1. susie Q

    susie Q Registered User

    Dec 28, 2005
    7
    Leicester
    This is my first posting but I have read other threads with interest and relief that others are in a similar situation.
    My mother has dementia (un- diagnosed GP coming out this week). This Christmas things have come to a "head" as she seems to cry all the time apart from mornings when she is alert. She asked where my father was just before Christmas- he died 19years ago and then my sister 19 years ago..the grief was as raw as the day they both died when I told her. She is 87 and forgets her siblings have died as she is one of 12 it is fairly regular!! She keeps asking what is the matter with her- unfortunately she is partially sighted so has little stimulation like reading etc and she has been housebound for 4 years. On Christmas day I was in and out of her home all day as the TV broke! She kept ringing every five minutes as if it was new information.
    I spoke to the GP who has put Mum on antidepressants until she comes to assess her this week but she is so drowsy and is sleeping a lot. I feel so guilty to say that it is a relief when she sleeps but it is.. I have two teenagers who are revising for exams and I help them so it is a strain on everyone including my husband. I have a back injury so usually things done in pain. I don`t want my Mum to go into a home..she doesnt like strangers so I`m dreading the GP asking her about care!
    She apologises for her behaviour constantly and is quite aware- could she have Alzheimers? Thanks to the lady who gave info about British Gas!! I registered Mum.
    Happy New Year to all and thanks for listening/reading!!
     
  2. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Hiya Susie, sounds very similar to my mum whos 71 and diagnosed officially witrh AD two yrs ago.
    Depression goes hand in hand with AD, mums psychiatric team presrcibed an anti depressant almost from the onset.Regardless we have days of utter despair when shes acutely aware of silly things that shes said or done, and other days of total grief for family members or friends long since passed away.
    Coping is hellish, and I empathise with your feelings about the relief you feel when shes sleeping! I wrk full time as a manager of a dialysis unit , am a single parent to an 11 yr old, and Im studying for a degree! I care for mum with some help from the psychiatric community support team, but basically am running two homes. Some days, Id rather go anywhere than to mums to deal with her latest crisis, demands, incessant questioning, obsessive behaviour, and everything else that comes with AD.Something, somehow gives me the strength to keep at it.
    The great thing about this site , is that you realise youre not alone, everybody is hugely supportive, and however youre feeling at a particular time, you can vent it on here without recrimination or guilt.
    Theres a wealth of support for you and your mum within the community, ask your GP about whats available when he visits, and accept whats available. My mums not a good mixer either, and after initially sending the support worker away some months ago, they now have a fantastic relationship, and mum really trusts her.
    Every little helps!
    All the best Susie Ally xx
     
  3. Olly

    Olly Registered User

    Jan 3, 2006
    6
    Birmingham
    Advice Needed

    Dear suzy, I have just registered this evening and have been using this site for some time for the valuable and interesting information it contains.

    I have a mother of 75 who I believe suffered a stroke some 2 years ago and I am only just getting some help in the last few weeks so a diagnosis can be made. I am almost certain that it is Vascular dementia or Alzheimers. My mother will be having an MRI scan this weekend which is well overdue. I have had to take on Social Services, her GP, chemists, CPN and various other organisations.

    I am appalled at the attitude of some of the medical profession. I can only say please be firm with the Dr, insist on a memory test, blood tests, scans anything that can help. I found that when a person gets to a certain age they are almost always written off, and it's so important that they are treated fairly and as humanly as possible.

    I have had a bad day to-day, I organised a care plan with Social Services for my mom and they called to-day to see her only to have the door pushed in their face because my mom refused help. I seem to be constantly chasing her tail.
    I can sympathise with the behavioural changes, my mom has become an amazing liar! She is becoming very fond of chocolate or anything sweet and now drinks as much alchohol as she can get her hands on. I have been told that this is a trate of people who have dementia, have you heard this?
     
  4. susie Q

    susie Q Registered User

    Dec 28, 2005
    7
    Leicester
    Thanks Ally

    Thanks Ally it was so good to discover that I`m not on my own and useful ideas to ask the GP about. I was interested in your comments on "obsessive behaviour" as Mum continually asks me to "check things". She says "Is this safe, what about that.." If i say yes it is" she says you`re not looking!!!If it was not so exhausting it would be funny!It must be so difficult for you to study and work full time as well as beinga Mum. I tutor at home and often the phone goes in that hour for Mum to ask me to check her! Luckily my daughter can go to her until I get there. My Mum lives alone does yours? I will listen with interest to what the GP says because there is no respite at the moment. This summer we all had a short (3 night holidays) separately so that there was always someone to care for Mum- that was when it was good..since Christmas I`m not so sure now. Still this week may bring a diagnosis- what`s the first step if she is diagnosed? Thanks again Susiex










     
  5. inmyname

    inmyname Guest

    A relative in our family has been a CPN for many many years

    She insists that you only call in Social services when theres a total crisis as prior to that the kind of behaviour you are experiencing occurs
    Dementia patients do not want interference or strangers in their home , they object to the requirement of social services that they hold a key and all kinds of claims of theft etc will transpire

    She says calling in GPs , Social sevices etc simply causes many many more problems than it cures

    You have my immense sympathy because my 89 yr old Mother has already sent off concerned neighbours with a flea in their ear, screamed abuse at my gentle and caring sister

    I dont like to think the advice is correct but from all that i am hearing from others struggling with same problems its all too true
     
  6. inmyname

    inmyname Guest

    That too had been my first thought both for the safety of others and my Mother

    But now with the advice from the CPN which my sister wants to follow i certainly do not wish to cause a family rift .......my Mother has done far too much playing one off against the other for years

    Even in her demented state she is still doing it
     
  7. Jude

    Jude Registered User

    Dear All,

    For any of us who have family members living alone and whom you suspect are suffering from AD, I would strongly urge you to involve your local GP as soon as possible. Your GP will then make all the necessary arrangements to involve a CPN and a Consultant Psychiatrist at the earliest moment. The CPN will then help you with contacting Social Services.

    Whilst it may be true to say that in rare cases AD sufferers resent an intrusion into their lives, this is by no means the norm. The safety and comfort of AD afflicted people is paramount in EVERY circumstance and it is our responsibility as concerned family members to ensure that they receive all the help required as fast as possible to avoid fatal accidents or injury.

    Jude
     
  8. susie Q

    susie Q Registered User

    Dec 28, 2005
    7
    Leicester
    So helpful!

    Hi Olly thanks so much for your advice. When I read your last sentence I couldnt believe it because I was beginning to think my Mum was an alcoholic!!With Mum it`s crisps!! No hot food at all. She starts drinking after lunch and I feel that I am not helping as I buy it! She would be very upset if there was no Brandy (even though she calls it water in the glass!) I hadnt heard that there was a connection and still don`t know whether one problem is causing another!It makes me feel so much better to know that I`m not alone with these problems. Sorry to hear about todays problems- it is much worse than dealing with a child!I suppose a bit of me feels disloyal because I want to protect her and just keep the problems to ourselves. I will certainly ask about scans etc but she hasnt been out of the house for 4 years- thanks again Olly- Suzy :)

     
  9. Bets

    Bets Registered User

    Aug 11, 2005
    100
    South-East London, UK
    Hallo Susie and Olly,

    My husband has vascular dementia and I have a similar problem with his alcohol consumption, not helped by the fact that he is a non-insulin dependent diabetic.
    If there is alocohol available, he will drink it. He has always had a glass or two of wine with his evening meal, which he used to add soda water to, but a year or two ago, he dropped the soda water and began drinking long before dinner. He was getting through a bottle of wine a day, which is not a good idea for a diabetic (apart from being quite expensive!)

    I used to top up the wine bottle (without him knowing) every time he drank some, but when he started to drink earlier in the day, I adopted a system of secreting the wine bottles in my bedside cabinet and just leaving about a quarter of a bottle (heavily diluted with soda water) in the kitchen. I feel absurd smuggling bottles of wine up and down the stairs, especially as we have an open plan staircase that means I have to pass his armchair every time I go from bedroom to kitchen! He hasn't twigged yet. The interesting thing is that, if there is no wine left, he accepts it and doesn't make a fuss. I'm not sure that would be the case if I tried to withdraw it completely. And as I know he enjoys it, I feel that my compromise is the best I can do.

    Bets
     
  10. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Quote by Nada
    It is dangerous and unhelpful to make generalisation about people with dementia. Everyone with dementia is different and experiences dementia in a different way.
    What does seem to be a common thread is that after the initial rejection of help,it is accepted,and makes life a lot easier for the carer.
    My Wife enjoys her visitors from Crossroads,and I certainly enjoy the break
    Norman :D
     
  11. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    silver lining

    I think the 'stiff upper lip' syndrome stops most of us from either asking for or accepting help until we absolutely have to. It is such a tricky subject.
    However, I don't think waiting for a crisis will produce optimum results. It should cause a lot less stress to think ahead a little, and in my experience, Social Services don't just sit and wait for a call .... it took many months for us to get a care plan in place, by which time the need for help and support had become pretty urgent!
    And just one more thing: there is more than one way of introducing 'help', it takes a bit of imagination, perhaps the odd white lie (we acquired several 'long lost friends' who visited, rather than calling them carers/companions etc.), and as things have progressed (or deteriorated, as it were), the sad development of my husband not always recognising myself / daughters / friends and neighbours has brought with it the 'silver lining' of him not registering carers who now come in to make sure he is safe and comfortable. That doesn't mean he is not aware - it is fairly obvious who he is most at ease with, but whilst he would have kicked up a big fuss a year ago if anyone had said he needed someone to look after him, now that he is really not able to take care of himself any longer, he does not object to other people being around him.

    In common with most people on TP, we've had a very up-and-down Christmas and New Year, and I've come to the conclusion that the good thing about bad times is that you appreciate the good times so much more .......
     
  12. Jude

    Jude Registered User

    Dear Nan,

    I agree. White lies are a necessary component of dealing with AD. We all have to do this from time to time to keep our loved ones calm. We shouldn't feel guilty about this, but somehow we do....

    Jude
     
  13. inmyname

    inmyname Guest

    I am afraid that no amount of white lies or even downright black ones will have any effect on my Mother

    She is so deeply suspicous of everyone that she would indeed find ways to barricade the doors etc

    Somehow in between the la la land she has bouts where she would probably convince even the most experienced AD Doctor that she was perfectly normal
    She is also capable of being extremely nasty and probably vindictive

    So in her case the advice received so far from the CPD is probably correct

    I would have to guess its vascular dementia but whats still beating me is the 2 extremes of behaviour and the speed of onset
     
  14. Olly

    Olly Registered User

    Jan 3, 2006
    6
    Birmingham
    Advice Needed

    Hi Suzy and Bets, it seems that from what you both say, my mom's liking of alcohol is not unusual to her. I don't buy it for her but she lives in sheltered accommodation and quite often there is drink available there, but it is monitored by the Warden. Over Xmas she got through a bottle of Tia Maria and Bayleys and my sister who had her for Christmas was having to hide it from her but she managed to find it when my sister went out.

    I have also noticed that she can get through so many sweet things like a pack of cakes, chocolate, toffees and will eat these instead of a proper meal. She is gaining weight rapidly and I have noticed that her posture is changing, she is more hunched now and complains of pains in her hip, knees and her arm.

    Her incontience is getting worse and she now has a wet bed every night and If I don't go everyday she will get back into a wet bed. I am doing so much washing for her now because she cannot remember how to. I have discovered some great disposable pants, but she has now started to put these in soak when they get wet. I would like to know if anyone else has the same issues, have you discovered any useful aids or products, how can I remind her about using the loo.

    I hate what is happening to her, she still has days when she is highly embarrassed by her incontience and when I bath her she sometimes says that " It's not right, you bathing me, I am a trouble to you" The thing is that she is not and I would move heaven and earth to make her better, I think the brain is so complex that I wish I understand more about it.

    I am dreading the day when she has to be cared for 24 hours a day, and if she has to be placed in a care home, I would welcome other's experiences

    Also, one other problem that is bothering me, how do you get others in your family to take a fair share in the caring, why is it always down to one person. I am one of 9, admittedly, due to location, not all can visit on a daily / weekly basis but there are other ways of supporting. I am becoming angry with them and I am constantly tired of updating them everytime there is some news. I want to call a family meeting to ask for support but wonder if I am wasting my time.

    Oh well, I know that I am and will continue to support my mom as best as I can.
     

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