1. LindaD

    LindaD Registered User

    Nov 17, 2004
    30
    Suffolk
    I found you by accident cos I was looking to see what help I could find on the Age Concern website. I recognise a lot of what is being said here with the situation with my Mum but her situation is harder maybe than some and neither my brother nor myself are near enough to be with her every day.

    She is 75 she has been the Carer for my stepDad since he had a stroke which has left him immobile for the past two or so years. She has refused respite care for herself on several occasions right up to the point of actually doing it. Her memory has got worse and worse over that time but I think we have only just realised quite how bad.

    We were aware that she wasn't doing the washing properly, that they were both wearing dirty clothes and that she wouldn't remember when we were going to visit etc etc. When she started forgetting to pay bills we put everything we could on to Direct Debit. She has also got incredibly thin although she is reasonably healthy. Stepdad is also incontinent (which she denies) and the whole house smells and is not clean (which she also denies)

    My stepdad's evening care had to stop for a while and Social Services wanted him to go into emergency respite for a few weeks but she insisted she could manage. She lasted 4 days and he had a fall and she couldn't get him up and dialled 999. he ended up in hospital, I spent several days with her. She kept forgetting where he was and it was a constant battle to keep her on track. You would think she had got it and it had sunk in then bang it was gone again. And all the time she says she's always been absent minded, or she gets confused cos she has so much to do or I am confusing her. The strain of being with her is incredibly draining and sometimes I get cross and sometimes I have to walk away but I do love her dearly.

    He is out now and in a respite home for the time being, but she still keeps forgetting where he is or going backwards and forwards (it is a fair old walk) several times in one day. We have Social Services on side but the truth is that he can't come home unless she gets a certain level of care and it has come to light that she has been forgetting to get meals and do shopping and certainly to do any washing.

    She has had a mental health assessment by a doctor who came to the house and spoke to me and my brother as well and she agreed that she would accept a higher level of care but that thought hasn't stayed with her very long. She insists that there is no problem. My stepdad wants to come home as soon as he is able to, understandably but he has told us and her a few home truths. She hasn't heard, it hasn't sunk in, she goes on and on about when can he come home, we are expecting her to kidnap him any day now!. So I really don't know what is going to happen. I feel she needs someone there all the time and it simply isn't feasible for it to be me or my brother. The Social Worker is incredibly caring but at the moment we still don't know what she is going to be able to put in place or what assessment the doctor has made as she saw him on her own and she can present very well if she is in the right frame of mind.

    I am worried sick that I can't be there and so so sad for the both of them and that she has changed so much from the Mum of just a few years ago. The doctor has put me on anti-depressents which seems slightly ridiculous really!

    Sorry about the rant but I guess it helps, thanks for "listening" - any advice would be grateful recieved!!!
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    #2 Brucie, Nov 17, 2004
    Last edited: Nov 18, 2004
    Hello Linda

    Welcome to TP!

    It never rains, but it pours, eh?

    You say Mum has had an assessment, but you do not know yet what the result was, specifically. Have you asked the doctor to let you know as soon as the results are in?

    It is always dangerous to assume things, especially when her main problem is forgetfulness.

    You say Mum is 75 and she has been caring for your Dad. Well, caring for someone full-time is a very draining thing for the youngest of us, and it may be that she has a combination of age, tiredness and depression.

    Do you know if she is on any medication? That can have an effect too. Sometimes when the clothes and body washing get omitted, infections can creep in - these can debilitate people. Might be an idea for the doctor to give her a physical, too.

    There's something else that happens to carers - they get so involved in their world of caring and the needs of the patient that the outside begins not to be there. In many respects their reason for being is to care for that person. When that happens, and the person they are caring for is not there for some reason, suddenly they are at a total loss, and all they can think about is getting the person back again, so they have a role once more.

    Sounds daft. Until you've been there!

    Time just goes by. One day is like any other when you are caring full time with no help. Don't worry that forgetting visit days is THAT important, at least until it is tied in with lots of other indicators.

    I have to say, it sounds like it might be more than these things and that is why it is important to have the results of the assessment. There is not just Mum to think about - Dad depends on her.

    My GP has often tried to put me on anti-depressants. My answer is always 'no', because I know the reason why I get depressed - my wife has dementia and is in an awful state. In the same way I deal with my bad back - to manage it - I deal with depression when it comes. I manage it.

    If you feel that medication helps, that's a personal decision, and you are the one to make it.

    No answers, I'm afraid, but just take things slowly, if you can, for the moment.

    Check out some of the relevant posts on Talking Point to give you more information about specific things.

    Best wishes
     
  3. Chesca

    Chesca Guest

    Dear Linda

    Don't be apologising for your rant. Of course you love your Mum dearly, that's why you are there giving support. But don't be too hard on yourself if you are finding it a struggle - you're dealing with the mental illness that is AD, your Mum is not, yet, and that is her right. Don't kid yourself she doesn't know what is happening to her, she's been around too long, seen too much, not to know when something is wrong. She is made of strong stuff. You just have to agree with what she says, all the while ensuring that the relevant support services are aware: the GP, social services who can be very supportive in a lot of cases and seem to be aware of your parents' circumstances.

    It's hard to accept that you are no longer in control and others are going to take over in your home - let's face it, none of us wants an interloper on our territory calling the shots. Certainly my mother was outraged at the suggestion that she needed help from 'outsiders' in order to 'keep house'. But handled in the right way by the right people Mum may become a little more accepting. We had a lot of difficulty with just this situation and we dealt with it, not always successfully, by telling Mum that she had waited on everybody all her life and it was now her turn to be waited on and other variations thereon.

    However much you may want to take control born of concern, and put things in place for your own peace of mind, it will never be at your pace; AD is the pace setter and the rate at which Mum relinquishes her independence is dictated by that to a large extent; the GP and medication, social services, a possible nursing home placement, nursing care at home, are things for future consideration and may take over eventually. Wait and see what the social worker's conclusions are and have a good talk about all options available in the best interests of everybody.

    Don't consider it ridiculous that your GP has recommended anti-depressants for you - he/she obviously knows the stress you are under and for the time being it is a short term measure to help you through. Take comfort that your GP is aware of the situation, he/she will be a useful ally in the future should you need to take decisions. And above all, be kind to yourselves, you and your brother. You are obviously both very caring people and you both have rather a lot to deal with worrying about both parents. It's a tall order, but I'd say you're moving in the direction.

    Don't forget, your Mum is still there, it's AD that's the not so nice manifestation but that isn't her. There were times my Mum became an alien being to me through AD. But I hold on to small things now. For example, today she asked, quite clearly, could she have another of the strawberries we had taken her for as a bit of a celebration picnic. A small thing in itself, but for somebody who has hardly responded to anything for a long time it reminded me that she was still in there - strawberries are very much her thing and always were. Just a thought. I wish she could pick a field full, like she used to, but for now a small dish can be my field of memories.

    I wish you every best wish and know that you will get there, wherever it will be and it will be a rocky road sometimes. But love and care can carry people along extraordinary paths however frightening they sometimes seem.

    Thinking of you
    Chesca
     
  4. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Linda
    I think you have had already some very good advice for the present time.
    Please keep in touch ,keep us up to date with your progress,we are hear to try and help
    Do look at the factsheets there is an abundance of help and advice available
    very best wishes
    Norman
     
  5. TED

    TED Registered User

    Sep 14, 2004
    154
    Middlesex
    Hello Linda

    I read your initial post and found myself nodding throughout thinking "yes that's happened here too"
    While I cant reply and add anthing new to what's already said I did want to reply and say that you certainely are not alone and while it's not easy to not feel scared about this condition and how it appears it will help to talk to others. I hope we can offer some comfort if not always solutions.

    Although I am lucky to live quite near to my parents still, I find that even on good weeks I am able to upset myself over this. I dont bottle it up anymore I just find a quite area and let it out. It's much better for me than drowing myself in a bottle (which is what I used to do) but enough of me.
    I do hope that both you and your brother can support one another as well as your parents. Brucie Cheska and Norman have all given good advice here and you'll always find someone around here who can help / advise but most importantly listen.

    take care
    TED
     
  6. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Linda, just wanted to say I'm thinking of you, this is one of the hardest of illnesses to cope with, can't ofer any more advice other than what the others have already said, please continue to post. We can offer support even if we can't put it right. Love She. XX
     

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