Advice on visiting in last stage vascular dementia

[flower1]

I have been to the nursing home this afternoon to see my mum who is in last/severe stage of vascular dementia (5th year of illness). My husband came with me and has not been to see my mum since July last year and was quite shocked and upset to see the change and deteroriation in my mum (she was in the NH lounge) and how sad and poorly she looked. When we got home he got quite upset and related that it is was upsetting to see and feels that he may not want to visit mum again and said that our children should probably not visit any more as he feels it may be too upsetting for them. I am upset about this and would appreciate any advice at this stage as my younger daughter asks to see her grandmother often with me. I feel upset as I write this and is it normal to get this reaction?? I have a brother who visits her about twice a year but nobody else. When his own mother passed (5 years ago) she was in a nursing home I visited with him all the time and supported his family throughout and my children were much younger then.

 

[Deputypink]

I have been to the nursing home this afternoon to see my mum who is in last/severe stage of vascular dementia (5th year of illness). My husband came with me and has not been to see my mum since July last year and was quite shocked and upset to see the change and deteroriation in my mum (she was in the NH lounge) and how sad and poorly she looked. When we got home he got quite upset and related that it is was upsetting to see and feels that he may not want to visit mum again and said that our children should probably not visit any more as he feels it may be too upsetting for them. I am upset about this and would appreciate any advice at this stage as my younger daughter asks to see her grandmother often with me. I feel upset as I write this and is it normal to get this reaction?? I have a brother who visits her about twice a year but nobody else. When his own mother passed (5 years ago) she was in a nursing home I visited with him all the time and supported his family throughout and my children were much younger then.

How old are your children . My dad is in the later stages and my 15 year old goes in regularly . We try and sit in his room - he brings his homework and we watch TV and do home work ?? I never make him go

 

[keywest67]

It's true it is upsetting to see loved ones in a care home and obviously so poorly however in my opinion you put your loved ones needs first as they need you, it's not easy to see anyone very ill and in possibly the last month's of life but I would not be able to abandon them in their hour of need simply because it's upsetting.........that's personally how I feel and I stayed with my Dad up to the end even as terribly distressing as it was and that's because I loved him.
My 10 year old niece visited Dad once every few weeks but we didn't force her, she wanted to go.......when Dad went onto end of life care we didn't take her......I think that was something a young girl shouldn't have to see but at this stage he had pneumonia and it was distressing.........I would let your children choose if they want to go see your Mum .........not sure how old your children are though?
Sorry your going through a difficult time, hope you get the family support you need x

 

[jaymor]

Our grandchildren visit aged from 23 to 2 months and our 5 year old great grandson. They are all comfortable with him though he does not know them. They all know it is their choice and if they ever want to stop then that is fine with Granddad and Grandma.

So as long as your daughter is comfortable and wants to go let her continue. Our second eldest granddaughter is now a carer and working in my husband's nursing home. She has completed three years at college and qualified for a completely different career but having seen her Granddad and the other 8 adopted granddads on his floor wanted to try caring and from the reports given to me is an exceptional little carer, all size 6 of her.

 

[Jess26]

My daughter used to visit her nan with her two toddler sons. The other residents loved seeing the boys and mums face would light up.
My hubby would come with me every other visit. I always wondered why my adult nephews never visited their nan. One told my daughter at the funeral that their dad had told them it was best they didn't

 

[DIANE69]

Slightly different in that my husband with advanced dementia stayed at home throughout.Our 7 grandchildren aged 6 months to 8 years popped in everyday to say hello to grandad.They all accepted that grandad was very poorly but would happily come and play quietly or draw him pictures.During the last week he was asleep all the time which they just seemed to accept.Their grandad died last week and the older ones chat about how they remember grandad before he was poorly,I personally think that visiting him has helped them to accept his passing.

 

[Witzend]

I understand that it can be upsetting for someone who doesn't visit often to see how much worse someone is since the last time. I do try to warn my sister who lives in the US and can only visit once a year - and my other sister who lives a good 5 hour drive away and comes perhaps once in 3 months. They are bound to notice the changes far more than I do, or my brother, who lives a fairly easy drive away. Our mother doesn't know any of us any more, and shows no recognition when we visit, and if we mention the names of any close family, there is nothing but a blank. My husband does come with me now and then, but she hasn't a clue who he is any more, either. He still tries to engage her in conversation - it is completely one sided and he never gets any response or any sign that she has a clue what he's talking about. But his father also had advanced dementia, so he has seen it all before.

My sister in the US often says she feels bad for not visiting more often, but the fact is that she can't, and I tell her over and over not to feel bad. Even when she does come, sometimes our mother will not even wake up. I know the visits are really more for my sister than for our mother, because whether she's awake or not, and even if she wakes up and is grumpy, she can still kiss her and tell her she loves her, and her conscience will be eased.

You don't say how old your children are, but personally I feel it should be up to them. If they are still happy to go, fine. If they find it upsetting, then maybe it's better for them to remember her as she was.

My two are long grown up and don't live nearby any more, and often say they feel bad for not seeing Granny for quite a while. Again, I tell them not to, since she will not recognise them, and may even be grumpy. My younger was determined to go on the last but one birthday, and went in armed with flowers and a present, and a, Happy Birthday Granny! - only to be met with a grumpy, 'I'm not your granny!' Nowadays she wouldn't even get anything as intelligible as that. But my two are old enough, and have enough understanding of dementia, not to take it personally. They still go now and then, but in the kindest possible way it's more for their own consciences than for their poor old granny now. It would be so lovely if, just once, her eyes could light up when she sees them (or any of us, come to that) but alas, I don't think it's ever going to happen any more. I haven't even told her that our elder is expecting her first baby - our first grandchild - in April. I know I will just get that completely blank look, as if nobody is there any more, and I suppose I would rather keep quiet than have that. All being well, I know that daughter will bring the baby in to see Granny once it's here, and I am still hoping there might be some tiny response to a baby, rather than to mere words. We shall see, but you never know - fingers crossed. At any rate, I know some of the other residents will love to see a new baby.

 

[Pickles53]

I used to take my toddler grandson in to see mum at her care home; for a long time it was the only thing that seemed to cheer her up a bit. She couldn't engage with him directly but she enjoyed watching him play. If I went alone she would ask why I hadn't brought him. He was so popular with the other residents that we said we should have put him on the social programme. It was one of the saddest visits the last time we took him when she kept her eyes closed the whole time, even when we lifted him on to her bed there was no reaction. After that we felt there was no point and in fact she died a couple of weeks later.

I think if children are old enough I would talk to them about how much granny/grandad would like to see them and encourage them to visit, but not insist if they are distressed or anxious.

 

[flower1]

How old are your children . My dad is in the later stages and my 15 year old goes in regularly . We try and sit in his room - he brings his homework and we watch TV and do home work ?? I never make him go

Thank you for your reply, my children are 13 and 10. Appreciate your feedback. Thank you xx

 

[flower1]

I used to take my toddler grandson in to see mum at her care home; for a long time it was the only thing that seemed to cheer her up a bit. She couldn't engage with him directly but she enjoyed watching him play. If I went alone she would ask why I hadn't brought him. He was so popular with the other residents that we said we should have put him on the social programme. It was one of the saddest visits the last time we took him when she kept her eyes closed the whole time, even when we lifted him on to her bed there was no reaction. After that we felt there was no point and in fact she died a couple of weeks later.

I think if children are old enough I would talk to them about how much granny/grandad would like to see them and encourage them to visit, but not insist if they are distressed or anxious.

Hi, many thanks for taking the time to reply and your feedback which is very helpful to me at the moment. I am sorry for the passing of your Mum and wish you comfort in the days ahead. I recogonise too those signs of the eyes closed and no reaction with my own Mum even from our last visit which I wrote about but it's out of my control and I can only keep doing my best. Take care and thank you xx

 

[flower1]

I understand that it can be upsetting for someone who doesn't visit often to see how much worse someone is since the last time. I do try to warn my sister who lives in the US and can only visit once a year - and my other sister who lives a good 5 hour drive away and comes perhaps once in 3 months. They are bound to notice the changes far more than I do, or my brother, who lives a fairly easy drive away. Our mother doesn't know any of us any more, and shows no recognition when we visit, and if we mention the names of any close family, there is nothing but a blank. My husband does come with me now and then, but she hasn't a clue who he is any more, either. He still tries to engage her in conversation - it is completely one sided and he never gets any response or any sign that she has a clue what he's talking about. But his father also had advanced dementia, so he has seen it all before.

My sister in the US often says she feels bad for not visiting more often, but the fact is that she can't, and I tell her over and over not to feel bad. Even when she does come, sometimes our mother will not even wake up. I know the visits are really more for my sister than for our mother, because whether she's awake or not, and even if she wakes up and is grumpy, she can still kiss her and tell her she loves her, and her conscience will be eased.

You don't say how old your children are, but personally I feel it should be up to them. If they are still happy to go, fine. If they find it upsetting, then maybe it's better for them to remember her as she was.

My two are long grown up and don't live nearby any more, and often say they feel bad for not seeing Granny for quite a while. Again, I tell them not to, since she will not recognise them, and may even be grumpy. My younger was determined to go on the last but one birthday, and went in armed with flowers and a present, and a, Happy Birthday Granny! - only to be met with a grumpy, 'I'm not your granny!' Nowadays she wouldn't even get anything as intelligible as that. But my two are old enough, and have enough understanding of dementia, not to take it personally. They still go now and then, but in the kindest possible way it's more for their own consciences than for their poor old granny now. It would be so lovely if, just once, her eyes could light up when she sees them (or any of us, come to that) but alas, I don't think it's ever going to happen any more. I haven't even told her that our elder is expecting her first baby - our first grandchild - in April. I know I will just get that completely blank look, as if nobody is there any more, and I suppose I would rather keep quiet than have that. All being well, I know that daughter will bring the baby in to see Granny once it's here, and I am still hoping there might be some tiny response to a baby, rather than to mere words. We shall see, but you never know - fingers crossed. At any rate, I know some of the other residents will love to see a new baby.

Hi Witzend, many thanks for your valuable feedback, much appreciated at this time. xx

 

[flower1]

Slightly different in that my husband with advanced dementia stayed at home throughout.Our 7 grandchildren aged 6 months to 8 years popped in everyday to say hello to grandad.They all accepted that grandad was very poorly but would happily come and play quietly or draw him pictures.During the last week he was asleep all the time which they just seemed to accept.Their grandad died last week and the older ones chat about how they remember grandad before he was poorly,I personally think that visiting him has helped them to accept his passing.

Hi Diane69, many thanks for taking the time to respond at what must be a difficult time for you. I do agree with you that by visiting does help them accept his passing and my father died in ICU in hospital and the children were not allowed to visit as they were too young I was told therefore I always have this in the back of my mind and want them to understand about Mum as I feel she is getting nearer to the end stage in a lot of ways. I wish you comfort for the days ahead and thank you xx

 

[flower1]

It's true it is upsetting to see loved ones in a care home and obviously so poorly however in my opinion you put your loved ones needs first as they need you, it's not easy to see anyone very ill and in possibly the last month's of life but I would not be able to abandon them in their hour of need simply because it's upsetting.........that's personally how I feel and I stayed with my Dad up to the end even as terribly distressing as it was and that's because I loved him.
My 10 year old niece visited Dad once every few weeks but we didn't force her, she wanted to go.......when Dad went onto end of life care we didn't take her......I think that was something a young girl shouldn't have to see but at this stage he had pneumonia and it was distressing.........I would let your children choose if they want to go see your Mum .........not sure how old your children are though?
Sorry your going through a difficult time, hope you get the family support you need x

Hi again Keywest, thank you for your kind feedback. I have read and have taken on board your thoughts and advice (especially about end of life care..) My children are 13 and 10. I have decided not to fall out with my husband about it as I feel emotions run high when somebody is poorly, for me I have had nearly 5 years of watching this and just pray that God will be kind and there will be a peaceful end so do not have to watch too much more suffering and acceptance can start to begin. Thank you for your kind words xx

 

[flower1]

My daughter used to visit her nan with her two toddler sons. The other residents loved seeing the boys and mums face would light up.
My hubby would come with me every other visit. I always wondered why my adult nephews never visited their nan. One told my daughter at the funeral that their dad had told them it was best they didn't

Hi Jess26, many thanks for your feedback, much appreciated xx

 

[flower1]

Our grandchildren visit aged from 23 to 2 months and our 5 year old great grandson. They are all comfortable with him though he does not know them. They all know it is their choice and if they ever want to stop then that is fine with Granddad and Grandma.

So as long as your daughter is comfortable and wants to go let her continue. Our second eldest granddaughter is now a carer and working in my husband's nursing home. She has completed three years at college and qualified for a completely different career but having seen her Granddad and the other 8 adopted granddads on his floor wanted to try caring and from the reports given to me is an exceptional little carer, all size 6 of her.

Hi Jaymor, many thanks for taking the time to reply. It is nice to know that something positive has come out of this with your eldest granddaughter. The carer's have such an important role to play in the NH. You must be very proud of her. Thanks again xx

 

[maximilian1]

New to the forum

Hi my dad was diagnosed with vascular dementia and Alzheimer's four years ago he is in the moderate stages of the disease and recently had his first wandering experience which ended in the police calling my mum (his main carer) as he had been found at the bottom of someone's garden lying injured. He had had a fall and broken his wrist . I am an only child and my mum still has to work although self employed is away a lot on conferences here and occasionally abroad. When she goes away I am expected to look after him but I have a young family and find it gets quite stressful and very emotional dealing with him. He has obviously turned another corner now after his fall and has become far more disorientated. I don't want to let my mum down but feel very strongly that we need a back up plan. I have told her and she is going to look at some respite homes but I can't help feeling guilty and even angry at my mum for expecting me to take on the responsibility when I already have my hands full

 

[Pickles53]

I don't want to let my mum down but feel very strongly that we need a back up plan. I have told her and she is going to look at some respite homes but I can't help feeling guilty and even angry at my mum for expecting me to take on the responsibility when I already have my hands full

You are definitely right; you need a back-up plan when your mother is away which does not depend on you being available. Your own family need you and should rightly be your first priority. Help your mum get the respite arrangements in place and hit that guilt monster firmly on the head next time he pops up.