New member looking for help please.

Discussion in 'ARCHIVE FORUM: Support discussions' started by Otter, Apr 15, 2008.

  1. Otter

    Otter Registered User

    Apr 15, 2008
    Have been browsing Talking Point for a few weeks now and my heart goes out to all of you who are caring for loved ones.

    My story, and I hope I don't bore you, is that following 2-3 years of gradual deterioration (very poor short term memory, failing to eat properly, inability to look after herself properly) my mother-in-law willingly moved in with us 4 months ago. Life has changed dramatically for me, my husband and my two sons aged 10 and 12.

    Just before this, she was assessed at a memory clinic and scored 25/30 on "the dementia test" and was deemed a suitable candidate for Aricept to ease the symptoms but we appreciate it isn't a cure. As she was relocating from London to Dorset, the consultant couldn't monitor her and wouldn't prescribe the drugs .We have just had a reassessment in Dorset. This time, she scored only 17/30 and we have been told she's top of a waiting list for the treatment but it could be three months before she receives it! Surely in this time she could deteriorate to a stage where Aricept would no longer benefit? Silly question really but has anyone else experienced a delay in treatment due to financial constraints? Were you able to speed up provision of treatment?

    Also I have already started to experience difficulties dealing with organisations on her behalf (pension, building societies etc) , despite sending letters in which she authorises them to deal with us. It has been suggested that we may need to consider an LPA. However she is at a stage where her answer to most things is "I don't understand this" and therefore would a solicitor be happy that she knows her own mind? Has anyone got any experience of this who could give me a few pointers? Thanks.

    I hope my debut on the forum hasn't been too lengthy and boring! Having read many messages over the weeks, my queries sound rather minor and insignificant.

    My thoughts go out to everyone who reads this and I look forward to getting to know you all over the coming weeks.


    Otter XX
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Otter, welcome to TP.

    Regarding the medication, I haven't heard of anyone being asked to wait, and I think that's pretty shoddy. I'd keep nagging -- it really is the only way to get anything in this money-obsessed society.

    However, I wouldn't think your mum would deteriorate so quicky. Her drop is probably the result of her move, which is always a challenge for someone with dementia. She'll probably stabilise, and may even improve one she settles.

    The range for prescribing the medication is 10-20, so she's unlikely to drop to 10 so quickly.

    I'd think you should get an LPA in place as soon as possible. You could contact your local branch of Alzheimer's Society, they may be able to help you with a solicitor who understands dementia. You just have to pick a good day, your mum just has to understand on the day that she signs.

    Your queries are neither minor nor insignificant. If anything's bothering you, just post. We'll all try to help.

    Good luck,
  3. Keely

    Keely Registered User

    Aug 6, 2007
    Your doing your best

    Hi Otter
    So sorry to hear the difficulties you are encountering - don't underestimate what you are doing. I am not sure I can help practically but as someone fairly new to talking point I can only say I have found reading and posting a great support. I also felt my concerns seemed insignificant compared to others but was heartily reassured they were and are valid - there is no measure on concerns. I think you are underestimating the magnitude of having your mother in law move in with you even if she was well it would be a big adjustment. You also seem to be underestimating the strain it is to care for your mother in law with this illness and expect the move will cause some stress to her.

    As far as getting organisations such as utility providers accepting you as her representative I had similar problems before and even after I had POA for my sister (when you get the POA get plenty copies I felt they seem to disappear in to a black hole at the gas supplier!) See what advice you get from others people but I would get in touch with a solicitor who I think will advise you re the POA. I have used the AS advice line which has been a great help so it may be useful to ring them about the POA and the lack of treatment due to the waiting list. I understand you must be very worried about lack of medical treatment and I don’t know what effect this wait may have on your mother in law. I know its little consolation but you can only do what you can do! Don’t be too hard on yourself. Sounds to me as if you are doing a good job, clearly very caring and your mother in law is lucky to have you.
    Take care
    Love Keely
  4. BettyL

    BettyL Registered User

    Jan 20, 2008
    Hi Otter
    I have recently been made Appointee for both my mum and dad in respect of their state pension, attendance allowance and pension credit. It has taken a little while but your local Benefits agency should be able to help. I've had terrible problems with my parents as my mum is in residential care with dementia and dad now lives on his own in sheltered housing - he's just been prescribed Aricept but still assessed as fit to live on his own (with help). I can't understand why your mum in law has to wait to be prescribed this drug? Challenge this if you can.

    I know how frustrating it all is and you are doing really well - don't be too hard on yourself. The people on this site are so caring and helpful, so please keep posting.

    Best of luck
  5. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    Hello Otter

    I don't know anything about medication because my husband is not suitable for any but I did have to take out a Power of Attorney. I explained to a solicitor over the phone that Alan had a dementia and that he could be hard to understand. The solicitor was brilliant and fortunately she offered time and considerable patience and understanding. Alan was still able to sign his name which helped. I was very sceptical that it could be done but there's no time to waste because it doesn't get better.

    Very best wishes

  6. Otter

    Otter Registered User

    Apr 15, 2008
    Thanks so much

    Dear Skye, Keely, BettyL and Helen

    Thank you so much for your very practical advice and kind thoughts.

    I will challenge the Health Authority re Aricept,now I know that it doesn't seem to be a common obstacle.

    Thanks also for advice re. contacting sympathetic solicitor. Will do that ASAP - time is obviously of the essence.

    I hope your, and your loved one's, day has been okay.

    I already feel part of a caring online community. You are such a special bunch.


    Otter XX
  7. EllieS

    EllieS Registered User

    Aug 23, 2005
    Dear Otter

    Although I've not actually used their services I've just googled Enduring Power of Attorney and think you may find the information on this page of interest:

    It would seem there have been some changes - I was very lucky to get my Mum's signature on the Enduring Power of Attorney form just in time! If I'd left it a couple more days it would not have been possible. Choose your moment.

    It really is a good idea to get a form (maybe from Citizens Advice Bureau or Age Concern - you don't have to pay for one from the above site just use it for info!). If you can get the signature, you give this to Solicitor to do the legal bits and pieces and ask for half a dozen verified copies - always ask for them to be returned after use by Banks etc.

    Thereafter I wish you luck and can only reiterate what others have said, you are a very good person, very kind and are taking on a lot - try to keep an open mind and make time for yourself and your own family - hard as it might be! Perhaps consider Day Care a couple of days a week and think about Respite Care if you need a holiday.

    I hate this situation and I am sure you do too - words are easy, what goes on in our own minds are not so easy - let alone the poor sufferer!

    Take Care - hope this is helpful.

    Best wishes

  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
  9. dolly gee

    dolly gee Registered User

    Mar 9, 2007
    Otter i am sorry for your dilemma it certainly isnt easy we consulted a solicitor and he aranged for my eldest sister to take care of all financial things[ power of atorney] you should take advice,otter your gueries are certaninly not insignificant all aspects of dementia are important i hope you will let us all no how you get on god bless dolly gee
  10. Clive

    Clive Registered User

    Nov 7, 2004
    #10 Clive, Apr 17, 2008
    Last edited: Apr 22, 2008
    Hi Otter

    I found your post quite interesting.

    When mum (who has AD and is post Aricept) moved to a Care Home the NHS put her on a waiting list for Incontinence Pads.

    After a few weeks I started making a fuss. I made no progress ringing; so I wrote to the person in charge locally with a copy to the boss. I got a phone call next day telling me it was a mistake and mum could have the pads at once.

    I was able to get some advice from the PCT Patient Advice and Liaison Services (PALS)

    However it could just be that your Mother in Law is in the queue for the various tests that my mum had to have AFTER the memory test and BEFORE Aricept was prescribed. I remember the consultant sent her to have various blood tests at one clinic, and then she had to go to another hospital for a brain scan, and then another hospital for some fancy heart tests. These took about three months to do, and the consultant would not prescribe until he had all the results.

    Possible you could ring the consultant’s secretary and ask if any appointments for further tests have been made, and ask why there is the delay in prescribing. If you are polite and nice you usually manage to get some information. If not ask for the consultant to ring you and explain the delay. (I know its easy for me to say !!)

    Best wishes

  11. Short girl

    Short girl Registered User

    Mar 22, 2008

    Hi Otter

    Yes I can relate to your difficulty in speaking to organisations, namely utilities etc. I went the DIY route to get Power of Attorney for my Nan before the Mental Capacity Act came into being. My Nan kept saying she's does understand correspondence and her bank statements, but worries - I had to keep saying well, i look after it all for you so there is nothing to worry about, but I did explain that we needed to sign some forms and get it all done 'officially'. Actually it wasn't as bad as I thought when I got the remainder of bills on DD - by I know I was speaking to one, can't recall, but I did get heated and said, "what part of my Nan is old, deaf and confused are you finding difficult to understand?!:mad:"
    Medication side - she got Galantamine prescribed - side affects so adverse I stopped it and consulted CPN; she now been given Aricept, but I decided to start in in 2 - 3 weeks time.
  12. mrennie25@btint

    mrennie25@btint Registered User

    Apr 18, 2008
    hi new member here just read your letter about your mother in law its quite sad that she has to wait for this drug my mother in law also has alzhemimers has had this for four years was on the same drug but was only on it for six months then took of it because she wasnt any better she got worse in some ways but there is no quick fix for this she has been of the drug for the past six weeks and she has changed so much she is more angry and dosent even go out any more we also live with her and have done for the past year and sometimes its hard to see someone you love go this way my kids 15 and 13 cope with every day life very well with there gran its sometimes my husband and myself that find it very hard i hope she gets the drug and it helps her
  13. pebble

    pebble Registered User

    Apr 18, 2008
    The Borders, Scotland
    My mum recently got a score of 15/30 on the mini mental state test. Her GP said he could not certify that she had capacity to grant a power of Attorney and the route would now have to be Guardianship through the local court etc. He sent a geriatric psychiatrist to see her also. I guess not retaining the memory of instructing a power of attorney is part of the incapacity. It is a tough grey area.
  14. gigi

    gigi Registered User

    Nov 16, 2007
    East Midlands
    Hello Otter,

    A belated welcome...!

    I want to reiterate what Clive said..

    There is a medical protocol to be followed when issuing drugs for AD...

    Full range of blood tests.
    ECG..(trace of the heart function)
    Blood Pressure..
    And often an MRI or CT scan of the brain..(although it appears this does not always happen)
    It's perfectly acceptable to contact the consultant via his secretary and ask for advice..I wouldn't hesitate in your position.

    Wishing you well..

    Love gigi xx

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