1. jc_wood

    jc_wood Registered User

    Apr 10, 2006
    2
    Hi All

    Im new to this site but I guess I have something in common with a lot of you or I wouldn't be here. My Mum was diagnosed with Alzheimers towards the end of last year. I think that we all knew there was something wrong (I am part of a big family) but probably thought that if it wasn't said by a doctor then it wasn't true.

    I have read on here about people feeling guilty for one reason or another and I know what people mean. I live 200+ miles from my parents and don't get to see them as much as I should and I have gone through the feelings of guilt because of this.

    Because I don't get to see my parents as often as maybe I should, it was quite a while before the "changes" in Mum were really noticable to me. I had been told by my sisters of things that Mum had done but whenever I saw her I didn't see any of this. But on one trip it hit me that Mum really was unwell, she went to make me a cup of tea and when she got into the kitchen she called my Dad. In the 2 minutes it took her to get to the kitchen she had forgotten who I was and what she was doing in the kitchen and this really got to me. By the tme she came back into the living room she was fine again as if nothing had changed.

    Just recently my Mum had another assesment and they told my Dad that she had got worse because she had gone down 1 point, what does this mean? Nobody has explained this to him.

    Also, I have been told by my sisters that my Mum has lost a lot of weight and I will really notice a difference when I see her next. For 1 reason or another I have not been able to get there since christmas.

    Whilst we were all growing up my Mum was never one for staying in bed, even when she was "sick". Just lately though she has started staying in bed most of the day saying that "her legs hurt". Whatever my Dad says to her or does she will not get up sometimes 'til 5pm. Is this sort of thing a normal part of the illness?

    Sorry if I have rambled on a bit but I do think that it is soetimes easier to "speak" to total strangers especially if they have gone through the same sort of things.

    Thanks

    Jon
     
  2. Áine

    Áine Registered User

    Hello Jon, welcome to the group ..... I'm pretty new here too. My dad was diagnosed with lewy body dementia in February this year. I'm sure there are people around who are better able to advise but thought I'd say hello.

    I can easily slip into major guilt trips about dad ...... should have recognised it sooner, done something sooner etc etc. Truth is, he's not been an easy man to relate to, always quite distant and very deaf for many years, and it wasn't that easy to see any difference in him. Hindsight is a wonderful thing. And also I DID try to get help sooner but, perhaps like you with your mum, he was able to put on a good show when social worker etc visited and they said nothing was wrong. I remember not so long ago, desperately wanting him to do or say something "crazy" whilst someone else there so I could "prove" it.

    I think the points you refer to are probably the test like they gave my dad .... a series of questions testing memory ... they ask name, address, date of birth, who the queen is, where the patient is at the time, ask them to count backwards, repeat a sentence etc. Someone else around here will be able to explain it and give it it's proper name.

    As for advice ....... I'll offer the advice I keep giving myself, and occasionally taking :rolleyes: ...... don't waste your time and energy giving yourself a hard time about what you have and haven't done in the past ..... put the time and energy into making the best you can of now and the future. I reckon me and dad between us have screwed up our relationship most of my life. But we have some time left and it feels like the dementia has given us a chance to finally try to get close and work together. I hope we can make the most of it. Hope you and your mum can too.

    best wishes
    Áine
     
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Hi Jon


    Is your mum on any medication for AD?

    Mum has AD for 3or 4 years now & before taking medication would sleep all day if I let her

    She needed a lot motivation to get her up it did improve with the medication, but she still like her sleep. Could your mum she go to a day centre?

    It is a shock seeing your mum change with AD ,but Aine given us some graet Advice


     
  4. jc_wood

    jc_wood Registered User

    Apr 10, 2006
    2
    Hi

    Thanks for your replies.

    Mum has been on meds since September and it is only in the last couple of months that she has taken to staying in bed. I think the biggest positive change that we saw when she started on the meds was the improvement in her ood swings. Before she started taking them she would ask my Dad a question and whatever answer he gave it would be wrong and she would have a go.

    Amongst all of the sad stuff though there is always room to smile. Recently the girlfriend of one of my nephews had a baby, this was my parents first great grandchild. When my Mum first saw him she was over the moon and my sis said that the years just fell away. Although she has forgotten about the baby, whenever my nephew visits and takes the baby it has the same effect on her.

    Jon
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I use to worry a lot about mum sleeping all the time, use to wonder if it was depression, or just part of AZ, or as mum was diabetic was it that .

    The whole sleeping thing use to depress me. so I contacted social services to get mum in to AZ day centre, 2 times a week got mum a high back chair, but she still nap.

    mum wake me up in the morning has breakfast ,wash & says I just want to lay down am not sleeping really , if she not going to day centre, now days I just let her sleep when she wants .

    My mum lose a lot of weight at the beginning, is your dad her full time carer? Is he getting any support advice, from CPN or social worker about AZ & Changes of mood & behaviours there some good links on the Alzheimer's Society site , may be you could photo copy them for your dad & send them to him .
     

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