HI, my dad was diagnosed with early stages of vascular dementia last week. I am in shock and still processing the news. He has full capacity and is very intelligent which masks the diagnosis. The medical team have done a thorough assessment (MRI, memory tests etc) so there is no doubt they are correct. Despite trying to talk about it with my Dad he is not acknowledging it. This is hard as I want to talk about it to ensure he feels he can share how he is feeling and we can gently start talking about the practical plans for the coming months and years. Any guidance or advice would be appreciated. I intend to reach out to local agencies, charities and support to navigate my way through this but I wondered if anyone has a recent/similar experience to me regarding a parent not acknowledging the diagnosis.
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Dad diagnosed with early stages of vascular dementia.
- Thread starter oxtedbird
- Start date
A warm welcome to Dementia Talking Point @oxtedbird.
My mother, who also has vascular dementia, flatly refused to believe there was anything wrong with her. All the problems she was having were either due to her neighbours or to me. Also because her memory wasn't affected at first it took me a while to realise there really was something very awry and it wasn't just my mother's personality becoming more extreme as she aged. In the end I didn't really discuss it with her, just sorted out what needed to be done to keep her safe.
If you can get your dad to agree to setting up Power of Attorney. Perhaps give your dad a week or so to come to terms with the diagnosis, before you raise the subject so it doesn't sound like there is a direct correlation between getting that sorted and his diagnosis. I was lucky in that a friend of mum, who obvious saw mum was starting to have problems, recommended that she sorted out Power of Attorney. I think if I'd suggested it I might not have got anywhere. Does your dad have any friends that could suggest it? We went through a solicitor as that made mum happier about it all, but you can do it yourself which is much cheaper.
You might find these fact sheets useful for finding what support is out there
www.alzheimers.org.uk
Finally vascular dementia tends to go in steps. So you may find your dad stays much as he is for a good while, before having a bit of a downturn, so try and get as many things sorted now while you can.
I'm sure others will be along shortly with their tips and suggestions, but in the meantime do have a look round this very friendly and supportive site.
My mother, who also has vascular dementia, flatly refused to believe there was anything wrong with her. All the problems she was having were either due to her neighbours or to me. Also because her memory wasn't affected at first it took me a while to realise there really was something very awry and it wasn't just my mother's personality becoming more extreme as she aged. In the end I didn't really discuss it with her, just sorted out what needed to be done to keep her safe.
If you can get your dad to agree to setting up Power of Attorney. Perhaps give your dad a week or so to come to terms with the diagnosis, before you raise the subject so it doesn't sound like there is a direct correlation between getting that sorted and his diagnosis. I was lucky in that a friend of mum, who obvious saw mum was starting to have problems, recommended that she sorted out Power of Attorney. I think if I'd suggested it I might not have got anywhere. Does your dad have any friends that could suggest it? We went through a solicitor as that made mum happier about it all, but you can do it yourself which is much cheaper.
You might find these fact sheets useful for finding what support is out there
Find support near you
Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.
I'm sure others will be along shortly with their tips and suggestions, but in the meantime do have a look round this very friendly and supportive site.
Hi @oxtedbird
What you are describing is a very common, though little talked about, symptom of dementia called anosognosia. People with this symptom lose self awareness and are unable to comprehend that they have changed. There are a few carers on here who are caring for people who have awareness and there are some members who have dementia and are aware, but the vast majority have anosognosia to a greater, or lesser extent.
My mum had absolutely no awareness that she had anything wrong with her at all. She would admit that her memory "wasnt what it was", but put this down to normal old age problems. She was also vaguely aware that Something was not right, but never understood that this Something was actually her. If I tried to convince her that she had dementia, or could no longer do things she would get very angry with me. My OH is aware that he had mobility problems and can no longer hear, but is unaware of other changes. When everything first started he thought it was me "taking him over" "treating him like a child" and "preventing him doing things", but now If I ask him why he no longer does something he will be genuinely puzzled and say that he is lazy or cant be bothered, when the truth is that he is no longer able to do it. In his own mind nothing has changed and he feels just the same as he always did. He is (and also mum was) completely unable to visualise and contemplate the future and he has made some astoundingly bad decisions.
All of this means that it is impossible to talk things over with OH. We cannot plan for the future together because he has no longer any understanding of the problems that might arise or what might be involved (and I still fear his temper), so this means that I have to make decisions on my own and then persuade him (often using subterfuge) to agree, or even just make it happen without asking him. It seems terrible to have to do this, but if I waited for him nothing would get done.
What you are describing is a very common, though little talked about, symptom of dementia called anosognosia. People with this symptom lose self awareness and are unable to comprehend that they have changed. There are a few carers on here who are caring for people who have awareness and there are some members who have dementia and are aware, but the vast majority have anosognosia to a greater, or lesser extent.
My mum had absolutely no awareness that she had anything wrong with her at all. She would admit that her memory "wasnt what it was", but put this down to normal old age problems. She was also vaguely aware that Something was not right, but never understood that this Something was actually her. If I tried to convince her that she had dementia, or could no longer do things she would get very angry with me. My OH is aware that he had mobility problems and can no longer hear, but is unaware of other changes. When everything first started he thought it was me "taking him over" "treating him like a child" and "preventing him doing things", but now If I ask him why he no longer does something he will be genuinely puzzled and say that he is lazy or cant be bothered, when the truth is that he is no longer able to do it. In his own mind nothing has changed and he feels just the same as he always did. He is (and also mum was) completely unable to visualise and contemplate the future and he has made some astoundingly bad decisions.
All of this means that it is impossible to talk things over with OH. We cannot plan for the future together because he has no longer any understanding of the problems that might arise or what might be involved (and I still fear his temper), so this means that I have to make decisions on my own and then persuade him (often using subterfuge) to agree, or even just make it happen without asking him. It seems terrible to have to do this, but if I waited for him nothing would get done.
You will have to do it all - do his thinking for him. He has vascular dementia and although he is intelligent and has full capacity there are certain things his brain struggles to do. Understanding, reason and logic - all are starting to go.
But a bit is left! And that bit heard the diagnosis and is trying to process it. I don't know what he knows about dementia but it's probably nothing good. (Unfortunately there is nothing good...) So although he feels absolutely fine, same as he always has, he now knows he has a frightening terminal illness that will affect his mind and ultimately his life. This must seem very unlikely to him - he feels no different so it can't be true.
It's unlikely he will turn round to you next week or next month and say, 'OK, I've got dementia so let's start making plans for the future and discuss what we'll do going forwards.' More likely he will deny it more as he loses awareness..
So my advice is to do the research yourself. Find out as much as you can. The one thing you really need to get in place as soon as possible is Power of Attorney so DO discuss this with him. You don't have to relate it to dementia, perhaps take the 'what if you got run over by a bus and ended up in hospital, who would look after everything?' line or whatever you think might work. Tell him a solicitor friend advised you that everyone should do one when they get to 50/60 or whatever.
I hope you will keep posting on these boards - it helped me beyond measure. There's always someone here who has had the same issues you are having...
But a bit is left! And that bit heard the diagnosis and is trying to process it. I don't know what he knows about dementia but it's probably nothing good. (Unfortunately there is nothing good...) So although he feels absolutely fine, same as he always has, he now knows he has a frightening terminal illness that will affect his mind and ultimately his life. This must seem very unlikely to him - he feels no different so it can't be true.
It's unlikely he will turn round to you next week or next month and say, 'OK, I've got dementia so let's start making plans for the future and discuss what we'll do going forwards.' More likely he will deny it more as he loses awareness..
So my advice is to do the research yourself. Find out as much as you can. The one thing you really need to get in place as soon as possible is Power of Attorney so DO discuss this with him. You don't have to relate it to dementia, perhaps take the 'what if you got run over by a bus and ended up in hospital, who would look after everything?' line or whatever you think might work. Tell him a solicitor friend advised you that everyone should do one when they get to 50/60 or whatever.
I hope you will keep posting on these boards - it helped me beyond measure. There's always someone here who has had the same issues you are having...
Hi
I think it is quite common. It is common with other illnesses as well. My mum never wanted to talk about her cancer or acknowledge or plan things and we kind of had to accept that, not necessarily agree but it was what she could cope with .
I think once we receive a diagnosis for my dad he will be the same as your dad too. He knows there is something wrong , his mobility is not good. He will say he doesn't know where his head is or what is going on with himself. The awareness is there to an extent but that is a far as we are. I don't anticipate he will be able to accept or understand fully, when the time arrives.
We do have POA for health and wellbeing and financial things as well. Dad needs help with all those things. He has a cleaner every two weeks, I fill in the rest of the time. We do his shopping, medical appointments etc. He does still manage to meet friends once a week.
I did find a local charity that do some zoom training and I started that this week. It might be worth having a look in your area because I really found the first session useful and it was nice to be part of a group of people all different with different experiences but either carers, professionals or people with the condition themselves. What I liked about it as well was they focused on more positive things like a diagnosis can mean a good life for 10 to 15 years with the right support and what people can do rather than cannot.
We also have had the OT out a few times (now we make sure one of us is there because Dad just says he is fine and off they go only to have us re refer him again) stair rail, grab rails, bed rail etc that was useful
I hope that helps a little bit though
we are pretty much at the beginning ourselves but these threads are also really helpful in learning and listening to others.Thank you so much. It is a big help. Thank you for sharing your experiences and taking the time to replyHi
I think it is quite common. It is common with other illnesses as well. My mum never wanted to talk about her cancer or acknowledge or plan things and we kind of had to accept that, not necessarily agree but it was what she could cope with .
I think once we receive a diagnosis for my dad he will be the same as your dad too. He knows there is something wrong , his mobility is not good. He will say he doesn't know where his head is or what is going on with himself. The awareness is there to an extent but that is a far as we are. I don't anticipate he will be able to accept or understand fully, when the time arrives.
We do have POA for health and wellbeing and financial things as well. Dad needs help with all those things. He has a cleaner every two weeks, I fill in the rest of the time. We do his shopping, medical appointments etc. He does still manage to meet friends once a week.
I did find a local charity that do some zoom training and I started that this week. It might be worth having a look in your area because I really found the first session useful and it was nice to be part of a group of people all different with different experiences but either carers, professionals or people with the condition themselves. What I liked about it as well was they focused on more positive things like a diagnosis can mean a good life for 10 to 15 years with the right support and what people can do rather than cannot.
We also have had the OT out a few times (now we make sure one of us is there because Dad just says he is fine and off they go only to have us re refer him again) stair rail, grab rails, bed rail etc that was useful
I hope that helps a little bit though
Thank you for taking the time to reply. Having just found these forums it is proving to be my first experience in reaching out. It can feel lonely and very scary.
my husband has vascular dementia, diagnosed 2 years ago. in the last few months he has had a step down and is more confused about following simple instructions. its their logic, reasoning and sequencing which can be before memory. hes fully aware that he has dementia and some of what he needs help with but also unaware of other problems. we take it day by day and deal with things as we come across them.
