Is nanny’s life coming to an end?

[AKiki13]

Hello, I just wondered if somebody could tell me whether or not my poor nanny is coming to the end stages?
She has vascular dementia and has been going downhill in the ‘steps’ over the last few years. She has recently been in hospital twice after falls and is now in a home. All of a sudden her speech has deteriorated badly and she has now started to struggle to swallow food. A salt referral has been made, I can only assume this doesn’t take too long. But I’m just concerned because nobody has ever actually said whether or not she is severe stages or things are coming to an end, they kind of just leave you to everything and nobody says anything. I know everybody is different but I am hoping somebody can help me with what they think because if she is later stages we may rethink where she is and consider hospice options. Thank you.

 

[lemonjuice]

It does sound as if her dementia is progressing, however my mother lost her speech and ability to swallow without manipulation, 3 years before she died.

If you look at the stages, Stage 7 is sub-divided into 7a//c/d/e/f and each sub-stage can last between a year and 18 months. So even at the most severe stage that last stage can stil last a very long time.

The mother of a friend has been at the foetal stage for well over a year now and my aunt was even longer at that stage.

 

[AKiki13]

It does sound as if her dementia is progressing, however my mother lost her speech and ability to swallow without manipulation 3 years before she died.

If you look at the stages stage 7 is sub-divided into 7a//c/d/e/f and each sub-stage can last between a year and 18 months. So even at the most severe stage that last stage ca stil last a very ling time.

The mother of a friend has been at the foetal stage for well over a year now and my aunt was even longer st that stage.

Thank you for your response. I’m so sorry that your mother passed away from this awful disease. We have been very lucky as a family that nobody before nanny has this dreadful disease. Everybody else seems to have taken so long to get to get to this stage but nanny has gone downhill from the beginning so quickly. She only started to become poorly around 3 years ago and had carers in during the day just over a year ago and has now rapidly progressed to this. It sounds so quick compared to other people, is this normal or is it something else? She is frequently checked for uti’s so it’s not that and was deemed medically fit to be released from hospital. I’m so scared at the speed in which it has taken grip. What can I do to help her?

 

[lemonjuice]

As you may realise Vascular Dementia is different to Alzheimers and can progress in a different way.
They can seem 'more normal' but once they deteriorate it can be like a cascade.
If you think of it like a motorway and one by one the ;connections disappear. For a while one can deviate and find an alternative route and 'reach one's destination, albeit a bit slower. But when that last connection to the motorway is closed, it becomes impossible to go anywhere and will seem like a sudden change. Whereas it has been happening for a long time.
it seems like a sudden big step down, but she may well 'stabilise' at this level for a long while now.

Unfortunately practically there'x little you can do for your nanny.
Just love her. Even if she can't respond her senses may be intact and her sense of hearing may well be the last thing to go. Use her senses, touch and smell. My mother 's room had those scented plug-ins to provide her with sensory input.One of those lava lamps to look at to alleviate the boredom, or if she doesn't suffer seizures (impossible for us as my mother did) some flashing lights like they have at Christmas or there are special sensory ones. Massage lotion into her hands and holding her hands, stroking her face to show your care for her. And music to listen to.

 

[AKiki13]

As you may realise Vascular Dementia is different to Alzheimers and can progress in a different way.
They can seem 'more normal' but once they deteriorate it can be like a cascade.
If you think of it like a motorway and one by one the ;connections disappear. For a while one can deviate and find an alternative route and 'reach one's destination, albeit a bit slower. But when that last connection to the motorway is closed, it becomes impossible to go anywhere and will seem like a sudden change. Whereas it has been happening for a long time.

Thank you for that description. That is what worries me because more and more of her is being taken away by this cruel cruel disease. Should we get her assessed by her g.p or do they not know enough about dementia to give us an idea of what is happening?

 

[lemonjuice]

Gps generally don't have enough experience with people in the severest stages of dementia, as many never reach that stage and even so spend a few minutes with them, not hours like we do. Dementia is still much of an unknown and everyone has their own journey and there are so many differences, it is difficult to say 'what is happening'.


I've edited and added some pointers to my previous post as to some practical things you can do, which I used.

 

[AKiki13]

Gps generally don't have enough experience with people in the severest stages of dementia, as many never reach that stage and even so spend a few minutes with them, not hours like we do. Dementia is still much of an unknown and everyone has their own journey and there are so many differences, it is difficult to say 'what is happening'.


I've edited and added some pointers to my previous post as to some practical things you can do, which I used.

Thank you so very much for your advice, help and tips, I really do appreciate it. If it wasn’t for this forum, I would be completely unaware of what was happening and whether things were normal or not. It is such a brilliant place to come and ask questions and get open and honest answers from people who have been through such harrowing ordeals with their loved ones. Thank you.

 

[Hazara8]

Hello, I just wondered if somebody could tell me whether or not my poor nanny is coming to the end stages?
She has vascular dementia and has been going downhill in the ‘steps’ over the last few years. She has recently been in hospital twice after falls and is now in a home. All of a sudden her speech has deteriorated badly and she has now started to struggle to swallow food. A salt referral has been made, I can only assume this doesn’t take too long. But I’m just concerned because nobody has ever actually said whether or not she is severe stages or things are coming to an end, they kind of just leave you to everything and nobody says anything. I know everybody is different but I am hoping somebody can help me with what they think because if she is later stages we may rethink where she is and consider hospice options. Thank you.

This disease presents in so many different ways, according to the individual and also to other factors which are not always known at the time. I have seen 'rapid deterioration', over several months in a quite young person and a year after year 'stability' of the disease in an elderly person, whereby symptoms and behaviour seemed almost constant. As to 'end stages', a reluctance to eat or drink or indeed, difficulty in swallowing, are often cited in 'end stage', then pneumonia follows on perhaps and thus the decline. Yet, if I look at my own late mother's 'end stage' (Alzheimer's with Vascular dementia) she could swallow right up until the last day of her life and the pneumonia during that period, was cured. It was Alzheimer's and all of its factors, which took her life. A reluctance to eat or drink, a reluctance to get out of bed, an 'end of life' process was taking place, her body shutting down, during the course of one whole month. And throughout this period, I was with her and also receiving daily updates from the clinical team in the hospital.

The Care Home should keep you informed on any changes in your nanny's condition and in respect of 'end stage', without question. Once the Salt Team have assessed, you will have a better idea on things. My mother stopped eating for a period in the Care Home and lost weight and it was a worry for a time, as she slept a great deal too. Then, one morning she ate a hearty breakfast and things returned to normal. So, take a deep breath and wait and see?

 

[yak55]

It does sound as if her dementia is progressing, however my mother lost her speech and ability to swallow without manipulation, 3 years before she died.

If you look at the stages, Stage 7 is sub-divided into 7a//c/d/e/f and each sub-stage can last between a year and 18 months. So even at the most severe stage that last stage can stil last a very long time.

The mother of a friend has been at the foetal stage for well over a year now and my aunt was even longer at that stage.

What's the foetal stage? I've never heard of it

 

[lemonjuice]

What's the foetal stage? I've never heard of it

Hopefully your nanny will never reach it.
A PWD loses capacities roughly in the order they gained them and a 'foetus' is an unborn child and they are all curled up in a ball.

 

[yak55]

Hopefully your nanny will never reach it.
A PWD loses capacities roughly in the order they gained them and a 'foetus' is an unborn child and they are all curled up in a ball.

 

[Daffy123]

As you may realise Vascular Dementia is different to Alzheimers and can progress in a different way.
They can seem 'more normal' but once they deteriorate it can be like a cascade.
If you think of it like a motorway and one by one the ;connections disappear. For a while one can deviate and find an alternative route and 'reach one's destination, albeit a bit slower. But when that last connection to the motorway is closed, it becomes impossible to go anywhere and will seem like a sudden change. Whereas it has been happening for a long time.
it seems like a sudden big step down, but she may well 'stabilise' at this level for a long while now.

Unfortunately practically there'x little you can do for your nanny.
Just love her. Even if she can't respond her senses may be intact and her sense of hearing may well be the last thing to go. Use her senses, touch and smell. My mother 's room had those scented plug-ins to provide her with sensory input.One of those lava lamps to look at to alleviate the boredom, or if she doesn't suffer seizures (impossible for us as my mother did) some flashing lights like they have at Christmas or there are special sensory ones. Massage lotion into her hands and holding her hands, stroking her face to show your care for her. And music to listen to.

Personally, I would not use a scented plug in, as it can trigger breathing problems. Even young lungs can have a problem with the scent.

 

[lemonjuice]

Personally, I would not use a scented plug in, as it can trigger breathing problems.

Valid point.
But my mother had never had any problem breathing, other than her episodes of heart failure and she had so little left to enjoy by that stage. She had always loved her garden and we had baskets and vases of silk flowers on the top of her wardrobe and on shelves so she could see them from her bed. So a scent was 'natural' for her to still enjoy her garden in her bedroom. And with her seizures any light strings or anything which flickered were a no-no. So other than her music life was pretty boring and unstimulating for her.

 

[Daffy123]

Valid point.
But my mother had never had any problem breathing, other than her episodes of heart failure and she had so little left to enjoy by that stage. She had always loved her garden and we had baskets and vases of silk flowers on the top of her wardrobe and on shelves so she could see them from her bed. So a scent was 'natural' for her to still enjoy her garden in her bedroom. And with her seizures any light strings or anything which flickered were a no-no. So other than her music life was pretty boring and unstimulating for her.

It's great if she had no issues. I highlighted it, as so many people are not aware that scent/plug in can lung discomfort. It's well worth googling, as these scents can include some nasty chemicals including formalehyde and petroleum.

 

[Spamar]

I hate them, Daffy. When we moved here, the house hadn’t been lived in for 6momths. My stepson was first in and he opened every window. I followed and threw out all the scented things in every room!

 

[mumsgone]

Hello, I just wondered if somebody could tell me whether or not my poor nanny is coming to the end stages?
She has vascular dementia and has been going downhill in the ‘steps’ over the last few years. She has recently been in hospital twice after falls and is now in a home. All of a sudden her speech has deteriorated badly and she has now started to struggle to swallow food. A salt referral has been made, I can only assume this doesn’t take too long. But I’m just concerned because nobody has ever actually said whether or not she is severe stages or things are coming to an end, they kind of just leave you to everything and nobody says anything. I know everybody is different but I am hoping somebody can help me with what they think because if she is later stages we may rethink where she is and consider hospice options. Thank you.

Hi AKiki, if your nan is comfortable where she is there is no point in moving her. The care home staff will keep her as comfortable as possible. It does sound as though she is in the end stages and I know from experience vascular dementia progresses quicker than other forms. My mums was less than 3 years from diagnosis to the end. Being there for her is the most important thing you can do and if you feel she is in any form of pain make sure her doctor prescribes pain relief in whatever form needed. xx

 

[AKiki13]

Hi AKiki, if your nan is comfortable where she is there is no point in moving her. The care home staff will keep her as comfortable as possible. It does sound as though she is in the end stages and I know from experience vascular dementia progresses quicker than other forms. My mums was less than 3 years from diagnosis to the end. Being there for her is the most important thing you can do and if you feel she is in any form of pain make sure her doctor prescribes pain relief in whatever form needed. xx

The home which she is in is absolutely dreadful, it smells, there are people making nanny feel awful by keep coming in her room and touching her things and the alarm cord has been removed 5 times in a week so she has had no cord to pull in an emergency. They kept telling us she’s been eating fine but she can’t eat much at all so we know that’s not true. Wasn’t until we said she can’t chew anything and keeps choking as we had lunch with her both days at the weekend that they realised. They are not taking very good care of her at all and she is uncomfortable there. We have found her a lovely home which is within 5 mins of all the family and is literally like the Hilton of care homes. It is so pretty and light and airy and peaceful which is what she needs so desperately. We are moving her there tomorrow so she can spend her last weeks or months there in comfort as that’s what she deserves. And then we can all be with her as much as working lives permit which will be daily. I know the move may throw her but she cannot stay where she is, she has only been there a week and has not been looked after very well at all. We’ve left there most days in tears. We are going to ask the doctor to see her in the next few days to discuss what is happening and what they can do to support her. It’s such an awful time, I hate to think of the suffering she is going through mentally. And I don’t want her to suffer but my god I am not ready to say goodbye either.

 

[Jezzer]

The home which she is in is absolutely dreadful, it smells, there are people making nanny feel awful by keep coming in her room and touching her things and the alarm cord has been removed 5 times in a week so she has had no cord to pull in an emergency. They kept telling us she’s been eating fine but she can’t eat much at all so we know that’s not true. Wasn’t until we said she can’t chew anything and keeps choking as we had lunch with her both days at the weekend that they realised. They are not taking very good care of her at all and she is uncomfortable there. We have found her a lovely home which is within 5 mins of all the family and is literally like the Hilton of care homes. It is so pretty and light and airy and peaceful which is what she needs so desperately. We are moving her there tomorrow so she can spend her last weeks or months there in comfort as that’s what she deserves. And then we can all be with her as much as working lives permit which will be daily. I know the move may throw her but she cannot stay where she is, she has only been there a week and has not been looked after very well at all. We’ve left there most days in tears. We are going to ask the doctor to see her in the next few days to discuss what is happening and what they can do to support her. It’s such an awful time, I hate to think of the suffering she is going through mentally. And I don’t want her to suffer but my god I am not ready to say goodbye either.

Hello @AKiki13 . I'm so sorry about your Nan and also that the CH has been so unsatisfactory. Good luck tomorrow! Yes the move may upskittle her but hopefully she will soon settle into this lovely new home. I also understand you not wanting her to suffer but not wanting to lose her just yet. I'm in the same situation with my darling mum. You sound a close family and I'm sure your just being with her will be of comfort. She will definitely feel the love you so clearly have for her. Warm Thoughts to you all.

 

[mumsgone]

oh my love you are doing the best for her by moving her to a lovely new home. We are none of us ever ready to say goodbye but sadly we are not given the choice. Make the most of the time you have with her and remember that when she does go she will be at peace knowing that her family are there for her. It is hard I know but as time passes you will remember all the good times you had and the moments you cherished with her and yes you will be able to laugh about things and not feel guilty for doing so ! It is good that you will be able to speak to her doctor and get things in perspective. Bless you and your family for caring so much xx

 

[AKiki13]

Hello @AKiki13 . I'm so sorry about your Nan and also that the CH has been so unsatisfactory. Good luck tomorrow! Yes the move may upskittle her but hopefully she will soon settle into this lovely new home. I also understand you not wanting her to suffer but not wanting to lose her just yet. I'm in the same situation with my darling mum. You sound a close family and I'm sure your just being with her will be of comfort. She will definitely feel the love you so clearly have for her. Warm Thoughts to you all.

Thank you for your kind words, it is such a horrible position to be in. What dementia does your mum have and is she at a CH?