New to this............

Discussion in 'ARCHIVE FORUM: Support discussions' started by Ka-Lo, Mar 13, 2008.

  1. Ka-Lo

    Ka-Lo Registered User

    Mar 13, 2008
    3
    Somerset
    Hello

    I have just joined and have been sat here for a while trying to figure out how this all works! I am 25 years old and last year I gave up my job to care for my Mum (62) who has Alzheimers. Although I have a wonderful family and great friends at times I feel very alone as I don't think they understand what it's like to care for someone with the illness. It would just be really good to get any help/ advice or just chat to others who can relate to what it's like.

    Ka-Lo
     
  2. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi Ka-Lo and welcome to TP.

    I am not a full time carer (it is my Dad who has AD and my Mum is his carer) but I take my hat off to full time carers, whether it be a spouse or a parent.

    I sometimes have a go at my Mum for losing her patience with my Dad, and then I look after him for just one afternoon, and can end up totally stressed and aggrivated.

    Friends are great, they ask how things are, listen to the reply, make sympathetic noises, but you can't make them really understand can you? Now with my friends I just say things are fine, or not so fine, depending on the situation at the time, and change the subject. When they are falling out over something or other I feel like shouting "Is this really all you've got to worry about?", but I bite my tongue and leave the room.

    You mention family. Are you an only child or do you have siblings who could help share the burden, at least of the worry if not the care? If not you'll find plenty surrogate siblings on here! :)
     
  3. Ka-Lo

    Ka-Lo Registered User

    Mar 13, 2008
    3
    Somerset
    Hi Sue

    Thanks for your reply, it is really great to have people that truely understand. The part about friends is so true, I don't often talk to them about it in detail...like you said "just things are good or things are bad". I sometimes get really cross when then moan about their Mum's or a fall out they may of had with them, although I still have my Mum and love her very much I am more like a Mum to her now (if that makes sense) at times it's quite hard to cope with!
    I have 3 elder brothers who I am very close with but they have their own family & full time jobs, which does not give them much time to spend with Mum. They all do what they can, but the main burden does lie with me. My Dad is still with my Mum, however he just can't seem to cope with looking after Mum, hence why I took over.

    Some days are good, some days are bad, Mum can be very up and down and at times I find it really hard not to get cross if I do I always feel really bad as I know it's not her fault.

    Ka-Lo x
     
  4. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    716
    Ashford, Kent
    Hi Ka-Lo

    Welcome to TP.

    It's hard watching your parent struggle with this illness. My Dad has dementia and it's sad watching him get confused:( He was such a bright man before and he just is like a little boy now at times. Mum and Dad came to live with us 5 years ago, but sadly we lost my Mum 8 weeks ago which leaves Dad totally dependent on us.

    I've got 2 children and they've never stopped me from being able to take on the responsibility of my parents, so make sure your brothers do help you (despite them having their own families). It's a lot to take on by yourself and you do need make sure you get some time for yourself too. Your Mum wouldn't want you missing out on life I'm sure.

    Best of luck.

    Beverley x
     
  5. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Hi Ka-Lo


    Welcome to TP

    My mum has AD and I was chief Carer for a few years so I know just where you are coming from when you say you are more like a mum to mum.

    I tend to think more of the practicalities of Caring, so I always wonder if new TP members have got the Lasting Power of Attorney sorted out. (If not remember it can be downloaded from the Internet, or you can obtain from a Solicitor… though you should check the price first as Solicitors charge what they want.)

    Presumable your mum has been diagnosed with AD so you will have organised the Attendance Allowance Benefit and checked to see if your mum qualifies for a Council Tax rebate.

    Other members will be along to offer advice and chat so keep posting. It does help to chat to others who have the same concerns.

    Best Wishes

    Clive
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,577
    Kent
    Hello Ka-Lo

    You are very young to have so much responsibility for caring but your father is very lucky to have someone to share the burden.

    I don`t think anyone who hasn`t experienced it can understand. It isn`t just the physical demands with AD, it`s the emotional trauma of seeing someone you love become so confused, so unpredictable and so unlike the person you`ve known and loved for so long.

    I do hope you make friends on TP. There are many younger carers here as, unfortunately so many more younger people are being diagnosed with AD.

    We all get cross at times as we are all human and have our own good and bad days. But don`t let it get you down. In your heart you are trying your best to come to terms with a poorly mother. So you need someone to care for you too.

    We all care for each other on TP.

    Love xx
     
  7. kiytyn

    kiytyn Registered User

    Mar 7, 2008
    16
    ramsey, isle of man
    hi ka-lo
    i've been a member here for about a week and everyone's fantastic. you sound like your the perfect person to be looking after your mum, take one day at a time.
    kiytyn
     
  8. AJay

    AJay Registered User

    Aug 21, 2007
    123
    Leics
    Hi Ka-Lo

    Grief you're so young to be looking after your Mum and she's so young to be suffering this disease.

    I really felt alone when I was the sole carer for Dad, even though I have siblings their relationship with him is non existant and they don't communicate with him so didn't see the deterioration and cuoldn't understand my sadness and frustration. The only people who half understand what you're going through is somebody in a similar situation to you so please keep posting, we laugh and cry together on TP.

    Don't worry about the frustration you feel, I hate to say I sometimes screamed at Dad before I vaguely understood what he's going through, I just didn't try to put myself in his shoes and the burden of caring, working full time, running my own house (though luckily I have no children) and putting my own life largely on hold took it's toll and was taken out on Dad. Now he's in care our relationship has come on in leaps and bounds and I enjoy every minute I spend with him. But that's only because the stress has been removed from both of us.

    Take some time out for yourself or you'll burn out. In a very lucid moment my Dad commented today that I have a life to lead which shook me to the core because I had no idea that there's some understanding in there about what I've done for him. Your Mum will so appreciate what you're doing.

    Welcome to the ranks!

    AJay xxx
     
  9. Ka-Lo

    Ka-Lo Registered User

    Mar 13, 2008
    3
    Somerset
    Thank you to everyone for all your kind messages. It is so nice/helpful to talk to people that really understand what it is like.

    I do take 1 day a week out to work in my friends shop which is great for me & for Mum as she spends to day with friends.

    I wonder if anyone can help me......over the next few years I plan to have children and at that point I will need to look for some other form of care for Mum. I don't really want to have her go in a home yet as I feel she is not ready for that, does anyone know of care that can take place at home?

    Thanks Ka-Lo
     
  10. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    #10 hendy, Mar 18, 2008
    Last edited: Mar 18, 2008
    Hi Ka-Lo
    Sorry to hear your mum has AD. Your mum is lucky to have you, it was a brave decision to take time out to care for her at home. You seem to have got things together as you have made 'time out' for both of you. Its difficult to advise you about your mum because eveybody's situation is different. All I can say is that when caring for my Dad(he was diagnosed when my youngest was 6months and my eldest 5 years))it was a terrible time for me, there were other factors like siblings not helping etc. The disease is so unpredictable but somehow you have to plan ahead(almost imposible) and try and keep onestep ahead, but it can put you under very great strain indeed, especially when emergencies happen. The hardest thing I have to now deal with 5 years on, is who to give priority to Dad or children or husband or career.Sometimes its impossible. I think you are very sensible to consider future plans for your mum. Practically speaking, there is help available to keep sufferers at home for as long as possible. My dad had home care support for a while. Eventually, when he declined so much there was no other option but to find a home for him.
    I hope you find TP to be a great source of advice and support. There isn't anything else like it. I found it late in the day, but already its helped me enormously, if anything to be a better carer. Keep reading everybody's posts, it can be an emotional experience. But it is so reassuring to know that you are not on your own.
    take care
    hendy
     
  11. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Ka-Lo


    I'm sorry your mum has AD, what a good daughter you are to help your dad to care. I'm glad you've arranged some time out for yourself, it's essential to avoid becoming isolated.

    You're absolutely right to go ahead with your own family, and it's sensible to get a care network organised in advance.

    You need to contact social services and arrange an assessment for your mum. You should also ask for a carers' assessment for either yourself or your dad, whichever is regarded as primary carer.

    This assessment will be to see that the carer's needs are being met, and that will include cover so that they can get out and meet people, care for the rest of the family etc.

    It's every carer's right to have this assessment, but SS don't usually offer it. You have to be firm.

    Welcome to TP, by the way.
     
  12. SueG

    SueG Registered User

    Jan 21, 2008
    9
    Port Talbot
    Hi Ka-Lo,
    I'm picking up on how family and friends have no idea and very little interest in what is happening. I always thought I had a very close family.
    Mum was very close to her three sisters and my cousins and I were brought up like sisters really.
    Now, I don't hear from anyone! I really think they feel too awkward or want to pretend it isn't happening!
    Two weeks ago I met my mother's youngest sister in Tesco although I asked about her family she could barely look me in the eyes and did not ask after Mum at all Perhaps she thought I would ask for help!
    My friends are really good though always asking how Mum is and making sure that I go out with them.
    I don't know if you've got brothers and sisters my sister lives over 200 miles away but comes whenever she can and gives support via the phone!
    I hope everything works out for you. You'll find plenty of support here!
    SueG
     

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