Welcome to the vascular dementia forum

Discussion in 'ARCHIVE FORUM: Resources' started by Sarah Day, Sep 30, 2004.

  1. Sarah Day

    Sarah Day Registered User

    Sep 28, 2004
    Gordon House, London
    #1 Sarah Day, Sep 30, 2004
    Last edited: Nov 23, 2005
    Welcome to all members

    This forum has been launched to provide an area where anyone interested in vascular dementia can share their experiences - professional or personal, ask questions and provide support and information to others.

    This is part of a new project, called ‘Hearts and Brains’ which aims to raise awareness of the disease throughout the UK. You will see there is also a project update section where new information relating to the project will be posted. Please feel free to make comments about the project itself and what you believe it should be delivering by posting messages in this forum.

    Hearts and Brains project manager
  2. Andrew

    Andrew Registered User

    Jul 9, 2003

    Hi Sarah

    Welcome to the forum. Very few people know about the variety of diseases that cause dementia. We have to raise awareness about the links between healthy hearts and minds.

    Best of luck
  3. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi Sarah,

    This sounds like a great campaign and a way of raising awareness. I was about to make a big list of questions to get the thread going (e.g. what is vascular dementia etc) but went straight to a brilliant factsheet on the subject.


    Like all the societies factsheets, easy to follow and very concise.

    BTW - I was very impressed with the last society campaign that tried to get children involved. Kids are very smart and it was a great way to inform them about dementia and how it changes peoples lives. On that note, I'd just like to say that making children part of any campaign can only be a postive thing. I wish as many adults where as understanding and treated my father as well as my daugher does.

    Good luck with the campaign
    Kind Regards
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi Sarah, my Mum had Vascular dementia/Alz. It did vary a lot from straight Alz. so I will be very interested in this and if I can help in any way, please say. Love, She. XX
  5. Kayla

    Kayla Registered User

    May 14, 2006
    Symptoms of vascular dementia.

    My Mum has vascular dementia and is a nursing home after a fall. When she was still at home, she had almost continuous periods of feeling sick and then days when she was actually sick. The GP could find no obvious reason for this but adjusted her drugs and we looked at her diet.
    Since being in the nursing home she hasn't felt or been sick. Is nausea one of the symptoms of vascular dementia or is it unrelated? Mum has to take 7.5mg of prednisalone a day to control her rheumatoid arthritis. Could this drug cause sickness?
    The nursing home seem to provide a very good selection of meals and there are cakes or bicuits with afternoon tea. Lunch is a two course cooked meal and supper consists of soup, sandwiches or toasted snack, and some kind of fruit or desert. Mum eats really well, but she still looks thin and her limbs are stick like. Maybe the digestive system is affected as well as the brain.
  6. sue h

    sue h Registered User

    Jan 2, 2004
    Maidstone, Kent
    Hi Kayla
    As far as I know nausea is`nt normally a symptom of vascular dementia. I would be inclined to think that it was a side effect of the drugs your Mum is taking. Since my Dad has been in a nursing home (January this year), he has lost a lot of weight. He now only weighs 7 stone despite eating well, they now give him Ensure supplement drinks. Maybe you are right to think that there is a connection with the brain and the digestive system. The problem is that they become so weak in themselves. Dad can no longer walk on his own and it is quite upsetting to see him when the nurses move him and his legs dangle like a puppet.
    Hope you find an answer to your Mum`s problem, perhaps another chat with her GP is required.
  7. Kayla

    Kayla Registered User

    May 14, 2006
    Weight loss

    Dear Sue,
    My Mum has not been walking since she fell and needed a hip replacement. Her hands are weak due to the arthritis, so I think some of the weight loss could be due to muscle wastage. She has improved physically so much in the NH and it is interesting that she has not complained of nausea. Perhaps the diet contains easy to digest food, as most of the patients seem extremely frail. It is a NH for the elderly and EMI. When people have several health problems it is difficult to see what is causing the problems, as drugs also have side effects like nausea. I have also wondered if Mum sometimes forgot to eat when she was at home, as having an empty stomach can give a feeling of nausea.
  8. sunny

    sunny Registered User

    Sep 1, 2006
    Weight Loss in VD

    Mum has VD and has lost a lot of weight in recent months. She says she enjoys her food, but she doesn't always eat or drink properly and has to be encouraged and food and drink intake monitored (she can be quite sly with eating and drinking - she has been known to "hide" food and says she has eaten it). The brain affects the whole body and as VD is a brain condition, then a lot of symptoms are going to present themselves sooner or later with this condition as brain cells are damaged from repeated TIA's (tiny strokes in tiny blood vessels inside her brain). Her walking is very affected now, sometimes her walking is ok other times not so good.
  9. Jo Co

    Jo Co Registered User

    Oct 27, 2006
    Lonely in the day

    Hi everyone,

    I'm new to this forum and hope someone might be able to give me some advice?

    My dad (75) was originally treated for depression about 4 years ago. At that time he was living on his own (Mum died in 1986). I was about 2 hours away and concerned that he was losing weight and there always seemed to be more red reminders for unpaid bills etc etc than is normal. So I took him to his gp who put him on prozac. He did get happier, but the problems remained the same. The next step was to get him to move nearer me, to start with in a rented house and now with me and my partner, in a house we have converted to give him his own space.

    Through referrrals under the new gp, he has been diagnosed with vascular dementia about 2 years ago. I have arranged for him to go to the local day centre once a week and he is always more chatty when he gets home, but overall the deterioration in his speech is the biggest problem to cope with.

    I am concerned that during the day when we are out at work, because he sits home alone, he is not getting enough contact with other people to help maintain his speech skills.

    I have recently cut down my work to 4 days per week, so I can take him out in the car, but this is not enough. Should I try to get him to the day centre for more days (he doesn't seem overly keen when I suggest this), or are there care services where someone could come and just spend time with him? (I saw Crossroads mentioned on another message). Is variety in his life better than more of the day centre?

    What does anyone think is best?!
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Welcome to TP!
    You say
    It is - in my opinion - a falacy when people say "use it or lose it". Sounds good, but in the case of dementia, I think it is a bit crass. It is easy to say for people who have not experienced the development of the condition. Experience shows differently, I think.

    Whatever faculty is failing - it is going to go, and I really don't think trying and trying to retain speech - or anything - actually helps the person - though of course it does help the person/carer organising it as they feel they are doing something. We must not under rate the importance of that.

    When my wife - who has vascular and Alzheimer's - began to lose the ability to write her own name, I sat with her for countless hours believing that we could re-train her. All that happened was that she became more and more depressed as we rammed home to her how she was losing the capability. so I stopped and accepted the inevitable. She was less stressed for my doing that.

    By all means do, and organise, anything you feel might help, but do it in hope, rather than expectation.

    My wife was 55 at the time described above, by the way.

    Good luck1
  11. connie

    connie Registered User

    Mar 7, 2004
    Bruce, you have hit the nail on the head as usual.

    I do believe that a lot of what we try to achieve is to "put our own minds at rest"
    of course a lot of what we try to achieve does help, but the inevitable will happen.
    We really do have to minimise the upset to our loved ones, no matter what we feel.
  12. rowan21

    rowan21 Registered User

    Jun 4, 2005
    dorset, uk
    Hi Jo, my father suffered from vascular dementia, sadly or rather fortunately whichever you feel, he past away on feb 13th this year after finally losing his "Gag" ability, the ability to swallow.
    He was not diagnosed until 4 years into his deterioration when finally he was found wandering in the early hours of the morning looking for my mother who was in hospital. The only advice I can give you is what the others are saying. That is, just go with it, dont try to correct too much as there always seems to be a part of them that knows whats happening to them. I would put him in the day centre for more days, at least you know he is safe. He may have another little stroke one day and lose his memory of where you are and may wander off to look for you or try to cook something and forget its on. If you can get care, take it. Peace of mind and safety for your parent is critical. Be strong.
  13. Jo Co

    Jo Co Registered User

    Oct 27, 2006
    Dear Bruce & Rowan,

    Thanks for your advice, I will try to get dad into the day care centre for more days, but it is a good one so places are in short supply!
    With regard to him cooking anything while I'm out, I put a child lock on the hob and the oven controls are not easy to work out either, so I don't have worries about that. He hasn't shown any inclination for wandering off - feels the cold too much to even come for a walk with the dog now, so I hope that the cold will stop him from going further that the garden gate if he does develop that tendancy.

    I'm feeling quite tired today as he decided to 'get up' at 4.00am this morning - had arranged all his shoes/slippers in odd pairs, put his trousers over the taps in the bathroom, and cleared the top of his chest of drawers onto the bed. He was sitting in his armchair with his pjs on, one sock, one shoe and a fleecy jacket waiting for the day centre minibus to come. I managed to get him back to bed, but then I couldn't sleep.

    I'm sure I will have many more nights like this to come, but feeling tired all day just serves as a reminder of how things are now. When I think of the happy childhood my parents gave my brother and me (which was also the reason for having dad to come and live with us), then I can't really be too down about it.

    If I wake up again tonight, I'll be thinking of everyone out there in the same boat as me!

  14. jasperty

    jasperty Registered User

    Jul 24, 2006
    West Midlands
    Mom has VD

    It has been a while since I have been on talking point, mom has deterioated alot over the last couple of months, at present in hospital as she was wondering in the middle of the night knocking on neighbours doors and saying weard things, bearing in mind she lives in a retirement apartment, so everyone is elderly and then phoning me several times in the night and getting histerical, saying people were in her apartment, this had been happening and getting worse of the last few months, also not eating properly, barrakading herself in, except when she goes wondering.

    Has been very confused whilst in hospital, I have asked SS to assess her residential care and should hear this week. I suppose I always knew it would come to this, I have found a very nice home which I will need to do a top fee for but I am quite happy to do this as long as I feel she is safe and well cared for.

    Everytime I go to see her, every day, she askes the same questions and I have tried to explain she cannot go home and needs care and looking after, but yesterday on a quite lucid day (they have given her something for the anxiety but
    I am not sure it might be too strong) she asked why she could not come home with me and I look after her? I feel terribly guilty, but I just could not cope.

    Sorry to go on.

  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear Pat

    Don't those "why can't I live with you?" questions just tear at you? My mother (post stroke) used to ask that all the time (still does, sometimes). I am fortunate (sort of) as I have an actual reason why it can't be done (I live in the US, my mother is in the UK, and there is no way I could get 1) a visa or 2) health insurance for her). Even if I could, I know I couldn't do what many people do - care day in and day out. I have enough problems handling the whole thing when I go to stay with her (several times a year). It almost feels like you're abandoning a child. She lives in a close/extra care apartment attached to a nursing home, and in her more lucid moments is adamant that she will "not go and live with those loonies next door" (i.e. the nursing home), but I know it will probably come to that. Mummy has been in hospital twice - once after the strokes, once following an epileptic seizure, and it is a very confusing situation for a dementia sufferer to be in. Do you know what they have given her for anxiety? I ask, because since Mummy was started on citalopram (Celexa) for her depression, she had, in fact been much more lucid herself - definitely her memory is better.

  16. Kayla

    Kayla Registered User

    May 14, 2006
    People in my home at night!

    Dear Jasperty,
    My Mum kept phoning us up at night because she thought there were dark men sitting on her lounge floor watching her television and in the end she got really distressed about it all. She also started to fall and become very unsteady on her feet.
    When she went into a care home, she did seem much better with a regular routine and correctly taken medication. She is now in a nursing home after breaking her hip and is more stable in condition. The bad hallucinations can be controlled by drugs, or ar least when there are people around to calm and reassure, she is not so upset by her strange dreams.
    I don't think it is kind to leave someone who has hallucinations on their own, as my Mum was terribly frightened by them. She has reached the stage, at 81 when 24 hour professional care is best for her, especially as she is now unable to walk and has disabling rheumatoid arthritis.
    I hope the doctors can find the right medication to help your situation, but sometimes it seems that a care home is the best solution in the end.
  17. jasperty

    jasperty Registered User

    Jul 24, 2006
    West Midlands
    Dear Jennifer and Kayla,

    Thanks for your replies, I am not sure what medication they have given mom at hospital, but will check. Went last last as usual, quite lucid asking the same questions, then gets angry with me, however, she did apologise, which is very unusual for mom. Cannot answer all the questions, e.g. when am I going home, tried to explain about 24 hour care, seems to understand and asks when she is going to the home, and where is it (same questions day after day). Can be very waring as she cannot remember you have told her hundreds of times. Sometimes I think it me?

    Should know today or tomorrow about funding and hopefully will be able to get her moved to care home, however, the home I have found is a Residential Care Home and has been told by the SS they need to get a variation order for a dementia patient, they have agreed to do this, so I am waiting to see how long this takes, but as my soscial worker only works Wed, Thurs Frid, I have to wait until she is in tomorrow, also she had a week of sick and this had delayed things somewhat.

    Mom is not in need of NH yet and the home I have found seems to offer very good care and stimulation, hope I can get this sorted.

    On a brighter side amidst all this my daughter had her first baby on the 1st November 'a girl' Isabella Freya, I was with her at the birth, it was wonderful, have taken baby to see Mom, took her down to the cafe in the hospitall, mom thought she was wonderful, but is illusinating about her being there now when she isn't.

    Thanks for listening, it does help.

    Hope everyone else is coping.

  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Congratulations on your granddaughter!

    Repetative questions are par for the course, I'm afraid. There are some days when I am better able to cope with them than others. I found that writing down the answers to the most common ones helped, so that she could look at them when I wasn't there, but some people might find that too depressing or distressing. Only you know how that would go.

  19. jasperty

    jasperty Registered User

    Jul 24, 2006
    West Midlands
    Got Funding

    Hi Everone,

    Thought I would let you know Ihave managed to get the funding from SS and have found another nice home only a few doors away from where I live and they have dimentia patients, reports on the home are very good, it is very handy, as long as she doesnot get out and walk up the road. Waiting to speak to SW to
    sort out move. All ladies at this home 21 max and everyone seems very nice, hope mom settles, but I suppose it will take time, I can also furnish the room with her own furniture, which hopefully will help her.

    I will keep you informed.

  20. Lila13

    Lila13 Registered User

    Feb 24, 2006
    Glad you've found a home so near, and hope all goes well with the move.


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