I am new to this forum and this is my first post, so please excuse me as I try to ask my questions without going on too much.... My mum is in a nursing home where she has been for the last 4 years after having a stroke. She has vascular dementia and now cannot talk, walk, is incontinent, has to be fed her food (creamed fortified diet) and does not really know me anymore. She sits in her chair ( has to be supported as can lean too much) and just looks around in to space (glazed look) and also seems to sleep a lot too. I have been told that this is last/final stage vascular dementia but get told different things about it eg: mum could go on for years like this or not?? I feel her quality of life is no longer and how long can you stay like that? She seems to be drinking and eating ok at moment (fed by care assistants) but I have noticed her coughing after every drink swallow or tiny piece biscuit when I feed her? Just feel confused and would like to see if anybody could give me a little info or advice if you are also experiencing this or had been. Thanks x
How long will last stage vascular dementia go on for?
- Thread starter flower1
- Start date
Hello Flower
Welcome to TP.
I really feel for you as I am in a similar position to you. Unfortunately I have no answers. I have asked the same question myself and received much the same response. My dad has had all the symptoms of advanced dementia for about 4 years but although most of the guidance says this is the end stages, I have been told he could go on like this for years.
I admit that this fills me with despair and I guess you feel the same. All I can say is that although it's difficult, you will find lots of support on here. Personally I don't know how I would have coped without it. So try to keep your chin up keep posting
xx
Welcome to TP.
I really feel for you as I am in a similar position to you. Unfortunately I have no answers. I have asked the same question myself and received much the same response. My dad has had all the symptoms of advanced dementia for about 4 years but although most of the guidance says this is the end stages, I have been told he could go on like this for years.
I admit that this fills me with despair and I guess you feel the same. All I can say is that although it's difficult, you will find lots of support on here. Personally I don't know how I would have coped without it. So try to keep your chin up keep posting
xx
Hi flower
This is my first post too. My Dad was diagnosed with vascular dementia and Alzheimer's about two and a half years ago, we noticed him getting worse about 6 months ago then in late November my brother came across him quite by chance out at midnight with a mop bucket full of overnight items! He had been living alone with our support and we thought we were doing ok up to that point. All of a sudden Dr 's and social services became involved (we had been begging for help for months to no avail) I am very angry about this! Anyway,a place was found in a nursing home but Dad refused to go in for an assessment and had to be detained under the mental health order - it's been a complete nightmare. He is in a specialist dementia ward and from the day he went in its as if he has 'fallen off a cliff' both mentally and physically. It is, in my opinion the worst illness ever and is just a never-ending series of heartbreaking visits to see him. Don't know how long he will be in for but he is just getting worse, none of the meds are helping! Dad will be 83 in a few weeks and was extremely fit for his age, going for long walks every day and making his porridge in the mornings, a sandwich at lunchtime and we brought him a hot meal at tea time, so this rapid change since going into hospital has been a terrible shock to us all, to be honest I am not coping very well and after reading posts here I see that sadly I am not alone.
I would have classed Dad as mild heading towards moderate but now would say he is severely affected by his dementia, the ct scan showed no significant change, nothing that would explain this big change. I am so glad I found this forum as the only people that really know what this horrible illness takes from our loved ones (and us) is the people here! I hope that we all find the strength to get through this and some day be able to be happy again. x
This is my first post too. My Dad was diagnosed with vascular dementia and Alzheimer's about two and a half years ago, we noticed him getting worse about 6 months ago then in late November my brother came across him quite by chance out at midnight with a mop bucket full of overnight items! He had been living alone with our support and we thought we were doing ok up to that point. All of a sudden Dr 's and social services became involved (we had been begging for help for months to no avail) I am very angry about this! Anyway,a place was found in a nursing home but Dad refused to go in for an assessment and had to be detained under the mental health order - it's been a complete nightmare. He is in a specialist dementia ward and from the day he went in its as if he has 'fallen off a cliff' both mentally and physically. It is, in my opinion the worst illness ever and is just a never-ending series of heartbreaking visits to see him. Don't know how long he will be in for but he is just getting worse, none of the meds are helping! Dad will be 83 in a few weeks and was extremely fit for his age, going for long walks every day and making his porridge in the mornings, a sandwich at lunchtime and we brought him a hot meal at tea time, so this rapid change since going into hospital has been a terrible shock to us all, to be honest I am not coping very well and after reading posts here I see that sadly I am not alone.
I would have classed Dad as mild heading towards moderate but now would say he is severely affected by his dementia, the ct scan showed no significant change, nothing that would explain this big change. I am so glad I found this forum as the only people that really know what this horrible illness takes from our loved ones (and us) is the people here! I hope that we all find the strength to get through this and some day be able to be happy again. x
Last stage vascular dementia
Hi Pigeon1
Thanks so much for your reply. I am sorry to hear that you are in the same position and yes it definitely does fill you with despair month in month out, never knowing when their suffering will end but also for ourselves watching it. It is a very cruel illness. It is good that their is this support network on here as until somebody has been experiencing or going through this journey it is quite hard for them to understand x
Hi Pigeon1
Thanks so much for your reply. I am sorry to hear that you are in the same position and yes it definitely does fill you with despair month in month out, never knowing when their suffering will end but also for ourselves watching it. It is a very cruel illness. It is good that their is this support network on here as until somebody has been experiencing or going through this journey it is quite hard for them to understand x
Last stage vascular dementia
Hi Bluebell1
Many thanks for your reply. I am sorry to hear you are going through the same journey with this horrible illness. This forum seems to be very helpful. With regards to the big change your Dad seems to be going through I was told this is known as steps of the vascular dementia - where I was told that they can step down each time.
This certainly happened with my mum and it did confuse me as last May she stepped down after seizures I was told that it was severe and she was shutting down, later she came round and the next day they had her up sitting in the nursing home lounge. Emotionally I found this threw me and hard to deal with but since then I feel she has declined and also the way she looks physically but is every day going to be different? It really confused me so I expect this is why I look for answers in this last stage?? It is an emotional rollercoaster x
Hi Bluebell1
Many thanks for your reply. I am sorry to hear you are going through the same journey with this horrible illness. This forum seems to be very helpful. With regards to the big change your Dad seems to be going through I was told this is known as steps of the vascular dementia - where I was told that they can step down each time.
This certainly happened with my mum and it did confuse me as last May she stepped down after seizures I was told that it was severe and she was shutting down, later she came round and the next day they had her up sitting in the nursing home lounge. Emotionally I found this threw me and hard to deal with but since then I feel she has declined and also the way she looks physically but is every day going to be different? It really confused me so I expect this is why I look for answers in this last stage?? It is an emotional rollercoaster x
Last stage vascular dementia
Hi Noorza
Many thanks for your reply. I am sorry to hear about your Mum. I do ask the medical team at the nursing home but they do not seem to have any answers for me either. They feel as long as mum is able to be fed by them and drink from them then all is good? I feel I want to know more than this but unable to be given the answers? Am I within my right to have a doctor assess her in the home for an independent review? x
Hi Noorza
Many thanks for your reply. I am sorry to hear about your Mum. I do ask the medical team at the nursing home but they do not seem to have any answers for me either. They feel as long as mum is able to be fed by them and drink from them then all is good? I feel I want to know more than this but unable to be given the answers? Am I within my right to have a doctor assess her in the home for an independent review? x
Vascular dementia is confounding.
Vascular dementia without Alzheimer's appears to be nearly impossible to predict or stage. The brain is affected in all different places, as it varies from person to person. It does not seem that it degenerates the system overall as Alzheimer's does, either--it is not technically terminal. A majority of people pass within 5-7 years of diagnosis, but seemingly it is often from stroke or heart attack.
I so feel for you. I wonder constantly how long this road is for mom and for me.
One thing we have done is be very clear on Mom's wishes for end of life. (We are in the US; I gather that in the UK such things are ultimately decided by a physician, but we have a DNR, comfort measures only directive in place, as Mom is already very certain she does not want to continue living as she is, and she is moderate stage.) This clarity brings me some peace.
Vascular dementia without Alzheimer's appears to be nearly impossible to predict or stage. The brain is affected in all different places, as it varies from person to person. It does not seem that it degenerates the system overall as Alzheimer's does, either--it is not technically terminal. A majority of people pass within 5-7 years of diagnosis, but seemingly it is often from stroke or heart attack.
I so feel for you. I wonder constantly how long this road is for mom and for me.
One thing we have done is be very clear on Mom's wishes for end of life. (We are in the US; I gather that in the UK such things are ultimately decided by a physician, but we have a DNR, comfort measures only directive in place, as Mom is already very certain she does not want to continue living as she is, and she is moderate stage.) This clarity brings me some peace.
Last stage vascular dementia
Hi Buffalo1
Thanks for your reply. Firstly I have to say how brilliant this website is with support and the fact it reaches the USA! Thanks for your feedback, very much appreciated. I have what you call a end of life care plan in order for Mum which although she has never been able to tell me (as since her stroke she had no mental capacity to unfortunately understand anything) I have led it following the wishes which I feel would have been right for Mum (we shared a close mum to daughter relationship) so this is good to know it is in place for when the time comes. It's just very hard to get to last stage and see the decline week by week but I know have to stay strong as cannot change anything x
Hi Buffalo1
Thanks for your reply. Firstly I have to say how brilliant this website is with support and the fact it reaches the USA! Thanks for your feedback, very much appreciated. I have what you call a end of life care plan in order for Mum which although she has never been able to tell me (as since her stroke she had no mental capacity to unfortunately understand anything) I have led it following the wishes which I feel would have been right for Mum (we shared a close mum to daughter relationship) so this is good to know it is in place for when the time comes. It's just very hard to get to last stage and see the decline week by week but I know have to stay strong as cannot change anything x
Chest Infection and not getting right information in last stage vascular dementia
I went to visit my mum on Friday and was told she had a very sleepy week and informed she has now got a chest infection. The doctor had been out to see her and also told the nurse her dementia is fast progressing. I wanted the nurse to expand on this and also needed more information about the progression of the dementia. I did not get this and have taken it upon myself to contact the doctor direct for his feedback. Has anybody else experienced this with their nursing home not giving you enough medical information and also a colleague told me that a chest infection in last stage vascular dementia could be fatal to mum? I am feeling confused and would welcome any feedback. Just want to add mum is still taking her softened diet and fluids when being fed but my colleague said this doesn't always make any difference.
Thanks for reading x
I went to visit my mum on Friday and was told she had a very sleepy week and informed she has now got a chest infection. The doctor had been out to see her and also told the nurse her dementia is fast progressing. I wanted the nurse to expand on this and also needed more information about the progression of the dementia. I did not get this and have taken it upon myself to contact the doctor direct for his feedback. Has anybody else experienced this with their nursing home not giving you enough medical information and also a colleague told me that a chest infection in last stage vascular dementia could be fatal to mum? I am feeling confused and would welcome any feedback. Just want to add mum is still taking her softened diet and fluids when being fed but my colleague said this doesn't always make any difference.
Thanks for reading x
Hi Flower.
I have just come on here and read this and sat here in tears.
Haven't been well myself so haven't been on.
I just wanted to say that this is exactly how my dad is right now ( end stage vascular dementia).
I am so sorry to hear mum now has a chest infection too.
Now I am going through exactly the same as you with the nursing home with my dear dad.
We know he isn't ok but they say he is as can't give anymore answers.
Dads in bed doubly incontinent. Has a supra pubic catheter which he keeps pulling on.
He's sleeping most of the time too now and when he does open his eyes he stares as if he knows.
I even checked his pulse yesterday as thought he had stopped breathing.
Then suddenly he wakes up and try's to talk but can only barely whisper.
He's like a baby now and it's horrific to watch now.
The staff can give no answers either as he is eating liquids and soft food.
At Christmas my dad caught shingles and were told he was desperately ill and prepared ourselves for the worst.
Again he proved us all wrong and is still with us.
I now ring my fathers Gp too and have a word now and then as I don't thing a nursing home can give you any answers.
I have even held my dad and whispered that it's ok to,let go now and go to sleep.
I know this is upsetting but sometimes they are waiting for you to allow them to go.
If you ever want to talk in box me as understand what your going through.
Hugs xxxx
I have just come on here and read this and sat here in tears.
Haven't been well myself so haven't been on.
I just wanted to say that this is exactly how my dad is right now ( end stage vascular dementia).
I am so sorry to hear mum now has a chest infection too.
Now I am going through exactly the same as you with the nursing home with my dear dad.
We know he isn't ok but they say he is as can't give anymore answers.
Dads in bed doubly incontinent. Has a supra pubic catheter which he keeps pulling on.
He's sleeping most of the time too now and when he does open his eyes he stares as if he knows.
I even checked his pulse yesterday as thought he had stopped breathing.
Then suddenly he wakes up and try's to talk but can only barely whisper.
He's like a baby now and it's horrific to watch now.
The staff can give no answers either as he is eating liquids and soft food.
At Christmas my dad caught shingles and were told he was desperately ill and prepared ourselves for the worst.
Again he proved us all wrong and is still with us.
I now ring my fathers Gp too and have a word now and then as I don't thing a nursing home can give you any answers.
I have even held my dad and whispered that it's ok to,let go now and go to sleep.
I know this is upsetting but sometimes they are waiting for you to allow them to go.
If you ever want to talk in box me as understand what your going through.
Hugs xxxx
Hi Julia58
So sorry about the delay in replying to you. So grateful for your feedback and sorry that you are going through this too. I agree it is so hard and cruel and again like you I have told my Mum it is ok to let go and I will be ok, but she continues to fight or hold on for something? I just feel the emotional turmoil is so upsetting, also the varied and sometime limited info that you are told and having to fight your way to speak with the doctor to try and get the medical update which you need (which I think is also to help me try and prepare myself?) Even yesterday the nurse told me 'Your mum is fine?? Just because she is eating and drinking?? I walk away with tears in my eyes as I look at her and she looks so ill just sitting in a recliner type chair with a blanket over her (as she cannot sit up properly anymore) and has to be hoisted all the time. Seem to live each day wondering what is going to happen next (always at the back of my mind) but have to keep going so I can look after my children and family. Thanks again and take care. If I can help with any of your questions or concerns let me know and I will do my best to support xx
Hi flower, my mom is on CH for 4 yrs too.
There is no answer, I remember an old lady that stayed for 5 yrs on a bed, feeded by tube; and I remember ones that died on midle stage.
Aspiration pneumonia can kill and can force you on endlife discussion (tube feed or not) - I live on Brasil, dont know UK law about it.
There is no answer, I remember an old lady that stayed for 5 yrs on a bed, feeded by tube; and I remember ones that died on midle stage.
Aspiration pneumonia can kill and can force you on endlife discussion (tube feed or not) - I live on Brasil, dont know UK law about it.
Hi Flower1,
My mum is exactly the same as yours . My mum was diagnosed 18 months ago .She is in a Nursing Home and has deteriorated drastically in these past 18 months . Her weight at one point a few weeks back was 5.5stone ! she has chest infections constantly and coughs when fed . We have signed a DNR and thought mum was not going to last much longer . But ! now she is 7 stone no infections for the past 3 weeks which is a miracle and sometimes she can communicate with us . She is in the room with all the other residents having a good nosey what is going on ,instead of spending weeks in bed . !! I have no idea how long this will go on for and like you wish someone could give us an answer but like many of you I just keep up with the roller coaster !!
Thinking of you x
My mum is exactly the same as yours . My mum was diagnosed 18 months ago .She is in a Nursing Home and has deteriorated drastically in these past 18 months . Her weight at one point a few weeks back was 5.5stone ! she has chest infections constantly and coughs when fed . We have signed a DNR and thought mum was not going to last much longer . But ! now she is 7 stone no infections for the past 3 weeks which is a miracle and sometimes she can communicate with us . She is in the room with all the other residents having a good nosey what is going on ,instead of spending weeks in bed . !! I have no idea how long this will go on for and like you wish someone could give us an answer but like many of you I just keep up with the roller coaster !!
Thinking of you x
Hi, Thank you for your kind reply. I expect that there is no answer or timescale, just have to learn to deal with it I suppose. Can be very hard emotionally but this forum does really help with the feedback and support. I hope you are coping with your journey too with this. Many thanks x
Hi Thank you for your kind reply. I understand what you mean when they deteriorate then seem to move forward again then go back again. It is a roller coaster of emotions. All the best to you too. Thanks x
Thank you
Just want to say a huge thank you to everybody here for sharing their experiences. I've just got in from visiting Mum in her care home and desperately typed "how long does late stage vascular dementia go on" into Google. Mum is nearly 87 and has been in gradual decline over the last 3-4years, having been a World Champion veteran athlete at the age of 55. She had several falls and a stroke at home before we moved her to residential care 2 years ago and it's just heartbreaking to see her now curled up in the foetal position in bed, screaming and shouting "help" for no discernable reason, doubly incontinent and unable to move, feed herself or hold any sort of conversation. She was hospitalised with a "very serious" heart attack a week ago but we all agreed treatment was not appropriate and she has returned back to her care home. I feel wicked for wishing she hadn't survived it but I can't help thinking how horrified she'd have been a few years ago if she'd known she'd end up like this. My thoughts go to all of you sharing this difficult time and I wish you eventual peace and happy memories.
Just want to say a huge thank you to everybody here for sharing their experiences. I've just got in from visiting Mum in her care home and desperately typed "how long does late stage vascular dementia go on" into Google. Mum is nearly 87 and has been in gradual decline over the last 3-4years, having been a World Champion veteran athlete at the age of 55. She had several falls and a stroke at home before we moved her to residential care 2 years ago and it's just heartbreaking to see her now curled up in the foetal position in bed, screaming and shouting "help" for no discernable reason, doubly incontinent and unable to move, feed herself or hold any sort of conversation. She was hospitalised with a "very serious" heart attack a week ago but we all agreed treatment was not appropriate and she has returned back to her care home. I feel wicked for wishing she hadn't survived it but I can't help thinking how horrified she'd have been a few years ago if she'd known she'd end up like this. My thoughts go to all of you sharing this difficult time and I wish you eventual peace and happy memories.
Hi LesleyL
I am sorry to hear about your Mum too, it's so hard when you see the decline and the way they start to end up. My Mum I was told was shutting down last year (after a bout of seizures) and I started to prepare myself for closure - one part of me very sad and another part almost felt almost relief for some closure from this cruel - long goodbye disease. When Mum rallied round again I felt in emotional turmoil, so I understand how you feel when you wished she had not survived it. My thoughts are with you too x
Mom is end of life with Vascular Dementia.
Hi, I am also new to this forum. My mom too has Vascular Dementia,she went into a nursing home last year after my sister could no longer take care of her, she lived with her for 2 yrs.
She was admitted to hospital two weeks ago, she choked and the hospital thought she had aspirated. She was seriously ill and the consultant told us it was end of life and withdrew all her meds and also food and fluids. Mom returned to the care home as we don't want her to pass in hospital as it is less personal, and the care home, care...
We are just watching her fade, how long can this go on?? She has the tiniest sip of fluids every now and again, not eating, except for the odd mouthful of yogurt or some real soft food.
She has 4 pressure sores which need to be packed daily, she is now catheterised, have been told this may now cause a UTI, which, as she is end of life, the doctor would not treat it.
All we can see is our mom really suffering, she doent communicate, her life now consists of laying in bed all day, so,so sad, where her eyes used to recognise us, are now vacant and suffering. We pray god takes her in her sleep, cant stand watching her suffer anymore.
Hi, I am also new to this forum. My mom too has Vascular Dementia,she went into a nursing home last year after my sister could no longer take care of her, she lived with her for 2 yrs.
She was admitted to hospital two weeks ago, she choked and the hospital thought she had aspirated. She was seriously ill and the consultant told us it was end of life and withdrew all her meds and also food and fluids. Mom returned to the care home as we don't want her to pass in hospital as it is less personal, and the care home, care...
We are just watching her fade, how long can this go on?? She has the tiniest sip of fluids every now and again, not eating, except for the odd mouthful of yogurt or some real soft food.
She has 4 pressure sores which need to be packed daily, she is now catheterised, have been told this may now cause a UTI, which, as she is end of life, the doctor would not treat it.
All we can see is our mom really suffering, she doent communicate, her life now consists of laying in bed all day, so,so sad, where her eyes used to recognise us, are now vacant and suffering. We pray god takes her in her sleep, cant stand watching her suffer anymore.
