1. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    Although I joined a little while ago, haven't yet introduced myself!
    My Dad is 74 and has just been diagnosed as the early stages of dementia.
    Only really found out last year. Last August, while driving my mum up and down to see my nan who was ill ..... well, normally dad's around and so she wouldn't feel able to say anything ...... but this was the opportunity for her to start telling me about how dad was getting very forgetful ..... he was getting stressed about remembering exactly what shopping he might have to get if he went up the road ..... was flying off the handle at little things ... forgetting what had just been said to him ..... had even accused my mum of taking some money !!!! (My mum is a very even tempered person ...... she apparently did retort back at this one ....... she's been the the one who has always dealt with all the bills etc). I guess lots of little things ..... but I could tell it was getting my mum down.

    I suggested she mention it to her doctor ...... she wasn't sure about this, but she could see the sense that it it affected HER health, the doctor would want to know. A discrete conversation with my brother, who lives with them, confirmed that he was also concerned about things. So ..... mum had the conversation with her(their) doctor. Mum was worried that dad would really get annoyed if he thought she'd gone behind her back, but the doctor was brilliant .... just asked about his memory ('A standard question I ask') when he next had a check-up. He did say he was getting forgetful. They have subsequently had visits from the mental health team from Chase Farm hospital in Enfield ...... infact, they've been almost falling over themselves to conduct tests, offer advice/help to my mum ..... amazing really!! (I say this 'cos we had a similar thing with my father-in-law ....... but getting help with him was terrible). In fact, Mum has found it a bit overwhelming 'cos she doesn't see him as a 'bad case' ..... which he isn't at the moment I guess.

    He's just completed some tests, which we're waiting for the results of. The team have said that, once confirmed, they'll put him on the waiting list for (I think) the drugs that NICE have just withdrawn funding for ..... so not sure what will happen there.

    Mum doesn't want Dad to know about this diagnosis ....... it's just been tests on his memory as far as he's concerned. Part of me feels uncomfortable with this ..... I'm sure when he's got irritable it's because he DOES know ...... and this makes me feel sad ...... but that's just me being wet ...... when we're together, things are only just slightly different ..... I noticed, for instance, he seemed a little 'out of sorts' at Christmas when there was lots of people at my house ..... probably the break in routine. I've been having then round to me every week now, which Dad likes and it gives Mum a break; luckily I don't live very far away.

    But, Dad is still very fit .... does lots of walking ..... probably fitter than many younger than him! A nurse that Mum went to see on her own said she really aught to accompany him at all times ...... but we can't see the need to restrict him like that! He hasn't shown any problems about getting around his immediate and usual haunts ....... and he does know his phone number ...... early days I guess.

    I've suggested to my Mum that she/they arrange for all their accounts to be made joint accounts; they already have wills. But ....... is now the time to think about getting Powers of Attorney? How to suggest it without upsetting Dad? A friend of mine had all sorts of problems with her mother -in-law who developed dementia without giving this authority to her son ....... and I really want to make things as smooth as possible for my Mum's sake.

    Anyhow ....... having read around this site ...... it's nice to know this support forum is here ..... shame my Mum isn't on the Internet! I'll have to work on her!

    Take care, Elaine
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Elaine, and thanks for telling us your story so far.

    The symptoms you have described seem to be fairly classic.

    Whether to tell your Dad or not? That is up to you and your mum, really. You are correct in thinking that he may well know already. I chose not to tell my wife as I think it would have caused her such distress. Was I right or wrong? We'll never know. Was I worried about causing ME distress? Certainly, but I hope I was putting Jan's interests first. Others have made the decision to tell the person concerned, and that has worked for them.

    Each case is different; each decision, a personal one to the family concerned.

    Jan became very uneasy when with more than one person at a time. She found it difficult, I think, to screen out sounds from around her, to concentrate on the person she was addressing. Also, she was probably having problems understanding what was being said, anyway. Restaurants and pubs were a big no-no, because of the background noise levels.

    Does your Dad drive? If so, that is not recommended as his insurance would possibly be valid [ie he would be driving illegally]- although the process of withdrawing the freedom to drive from someone is a major issue, often.

    Enduring Power of Attorney? Yes, best to do it now. Why not have Mum suggest they both do one - one for each other. That may be the best approach. Don't leave it too late!

    You don't have to REGISTER the EPA for a while, so it seems, from your description of your Dad's condition at present.

    Best wishes
  3. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    Hi Bruce,
    Thank-you for your reply.
    Your own personal observations are probably the best sort to offer!! Thank-you!

    On reflection, not telling Dad is probably best ..... my unease is purely selfish ..... I think that I would want to know if it were me! However, Dad has always been an independent sort of person .... someone who 'sorts out' for others ..... who you can depend on for favours ..... I think the knowledge just might 'crush' his spirit if you know what I mean.

    Dad doesn't drive, so that's not a problem.

    Funnily enough, your suggestion re powers of attorney was how I suggested Mum handle the situation about changing all their accounts to joint ones. I'll pass that on to her.

    My Mum has increasingly noticed just recently that he has difficulty concentrating and I've noticed that he'll let conversations pass on around him. Mind you, he's never been the sort to be the centre of attention or the sort to want to actively participate in idle chit-chat, if you know what I mean ..... but I find I try to include him as much as possible.

    It's kind of 'odd' to suddenly be, almost, in the 'parent' role to your own parent. (Just an aside there ...... ).

  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Also strange for me to assume the parent role for my own wife!

    Bizarrely, Jan has become the child we never had, and the responsibility is crushing.
  5. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    Ah {{{{{Bruce}}}}} ...... I am sorry.
    Wish I had something more comforting to say ...
    I truely believe that something of the person is still there ..... and that they know and appreciate what you do for them.

    My mother-in-law had the same dilemma with my father-in-law. He was never formally diagnosed with dementia .... but sure that's what it was. Having seen what happened with him, I've been amazed with how much better the services in Enfield have been compared with Haringey (also North London).

    However, she also became his parent ..... he at one point forgot she was his wife .... he actually called her 'the woman looking after me' ..... which after 50 years of marriage must have hurt her terribly .... and yet, from time to time his old 'twinkle in the eye' sense of fun would show through .....
    But she had a very tough time over the last 5 or so years of his life (he died 4 years ago)

    Take care
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi Elaine, as usual our Brucie is spot on with his advice, just wanted to say welcome and do get that EPA set up now, if you leave it too late it can be a nightmare. You can get the form from your CAB with a helpful booklet. If you go through a solicitor you will be charged the earth and it actually costs nothing to set up. The costs come when you register it later if you need to. Love She. XX
  7. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    Hi Sheila,
    Thank-you for the welcome.
    Thanks to the info I found in your Resources forum, I have this afternoon had a look at the Public Guardianship Office Web site (which I notice Bruce has mentioned in another post today as well) ...... and had a look at their info/forms about what's involved with Powers of Attorney.
    Seems reasonably straightforward .... in fact easier than I thought ..... providing it's done now, as you say.
    Thanks for alerting me to the urgency of doing things now rather than later.

  8. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Welcome Elaine
    I don't think that there is much more advice that I could give,I think you are well briefed at the moment.
    I know the feeling bringing up a child again,just as wilful,I can see now where the boys get it from..
    I also think that Peg and I have reversed roles,I now shop,wash do housework etc,she now cannot remember how to do these tasks
    At the same time I look after Peg,I don't think I have ever worked so hard before AD.
    Our double shower is proving a success,less worrying than the bath,and makes my mornings a little easier.
    Day to Day
    best wishes
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Hi Elaine - my husband is the same age as your dad. He was diagnosed over 3 years ago now and he is still doing really well. He doesn't drive any more but that doesn't really bother him as I was always the one who liked to drive! He can get around all of our local area no bother but wouldn't think of going further into town etc without me. He still goes for shopping etc but always has a list. He can us the hot money machine because we changed to the pin to one he can remember. Once or twice he's forgotten where we said we'd meet and that's scary - I once drove all over looking for him. When he realised I hadn't turned up and would have had to return to work he went into a Building Society and asked them to look up my work number. This they did and he then went out to a payphone and called me! I told him to get home and he did!!! The Aricept seems to make a big difference to him and I hope that this wioll continue. He does know he has Alzheimer's but only refers to his 'memory problems'. He and I were together when the consultant told us. I think he needs to know that the odd things he does is because he has a condition. I think he thought he was going 'mad'! I'm 20 years younger than him and have always known that there was a possibility that he would become unwell or ill in some way before I did. Now that this has happened we're making the best of a **** situation. It took us about a year to come to terms with it and we had some rough patches. Now that we realise how lucky we are in comparison to others we will make the most of every moment we have together. Off to Venice for a week this Friday - have to do things while we still can.

    Sorry to ramble. Only meant to say welcome!
  10. ElaineMaul

    ElaineMaul Registered User

    Jan 29, 2005
    Hi Izzy,
    A good ramble helps dont you think?
    It's my Mum and my brother that take the brunt of Dad's mood swings and outbursts ...... to be fair, he has always had a tendency to get annoyed easily so initially my brother (especially) would get very annoyed with Dad in turn.
    However, having had the diagnosis (both my brother and my mum were there when the mental health doctor and nurse initially visited them at home) ...... well, I guess it has meant that now we realise it's the condition and not him as such and so you approach things differently ....... make allowances to avoid flash points, so things have been calmer.

    The one 'nice' thing from your story is that complete strangers ARE still willing to help others out; we're not quite the completely uncaring society one might think sometimes. Your comment that your husband thought he was going mad is the one thing that makes me think we aught to explain to Dad ..... although he does refer to his 'memory problems' ..... so I think he does know.

    Enjoy your visit to Venice. Funnily enough, I was only thinking the other day that Mum and Dad haven't been away for a long time (dont really know why) ...... I know they loved it when they went to Jersey a few years ago and I was thinking of suggesting they go again now ...... to enjoy some time together now while they can. I'll be round mum and dad's this afternoon (I work in a school, so this is holiday time) ...... must pursuade them to book something up ..... do them both good.

    Thank-you for your welcome,
  11. Rosi Strasshine

    Rosi Strasshine Registered User

    Mar 29, 2005
    Hi Elaine

    I have recently joined TP and today read your postings. I can empathise so much with your experiences with your Dad, in particular your comment about talking on a parental role. My Dad is alone now and depends on me completely to tell him what he should be doing, when to change his clothes, what to eat etc. When the family visit he listens only to me and follows me if I leave the room. Its very hard to lose that 'father figure'.

    Interesting also to read your comments (reinforced by those replying) about your Dad not liking arguing or fighting in any way. Dad is exactly the same and cannot even tolerate a discussion between family if people disagree, however, lightly.

    What a terribly sad thing AD is. How cruel for people to lose control over their memories and thoughts. My youngest daughter works in the States and he doesn't remember who she is, even though she has only been there for just over a year. My eldest daughter is getting married in July and he refers to her as 'that lady'.

    We have an Enduring Power of Attourney set up. Strangely it has been in place for years and was set up by Dad shortly after Mum died (15 years ago). Its as if he knew what was going to happen to him. However, if it wasn't set up I would have tackled it as I know how difficult things can be without.

    One last thing referring back to your comments about whether your Dad should know. When the consultant did his assessment some weeks ago he actually told Dad outright that he had Alzheimers. I was shocked and so was Dad. He looked as though he had been struck. I stressed all night about how he might be fretting but when I spoke to him the next day he had forgotten all about it (not sure if that was the AD or whether he deliberately ignored it) and insists that there is absolutely nothing wrong with him.

    Something that made me smile.................he has decided that the underpants he is wearing belong to someone he used to work with years ago and he keeps complaining that they are very old fashioned!!! I keep imagining what he would say if this person decides to pay him a visit!

    Chin up - this website is great. Sharing experiences really helps.

  12. TED

    TED Registered User

    Sep 14, 2004
    thanks bruce...

    Good morning all

    I know I have been here before but owing to work and home commitments dont have much time to look in as I would like, but I came back intoday and read this thread, and allowed myself to look back on the past year or so since coming to face Mum's condition.

    I'd like to say thanks to Bruce for his open and honest advice and that goes for others too, but having re read this thread again I do believe it answers many of the initial questions a lot of people in our position have. Perhaps someone can arrange to have it permanetly kept near the top of the discussion topics for others to read and gain a simple insight.

    Am aware of the welcome pack and other items, but I just thought this was someone speaking from experience and with understanding for everyone.

    For me Mum is getting worse, and it's a constant struggle for me to balance helping out with getting my own house in order. We are going on a short holiday (hopefully to cornwall, if we get that far?) next month, I will probably be in for more councelling again after that...

    thanks for listening as always
    keep caring, keep sharing

    love light and peace
  13. aowensey

    aowensey Registered User

    Jun 6, 2005

    Hello, I'm new today and read your posts with interest. My mother-in-law has poor short term memory and although we have been in contact with her GP, he says he can do nothing as she doesn't recognise she has a problem. We live nearly 200 miles away from her, she lives with my brother - in -law who is not very patient with her and has not pressed the GP to take more action. We try to see her every 6 weeks or so, we visited over the weekend. She was not sure who we were and didn't know which of our children was which. (They are her only 3 grand children) She is 69 and her memory has been deteriorating for at least 4 years. 2 years ago we took her on holiday and she packed her bags to come home evry day. She also has little idea of time and gets up at night, she is unable to make any decisions, she no longer cooks and has not bought any new clothes for several years- previously she bought a new 'wardrobe' each season. Yesterday we wanted to take her out for a drive to the area where she was born and for a meal - she refused to come.
    Surely the GP could do something for her. We don't know what to do next. We find it very upsetting to see her like this and not getting any help. Any ideas would be gratefully received.
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi Aowensy, welcome to TP. Could you try contacting the local branch of the Alzheimers society in your Mum in laws area? They would be able to advise you of what help is available locally to help. It must be very difficult for you at present being so far away. Sounds as if she is happiest where she feels secure like in her own home. This often happens. Although your brother in law may sound sharp with her sometimes, he is probably doing his best for her in his own way. I do hope you can find some help locally for them as this would help a lot. It is often the case that the sufferer does not realise there is something wrong. Until things reach a certain pitch, her GP's hands are tied I'm afraid. Thinking of you, love She. XX
  15. burnsj

    burnsj Registered User

    Jul 10, 2005
    Formby, Merseyside
    Hi, first time logging on

    Hi my name is Jenny,

    I am so glad this website is here for people dealing with Alzheimers. I wish we had found it earlier when things all started happening to my Grandpa.

    He is in an Alzheimers home now, the most difficult and heart breaking dissision we have ever had to make.

    It helps to read about other peoples experiences because I find so many people do not understand about it. They tend to think it is just memory loss and thats it. But as we all know it is so much more.

    Just a bit of background on myself, I am 24 and a civil servant from Formby. Grandpa was diagnosed in August 2003 and he went downhill so fast after that. We tried him on so many drugs after going to the memory clinic, each one had a horrendous effect on him.

    One made him hallucinate and see things like rats, another made him violent towards my Granny because he thought she was trying to break into their house, and he started to have small strokes when on another drug.

    His behaviour problems where so hard to deal with when he was at home, it started off when I was at University when he was just waking up after a sleep and would be dissorientated for an hour or something not knowing who he was or where he was. This had been going on for a while and Granny wouldnt tell anyone, she was trying to hide it.

    But he would have these funny spells and then come out of it and be completely normal again.

    The next thing was when it was Granny and Grandpa's golden anniversary and they went to the lakes with Mum and Dad, he went much worse then, every day he would talk rubbish and he would ask for tea for eight people that werent there etc.

    This was when Mum said he needed to go to a doctor.

    After he was diagnosed he got much worse, by now I had finished Uni and was back home to help out and he had dementia all the time now but still knew who we all were. He would say that there were people in the house all the time, we would have to be careful what we put on the telly because he would think it was real. Like the rats on life of grime. . he would think they were in the house and he bacame very distressed. This was the effects of a drug he was on we believe.
    But it may have just been part of the disease?

    He had an obsession with locks and would be paranoid about alarms and security. He would hide things all the time, Grannys jewellerey, combs, dirty underpants etc as he had started to lose control a little.

    Next thing was he started to go missing, he would just leave and go walk about. We would go and look for him everywhere and luckily the neighbours found him one day in the village. He never got far really.

    We had to call the paramedics out twice while he was at home because of the stroke he had, Is that to do with the Alzheimers or did it happen separateley?? Or was it the drugs??

    The second time was in Marks and Spencers he collapsed again. The hospital were not very good with him at all because they had him in a normal ward with other people and just left him to his own devices. That is no good for someone in that state, he was wondering all over the place with nobody even paying attention to him. We found him by the toilets with a box of tissues he had obviosly taken from someones bed and he said he had been in the car park. To this day we wonder if he actually did go in the car park or if he just thinks he did. But the hospital said they thought it was a TIA (mimi stroke) but werent sure and because of his desease there was nothing they could do anyway.

    Night times were the hardest for Granny, we had a job getting him to go to bed because of his obsession with the locks. . he would get up in the middle of the night several times and Granny was scared he would go out, so she tied him to her with a piece of string so she would wake up when he did.

    Also he started bed wetting etc, which was so hard for granny. And around this time he also bacame unsteady on his feet. He couldnt get in and out of the bath and would fall down the stairs if he wasnt helped. All the hallucinations were still going on, one night he asked me if I was going to keep the baby as if I was pregnant or something. He wanted to call the police because we were talking about a neighbour who had been broken into years ago. Sometimes he would scare granny and be aggressive which is nothing like his true personality at all.

    The one thing that helped us so much was the day centre. It was great for Granny to get a break, she has lost about two stone and has gone so old looking now and to be honest she is very depressed and a negative person which wasnt the case before all this. Grandpa started going twice a week, but things were so bad that it was soon increased to Monday to Friday.

    The bus would come and get him from the house and he loved it and would often wait by the door at weekends too when it wasnt coming. I think he thought he was going to work or something. Granny used to call it his club.

    Unfortunatley, Granny couldnt cope any more and we all had to have a big talk. He went into a care home first, which was not suitable, they didnt record events properly which led us to believe he had got a little better. He had been taken off a certain drug just as he went into the home. They told us he was no longer bed wetting and he was sleeping all through the night instead of getting up four or five times a night.

    We felt so guilty that we brought him back home, we couldnt have him there when he wasnt as bad as he had been, but what they told us was just not true. Granny couldnt cope again, and a day later we got him into another home, a propper nursing home. They are wonderful there. But it was awful at first, Grandpa would ask when he was coming home and what could we say? He still knew who we were at that point most of the time but he was just too ill to be at home, in a way we wished he didnt know us then so it didnt hurt him.

    He dosnt know us now at all. He cant speak really, no real sentences come out and he whispers, he cant finish a sentence at all. He is completely disinterested in us and everything else. The only thing he does is move furniture round and take things and hide them.

    Granny visits him most days, and I go every week and we take him out to the shops in a wheelchair but he dosnt know us. He is having lots of fits at the moment and some may possably be small strokes. We have been to a neurologist at the hospital who was great, he had a brain scan on Friday to tell more.

    The neurologist said that she can tell he has had a stroke on the left hand side of his brain because the right hand side of his body is weak. He drags his right foot and his right arm shakes and sometimes swells as does his foot. Also she said that the reason he cannot comunicate is because the left hand side of the brain controls all that.

    She is sending him to a speech therapist, it wont do any good will it? I know it wont but lets give it a go. At least it gets him out for an hour or two.

    Granny has a normal life again now because of the home, well apart from Grandpa being there, at least she can rest and not worry about where he is. He dosnt know anything about it now.

    He used to be a bank manager (Royal bank of Scotland), he was only 74 when he was diagnosed. Thinking back though, I saw signs of this years ago, five six years maybe longer.

    He was such a lovely man, gentle and quiet. He would play golf a lot and walk the dog Jessie (golden lab who he loved). He used to love us all and be so interested in our lives. He tought me to ride a bike and used to take me to work when I first got a Job as a teenager. He has two other Granddaughters that live in Canada that he used to look forward to hearing about and seeing when they came over, he dosnt know they exist now. Or me.

    Although once or twice I have heard some recollection of something. . on christmas day we were visiting him and I gave him a present (jelly babies, what else would he be interested in?) Granny said "Now Jenny gave you those, who is Jenny?" and he said Baby. And no he hadnt read the box!! He hadnt even taken the paper off yet. So maybe thats how he remembered me that day.

    Also when the neurologist asked him where he was he said Rainford, which is where he was brought up as a boy.

    Sorry to go on, this was only meant to be a quick message. But if anyone can relate to any of this please send one back to me? I am not sure how to use this website yet I must admit.

    Thanks for reading all that!

    Jenny xx
  16. burnsj

    burnsj Registered User

    Jul 10, 2005
    Formby, Merseyside
    from jenny

    Hi, my names Jenny, I read about your experiences, and it sounds just like when my Grandpa went to the doctor to be tested. It is so strange how similar it is.

    My Granny too didn't want to tell Grandpa what was going on because he was very much aware of things then.

    Yes, now is the time to get power of atturney. It is important. Heart breaking but important. We had to do that, Grandpa was told by the doctor that he had alzheimers and he fully understood then, he was just very quiet that day.

    We have found that Sefton council have taken a lot of money from Granny and Grandpa since he has been in care. My Granny feels she cant move house because if she does down size which she needs to do, they will take half the left over money that she gets.

    I feel for you and your family and wish you all the best. Please ask me anything because the likelyhood is we have been through the same thing, Grandpa is quite far down the stages with this now.

    I also have actually sent you a reply that I should have put on the main bit for anyone to read, sorry for that, I havent used this site before and dont know what I am doing.

    I think it may help Granny to hear about other people that are going throught the same thing as she has. She is very down a lot of the time.
  17. Lulu

    Lulu Registered User

    Nov 28, 2004
    I have found this thread very interesting and informative. I can relate to almost everything.

    Norman, please would you tell me more about the shower? Mum's bath needs changing as she complains about being able to get out of it, and I thougt a shower might be a better option. Thanks.
  18. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Welcome to TP!
    Thank you so much for taking the time to describe all your experiences: I identify with almost every single paragraph, except that my husband (75) is still at home. The future is very scary, but we can't escape it, can we? We have to face up to it and make each decision as it is being forced upon us. I try hard not to think too far ahead, and to enjoy the unexpected bright moments.
    United we stand.
    Best wishes!
  19. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Lulu
    we had the bath taken out and a double shower cabinet put in.
    Peg has got used to it now and it easier than bathing.
    There is room to assist if needed.
    We paid to have it fitted but SS fitted grab rails for free of charge.
    I looked at all these walkin baths but they are in the £3000 price range,our shower including tiling etc was nowhere near that.
    Hope this helps let me know if you need more detail
  20. Lulu

    Lulu Registered User

    Nov 28, 2004
    Mum's bath in her new place needs replacing and I was looking in Saga magazine at all these fancy showers, complete with seat, grab bars etc. It would seem sensible to me to change to a shower, and a double one would seem to fit the bill perfectly, adding the bits you want such as the bar. Now seems to be a good time, as she complains about the bath being hard to get out of. Does your double shower fit into the space of the bath?

    Thanks for that.

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