1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. kmerryman

    kmerryman Registered User

    Oct 9, 2003
    Does anyone know what we should do.

    My mum was diagnosed with Alz about 18 months ago. She is only 54. My dad insists he can cope but only by shouting at her. He is now having to run the shower for her in the morning, then going to work for a few hours and coming home to her again.

    She cannot cook or clean the house anymore. Today she went out to the post box and did not come back, dad went looking for her and then yelled at her for being silly.

    My sister is an emotional wreck and I seem to be the only one trying hard to hold things together.

    My dad refuses help but thinks it is OK to ring my sister and I at work, upset us and shout at us as his way of letting go.

    My sister lives close to my parents and I am about 1/2 an hour away, we both work full time, I do particularly long hours and feel so guilty all the time.

    I find it very hard to care for my mum in a physical sense, whereby by sister can go and wash her and do her hair, the thought simply fills me with dread.

    We try to give dad a break on saturdays but that means that we never get time in our own homes and again we feel guilty for that.

    She is due to see a doctor again at the end of the month but I guess that is not going to help with the above situations.

    Every day we blame ourselves for having mum at home with us as children and her not going out to work and keeping mentally active like our friends mums. Then we worry that we will get it and if we have children we will pass it on.

    Can anyone offer any advice as to what we should do first, we dont know where to start.
  2. Jackie

    Jackie Registered User

    Oct 9, 2003
    Hi ya,

    First of all I am really sorry to hear about your mum [mine was diagnosed at 52 and I am an only child and her only surviving relative and I am 32].

    After reading your email, the first thing you all need to do is get advise from your GP, who should advise you on how and who to contact at your local SOCIAL SERVICES MENTAL HEALTH TEAM. Your GP must HELP both your mum and your dad, if not then you need to see another GP that is willing to provide support for you all.

    Social Services will be able to provide home help for your mum and dad, in the physical sense which will help emotionally as well.

    Your dad really does not sound like he is coping as he is yelling at your mum, he really should get advise on how to cope with people that have this disease. It is also not fair on either you & your sister to call you at work, then shouting at you both and refusing to get help. I personally feel that when this disease strikes a younger person its a hell of alot harder to accept.

    Perhaps he has not accepted the fact that your mum is ill. It may be an idea when your mum visits the doctors again that you all attend the appointment [you may have to clear this with the GP first].

    Another invaluable lifeline are The Alzhiemers helpline will also be able to point you in the right direction on contacting a local group near you where perhaps you all could visit, [or again if your dad wont attend you and your sister can go along for some advice]. I can not tell you how much help and guidence they have provided to me in the past 2 years and without them I dont know where my mum or I would be today!

    You are not to blame yourselves for anything that has happened, its no-ones fault, you are experiencing what everyone feels who has a younger relative with this terrible disease! Just remember you are not alone, you have nothing to fill guilty about but you do all need to get some help and support for your mum's sake..........

    I sincerely wish you all the luck and make sure you push to get the help you all need - your all entitled to it.

    I hope I have helped in some way.

  3. Peter

    Peter Registered User

    Oct 3, 2003
    help is out there

    Hello all,

    I agree with Jackie - you must seek help. I was fortunate to meet up with the local NHS outreach nurse for young people with dementia through the Alzheimers Society. So if your doctor cannot help try the AlzSoc.

    We now have Social Services and the NHS involved. My wife, who has pre-senile vascular demnetia and can do very little for herself, now attends a day care centre two days a week, which we are hoping to increase to three days. She will also be going for a week of respite care at the end of the month. Social Services have been very good - both for care and occupational therapy which included visiting our home to see what equipment would help. This may extend from a shower chair to a stair lift. There has been a financial review of my wife's income.

    I did not realise how difficult it would be to care, even though I have taken early retirement to be a full time carer. Once again it was the outreach nurse who saw how bad I was getting both mentally and physically. So the respite care will be very welcome.

    I would advise all to get all the benefits they are entitled to. Yes, they do ask a lot of questions and the forms are daunting. But I have received very good help from the local Department of Works and Pensions. The manager in this area takes the view that their job is to pay out as much as possible of the available money - the Government has millions of £s that are just not claimed. His advice was ," You have paid in all your life so now is the time to get some back - and you will be most unlikely to ever get back all you have paid in!" Once again the local AlzSoc has been a great help in arranging advice.

    Don't forget you may also be entitled to reduced Council Tax.

    Best wishes, go get that help!
  4. kdt

    kdt Registered User

    Oct 14, 2003
    South west

    I have just read your post. My family is in a similar situation, as my Dad has just been diagnosed with alzheimers. He is in his early fifties. Looking back, this has been going on for some time possibly since 2001. He hasn't driven or worked for nearly a year. He retired himself. he was well aware that his mother, aunt and uncle all suffered the same disease and similar symptoms but has not been told his dianosis. The doctor said he would not remember. For a long while we thought he was depressed, after a series of difficult events that he appeared to sail through with no reaction. My Mum has gone from a well balanced woman to being hysterically happy or on the verge of tears. She has got help from social services and the health centre, What treatments are there for people with such early onset genetic alzheimers?
  5. kmerryman

    kmerryman Registered User

    Oct 9, 2003
    People keep telling us the younger people with Alz are quite rare, but I think that between us we are prooving otherwise.

    Thank you all for your replies. I will keep you posted on our progress after the hospital visit, if I find anything out from the consultant that may benefit you all I will let you know.

    I took mum out on Saturday morning for a while and she remembered that my sister is getting married and she needs to buy a hat, which is more than we have come to expect of her, so a very pleasant surprise indeed!

    Good luck everyone and take care.

  6. kdt

    kdt Registered User

    Oct 14, 2003
    South west

    I have been trying to find out as much as possible about treatments that can slow the development of alzheimers down. My father is not currently being treated, but a friend of the family with a similar condition of similar age and with more difficulties, is being treated.

    The BBC news health website has some articles of interest - particularly the results of some research done in 2001, in mice, so in the early stages, but the drug (as yet not named), arrested the diseases progress (mice were inplanted with the gene for alzheimers). I don't know if trials went any further than this.

    Also there is an organisation which will tell you of the most up to date research,trials and treatments available, fairly with no agenda. Does anyone know what this organisation is called? The council of ...
  7. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    South Coast
    reply to kdt re information on treatments

    My husband is aged 60 and is in the middle to late stage of AD - he first had symptoms in his early 50s. He is the youngest of eight children, with an identical twin - the oldest brother is well into his 70s - but none have had signs of Alzheimer's, and there is no known history in the family.

    Would suggest that you look at the main Alzheimer's Society website for information sheet on drug treatments (http://www.alzheimer's.org.uk). There is a very good list of information and advice sheets on all sorts of topics (see Angela's posting on Open Discussion Forum dated 07-10-2003 5.16pm for quick link).

    The National Institute for Clinical Excellence (NICE) has information about Alzheimer's drugs. The website is http://www.nice.org.uk. Use their search box for Alzheimer's Disease and it will give you links to their information. Their Patient leaflet is quite informative.

    I'm sure there are thousands of other sources of information, but I would definitely recommend the information from the Alzheimer's Society for starters. I find it helps to know as much as possible about this disease.

    With kind regards

  8. PeterG

    PeterG Registered User

    Oct 17, 2003
    Hertfordshire, UK
    My wife Jen is 56 & was diagnosed with Alzheimers in November 2001, but I'm sure she first started showing symptoms 1 year before. She was eventually referred by our GP to the national Hospital for Neurology in Queen Square, London. She is on Aricept 10mg & this does seems to be stabilising things at the moment.

    I beleive to be eligable for Aricept the patient has to score at least 12 out of 30 on the Alz. memory test, also you have to be in an area where GPs can afford to prescribe it!

    Very best wishes,
  9. kdt

    kdt Registered User

    Oct 14, 2003
    South west
    Thank you, that is useful. We are trying to contact the appropriate people to find out what my father scored. May be then we can get some answers.
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Younger people with etc.

    Have you tried Disability Alliance for help with filling in your forms, Crossroads are also brilliant. Good luck, thinking of you and what you are going through,
  11. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    I can only repeat what the others have said you need help. Your Father needs to get a Carer's Assessment done, through this I got vouchers to use with my local Crossroads Branch for 6 hours respite a week and the occassional overnight sleeper. Unless you make a fuss with the authorities they will think everything is OK. I have found out to my cost that those who shout loudest and thump a few desks and shout down a few phones get things done! I found Cross roads invaluable they have branches nationwide an internet search should find your local branch.
    I hope things start to improve soon. Please do not blame yourself for your Mum's condition.


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