1. Harriett

    Harriett Registered User

    Jan 15, 2007
    2
    Norfolk
    Hello. This is my first message. I have been Mum's full-time carer for over a year now. She was diagnosed with Alzheimers around November 2005. Her deterioration has been quick and significant. She was given a mental agilitity test and was prescribed Aricept. Some months down the line poor Mum began to fall. This resulted in her being admitted to hospital (a three week stay). Aricept was stopped at that time to access if this could possibly be the reason for her falls - it was decided this was not the case. After leaving hospital a second mental test was given and her score was below the base line for prescribing Aricept, so consequently no reinstatement of the drug for Mum. Mum and Dad live very near to me. Dad is 90 and although he has his own various health blips, he is so good for Mum...so patient and loving. Mum has an obsession with loo visits, whether she needs to 'go' or not, and if I'm not with them when she asks for help to 'get up' Dad will do his best to help her to the loo. Mum uses a walking frame, she cannot walk about the house now without help and support. Dad called me about an hour ago, another fall for Mum, she hasn't hurt herself this time. I have picked her up and settled her back to bed. I cannot get back to sleep, so this is the reason for posting this message at this time of the morning! I feel so sad... this is a Mum who, until this dreadful disease took hold was the lady who held the family together, was very fit and healthy, did so much for everybody, gave special Birthday teas for my Sister, Brother and myself and our partners. A wonderful, loving, family oriented, Mum. ...and now cannot do anything for herself. I love Mum so much, I want to continue to do all I can for her... it's hard going sometimes, it takes its toll. There is so much more I could go on about, some issues that have made me quite depressed, but nothing will stop me giving Mum (and Dad) the dignity that they both deserve in such a very difficult period of their lives. I would love to hear from any of you out there. Harriett
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Harriett,
    Welcome to TP - sorry that you had such a bad night last night - its horrible when your mind goes into overdrive and just won't let you sleep.
    Your mum and dad sound lovely - but dementia is indiscriminatory in who it touches. All we can do is keep on loving, keep on supporting. Someone else's turn now to become the strength of the family. I know it is hard - but you will find that people on TP will always be ready to support you.
    Take care .
    Love Helen
     
  3. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Harriett,
    Just want to welcome you to TP - it is a great and supportive place. Your parents sound lovely - and you obviously are deeply devoted to them. Keep up your efforts on their behalfs - I am wishing you strength for the ongoing journey. Best wishes. Nell
     
  4. CassElle

    CassElle Registered User

    Jun 7, 2005
    45
    Blackpool
    Hi Harriett,

    I know just how you feel. My Mum was diagnosed with Vascular Dementia in October 2003 and a further brain scan in August 2004 resulted in an amended diagnosis of Alzheimers.

    Since December 2003 Mum has lived with me and I am her Carer 24/7. Just prior to her diagnosis, she had managed to overcome Cancer of the lung; having part of her lung removed. She was subsequently diagnosed with Diabetes. She has a continual stream of Urinary and chest infections. She is very, very unstable and has to be supported when walking at all times.

    During Mum's lifetime she has been plagued with OCD (Obsessive Compulsive Disorder), relating to toileting and constant handwashing. Like your Mum, she has an obsession with visiting the loo; each visit can last over an hour, only to find that she has failed to urinate etc, but instead, has unravelled the whole of the toilet roll and is sat folding it!

    More recently Mum has had a couple of falls, having attempted to come out of the toilet unaided. I would sit outside the loo waiting for her to finish - then, on a couple of occasions I dashed downstairs to get something, and that was when she got up, walked outside the toilet and fell. Fortunately, she was unhurt on both occasions. However, as you can imagine, it resulted in my spending hours each day, sat outside the loo, afraid to move!

    Having done some research on the Internet with respect to any available aids that might help with this problem, I came across a Sensor Mat and Voice Alert, which can be placed in front of the toilet; should Mum then try to stand it sets off a loud buzz which alerts me to the fact that she is attempting to move off the toilet. In addition, if your Mum is able to understand instructions, you can also record a message into the Voice Alert. The Sensor Mats come in three different sizes and can be utilised in toilets, at the side of beds or on a chair, etc. and will work if either pressure is put on the pad or is reduced, dependent upon which is appropriate to your circumstances.

    Another type of aid is a Sensor Pad that fits onto the toilet seat and should the person stand, reducing the pressure on the pad, the alarm is then activated. (I couldn't have that type as Mum has to have a raised toilet seat and frame and the Sensor Pad would not fit onto such aids. The Sensor Mat and Voice Alert I purchased totalled £51.00 but have been a godsend to me.

    I know exactly how you feel, it's heartbreaking to see someone you love deteriorate to the point of being unable to do anything for themselves. With each urine/chest infection Mum has, I see a further deterioration in the AD. Most days, she is unable to feed herself (particularly when she has the infections) and if left to her own devices, will sit painting her nails with the food. Mum becomes particularly agitated in the late afternoon (possibly relating to the condition 'Sundowning'). She is unable to say what is making her so agitated and at times I feel helpless in that I am unable to help her with these feelings.

    Life can be totally exhausting at times caring for a loved one with AD, but those brief spells that occur, when Mum's smile lights up the room and for just a second, I see the 'old Mum', it makes it all worthwhile. You just learn to live life hour by hour, getting through the bad days and treasuring the good ones.

    Whenever you're feeling a little down, have a chat on this site; I've found it very helpful and informative. You can tend to feel isolated as a Carer, and it's good to converse with others in the same situation. Take care.

    CassElle:)
     
  5. EllieS

    EllieS Registered User

    Aug 23, 2005
    170
    SOMERSET
    Dear Harriett

    Isn't life a b---c!

    You are a very good and loving daughter and your Mum & Dad are lucky to have you.

    You must be as worried about your Dad as you are about your Mum. What to do, who knows!

    I really admire people who take their poorly parents into their own homes to care for them 24/7 - even though it must be so very exhausting they should never have any reason to feel guilty for they truly are doing everything they can.

    But we can't all do it and guilt is there all of the time.

    It's sometimes hard to know what is the right thing to do, but I made the mistake of focussing too much on Mum & Dad wanting to be together which lead to my Dad dying from malnutrition and dehydration because my Mum unbeknown or unrecognised by me and her sisters had alzheimers herself and was just not able to cope even though it looked as if she could!

    So do try to see things from every which way. But Whatever, you do, make sure you get the support of their GP and ancilliary workers.

    Do take care and remember you can only do what you can do.

    Eleanor
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,649
    Kent
    Dear Harriett. Welcome to TP. I`m so pleased you`ve found us.

    You seem to have a lovely mother and father and I can understand how heartbreaking it is for you to witness their decline into ill health. In turn, they have a devoted daughter.

    I hope you continue to have the strength to do all you wish to do for your mother and will be able to ask for help when the need arises.

    Please keep posting. You will get lots of support which, I hope, will help you. Whilst you are looking after your parents, please don`t forget to look after yourself.

    Love Sylvia x
     

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