What the hell do I do now?!

Discussion in 'ARCHIVE FORUM: Support discussions' started by LilyB7, Sep 10, 2007.

  1. LilyB7

    LilyB7 Registered User

    Sep 10, 2007
    I'm new here - the site and the experience so please bear with me.

    My mother has finally been diagnosed with Alzheimers after twelve months of struggling to get people to listen to us. She's had her first Memory Clinic appointment today and has been assessed as having such an appauling score that she's eligible for medication as she has severe confusion and memory problems.

    The situation is this - my mother is 74 and is being cared for by her 80 year old sister who lives with her. After todays clinic visit it has scared me as to just how long a haul this is going to be for us all and want to find out just what help and if necessary, financial assistance, my mum / aunt are eligible for. I work stupidly long hours running my own business in order to help support myself and my two children, so don't see mum as much as I'd like (and to be perfectly honest and selfish - struggle to cope with the situation when I do see her).

    In addition I would find it helpful to share other peoples experiences - did the medication help, what's the worsed I can expect, what's the best way for me to cope with my mothers illness (that sounds selfish, but she's unaware that she has health problems), what's the likelihood of her being able to stay in her home, and I suppose also - and this is an awful question to have to ask - what's the life expectations of an Alzheimers sufferer?

    I know that there isn't just one question in this post - but I just don't know what to do.
  2. connie

    connie Registered User

    Mar 7, 2004
    Welcome Lily - and now take a deep breath. That's better

    It is bound to be confusing at first, and yes there are so many questions to ask.
    Firstly, has your mother got a Social Worker assigned to her, or a CPN.?

    If not the doctors is often the first place to start with regard to
    Everyone reacts differently to the medication, at best sometimes an improvement, or maybe just a gently evening off, halting the decline somewhat.

    Expectation of length of illness and onwards : 64,000 dollar question. Wish I had the answer, (or would I).

    Not much help, but I am sure someone else on this sight may have some more useful information. Take care now,
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Lily, welcome to TP

    Lots of question, no easy answers, I'm afraid.

    To take the last one first, there's no knowing what the life expectancy is, every case is different. It could be a matter of months, it could be ten, fifteen years.

    As for medication, yes, it certainly helped my husband, but he was prescribed it in the very early stages. Again, it works for some people, not for others, and some cannot tolerate it at all. You'll just have to try it and see how it goes.

    Now for the more difficult questions, how you'll cope. My answer is 'with difficulty'. I know how hard it is for me to cope with my husband, and I can't imagine an 80 year old woman will be able to manage for long. She's going to need all the help she can get.

    The first thing is to ring the local branches of Alzheimer's Society, and Princess Royal Trust for Carers. Both of these will point you in the direction of help, and will arrange assessments by social services. They will also help your mother and aunt apply for attendance allowance.

    Social services will arrange support and respite. You may soon have to be thinking of residential care for your mum too, so that's something else to bear in mind.

    If you need more information about Alzheimer's, click the factsheet logo at the top left of the page, and you will find lots of useful information there.

    Best wishes,
  4. blue sea

    blue sea Registered User

    Aug 24, 2005
    Can't add much to the other excellent advice, Lily, but wanted to add my welcome to TP. You'll find lots of support here. The fact sheets on this website are extremely useful as are the other sources of help mentioned to you. Each individual's progression with the illness is different . For some people the progression is very slow and they are able to live at home for a long time, with the right sort of support. Once you have a plan of action, - to get more information and have contacted sources of support, you will feel less panicky.
    Blue sea
  5. Hi Lily,

    Connie is right – take a deep breath – slow down.

    Learning your mom has dementia is a difficult piece of news to digest. When my mum was diagnosed I panicked but then I thought that she is still the same person last week without the diagnosis as she is today and the only difference being is that the Doctor has now given what she has, a name – a label.

    Your Aunt and you must join forces. Your Aunt is no doubt very fearful with her sister’s diagnosis that she may get this. This is not necessarily true so she shouldn’t waste time worrying about something that may never evolve. So don't you waste time worrying about this yourself.

    Follow Skye’s advice and start to network with resources in your area. Alzheimer's Society, and Princess Royal Trust for Carers, this is a start.

    There are about four ‘memory enhancers’ These are listed in this forum under Information sheet Drug treatments for Alzheimer's disease - Aricept, Exelon, Reminyl and Ebixa

    My mum has been on Aricept since 2001 and there has been a clinic trial that came out July 2007 that showed Aricept (aka Donepezil) does not fix the dementia but it can slow it down and improve memory in not only early BUT also the moderate to late stages of dementias. Search the Web for: “Aricept for late stages of Alzheimer’s”

    In some cases the introduction to a memory enhancer can help (and stabilize) the symptoms at least for awhile.

    You are bound to feel overwhelmed, but you must put on your Carer Hat (logic) and put down your Daughter Hat (emotions) and take charge. Your Aunt may be 80 years old, but she knows your mother well and between the two of you, you can manage to get some normality into the situation (who is normal anyway?).

    And, take care of yourself Lily because you are the most important person – you need to be there to help Aunty supervise Mum.

    I have heard several replies to how long a person lives with dementia. On average it may be 8 years from diagnosis; sometimes shorter and sometimes longer. I think it all depends on the rate the dementias progress and how it affects the brain. And many times, there may be more than one type of dementia present. Everyone is different; but we all face the same challenges.

    And know that many of us have been where you are so you are never alone.

    Keep us posted
    Jennifer Sierra
  6. LilyB7

    LilyB7 Registered User

    Sep 10, 2007
    thanks xxx

    Hi guys,
    It's two hours since I posted this thread and I've just read the replies and cried for the first time ever about this - and I don't know why, whether it's the kind words you've said, the relief that mum has finally been given the label and the medication or just the sense of support I received from your replies and knowing that you lot are out there.
    Mums illness has come as quite a shock, she began with little things like telling you the same thing half a dozen times in the same hour, to very quickly forgetting major events (dad's death 7 years ago, her parents deaths 30 and 40 years ago, how many times she's been married - she's convinced that it's twice, likewise she's convinced that I've been married twice, when in fact I'm just in the process of seperating from my first and only husband), so her decline does seem to have been at an enormous rate of knots.
    Not sure which meds she's been prescribed, but the Dr did say that they would treat vascular or stroke like illness, she also said that it wouldn't regain any memory, but should reduce the decline.
    There seems such a lot to do - but if it will help her I'll do it. When my father was ill I took off the daughter hat and put on the carer hat so I ca do that - my mother actually criticised e for being "cold and unemotional" then, but I don't suppose that she'll realise I'm doing it his time. :(
    Well thanks once again - and please keep posting to me, for once I didn't feel alone.
  7. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    leigh lancashire
    Hi Lily.don't ever feel alone,come on the site and you will be amongst many many friends.I as others understand how you are feeling.At present we are waiting for dad to see the consultant.its a horrible disease to have to watch and endure.As you say,the medication will not cure,just slow down the progress of the disease.I do hope you have found T.P to be of use in getting advice and support.keep us posted.love elainex
  8. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    No Lily, you're not alone. There are around 500 active members of TP, and we're all dealing with, or have dealt with, the effects of dementia (of whatever kind) on our loved ones.

    It's a hard road, and it gets harder. Without TP I don't know how I would have coped. Whatever problem arises, someone has been there first, and will offer advice. And in the bad times, there is always support, because we all have bad times, and we know how valuable that support is.

    Yes, you've got a lot to take on board, a lot of contacts to make, and a few fights ahead. But we're always here, so post again whanever you like, someone will always reply.

  9. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    Nr Mold
    I too want to say welcome. The help and support you will get here is second to none.

    Nobody knows all the answers but in general can point you in the right direction and there is always someone around to listen even if they are unable to help.

    Post often we are a friendly lot!;)

    Take care.

    Linda x
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Gosh the people on this site are so caring, is there a Queens Award for Caring Sites? This should get it.

    LilyB7, listen to everyone, they've all got experience, and if not they can hazard a best guess or just give common sense advice (or just a hug!). No-one judges anyone else, but nor are they condescending. There is some real good help on here, and its free!

    Yes, contact your local Alzheimers Society, I scoffed at a friend in Derby who suggested little New Mills might have one - but they do! And they have been a godsend to me. Go along to the meetings, you'll find all the people there are in a similar boat to you, and all willing to learn from each other.

    I've forgotten now what was on this thread, but keep going if you can, take a break when you can, and remember, you can only do your best.

    Much love

  11. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire

    Hi Lily,

    I;ve just posted a reply, seems to have disappeared, but basically it said we are here to help, we all have different experiences, but we all share the same common goal, to do the best for our loved ones.

    You asked about finance. Claim Attendance Allowance now. It is tax free. You can claim it from the date your mum first needed help, either day or night or both. Think back very careful to when that was, it could be a lot earlier than you currently imagine. I remember writing to my mum's doctor last October to explain the symptoms, and discovered a previous email on my computer dated 18 months earlier on the same topic!!!! AA isn't payable till the person has needed that care for six months, so think carefully about the date that you give. AA is tax free. Oh, and if a person needs care, they get AA even if they don't GET the care.

    If you or your aunt are caring for your mum for 35 hours a week, you can claim Carers Allowance. I never claimed it cos it wasn't taking up 35 hours a week, it was intermittent, I didn't keep track of it, but I don't think it was that much. But look at your own situation.

    I've just discovered that if a person is diagnosed with a severe mental illness (Alxheimers is one), they do not pay council tax, it is called a Disregard, so make sure you claim that.

    All these monies or reliefs help you to look after your relative, be it extra comforts, travelling costs or whatever. It isn't cheap looking after someone else.

    Hope you get the support you need from this site. Shout at us, if needed, we can cope, join in our own traumas, or just cope with your own situation.

    Much love


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