting my name constantly. I could talk to her to a certain extent but couldn't hold a meaningful conversation. She's now at a stage where she wont eat or drink and cant talk at all. She just looks at me. She's starting end of life treatment but this has all happened so quickly. Has anyone ever experienced anything like this? The speed is horrifying.

Thanks,

lewis

hi im bill. I have just come throutgh this my self with my wife. Pass away in march this year. Delyth is her name .been ill with lewy body for the last 5 years.yes she stop eating drinking stop taklking . Yes she my be at the end stage .soory im dislex.so bare with me . Be strong

 

[LBD26]

Hi Lewis and welcome to the forum - but I'm sorry that you have found us in such worrying circumstances. It sounds as if everything has happened so quickly that you have not had time to process things and come to terms with them.

I do hope that your Nan is given the help she needs to stay calm and pain-free.

We always fall into the trap of thinking we have more time, don't we? I suppose in one respect its better for her that it has happened quickly. all i can seem to find is small crumbs of comfort in the little things like that. The doctors have said they're doing all they can to keep her comfortable. but does anyone else have feelings that they (myself not the doctors) should be doing more?

also reading this forum has been a great help and comfort, Its such a good thing going on here. The support must be invaluable.

 

[LBD26]

Hi Lewis,
Very sad to hear how quickly your Nan has declined since hospital admission. How old is your nan ?, perhaps she is simply winding down as the hospital haven't been able to intervene. I think there are many variations of dementia and all seem to progress at different rates so this may be one of the reasons. They always say that hearing is one of the last senses to go so keep talking to your Nan when you visit as she may well be listening even if there is no visible response.

is there much the hospital can do to intervene with dementia aside from slowing it down? my nan is 87 i think. i have been talking to her and telling her how much i love her and sharing my memories with her.

 

[Princess t]

My mother law was like this, water infection admitted to hospital as getting worse within two weeks she couldn't speak eat look at us, it was very frightening, she was frightened, her body shut down. Was diagnosed as lewybody. When she died we read her diary and it said she felt strange before hospital admission. She was mid 70s. Really hope your nan gets better.......

 

[Otiruz]

Hello Lewis

Your post reminded me of my own nan's passing some 20 years ago. I knew very little about dementia, Alzheimers or Parkinsons disease but at the time it seemed as if one day my Nan was vibrant and full of life and the next she was in hospital at the end of life stage - she was 94 years old. Actually, the time period was about 6 months and this was very difficult for all of us in such a big family where my nan played a very important and much loved role.

She was diagnosed with Alzheimers and I remember she thought I was her sister, not one of her many grandchildren. When my nan went into hospital I asked my father why they did not seem to be doing anything to make her well. I was frightened and frustrated. I now realise that the staff, who are so experienced, recognise the need to see that their patients are comfortable and pain-free rather than trying to prolong a life which they see will have no quality. It is a very distressing time for everyone concerned but every life has a natural time cycle and one of the beautiful elements of your nan's life is that you exist as evidence of her life.

You can always ask to speak to one of the consultants on your nan's ward if you feel they could be doing more. Being with her as much as you can will help her enormously even if she is unable to acknowledge you. She will know you are there and I'm sure she would absolutely appreciate your love and concern.

 

[LBD26]

hi im bill. I have just come throutgh this my self with my wife. Pass away in march this year. Delyth is her name .been ill with lewy body for the last 5 years.yes she stop eating drinking stop taklking . Yes she my be at the end stage .soory im dislex.so bare with me . Be strong

Hi Bill,

I'm so sorry to hear about your wife, im sure she's watching over you. i hope you're coping well and you're looking after yourself. Its really quite scary isnt it, the way this illness works? this has made me realise how little knowledge i have about it. I hope this forum has been kind to you Bill and helped you with your loss. I guess the hardest part about this "end stage" for me is that there seemed to be no beginning or middle stage, though i guess im selfish for wishing it to be drawn out like that.

thanks,
Lewis

 

[LBD26]

Hello Lewis

Your post reminded me of my own nan's passing some 20 years ago. I knew very little about dementia, Alzheimers or Parkinsons disease but at the time it seemed as if one day my Nan was vibrant and full of life and the next she was in hospital at the end of life stage - she was 94 years old. Actually, the time period was about 6 months and this was very difficult for all of us in such a big family where my nan played a very important and much loved role.

She was diagnosed with Alzheimers and I remember she thought I was her sister, not one of her many grandchildren. When my nan went into hospital I asked my father why they did not seem to be doing anything to make her well. I was frightened and frustrated. I now realise that the staff, who are so experienced, recognise the need to see that their patients are comfortable and pain-free rather than trying to prolong a life which they see will have no quality. It is a very distressing time for everyone concerned but every life has a natural time cycle and one of the beautiful elements of your nan's life is that you exist as evidence of her life.

You can always ask to speak to one of the consultants on your nan's ward if you feel they could be doing more. Being with her as much as you can will help her enormously even if she is unable to acknowledge you. She will know you are there and I'm sure she would absolutely appreciate your love and concern.

Thank you, thats actually really helpful to me. To know that someone else has had these range of emotions. In all honesty im struggling because i always feel i should be doing more. ive been to visit it her twice today and just held her hand. i didn't want to wake her though. it still doesnt feel enough. Thankyou again

 

[Otiruz]

Lewis your compassion absolutely shines through your messages. You are doing your very best - you are making your nan so proud.

 

[Selinacroft]

is there much the hospital can do to intervene with dementia aside from slowing it down? my nan is 87 i think. i have been talking to her and telling her how much i love her and sharing my memories with her.

Sadly I doubt that there is in terms of dementia, I know there are drugs available to slow the process for younger patients but I am not sure they would go down this route anyway given your nan's great age. It does sound as though she is very elderly and perhaps ready to go now. No doubt she has been drawing strength from your visits.

 

[LBD26]

thank you everyone for your kind words. it means a hell of a lot even if some of them have made me a little more tearful! ill take your advice and ill be by her side as much as i can until the inevitable comes.

 

[sueroydon]

My mum had a stroke on Tuesday. She had had a bit of dementia before this but I have found out this could have been some TIA's or urine infection. The doctors have withdrawn everything from her now and have been with her for around 5-6 hours every day since it happened. She seems very peaceful now and I think the end is near. The only consolation you and I have is that it has all happened so fast and my mum is definitely not in pain which is a huge comfort. All you can do is be there but don't beat yourself up if you need to go. You have to look after yourself too. I have just left my mum not knowing if I will see her again but you can't be with them 24-7.

I feel terrible guilt leaving her tonight but it is mentally exhausting. She will know you are there so just comfort her and be there when you can.

Wishing you peace and comfort.

Sue


Sent from my iPhone using Talking Point

 

[fizzie]

Thank you, thats actually really helpful to me. To know that someone else has had these range of emotions. In all honesty im struggling because i always feel i should be doing more. ive been to visit it her twice today and just held her hand. i didn't want to wake her though. it still doesnt feel enough. Thankyou again

Lewis most hospitals have a palliative (end of life) care team. It might be a good idea just to talk to them while you are at the hospital, they have so much insight into what is going on, ask the ward sister if you can do that.

I sat with my Mum when she was dying in hospital and I talked to her about all sorts of memories, she didn't appear to respond but I know, I just know, that she knew and understood - hearing stays with people right to the end so even if you think she is asleep talk to her , she may just be resting, tell her about all the good things that you remember xxx

This is such a hard time, I'm thinking of you x

 

[Otiruz]

There are so many brave and lovely people here - it's such a comfort.

 

[Quilty]

Your love for your Nan is very evident. When my Mum stopped being awake or talking I kept talking to her, playing her favourite music, brushing her hair with a soft brush, rubbing cream on her hands and balm on her lips.

These are intimate moments of caring you can remember later, as only family will do this for her. Tell her how much she means to you even if its hard. It will help you and then nothing will be left unsaid.

Sending you strength and holding your hand. These are very hard days to live through.
X
Quilty

 

[jorgieporgie]

Hi There, Just read your post and what a lovely granddaughter you are. I am sure your Nan will have comfort knowing you are with her and the hearing is apparently the last thing to go, so I am sure she can hear every word you say to her.
Memories will last a life time and just think how lucky you where to have your Nan to this ripe old age. I guess her body is tired now and maybe her time to go. Hope everything goes peaceful for you both. Big Hugs sent to you.xx