Not such a merry christmas!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Jo T, Dec 27, 2004.

  1. Jo T

    Jo T Registered User

    Dec 27, 2004
    5
    Chichester
    Hello everyone. I am a new member and logged on to the site after spending the last few days with my mother and step-father over christmas. We have been aware that my mothers short-term memory has been deteriorating for some time, but when she was diagnosed with pernicious anaemia we latched on to this as being the probable cause and thought that our worries were over. How wrong we were!

    Her memory continues to deteriorate, and her visit over the last few days has led me to believe that in fact I can no longer kid myself. Besides the memory loss is the night wanderings, coming into my and my husbands bedroom fully dressed in gloves and coat, very confused as to where she is. She also appears to have OCD, constantly checking her gloves over and over, and taking out and replacing things in her bag.

    This morning she even tried to get me to have the bracelet that we gave her for christmas saying that I should have it as she didn't really wear it any more!!

    We are going to take her to a private specialist in the new year as the specialist she saw previously would not help as mum is drinking, sometimes to excess.

    Any way, I must go now as they are still here and my abscence is being noted!! Just needed a bit of support as I am feeling rather low.

    I hope that everyone had a good christmas, although I think I know what we would all have wished for if it was possible!!

    All best wishes,

    Jo
     
  2. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Not such a merry Christmas

    Dear Jo

    Welcome to TP.

    Sorry to hear about your mum.

    Certainly she needs to see a specialist as soon as possible.

    Although she certainly sound to be suffering with some form of dementia do not be in a hurry to jump to conclusions until she has had a proper diagnosis. So hope for the best and prepare for the worst, which is what we all do.

    There could be all sorts of reasons for her memory lapses even the drinking could be affecting her.

    I cannot understand why a consultant refuses to help if he thinks that drinking is a problem, without passing her on to a specialist who deals with alcoholics.

    Is your step-father able to cope at present?

    Keep posting and don't be afraid to ask for advice on anything relating to your mum.

    The amount of advice and help available on this site is really tremendous and freely given.

    Cheers Barraf
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Jo
    youdo not say what Mother saw a specialist for?
    Your first port of call should be your GP.
    See him/her and explain the situation,this will probably be quicker and certainly less expensive than going straght to a private consultant.

    Regards
    Norman
     
  4. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Jo, can I just second what Norm said in his last post, GP should be your first port of call here. I had similar with my Mum and it is only right you get them to explore all avenues as there can be other reasons for her behaviour besides the one we all fear the most. Thinking of you, love She. XX
     
  5. ang

    ang Registered User

    Dec 26, 2004
    5
    Re: Christmas Stress

    Hi,

    I too am a new member just like Jo and I too spent Christmas with my Mum and Dad. My dad was diagnosed with AD a year last April and it came as quite a shock as he is only 59 years.

    I agree with everyone else, the first port of call is the GP. He was fantastic in helping us obtain a diagnosis and when the results actually came, the same support continued from his consultant, who is regularly contacted by myself to bend his ear.

    I have joined the Society for some general guidance, the ad is progressing so quickly with my Dad, that it is frightening. I wondered if any other carers have been through the possessive stage. He will only use a specific knife and fork and various items of crockery, is this something which everyone else has experienced? One more query with regards to any benefits which can be claimed, I have submitted a form for DLA (complicated or what?), is he likely to qualify for this benefit?

    I am dreading New Year - how can you welcome in the New Year when you know what is to come but my best wished to everyone.
    Ang
     
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    #6 Sheila, Dec 27, 2004
    Last edited: Jan 17, 2005
    Dear Ang, I think it depends on your Dad's age. If he is under pensionable age it is DLA, but over, you have to apply for Attendance Allowance. My Mum was in her 70s when I applied for A.A. so I could be wrong, but I am sure others here will confirm one way or another for you. Dont forget that once this has been granted then a carers allowance can also be requested. As regards the ownership bit, it does seem several people have mentioned this, so could be a common thread so to speak. I found a way round it was to have several items exactly the same so as one was always to hand when needed. Love She. XX
     
  7. ang

    ang Registered User

    Dec 26, 2004
    5
    thanks

    Thanks for your reply, I never thought about buying items the same, I suppose thats the help of having a site like thinks two heads are better than one!!
    Angxx
     
  8. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Dear Ang
    My husband is 57, he is just the same everything is his, has to use the same things all the time, like Sheila I buy two or even three of most things otherwise its difficult to clean anything.
    Fred gets DLA I get carers allowance, they may refuse the first time. Don’t give up, go to the local Alzheimer’s office and ask for help filling in the form they know what to ask you to get the right things on the form, it’s like exams at school if you put the right word down you get a point put another word that means the same you get no point and points make prizes.
    Anne
     
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Ang, glad to help. If you don't manage to get the DLA first time, go for appeal, do as Anne says, get help from Alz soc. or Citizens Advice, Age Concern, Disability Alliance etc. When you fill it in, always go for the worst day scenario, after all, this illness only gets worse, (sorry don't mean to burst anyone's bubble but it's a fact). If you keep hassling and get back up from GP, Specialist , SW. etc. you will get it for sure, because it is already understood this illness warrants it. It's just the darn system, paperwork, and who reads it. If they have experience of the illness, you'll get it no prob. If they are ignorant of the problems it causes, they may give you hassle. (And no, I do mean ignorant. Once you have travelled this path you would NEVER underestimate the severity of it!)Love She. XX
     
  10. Doreen

    Doreen Registered User

    Dec 3, 2004
    50
    Oldham
    Dear Ang,

    My husband was diagnosed 4 years ago at age 61, our CPN from the hospital who visits once a month applied for his DLA and he was awarded the low rate. In February this year because of his deteriation the CPN applied again for the High rate, this dragged on from February to November and after many phone calls he received the high rate back dated to February. You cannot apply for carers allowance until the DLA is completed, so I then applied for carers allowance but was not allowed it because by this time my husband was 65 and I was getting a pension on his national insurance, so it was carers or pension, pension was more so i chose that. After that my daughter who helps me when she can, applied for the carers, she got this with no trouble at all I couldnt believe it as she doesnt even live at home. I think as sombody else pointed out my daughter must have known just how to answer the questions. Hope this information helps

    Best Wishes Doreen
     
  11. ang

    ang Registered User

    Dec 26, 2004
    5
    re: previous replies

    Hi again,

    Now I have found the site you are going to be sick of me as I feel I have so many questions to ask.

    Dad does not know that he has the illness so do you think it is better if the person knows? I want him to know but my Mother and Sister are dead against it. With regard to the DLA we are already at appeal stage and I am really doubtful if he is going to get it. As he does not know that he has the illness no representative from the DWP has been able to meet with him. I think my Mother is trying to protect him, I 've tried really hard to explain to the representative but I see what you mean by IGNORANT!! In mt last letter I recommended that someone spend the day with a carer of someone with AD to see just how hard it is. I worry about my Father but at the moment my Mother is more ill with looking after him. I wonder if Mum will ever reach a stage where she is willing to accept any help. I think she feels guilty because of his age as most of the sufferers in the local day hospital are all 70 plus. My mother is building a wall around herself and blocking off all the people who care about her. Now that I have signed up for the society I am hoping I will be able to pass on some help to her - I just wish she would accept that he has the AD and that technically, without sounding too harsh this is it. We have to live with it everyday and do the best that we can...
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Ang

    We don't get sick of people here on TP as we have all been there, are there at present, or are waiting to be there.

    We all have something to contribute. Even if it is only our own despair, then that helps others because at first we all think we are alone in our own despair. It helps to know there are others, and we can share all sorts of information.

    There are so many people on TP, and we all come at this from different angles, with different experiences of life, and with different attitudes. That is the power of TP - you are bound to find someone who can help in some way.

    With regard to your first question - I never told my wife she had Alzheimer's. Each person has to judge their own situation and the effect the news will have on the person concerned. I'm sure we both knew, but never voiced it. Somehow that made it more manageable - in our case.

    There is no right answer here that will suit everyone.
     
  13. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi all, we always referred to Mum having "a few memory problems now" this fitted for her and also for the authoritarian bods who could also refer to her GP etc. for confirmation of AD. Love She. XX
     
  14. nikita

    nikita Registered User

    Jul 31, 2004
    92
    a lot of the tips on this site are very relevet for the young people i work with they mainly have autism and learning difficulties, when gran was first diagnosed a lot of stategies i use at work could be adapted for her ie, picture timetables/routines, in fact at times visits at the nursing home are very similiar to being at work. i wonder if initally the same areas of the brain are damaged.
     
  15. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear Annie

    As Bruce says whatever works.

    When Margaret was diagnosed she was present when the Specialist told us she had AD. So I just carried on and while I never say to her you have AD, I talk about the AD support group and the AD outings and the AD newsletter and anything else appertaining to the Society.

    She never argues or says I haven't got that, or anything of that nature, so I suppose she just accepts it. Either that or she doesn't know what AD is. In either case it is not a problem for us thank the Lord, we have enough without anymore.

    Cheers Barraf
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Strange, but I often wish that Jan HAD argued. She was so accepting of anything I said to her [except when she was sundowning]. The responsibility was - and is - crushing.
     
  17. Jo T

    Jo T Registered User

    Dec 27, 2004
    5
    Chichester
    Dear Sheila, Norman and Barraf

    Thank you for your kind words and questions. In reply, my mother was originally referred to a mental health specialist by her GP who is very aware of the situation. I too was flabergasted that my s-dad was offered no further help by the specialist, and I am keen to meet with my mums GP, if she will agree to see me, to try and gain a bit more insight into what her thoughts are and how we can proceed. i intend to call her as soon as the holidays are over and take a trip up there.

    With regards to my mums drinking I really don't know the extent of it. While she was with us she certainly was not drinking to excess by any stretch of the imagination, but apparently sometimes at home she has had bouts where she has had a lot. My s-dad, I believe, has taken the step of removing the alcohol from the house so this should solve the problem as mum never leaves the house on her own any more, so will be unable to get any more.

    My s-dad seems to be coping quite well at the moment, and is extremely good with mum, but I know he misses conversation and was so glad to spend time with us over christmas. I have a brother and sister who live within half an hour of mum but so far have stuck their heads in the sand with regards to what is happening and have been happy for me to take it all on board. They have both admitted as much to me but I have made it clear that they have to start playing a part as Tony needs their support.

    I did raise the subject of her memory loss with mum while she was here, but she refused to acknowledge that there was a problem and said she was happy and would not see a specialist as she didn't trust them!! That conversation was probably the most lucid she was for the whole of the holidays! She became 'mum' again and I was the child who shouldn't be challenging her like this!

    It will be interesting to see how we get her to a specialist. Does anyone know if we can have a home visit for this kind of thing if she refuses to go?

    Thank you

    Jo
     
  18. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    23
    Hornchurch
    Hi Jo,

    My mum had her initial assesment by a consultant at home. So yes, diagnosis can be done at home if she wont go out. The G.P will have to know so he can note that on his refurral.

    I hope things work out for you, its hard to know what to do for the best at first isnt it? I'm sure you will get a lot of support here at TP The people here have been fantastic when I'm struggling.
     
  19. Chesca

    Chesca Guest

    Dear Jo

    Don't worry too much about the booze thing. What happened with my Mum is she too took to her favourite tipple (previously only high days and holidays treat, had far too much to do to be bothered with all of that she would oft tell me).

    Gradually I could see she was becoming what one may politely refer to as a lush. To challenge her would be to cause a row until I fully came to realise, and was made to realise once diagnosed, that through the illness she really had forgetten she had previously had a drink. We then took steps to ensure that it didn't happen, although Dad would always make her a night cap to take and drink in bed which helped to settle her for the night - he called it 'our bar'. It was extremely difficult initially so you have my sympathy.

    My situation is now such that after the stress of the whole damn shooting match I am thinking of following in her footsteps (or should that be stumble steps?).

    Take good care and let's hope things become a little more manageable over the coming months. Well, we can live in hope...........

    Lots of love
    Chesca
     
  20. ang

    ang Registered User

    Dec 26, 2004
    5
    Dear All,

    Jo sounds exactly like me and our situation. Its very difficult with Dad as we have hidden the ad from him. All his visits have been done at home even down to me getting power of att with the DWP. I feel that there is so much red tape. Unlike Jo and her stepdad, my Mother has not accepted the fact that my Father is really ill and with New Years Eve fast approaching she has refused all company and has decided to go to bed early. The consultant has always been ready to discuss anything with me or my Sister and for that I am grateful. I have reached a milestone today in the fact that she has finally admitted that she now needs help. I have arranged for the community nurse to meet with us to advise us of the options available. He too went through quite heavy periods of drink but we have now solved this problem by advising him that the medication he is taking states he is only allowed one glass of alcohol - thankfully - he has accepted this.

    I wanted to thank you all for your support so far since I have joined the site and to also wish you all a peaceful New Year.
    AngXX
     

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