My Mum has vascular dementia

Discussion in 'ARCHIVE FORUM: Support discussions' started by Maggymay, Mar 22, 2006.

  1. Maggymay

    Maggymay Registered User

    Mar 22, 2006
    I have never been in a forum or discussion group of any kind before, but after reading all of your threads I hoped that you would understand my need to ramble on to someone who understands.

    My Mum has vascular dementia, I think it is vascular, the psychiatrist came to see mum last week at the request of her GP, after I mentioned my concerns about mum’s behaviour over the past 6 months or so.
    I pretended that the psychiatrist came to see mum to give her sleeping tablets. But she new it was more that that.

    All the psychiatrist kept saying when she had finished her (Chat) with mum was “what are you expecting from me?” what do you want from me?” of course I couldn’t say anything because I didn’t want mum to guess why she was there.

    Mum was broken into 5 years ago and had her leg broken, which has gradually brought about a drastic worsening of her conditions, ie heart failure, asthma and Emphysema.

    Her condition has deteriated so much that she is bed bound and due to her ill health the psychiatrist said that due to the lack of oxygen and blood flow to the brain some of her brain cells have died, and this situation has come suddenly rather than gradually like AD.

    She has been waiting for a heart bypass for a year, but was told 2 weeks ago by her surgeon that she was too ill to survive the operation, that she only has 1 lung, and the other is only working at 30%. She should go home and enjoy every day as if it was the last. And he then told me she would not be here long. (How long is not long)?

    So although mum has not had a stroke, I think it is vascular, both doctors have told me but I have forgotten too.

    So far my husband and I are the only carers. It is hard work trying to get a social worker out to assess for help. Our GP, mum’s and mine, agrees I am not well enough to do this on my own because of my and my husband’s ill health, however, after reading about all of you out there I know we are all in similar situations.

    At first our GP wanted mum to go into a nursing home. But I can’t face that yet, and mum is aright most of the time still, its just that as fast I we tell her something we have to repeat it over and over because she forgets, and she gets up out of bed and tries to move furniture around and empty drawers, just to prove she is fit, even though doing this will kill her.

    We also get insults and abuse, and our grandchildren who she loves now call her naughty gran because she says nasty things to them, when I try to tell her how she is upsetting them, she say she would rather die than hurt her grandkids, and will say sorry when she sees them again. But then forgets 2 min later.

    By the way my mother-in-law died 5 years ago and my husband and I looked after her for 10 years with Parkinson’s disease and AD.

    I just don’t know how I can do this again.

    I’m sorry if this is too much rambling, and you don’t all get bored but the social worker who I have only spoke to on the phone once, and she doesn’t seem that interested, and I’m afraid you are getting all my heartache, worry fear and anger.

    Please forgive me.

  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Maggymay,
    nowt to forgive and TP should have been called "The Ramblers Association" had that title not been taken already. It helps us all to tell someone what troubles us, and it helps others to read what we say because someone somewhere will relate directly to what we say.

    I know you don't want to consider it yet, but why not check out a few homes around the area? Care homes are by no means all bad ones - there are super ones out there too. Just include it in your options because you have a family and you owe them something too. I can't even conceive of the difficulties of looking after two people with dementia at home, in one lifetime.

    Much of what you say about her behaviour is pure dementia.

    I'm sure others will have more helpful things to say, but I just wanted to welcome you to TP. Please don't be slow to use it.
  3. holly48

    holly48 Registered User

    Mar 22, 2006
    Hi maggymay

    I read your message. I work as a care assistant in a care home, we often have people come in for what they call on rolling resbite care. Sometimes its to cover for holidays or just to give carers a break. I know at this time you feel a care home is not needed, but you need to look to the future, you must be feeling tired and in need of a break. Your social worker should be able to help you with this. At least your relative will gradually get used to living in a care home and it will be less stressful for them, than to eventually end up in there permenantly.
    Have a think on this, sometimes the home assess the person too and they can be more than helpful when it comes to placing them in a home.
    Social workers should be there to advise you not you advise them. I know your relative seems to you that she is fine at the moment, but stages will progress, you will become more tired and stressed, your relative will sence this and may become more aggitated and possibly aggressive. Do think on the resbite idea, at least you know you can have a break that is on going. I remember a lady she used to come in to our home once every 3 weeks for a week. Eventually she came and wanted to stay. She is still with us happy and contented in her own way.
    I hope this is of some help to you, good luck for the future.
  4. Michael E

    Michael E Registered User

    Apr 14, 2005
    Ronda Spain
    Margaret hi,

    really sorry to hear about your mum - and really sorry you are faced with all this again - horrid - and so tiring.

    I do agree with Bruce that many homes are very good indeed. Well run by caring sensitive people. It seems to me that the quality of life of the inmates is not necessarily totally 'Cuckoo's nest'! I suspect for many people, to be amongst their peers - people of similar interests, is not so bad - possibly preferable to living alone..... or with stressed out relations.

    When my dad was in a home in Fareham, there was a lady who used to check herself in for holidays! She lived alone and had no close relatives and found the 'conviviality' of a visit to the home efficacious! Just got bored at home - fed up with cooking and shopping and wanted a break with friends. I get the impression that many Cruise Liners are in fact mobile care homes on water -- full of greys --- partying away in a secure environment... Maybe I am overselling it but I think homes are having a bad press generally but do fulfil a useful function.

    So that's my 2p worth - I hate to think of anyone looking after someone with AD for a 2nd time in their life - too unfair.


  5. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Maggymay,
    Same name as my mum, so you are special already!
    So sorry that you are having such a tough time with your mum; I had to help make the decision to move my mum into a nursing home just after Christmas, I know how hard it is.

    Some suggestions:-
    Could you get some idea from GP or surgeon what your mum's prognosis is? "Not long" is not good enough; if you have some idea of the time scale it might help you make decisions.

    How old are the grandchildren? Are they old enough to understand dementia, and if so then they are old enough not to call gran naughty, if it is explained to them that it upsets her. Gran is not naughty, she does not want to upset her grandchildren, it is the dementia. Though I must admt that the only time I lost it with my mum was when she attacked my son who was about 8 at the time. They were both in the kitchen, and my son got in her way and she started kicking and hitting him. He was shocked rather than hurt, my motherly instinct took over and I just shouted that she was not going to do that to my child. Mum had no idea nor memory about the incident.
    Get in touch with your GP and see about getting a CPN to call; it will give you some support. Don't be put off by the social worker, get back on the phone and say you need some help, and that you need them to help you sort it out,
    If there is an AS near you, give them a ring, see what they have to say.

    The one thing that we all seem to find is that no-one in authority offers help, no-one tells you what help is available - having struggled bathing and walking mum about the house, someone said to us "well, haven't you got a wheelchair or bath seat."

    As Bruce suggests start looking into Nursing Homes; you do have to think about what would happen to mum if you were suddenly unable to care for her? At least you would be prepared. I hated the idea of my mum going into a Nursing Home, still do, but after many years caring for her, my father could nolonger cope. I must admit that I feel better knowing that she is safe, and that dad is not totally drained. If we are lucky, we love our mum's, but looking after them ourselves is not the only way to love and care for them; we also have responsibilities to ourselves and other family members. (I know that this might just be a case of self justification!)

    Take care. Looking forward to hearing from you again.
  6. Lila13

    Lila13 Registered User

    Feb 24, 2006
    Psychiatrists and Social Workers

    You'd think they'd know by now that if they are going to be any use at all they have to interview carers and "carees" separately as well as together. And if you write to them, the chances are they'll just lose the letters.


  7. janey

    janey Registered User

    Jun 29, 2004
    Hi Margaret
    My Mum suffers from vascular dementia too, and now lives in a nursing home as her condition is advanced. I'd just like to echo everything Amy has suggested, especially:
    Get in touch with your GP and see about getting a CPN to call; it will give you some support. Don't be put off by the social worker, get back on the phone and say you need some help, and that you need them to help you sort it out,
    If there is an AS near you, give them a ring, see what they have to say.

    It helped Mum, Dad and me a lot when the Community Psychiatric Nurse got involved - the GP arranged it, and the CPN and Mum got on really well - she was also able to help Dad and me to understand and deal with Mum's dementia behaviours. Also, the local branch of the Alzheimers Society were very understanding and helpful to Dad, usually by phone, since he didn't want to go to any meetings. My Mum was under the care of an NHS psychiatrist who specialises in 'elderly mental health' - the GP referred Mum to him. As Holly suggests, respite care might be a good option to consider - it was a lifeline for Dad, and at the time Mum seemed to enjoy it - I remember she and a couple of the other ladies formed a friendship, although they couldn't communicate by words - one of them used to stand behind Mum and stroke her hair - Mum loved it! Mum's CPN also arranged a few weeks in an assessment unit for elderly people with mental health problems, which was also good. Don't be afraid to badger your Mum's GP and the social worker - its their job to help - say you want your Mum referred to the CPN etc.
    Finally, I just want to say that its great that you've joined us other ramblers - the more of us the merrier! It helps me a lot to be able to share my distress and worry with other people who understand.
    Thinking of you,
  8. Maggymay

    Maggymay Registered User

    Mar 22, 2006
    Thanking you all

    :) Thank you all for your prompt replies and helpful suggestions, it’s so good to know we are not alone.

    Firstly, I know what you are saying Brucie about the nursing home idea, however, mum lives on her own in a flat just around the corner from us and it is a lot easier for me to go there 2 or 3 times a day, rather than have to get my husband to drive me 3 miles to the nearest nursing home (assuming that one has vacancies), where we would feel the need to be at every day for visits. I know that is where she will end up but when in the future.

    I thought Holly’s idea about Sometimes to cover for holidays is a great idea too; I could try if I get away in

    Thanks Amy I will get back to my GP so that I can get some idea what mum's prognosis is? And what they mean by "Not long".

    My grandchildren are 15, 10, 6, 4, 3, 2 and 1, which means I have a grown up son, and 2 daughters. My eldest daughter always gave me a break if I went on holiday once a year, including 4 days my husband and I had for our 35 anniversary in London last December.

    Anyway getting back to the point it is the youngest who don’t understand and we just tell them that gran cant help it, its just that she’s poorly and doesn’t mean anything she says and that she still loves them

    Thanks Jane I will be taking Amy’s advice about a getting a CPN to call. I had never heard of a CPN and had now idea what you were all talking about until I listened to all of you. Now I know what a CPN’s are thanks.

    Our GP is lovely and she gets exasperated at not getting the help she asks for us. So I won’t have a problem talking to her.

    I can’t believe how luck I am to have found you all.

    I’ll let you know how I get on.

    My mother-in-law lived with her husband when she had AD but he could not cope and refused to put her into a home. That’s why it was left to me to taker her to hospitals, doctors, wash and dress her.
  9. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi MaggyMay,
    Please bear with me here, but this post is going to sound a bit critical of you; please believe me when I say I have the utmost admiration for everyone who provides personal care for their nearest & dearest, but there does come a time when you have look at outside help realistically - that's not weakness.

    It sounds as if you have got an acceptable compromise of arrangements for your Mum at the moment, but I would reiterate Bruce's suggestion of checking out the care homes in your area soon, before you need to, so that you have a feel for what may be available. (CPN may be able to help/advise there). They may be suitable for the occasional week or weekend of respite care, so that you get a bit of a break soon.

    My reasoning comes from 2 things you said:

    "So far my husband and I are the only carers. It is hard work trying to get a social worker out to assess for help. Our GP, mum’s and mine, agrees I am not well enough to do this on my own because of my and my husband’s ill health
    You say yourself that you both have poor health, the situation will not be improved by either or both of you driving yourself to the point of breakdown.
    "My mother-in-law lived with her husband when she had AD but he could not cope and refused to put her into a home." You seem to recognise that your father-in-law was misguided in trying to cope by himself, BUT seem to think that doesn't apply to you!

    "however, after reading about all of you out there I know we are all in similar situations."
    There are indeed many people here who have to cope with bad situations to the detriment of their own family life & their own health. That is a RESULT of the lack of help available to them, not a challenge for everyone to emulate them. Please, recognise the need to look after yourself, and to look at the whole situation realistically.

    Best wishes
  10. Maggymay

    Maggymay Registered User

    Mar 22, 2006
    Letter to GP

    Hi Lynne

    Thanks for your thoughts, and I am willing to take on board everything Bruce and all advice you all give me, in fact as Amy suggested I took a letter straight to my GP’s surgery this morning, for her to read, Re: copy of letter to GP: Sorry to bother you again, however, after your visit yesterday, it seemed mum might get better enough for her to get out and about in the summer, but I was led to believe by her surgeon she did not have long left to live.

    Months Perhaps?

    Is this the case or not? Is there a time scale for mum? I need to know more information about her deteriorating health. It helps me plan more of what she needs. Perhaps a CPN later.

    Could you leave a note for me at the surgery or email me.

    What do you think?

    I am waiting for the Social Services to come and do an assessment on mum, this week I hope. After they have been I will know more about what I am doing. And will let you all know.

    Thanks again for just being here.

  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    Seem every one has given you so much good advice I would just like to add about the respite.

    I look after my mother for 3 years before I took a respite, I was scared & worried of all the horror story you read about them in the papers and TV , the social worker sorted it all out for me & the only complaint from mum was that they would not let her nap in bed when she wanted to.

    What area of UK do you live in?
  12. Maggymay

    Maggymay Registered User

    Mar 22, 2006
    Hi Margarita

    I live in the Warwickshire area, however, sometimes I only need to go to mums once a day to do her dinner, because so far the worst of her dementure is only her short term memory loss, its her physical health that’s the worst at the moment.

    I don’t know how long it will be before I need to think about a home. I am waiting for her GP to get back to me about her prognosis and am still waiting for the Social worker to get back to me about an assessment for her. They assessed her last year and she is now waiting for a shower to be put in.

    I am assuming it will take a few years before her dementure gets bad, in which case will her emphysema kill her first?

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