What is vascular dementia really like?

Discussion in 'ARCHIVE FORUM: Resources' started by Chris, Oct 6, 2004.

  1. galliwotsit

    galliwotsit Registered User

    May 10, 2005
    Wonder what the doc's would make of our diagnosis?? It's strange how they dismiss the people who spend the most time with their patients, who live with and know their ways and equally know when something is not right.

    We are fortunate that when I finished work I was made redundant and used my money to buy a caravan in anglesey - George's passion was planes especially Military and the van is very close to an air base - he has lost all interest and that's major for him - our dog well his dog really - he can't be bothered with but he used spend hours teasing him and playing with him, it might not seem much to outsiders but it is so disheartening to see him losing interest . Now he is going to a centre where he is painting and is enjoying it but he cannot multi-task so this is his new passion - nothing else matters when he is lucid - only painting another picture.

    I have only kept a diary of what happens for him when he is actually out of sorts but now I am going to write daily about his moods and general health if nothing else I will be prepared for the next TIA!

    I have really felt much better myself since finding out that the the site covered his illness, I don't feel so isolated. I have also just started reading Selfish pigs guide to Caring - I am not alone!!!


  2. rowan21

    rowan21 Registered User

    Jun 4, 2005
    dorset, uk
    Dad and Vascular dementia

    Hi There, I apologise in advance for this long post, hope you dont get too bored!
    Recently perusing the internet and Dementia society websites I blundered onto yours.
    Somewhere where people who are in"the Know" can express themselves and share with others also in "the Know" their experiences of Dementia.
    Thank you.
    I would like to share with you my experiences of my fathers dementia, Where to start?,....... At the beginning is usually the best place I guess.
    1992, my father decides after 45 years of service it is time to retire from working for the Ministry of Defence and sell up the family home in Middlesex and move to North Cornwall to an Idyllic little fishing village called 'Port Isaac'.
    Lovely you think, beautiful scenery, mostly wonderful weather, a small fishing harbour and a little cove around the corner.
    Only one problem! Dad decides to retire completely, ie. not do anything! From being chairman of this and that, Grand Master of two Masonic Lodges, entertaining associates in various london clubs to sitting in an armchair, watching Countdown, and reading the telegraph all with a little glass of something (purely for medicinal purposes only).
    It was I suppose inevitable that something had to give. In his case it was his brain.
    It started with memory loss and unreasonable behaviour, losing his temper at the grandchildren for no reason. Losing his way back to his house and not knowing whether he had bought what he wanted at the local shop and going back to buy it again.
    The next few years are obvious, he got worse and worse until in May 2004 Mummy was admitted to hospital with a heart attack. All this time I had been travelling from Dorset to Cornwall on a monthly basis and in this situation I was down to care for Dad every weekend.
    I left him on the Sunday and on the Monday morning I was phoned by the local police to say they had found him and his dog wandering on a local dual carriageway thinking he was in Wales?
    He was admitted to Bodmin Hospital and has been in decline rapidly ever since.
    I wont go into detail of the traumas we have been through in the last year but suffice is it to say that although attempts have been made to place him in wonderful homes in Dorset his health has failed on each occassion as has his manner on many. This has led to him remaining in the hospital who are absolutely wonderful. Thier care is faultless as is their patient/family correspondence.
    He has recently had all his fingers amputated on his left hand, his sight has gone in his right eye (through damage due to a fall) and he broke his nose last week with another fall. He has one to one care to prevent the falls but he just keeps going down. He weighs about 6 stone but is eating and his temper is quite irrational most of the time.
    We are now just playing the waiting game. It could be days weeks or even months. All I pray is that his "passing over" is soon, to see a man who was so clever, interesting and entertaining, decline to a rambling walking vegetable is just plain heart breaking.

    I have just finished writing a childrens fully illustrated book called "I want a grandad like that" which will hopefully help 'under 10's' understand dementia in child terms. I am hoping to get it published and raise money for the Dementia charities. If anyone has any ideas on how I may go about this without resorting to "vanity Publishing" I would be extremely grateful.

    Best regards
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Rowan, I am so very sorry to hear about your Father, it must be very worrying for your Mother and yourself together with the rest of your family. I think you are being extremely brave, you have realised that the illness is not going to let go it's hold and that the inevitable will one day happen. But you are right in wanting also for your Father not to suffer falls or any other pain unneccessarily, this was how I too felt with my Mum. You are doing all you can, just try to be with him as often as you can and to support your Mother with love and understanding. It is a hard thing to come to terms with this dementia lark, your book sounds wonderful, I congratulate you on being able to be constructive in spite of the pain you are going through. Thinking of your Father and all of you, love She. XX
  4. mailife49

    mailife49 Registered User

    Oct 21, 2004
    your dad

    Hello Rowan,

    very interesting article written by you... I was very interested in your idea of writing a book for children touching this subject. I really hope you are lucky with it and it helps children understand that people with this illness are in fact, rather like children, and vulnerable and needy of love.

    Over here in Spain there was a run done the other day, just read about it in the local newspaper, and lots of relatives/and carers took part in the walk(sorry not run!) some of them were a bit too hefty for strenuous running!! So at least this time, the money profits made by it were to go towards this charity......... 3000 people in Cartagena (south-east) - coastal town in Spain, have alzheimers........and who knows how many others who haven't been diagnosed yet........

    I would love to read your book once it's published (am sure it will be) and in fact will buy one whenever it comes out, why don't you have a personalised website and we could all go into it, and buy your book at the same time - I would recommend you joining with Pay Pal as it's a really good, safe way of paying for items over the internet - I do it with ebay. So count me in, when your book is released to the general public, ok?

    I think it's a terrible shame about your father's having just moved to Cornwall, and finding himself with too much time on his hands I expect, after such an active life - but who knows what causes it all, eh?? You show great love for him and pride in evythg. he achieved, but there's nothing wrong, on the other hand, I feel with just wanting a very laid-back life in a sleepy wee village by the sea. He maybe thought he'd been doing too much??

    My mother seems to be stabilised for the time being, and my sister sent me photos of her as she is now - and it wasn't such a shock , I think she looks great!in spite of weight loss - as long as she's eating.

    I'll see for myself in the late summer and hope to give her a laugh or two!! I always was the comedian, like her!!!

    It's so nice to read all your stories, I like this website because it's small but well laid out and gives you plenty of practical advice, ie. re. wheelchairs, grab rails and so on.......and a lot of insight from other peoples personal experiences shared.

    All the best,
    hope your mother's better now, (after heart attack)
    ps. and hi to sheila and all other moderators and members here.
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Rowan

    just a small point relating to your description of your Dad's 'retirement'.

    I read an implication that because he stopped work and stopped pretty much everything, that is why the dementia came to him. The old 'use it or lose it' thing.

    I don't subscribe to these neat little mottos, another of which is "if you get it for free, you don't value it".

    'use it or lose it' is a neat way to get people involved in a variety of things, but I don't believe that trying to get someone with dementia doing things can materially affect the progress of their condition. [my view only, remember!] It can of course make them feel involved, occupy them, do their self esteem good - all good reasons to maintain activity - but I don't believe it affects the steady ingress of the disease.

    I reckon your Dad already felt the effects of the dementia way before they became apparent to you. He probably hid his worries for a long long time.

    Retiring to Port Isaac, you say It was I suppose inevitable that something had to give. In his case it was his brain.. I'd say that his brain had already started to give, and that is probably why he wanted to move someplace quiet. Each time he was involved in something before retirement, the lodges, work, whatever, he would probably have felt worrying losses of 'something'. He would have begun to lose confidence, he would have realised he was having to cover up his 'shortcomings'; he would have been afraid.

    Your Mum will probably also have covered for him for some time. Often it is the case that a couple can 'manage' for ages until they have to be split for some reason. That is when the extent of decline of the dementia person is suddenly noticed.

    The situation at present sounds awful, and I hope there is relief soon.

    Best wishes
  6. jennyhill

    jennyhill Registered User

    Jul 19, 2005
    Experiences of the diagnosis of dementia in relatives

    10 months ago my father was admitted to a assessment unit within a psychiatric hospital, diagnosed with vascular dementia. This was a very distressing time for myself and my family and it would help us all to hear about other peoples experiences with this issue.

  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Jenny and welcome to TP.

    Can you tell us a little more?

    For instance, how long was he assessed for?

    I'm assuming he was only in for a period and is now home???

    My wife had three periods of assessment in all, each of two weeks, in a specialist psychiatric unit of a hospital.

    I went to look the place over before Jan was admitted and the experience left me in tears. How I ever managed to persuade her [against my own judgement] to go in, I really don't know.

    It had to be done, of course, another example of one having to do things one hates, but hoping that it will be for the good of one's partner. There seem to have been so many of those things!

    These assessments were over a couple of years, as she slowly began to decline, and be more difficult to manage at home [no help was available, so it was just me caring for her there]. After the last assessment she was moved straight to her present care home, which happened to be on the same general hospital site.

    I found these periods of assessment some of the most distressing episodes we had, for several reasons. Firstly, most of the other patients being assessed were very much oler than Jan. Most of them were far more advanced. I felt a huge responsibility for leaving her there and a huge helplessness at going from her - I visited her each day, sometimes twice a day. I absolutely hated hated hated it.

    On the way to the second period of assessment, I was driving her down the M3 [the centre was 25 miles from our home] when she turned to me and said "is this far enough away for you to dump me now?" This made my feelings of guilt increase a hundredfold.

    The only thing to be said is that now she has been in her excellent care home for four years, much worse in mental condition of course, but better looked after than I could have managed, and better physically, sort of.
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I heard about this one on Radio 4 some time ago when Simon Weston [the Falklands War hero] was talking about it.

    On my mobile I have made two entries:


    In case of emergency

    Each points to the same number.

    This seems a good idea but I did wonder, in the early days at least, whether everyone would figure what ICE means - hence the expansion of the acronym. I guess the ones that most need to know will figure it, should the necessity arise!
  9. Anya

    Anya Registered User

    Sep 11, 2005
    East Sussex
    vascular dementia

    My husband was diagnosed in March this year 05 with VaD. He was fit, healthy, slim, played tennis five times weekly until 2 years ago he had cancer of the prostate. following a radical prostatectomy he came out of hospital with MRSA which lasted six months and 3 re-admissions to hospital. After this he was very weak and because atrial fibrillation had been diagnosed, he then had to have a pacemaker fitted. After this, in July 04, I noticed he had dis-orientation and memory problems. He has normal blood pressure, and low cholesterol levels. He is 69. He has never smoked and has been a moderate drinker and has not suffered a stroke, as far as we know.His mother had Alzheimers for five years until she died at 92.Where does VaD come from, how is it caused, how can we be sure of the diagnosis when all VaD sufferers seem to be so different ? confused. Anya
  10. Sandy

    Sandy Registered User

    Mar 23, 2005
  11. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Anya, factsheet 402 might be worth a read too. There do seem to be several causes. I can understand your concern. Perhaps the consultant who diagnosed it could give you more in depth answers which would relate specifically to your husband? Thinking of you, love She. XX
  12. Sarah Day

    Sarah Day Registered User

    Sep 28, 2004
    Gordon House, London
    Risk factors for vascular dementia

    Hi Anya

    I'm sorry to hear about your husband and if there is anything I, or my colleagues can do to help you get through this difficult time then please call the helpline 0845 300 0336.

    In regards to your queries, unfortunately we do not have all the answers as to what causes vascular dementia. What we do know are that there are a number of factors which put people at an increased risk of developing vascular dementia. These include stroke, high blood pressure, cholesterol and diabetes. Heart conditions are also considered to be risk factors and individuals with atrial fibrillation are five to six times more likely to develop a stroke and dementia. However, it is important to say that risk factors are complicated. Just because someone has a risk factor, doesn't mean dementia will develop. Equally, some people who have none of these risk factors develop dementia. In your husband's case, there may have been a combination of factors involved.

    A healthy lifestyle is considered an important part of preventing some of these conditions developing and hence indirectly, we anticipate it may reduce the risk of developing dementia. A healthy diet (low in saturated fat and salt and high in fruit and veg), plenty of exercise, not smoking and only drinking alcohol in moderation also has a role to play in the management of some of these conditions, e.g. blood pressure. There are also effective drug treatments available so what is really important is that any of the risk factors which might have caused or be contributing to the progression of the dementia are identified, treated and monitored.

    How are you and your husband coping?
  13. sandy25

    sandy25 Registered User

    Nov 30, 2005

    This is my first visit to the website and forum and I can't believe how helpful it is to read other peoples experience of living/caring for someone with vascuar dementia. My father suffers from multi infarct dementia and is in his early 60's. To be honest I'm still confused about the difference between this and AD and at first (well at first I thought my whole world had fallen apart) but I hoped it wasn't going to be as progressive. However I've got to be brave and start thinking about what its going to be like. My mum is caring for him and since his diagnosis a lot of the concern for my brother and I is about how she's going to cope/whether she's going to cope, and I think somewhere along the line we've lost the focus on dad. I'm just trying to think of a good christmas present to get him and I'm struggling to think of things that will stimulate him. At the moment he just pretty much sits and watches tv all day - anyone got any ideas on this subject? :confused: I'm a bit bemused by the lack of aids for people with dementia out there e.g a cd player would be nice for him but it would have to be one that could be easily used but the way technology is now they are all covered in tiny buttons!
    Anyway, I'll get back to reading some more threads now I've had my input!
  14. connie

    connie Registered User

    Mar 7, 2004
    Hi Sandy25, warm welcome to T.P. I am sure you will get lots of help and advice, now that you have found us.
    I think in a lot of respects A.D and Vas.D are very similar, and agree that it is hard to find suitable gifts, especially as they cannot embrace new technology.

    I still buy Lionel C.Ds and DVDs but he is unable to use the media players himself - so sad - but he still know what he likes. Regards, Connie

    P.S. Make your next posting into the main discussion board, you will receive lots more replies.
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    There is certainly a need for a campaign for awareness for vascular dementia. I only no this now as mum has AD, My father who is dead now 4 years had a 2 heart attack then a stock , His systems as I look back to the time before his death I would say he had vascular dementia

    He was a drinker & gave it up when he had his heart attack was a heavy smoker , but just cut down his he had breathing problem all ways very chesty .

    (Did some confuseing thing that i always wonder why ? now If he was alive now I would take him to the doctor as I would say he had vascular dementia)

    I was told yesterday evening at my local AZ group about heart & brains awareness, thought I would find more info on hear about the warning sighs or how to avoid it must be on the main site, our love one now have AD or VD & all we can now do is look after them, but find it sad that they do not have good medication for vascular dementia

    So I am wondering are they saying to us you ,me our generation , 40x that we can avoid VD if we our more health & look after our blood pursuer Est.? As all this affects the oxygen to our brain so we get vascular dementia .

    & I hope the Message get out to the younger generation for there future .
  16. Sarah Day

    Sarah Day Registered User

    Sep 28, 2004
    Gordon House, London
    Good for you - good for your brain

    I agree - it is vital that we get the message about identifying and treating conditions like high blood pressure, cholesterol and diabetes out to as many people as possible.

    In the next few months, as part of the Hearts and Brains project, we will be developing information on this website about these conditions which put people at greater risk of developing vascular dementia along with more information about the importance of a healthy lifestyle. What sort of information would you like to see featuring?

    In the meantime, you may be interested to access an excellent publication which has just been produced by Alzheimer Scotland. Do post any comments or feedback you have on this forum.

  17. Kayla

    Kayla Registered User

    May 14, 2006
    Symptoms of Vascular Dementia

    Some of the symptoms that people described at the beginning of this thread, I've noticed in my mother, well before we knew that any thing was wrong with her brain function. She had a number of fainting episodes, which were dismissed as being untypical (one was after my father died). She has had periods of being very tired and sleepy, with weakess in her hands and legs which was thought to be connected with her rheumatoid arthritis. Now she is in a nursing home, the ups and downs are becoming closer together in a downward spiral.
    Mum has had periods of deep depression for many years although it never occurred to her to seek medical help for it. I wonder if more people have vascular dementia than is realised. Also, some one mentioned a greater awareness of things. One day, I was feeling worried about my 91 year old mother-in-law who was in hospital, but I didn't want to tell Mum, and she asked me why I looked so sad.
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    #38 Margarita, Jun 15, 2006
    Last edited: Jun 15, 2006
    Thank- you for that Link Sarah Day

    I found this very Interesting read have pick a few things out about AD my mother who has AD

    My mother never smoke or drank only maybe 2 0r 3 glasses of wine at Christmas, & then when she got older glass of white wine with Sunday dinner never took HRT .

    but did have high blood pressure & did not control her Diabetes when she got it in her 60s as mum was very over weight so had to take tablets for diabetic .

    I always felt that mum not having her diabetic medication controlled also her cholesterol was very high slowing down the blood flowing to her brain which may have contributed to mum getting AD

    PS Just read this part Go for regular health checks

    I better get down to the doctors for a check up as my father had a heart attack & then things above in what I said mum had
  19. Kayla

    Kayla Registered User

    May 14, 2006
    Memory loss

    We've just had an e-mail to say that my 91 year old mother-in-is not expected tp survive the weekend and may pass away tonight. She doesn't have dementia, but she does have short term memory loss. She was unable to remember whether she'd eaten her lunch or not, or if she had already rung. She's a really lovely person and we had a super Christmas 2005 when she stayed with us.
    My husband is going to try and get down to the Isle of Wight tomorrow, but I'll have to stay at home and look after the animals (2 horses and 2 dogs) It doesn't seem possible that I probably won't see her again. She was like a second Mum to me and we always got on well and had a laugh together. I guess she has done quite well to reach 91 and still be able to hold a sensible conversation and she was still quite nimble at Christmas.
    My Mum is 81 and in a wheelchair saying rather weird things and remembering things which didn't happen and forgetting things that did. It will be hard to keep this news from her as she seems to know if I'm feeling sad, but there doesn't seem to be any point upsetting her any more than necessary. It is difficult having one frail, elderly relative, but even more difficult having two or more and having to cope with everything all at once.
  20. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Kayla, so sorry about you MIL. Thinking about you.
    Love Helen

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