New to dementia - lots of questions to ask.

Discussion in 'ARCHIVE FORUM: Support discussions' started by Margaret W, Jun 12, 2007.

  1. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi all,

    My mum has not yet had a diagnosis, but I'm pretty sure she will. I do know how bad it can all get as my aunt suffered for 10 years (or rather her son did), and I've talked to lots of people about it. But it's the early stages I know nothing about.

    It's a long tale cos I have so many questions. I'll put the questions in capitals, so you'll know what they are.

    Dad died 3 years ago, mum is now 80. Symptoms started about 14 months ago. At first, nothing specific, I just noted odd bits and pieces like constantly counting the money in her purse, not seeming able to give the right change, not believing me when I said she had 3 bank accounts, general forgetfulness, repeating herself. It might seem unkind, but she has never been the brightest in the bunch, so when she said her clock was broken and I said it might need a new battery and she didn't understand me, I just put it down to her not being very bright. Then there was an episode with a broken table lamp that she insisted on ramming a new bulb into when the lamp was actually dangerous, and she started screaming at me instead of being pleased I was sorting it out.

    Next she started losing her way in the supermarket, and buying totally unsuitable foods if I didn't watch her. Then she complained of her back hurting while dragging the vacuum cleaner upstairs and I told her she had another one upstairs. She got very angry and insisted that she hadn't, but she had. She said she didn't know about it at all.

    Then came the revalation that my dad had been to see her. I told her it was her imagination. At first it was just once in a while, but gradually she insisted he was there all the time. That's when I took her to the doc for the first round of mental tests and blood tests. Borderline, they said. But it got worse. She started cooking meals for him (so she said, I don't live with her, but I did catch her boiling an egg for him). It doesn't bother her that he visits, but that he won't talk to her and he won't eat. Now he brings two men and a woman and they all sleep in the single bed in the spare room. Dad goes out to work, and down to the pub. She even asked her grand-daughters who phoned if they wanted to talk to him. She phoned me to ask me if he was at my house. So off to the doctor again. Borderline.

    Things started to move when she called the doctor out to see Dad, and when the doctor arrived - no Dad. So we have now seen a Psychiatrist for more tests - borderline.

    In between calling out the doctor and seeing the Psychiatrist, Dad's sister died. She was concerned that he needed to be told, and I found a note she had written to him - "John, bad news, your Mary has died".

    Up to that point, my mum hadn't mentioned dad's recovery to anyone outside the family, but I started to get phone calls from her neighbours telling me they were concerned, she was out in the garden looking for him. One night they spotted a strange man approaching her door and she let him in. They went round and asked who he was, he said from the council, they asked for his ID and he legged it fast. Mum has totally forgotten this, she probably thinks it was my Dad. She's also had two nasty falls in the past 10 months needing weeks of treatment but she's forgotten them. She's forgotten some of her relatives, denies that she has seen her beloved niece from New Zealand in the past year, says people haven't phoned in weeks when I know they have. Even accused me of not being in touch.

    I've never really been involved in my mum's day to day life in the past 35 years, we were never in each other's pockets, we saw mum and dad less than once a week and my dad was a lively conversationalist, we didn't talk about humdrum stuff. So I now find that I don't know who her friends are, I only know a couple of neighbours, I don't know how her week pans out. I'm starting to learn.

    About a month ago, the neighbours told me she was up at 5 every morning vacuuming, but it didn't bother them as they are early birds. She told me she got up at 7.30. Then she was up at 3.30 when the milkman called, but didn't start vacuuming till 5. Now she's up at 3.30 with the TV full on!!!

    Also a month ago, she arrived at the old ladies afternoon tea club at 8.45 in the morning. She said the clocks were wrong, and all the old ladies turned up at 8.45 a.m., and the telly was wrong as well. I checked her clocks, they were all fine. She would not accept that she had made a mistake.

    Two weeks ago we were going for a brain scan. Tuesday afternoon. I said I would collect her at 4 p.m. Monday 10.30 p.m. she wanted to know where I was and why it was dark. Something was wrong with the clocks again, she said. Tuesday morning 10.30 a.m. she wanted to know where I was again, we will be late, she said. No mum it is only morning. I arrived at 4 p.m., she had no idea why I was there, thought it was a social call (which I don't do). I noticed her drinking sherry, she normally has a glass in the evening. I mentioned that it was a bit early and she thought nothing of it. I then get concerned that she is drinking too much and check the cupboard to see if last week's bottle has been drunk. There are nine bottles in there!!! On the way to the hospital she remarked how odd it was to be having a scan on a Sunday night. It is Tuesday afternoon, I said. She would have none of it, and still won't.

    This Sunday she rang at 10.45 a.m. to ask where I was. At home I said. Did you go to church? No, I don't go to church any more. But you were here at 9 O'clock when we set off. No I wasn't, I was at home. Wouldn't have it. I arrived at 2 p.m. to take her to Tesco, her neighbour came out to tell me she had phoned the man who takes her to church at 5 a.m. I asked her why she had done that. I needed to know who was picking me up, she said. Mum, you mustn't phone people at 5 a.m. Oh, it didn't matter, I needed to know. I ask for the man's name and phone number, she doesn't want to give it to me. She does, but she isn't happy about it. He tells me that she rang another person at 3.30 a.m. wanting to know who was picking her up, and the lady said Mr C is coming for you. So he got a phone call as well. She tells me (again) that all the clocks were wrong and everyone was confused, and it wasn't just her. I told her she mustn't put the TV on at 3.30 a.m. I don't, she says, your dad puts it on!!!!

    I have checked that she can tell the time properly. All her clocks are right, and clear and easy to read. I've noticed that she has two clocks in her living room and kitchen (has had for several months), and is constantly checking her wristwatch. It strikes me that she is "losing track of time", i.e. she checks the time fine, then ten minutes later imagines that several hours have gone by. I noticed when I took her for the brain scan, it took us about 25 minutes in the car, and she thought it had taken over two hours.

    Then the sad bit. Two sad bits. We are going to the doc again tomorrow at his request. Not sure what for. She says she won't go. I say she must. We need to find out why she is behaving strangely. She doesn't think she is. Then she says "you think I am going off my rocker, don't you?". No mum (lie?), the brain wears out just like the rest of the body when you get old, we need to see if we can help you".

    Then I sighed at the enormity of it all and said "I don't know what we're going to do with you", and she said "Just lock me away if that's what you want". I tried explaining that people don't get locked away these days, we try to find ways of letting them live their lives at home, but they may need help. Her face is totally blank. In fact, I am seeing the blank face a great deal. She simply does not see that anything is amiss, and at various points she said "Oh, just leave me alone, I don't know the answers to your questions".

    My daughter rang her last night about 10 p.m. Mum said "It is dark here, is it dark where you are? Yes, said daughter, but it is night-time. Oh. Later on, it gets repeated with the same response, and then mum asked her "What are you doing for the rest of the day?". Er, Grandma, it is nearly bedtime. Oh.

    So what are my questions? Well, my mind has gone a blank now!

    1. AM I BEING PREMATURE IN IMAGINING THAT THIS IS DEMENTIA?
    2. HOW DO I STOP HER FROM PHONING PEOPLE AT 3.30 A.M.? OR HAVING THE TV ON FULL BELT (will ask the doc tomorrow for a hearing test. Have also read up about loops and infrared signals - anybody tried them?)
    3. BECAUSE OF THIS APPARENT DISORIENTATION ABOUT DAY/NIGHT, SHOULD I BE CONCERNED ABOUT WHETHER OR NOT SHE IS EATING/TAKING HER MEDICATION? AND IF SO, HOW DO I RESOLVE IT? Being selfish, I work full time (though hours can be flexible to a point), do I have to give up the job/work shorter hours (which I could do, but don't want to). At what point do you accept that you can't carry on with your own life as you planned?
    4. I HAVE AN ENDURING POWER OF ATTORNEY TAKEN OUT BEFORE ANY SIGNS OF THIS APPEARED. WHEN IS THE RIGHT TIME TO REGISTER IT? The guidance says I should register it when I have reason to believe that she is becoming mentally incapable of managing her affairs. Am I at that stage? The thing is, she doesn't seem incapable of managing money matters (apart from forgetting how to write a cheque out and sending it off without any covering letter, so the recipient didn't know what it was for!). She has three bank accounts, not a great deal of money, but enough for any repairs/replacements etc. No investments or anything like that. She draws out her weekly state pension and pays bills in cash. Am I really ready to take away from her the independence of paying her window cleaner, milkman, hairdresser, utility bills etc.? But the guidance says that once a POA has been registered the "donor" has no control over their own financial affairs. Perhaps I can compromise and allow her free access to the account into which her pension goes, but I control the others? Is that possible?
    5. SHE HAS A HOLIDAY BOOKED WITH AN ELDERLY FRIEND IN AUGUST, CORNWALL. DO YOU THINK IT IS SAFE FOR HER TO GO?

    Sorry, I am drained now.

    I'd really appreciate any comments on the above questions, and any other advice that you think would be useful. I'm not very good on managing these "threads", I'm also on Genes Reunited and get muddled!

    Thanks everyone.

    Maragaret
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Hi Margaret and welcome to TP

    To take your questions in order
    1) Yes it probably is dementia. However, does that really help you? Unless it's Alzheimer's Disease there's not a lot of medication out there to help. Most of us are stuck with managing the symptoms.
    2) Almost impossible to stop the phone calls whether to you or someone else. You could try putting some form of timer on electrical appliances such as the TV so they can't be turned on, but I doubt there's anything available for phones, although I may be wrong.
    3)There IS a good chance that she isn't taking her medication or eating appropriately. This can be very worrisome: my mother had an (undiagnosed) stroke that resulted in similar (although not as bad as you've experienced) symptoms and she failed to take her high blood pressures meds appropriately. She might have had the subsequent strokes anyway, but she might not have. What's your mother's meds for?
    4) When you "have" to register the EPA depends to a certain extent what the EPA actually says. If it's one of the more basic ones, there is no reason that you can't use it unregistered where it acts like a regular POA: you could access her accounts but so could she. On the other hand it may be more like the one I have for my mother that only became effective when she lost capacity. The wording can vary with these things.
    5) I think that would depend on the elderly friend, to be honest. Have you spoken to him/her about it? Just becasue someone's elderly doesn't mean they might not be able to handle your mum: however they may not want to. Also, of course, different environments may well make your mother's confusion worse. On the other hand, if it's the sort of holiday where they do everything together, it may not be so much of an issue.

    jennifer
     
  3. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Do I need a title?

    Hi Jennifer

    It will help to know that I am dealing with a real problem that isn't going to go away. At the moment, I am in denial. I know that is daft, but a diagnosis of some sort would help. How stupid, obviously it is a real problem whatever the diagnosis. It does help to get some down to earth advice from people who've been doing this for longer than me.

    I didn't think of a timer on the TV. How obvious! I am so worried I am not thinking straight. Thanks.

    Re phones, someone suggested that BT can put a stop on outgoing calls at certain times, unless 999. Mum has an alarm system to a private emergency call out service which wouldn't be affected - not that I think she remembers she has got it!

    Medication - yes, blood pressure tablets are the main ones.

    The EPA has no restrictions. So can I use it, say, to get the bank to give me regular statements, or notifiy me of any unusual transactions? None so far, but you never know. Would they also obey my request to transfer £100 from Account A to Account B periodically to cover the monthly standing order that goes out of Account B, which has no income going into it?

    The holiday I have time to think about. I don't know the lady she is going with. She usually goes with Amy, who is well aware of her problems, but this time it is Doris, and I don't even know who she is. I am wary of contacting her, cos my mum will accuse me of interfering.

    Gee, it's tough stuff this, isn't it? And I ain't seen nothin yet by the sounds of it.

    Love

    Margaret
     
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Margaret: have you had the results of the scan yet? I'm willing to guess that it will show some kind of vascular problem. Re the EPA: yes follow the procedure that her bank(s) have for using a power of attorney. Some banks are more helpful than others: I hope you have one of the more helpful ones. Once the EPA is recorded with the bank you will both have access to her accounts: however some banks (grrr) will not allow you to use their online banking facilities in this case so it's phone or in person.

    Best wishes

    Jennifer
    P.S. No you don't need a title on each post if you don't want one.
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #5 Margarita, Jun 12, 2007
    Last edited: Jun 12, 2007
    Maybe when you get the results , it may make it more real to you


    Have you been to the banks to talk to them , about your EPA , so you can transfer money ? once you have that set up you can transfer money

    for the bank To give you regular statements , you would need to registered the EPA with the court of protection.

    Then take proof to the bank and then you have full control over your mother account.

    OR

    Seeing that you mother does not have investments , if she does not own her own property ? you can phone the pension people benefits , and ask to became her appointee , then all her correspondence go to you and you can have all her money payed into an account that you have accesses to in YOUR name , then you can transfer money into her account (
    also check any privet pension your mother may get from your father , send your EPA to them
     
  6. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello again Margaret

    I've just (sort of) answered some of your questions in reply to your reply on my "Fed Up, full of self pity" post ... do you still follow? Thank you for your support, by the way!

    I hope what I said (in that post) is useful.

    Best wishes.
     
  7. Ashburton

    Ashburton Registered User

    Feb 19, 2007
    99
    Hi Margaret and welcome.

    I suppose I can only give you my own experience with my mum who was diagnosed in 2003. Firstly it does sound like AD, I suppose the sooner you get it confirmed or not the better.

    My mum went into hospital at the time to have the tests carried out to see if she had AD, and during this period and I have to say she was very very poor, and I thought that was it I have lost my mum, her behaviour was so different from how she used to be , very very quiet, confused and down, she was given Aricept, people will react to medication differently, but have to say the aricept made a huge difference within a month. My dad however died two months after she was diagnosed, and I am an only child,I was still living at home at the time and have continued to do so. Anyhow I was working full time at the time and continued to do so for one year, during this time my mum was still able to drive and could look after herself, however in late 2004, I was able to go part time in work, only working mornings, however by late 2005 it was clear that my mum could not manage by herself. We are lucky in Ireland whereby employers are obliged by law to give you 1 1/2 years off work in which they have to keep your job open. I do get the feeling that we are very lucky in Ireland compared to UK.

    It is at the stage now, that my mum would never be able to manage by herself.

    Everyones circumstances are different, and I am very lucky that I have been able to care full time for my mum,I am not married or have kids so this is not an issue for me, I get the impression that your mum lives by herself, I think it is important that there is someone with your mum at all times, I know this may not be practical for everyone but I do feel it is very important.
    Regarding the holiday, this is a very tough one, I think the fact that you do not know the person, I would personally say no, if it was a family member going with her then that would be different. Anyway hope this helps, as I said it is only my own experience with my mum and you have already got some excellent answers from other posters.
     
  8. gillian69

    gillian69 Registered User

    Sep 7, 2006
    42
    Cambridgeshire
    Hi

    What you have said i sympathise with.
    My mum was diagnosed with mixed dementia possibly alzheimers, now she receives Aricept. This has certainly slowed the symtoms down.
    We had to push to confirm the diagnosis and receive the drug for my mum.
    Not an expert on these things but don't be afraid to be forceful, when the diagnosis is known.
    Hope all goes well.
    Take Care

    Gillian
     
  9. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    New to dementia

    Dear Margaret,
    My Mum had similar symptoms to yours and sometimes she would lose an entire day and not remember what she was doing. She also once rang me at 11pm on a Friday to say she was ready to go to Church. I couldn't understand how she could possibly confuse day and night, when it was dark outside, but logic seems to disappear.
    When Mum had frightening hallucinations and began to fall, she went into a Care Home and the regular routines seemed to help her sense of time. Rheumatoid arthritis also made life very difficult for her at home.
    She was happy in the Care Home, but a bad fall meant she had to go into a Nursing Home to be looked after.
    We didn't find an answer to taking medication at the correct time, as even when we bought an automatic pill dispenser Mum would think it had given her too many or too few tablets. Somebody needs to supervise the pill taking.
    I found that Mum varied a lot from day to day and could hold a sensible conversation, but suddenly say something quite bizarre. She had an unexpected heart attack and died two weeks ago, but fortunately didn't have time to suffer at the end.
    Kayla
     
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Kayla

    I am sorry to hear that your mum died so recently.

    Yes, my mum is now confusing day and night. She thinks the clocks are all wrong, she keeps repeating it. over and over.

    Yes, sometimes she sounds quite reasonable, and then she will say something totally odd.

    Sounds similar.

    Hope you are coping with your mum's death. It sounds as though she didn't get too distressed, so that is a good point.

    Take care

    Margaret
     
  11. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Dear Margaret,
    Thank you for your message. We tried to keep Mum in her own home for too long, when she was already having a lot of problems coping with her painful hands (due to the rheumatoid arthritis) and her confusion. She was so much happier in the family run Care Home, which was in her village and many of the carers also lived locally. We wish that we had investigated the possibility of going into care earlier, as Mum was much more settled in the company of the other residents and staff.
    It was unfortunate that she was only there for a few months before she fell and broke her hip, but she had fallen quite a lot in her own home too and at least help was on hand.
    Although we sometimes hear horror stories about Care and Nursing Homes, there are some very good ones around and the staff can be kind and caring. I have nothing but praise for the three homes Mum has been in since June 2005. She spent nearly three weeks in respite care, while waiting for a place in the local care home.
    Once Mum was being looked after professionally, I was able to spend valuable time talking to her rather than trying to sort out her tablets and problems with her house.
    I hope that you are able to arrange a suitable care plan for your Mum's needs, as each person with dementia is an individual, with different problems.
    Kayla
     
  12. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    Poor you, you must be at your wit's end...I know the feeling. To try to answer your questions..

    1) Yes, it does sound very much like some form of dementia. The only way forward is to get a proper diagnosis - this will also eliminate other possible causes of these symptoms. The dementia could be Alzheimers - although the progression wounds a bit quick for that - or vascular, or both (which is called "mixed).

    2) You will find it difficult/impossible to stop behaviors you find disturbing. If you challenge mum you will find she will be resistant. It sounds awful, but if the behaviors aren;t actually causing a problem, then ignore them (like having the tv on loud). It might be possible to put blocks on the phone.

    3) You are right to be concerned. People with dementia often have an extremely poor sense of time (my Dad is hopelessly confused as to what time it is or what day). Sadly it is also likely they will be very resistant to challenges that they have got things wrong and will simply deny evidence contrary to their beliefs such as clocks or why it is dark in the "afternoon". Thankfuly Dad has passed this phase, in that he doesn't really have any belief about the time/day rather than having a strong (but wrong) one! So it;s quite possible that mum could be taking pills at the wrong time, or not taking them, or forgetting she has taken them and taking another lot (we experienced all three). The only way around this is to have someone completely manage medications (pill boxes and reminders most likely won;t work). If you can't do this, then involve Social Services.

    4) Much depends on the way the EPA was drawn up. Some have qualifications, some don't. You will need to read the terms in the EPA.

    5) This depends entirely on the person she is travelling with. You need to have a long talk about it with them to see if they are willing to take on the responsibility and to see if they can cope with challenging behaviors. At the very least they need to be briefed about what to do - such as avoiding directly challenging mum's delusional thoughts.


    Incidentally, mum's false beliefs are most likely delusions - being convinced things are true which aren't. She will probably cling like a limpet to them - "I am right and everyone else is wrong". It is best to avoid challenging them unless they are likely to lead to risk of harm to herself or others.

    However if she starts pointing at empty chairs and says there is someone sitting in it then that is likely a hallucination.
     
  13. Zadok

    Zadok Registered User

    Mar 15, 2006
    68
    Kent
    Hello Margaret,
    I'm not sure if I am being helpful or not but I'm just psoting to say your original post could have been me and my mother. It took me longer to find TP and some welcome answers.

    Do think about contacting your GP and getting referred to whoever is the local 'mental health for the elderly' team. I had help and advice from them even when mum was refusing to see anyone from their team.

    You should also ring social srvices and say you need an assessment for care for your mother.............they have to assess her if you request it.
    Think about day care visits. I had , through social services, someone who came in at meal times to give the tablets as we were not getting anywhere even with the tablets in a 'tray' as she would take all the morning ones for the week!

    Mum had to pay for care but it depends on your circumstances. I had an unregistered EPOA and the bank called me for an interview after which I was able to deal with her account.

    Ask for a place at a day centre...we persuaded mum to try it 'just this week' When the day came the next week we said ' just try today' She never rememebered from week to week, day to day but at least I knew she was safe for those hours.

    Now mum is in a lovely care home, but I haven't forgotten the daily stress of coping with her poor mind which insisted she was right and everyone elses clocks/ideas were wrong.

    Much love,
    Zadok
     
  14. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hi everyone,

    I'm not very good on this "thread" business, I wanted to reply to you all.

    Thanks for all your most useful suggestions and for sharing similar stories, of which I know there are lots. And lots which are worse.

    We went to the doc tonight at 5.15. The appointment was to allow her own GP (who is also mine, hubbies and was my dad's, and we know him well) to see how things were. He's just returned after having cancer treatment so wanted bringing up to speed. She rang me five times between 11 a.m. and 2 p.m. wanting to know when I was coming. I couldn't hold a decent conversation with her at all. At 11.20 she said she had been to the post office "this afternoon" and was getting her tea ready. A chance conversation with her hairdresser revealed that she had been to the post office at 8 a.m. this morning, couldn't understand why it wasn't open. Claimed it had opened an hour late. Fortunately, the hairdresser has an elderly mum and does the hair of most of my mum's old friends, so she was able to confirm that they all recognised my mum's problem.

    The doc is arranging an assessment by social services. Just before we went in to him, she said "I don't know where my mam and dad have gone, do you?" (her dad died 40 years ago). This is a new one. I suppose I'll get a lot of those. New ones, I mean.

    The doc listened to her and me, realised the problem, especially when mum said to him "Fancy having a surgery at 10 o'clock on a Saturday night".

    He's also done a report to the psychiatrist to chivvy her up as soon as she has the brain scan report. And arranged for an appointment with the audiologist as being deaf is another major issue.

    I will make an appointment with the bank tomorrow. To all those who replied to the POA question, there are no restrictions on it. I don't want to register it yet as I don't think she is incapable of managing her financial affairs (which is just paying bills). Yes, she does own her little house. I don't want to take away from her the independence of paying the gardener, the window cleaner, the paper shop, the hairdresser, and buying her own bits and pieces. I broached the subject of direct debits for the major bills long before this problem arose and she wouldn't have it cos "you don't get a receipt for the payment". I'll tread carefully on that, though I learnt today that she had paid the council tax instalment a fortnight late which is not like her at all.

    The doc asked me how I was coping, and I said "I'm not really. But I'll learn to. It's clear it isn't going to go away, it's just new to me". I suppose, being an Accountant (no, not in practice, I don't earn megabucks, but neither I am poor), I am used to problems which have solutions, and this ain't one. Thanks to the person who said "most of us just lurch from day to day", I'd rather have the truth!! At least I can then guess what to expect (i.e. the unexpected!).

    The doc dictated a letter to the social services team while we were in the surgery. He told them this lady has dementia (investigations being undertaken) and it was time to consider further help in the home or possibly a place in a care home. I raised my eyebrows at the latter, as I thought it was far to early to be on that tack, and he just said "we might as well put the wheels in motion". He did seem to very concerned about the problem she has with identifying the day and time of day (or night). Don't know if other people have a view on that. There was one lady who said they kept her mother in her own home for far too long. But I don't think I'm there yet. I hope not - for mum's sake.

    If she remains at home, what sort of care do social services provide? I appreciate every area is different. Morning visit to make sure she has breakfast/takes tablets, lunchtime visit ditto, evening visit ditto? Is that the sort of thing. I can do some of them myself, but unfortunately my job is very erratic, I sometimes work in the evenings, sometimes not, I would rarely be available at lunchtime, at probably only mornings at weekend. Can they cope with that sort of pattern? Sorry, I am looking for solutions again!

    My mother in law had a care package, but with her it was the need to get her up and washed and dressed, her brain was totally in gear, it was her body which wasn't. She occasionally took her pills at the wrong time, but by and large did pretty well.

    Sorry for the long message, I am trying to learn how to do short ones. But my head is spilling over with questions.

    Thank goodness there is a site like this that can help. Sometimes it is good just for me to write it all out, even better if someone replies - even if just to sympathise. Though sympathy ain't much use is it? I am learning!

    Love to all

    Margaret
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Margaret

    thanks for such a detailed description.

    Seems to me you have already got a good hold on many of the key things, so well done.

    One thing you say
    I think a better word would be empathy, and there is a whole gang of that here on TP. And that IS a lot of use. Sometimes it is all we have to hold on to. That's when TP comes into its own.
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    I don't know about getting the hang of these threads: you seem to be doing fine.

    Your point about the council tax reminded me: for the first time in her life, shortly before she had her more severe strokes my mother forgot to pay her credit card bill on time. Incidentally, when you have a diagnosis of dementia you can get a complete rebate on the council tax: the local council should have forms that the doctor will sign.

    Re care packages: yes you've got the general drift of it Obviously it will vary according to need. I do think you need a regular system though: it can't really work well when sometimes they go in and sometimes they don't because the chances are they won't go when they're supposed to. Almost certainly this care package will be something that your mother has to pay for, although it all comes down to savings and income.

    Have you found the factsheets yet? Look to the top left of your screen and you'll see an Factsheets link - that takes you to many factsheets that might be helpful to you.

    Jennifer
     
  17. Gill W

    Gill W Registered User

    Jan 31, 2007
    190
    Co. Durham
    Hi Margaret,

    Just caught up with your post.

    My Gran was diagnosed with AD just over a year ago, although there were signs of it long beforehand that were put down to old age.

    Our experience of Social Services hasn't been too crash hot, I have to say, although others have had less hassle.

    After a years worth of pushing we now have:

    A carer that goes in for a half hour morning, lunchtime and afternoon. On a morning they make sure Gran has had her meds and has some breakfast. It has to be said we had to argue for them to be a bit more "pro-active" on a morning. The lunchtime half hour was quite funny: they refused to send anyone in at first as the meals Gran got were privately made, not something we left in the fridge for her to heat. A month later when we discovered that Gran wasn't getting the door open for the meal and it was therefore left on the step (!) they sent someone in at lunchtimes?? One month they're not allowed to, the next it's organised like its no problem whatsoever.

    Gran's personal hygiene has gone out the window, yet we cannot have someone go in at some point during the week to help her get a bath. They stated quite clearly that Gran has "family that can do that." Both my mum and me suffer with serious spinal problems (I personally have 3 prolapsed discs waiting for surgery) but we are left to deal with it ourselves.

    Lots of others in TP haven't had the problems we've had, I'm glad to say, so you may find them more amenable at your end. When Gran first went on the wander in her pj's at 4am, social services were alerted and we were told not to worry, it'll likely be just a one off!!! She's done in twice since. We fought for, and got, after arguments, an alarm on her door that activates at 4.30pm until 7am. If Gran should wander out and not go back in within 2 minutes during those times, an alarm will sound at the other end and alert social services that she's wandering.

    I do hope you manage to put some care in place for your mum. There is a top limit for payments for Gran. We have to pay for her care up to something like £52 a week, anything over that and SS foot the bill. Which seems to me to be the reason why they are so reluctant to put any systems in place because it means they would have to pay for it. I could be wrong, but I'm very cynical where SS are concerned now.

    Good luck with everything, and know that TP is the best place you could come to for solutions to problems. The members on here have been no end of help to me, with suggestions, ideas, and general moral support.

    Gill
    xx
     
  18. Ashburton

    Ashburton Registered User

    Feb 19, 2007
    99
    [
    If she remains at home, what sort of care do social services provide? I appreciate every area is different. Morning visit to make sure she has breakfast/takes tablets, lunchtime visit ditto, evening visit ditto? Is that the sort of thing. I can do some of them myself, but unfortunately my job is very erratic, I sometimes work in the evenings, sometimes not, I would rarely be available at lunchtime, at probably only mornings at weekend. Can they cope with that sort of pattern? Sorry, I am looking for solutions again!


    I know peoples circumstances are different , but from my own experiences I would not leave my mum by herself, when my mum went on aricept it did make a difference for a bit and she was able to manage by herself, but then it got to the stage when I came in from work or when I was on the phone during the day that I realised she was scared by herself and was so happy when I came in. So if possible I would try and not leave her alone for too long.
     
  19. franko

    franko Registered User

    Jun 13, 2007
    1
    Epa

    My mother took out a EPA before the onset on alzheimers which was diagnosed 2 years ago. If you look at the EPA and it gives you general authority to act in relation to property and affairs with no limitations and it states that " the power shall continue if I become mentally capacitated " you have full powers without lodging it at court, provided it is witnessed and stamped by a solicitor.

    If you take this to your mothers bank and say you are serving power of attorney on your mothers account they should then register this and you can have full access to your mothers account.

    I have done this for my mother and also had a cheque book and debit card with joint names on. Ask about the system for telephone and internet banking also as these can be registered at the same time. This access has proved very useful as pensions etc are now paid directly into banks and accessing funds can be most difficult.

    I have also just had to fill in some pension claim forms for my mother which she was able to sign but these have been returned as when there was a query and the agency found out I had EPA they would only accept my signature then.

    It is worth mentioning this when you start on the form filling as you most certainly will it will save time.
     
  20. Zadok

    Zadok Registered User

    Mar 15, 2006
    68
    Kent
    Hello again,
    Mum did stay in her own home for about 4 years after the stages you describe but everyone is different. I had three carers visits in the end. (She went into care in March) I also popped in once a day and co-ordinated everything by leaving messages in the carers book which they leave. at the house. Mind you we had to hide the book from mum! I started with one visit a day from the agency. It meant that someone else was getting her ready for the day centre or fielding the everlasting questions about the time.
    I think in the end the decision for mum to go into care was made by circumstances and she'd got to a point where she couldn't really understand what was going to happen. Mum didn't feel her bungalow WAS her home..she talked of going home constantly. It was the kind members of TP who explained to me she was so confused she wanted to 'go home' as in be secure not a building as such. She also started to wander and get lost.
    Gradually mum couldn't pay bills on time and I changed everything to direct debit from her account. Then as she stopped being to count money or remember what to buy I took over the shopping. I let her have a weekly allowance till she paid a 'neighbour' a large amount for not fixing a tap and also lost a lot of notes. Then I gave her a lot of money, so it seemed, but in small denomination coins!

    Gradually you will learn how to take over when needed and to lie a bit too! I blamed the gavernment for lots of things......like when I changed the pension to be paid into her bank and not the post office and so on! I just made out it was a new rule!
    Good luck in this sometimes difficult journey,
    Zadok
     

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