1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. connie

    connie Registered User

    Mar 7, 2004
    I am trying not to be too depressive........However what am I doing..........Yes I am trying to keep my dear Lionel on an even keel.

    I am also trying to be 'me'. Last Friday. after a very fraught morning I set off (with Lionel) to enjoy a dear friends 60th birthday celebrations...........some 60 miles later I nearly put us under the wheels of a lorry........(O.K. my fault entirely, I did apoligise to the lorry driver, he really did tear me off a strip\\\\\\\\\\\\\\\\\\\\\\\\0\\\\\\\\\...but this passes Lionel by entirely.

    We have had a diffficult week, some days he is O.K. some days 'not'.......................
    I am trying to be 'grandma' to all the kids, but it only works when Lionel is 'O.K.'
    I feel really torn in half. Yes Lionel needs my full support, but so do my kids and the grandchildren.,,.....In my eyes they are the ones that need support, whilst Lionel has had his best years. I know it is not his fault, but the future really lies with the young.

    Help please, Connie
  2. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Dear Connie
    you are you,you are unique.
    You are a loving caring person who cares about others.
    Don't doubt yourself,we all have lapses (lorry driver) it's because you have so much on your mind.
    Think about yourself sometimes ,do what you want to do when you are able.
    Day to day Connie love,tomorrow WILL be better
  3. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    "...... the courage to change the things I can change, the serenity to accept those I cannot change, and the wisdom to know the difference"

    Dear Connie,
    A simple "guideline" which helps me sometimes, but is often jolly hard to follow.

    I empathise especially with the 'grandma' bit: Nutty Nan is what they used to call me affectionately, I think 'awkward nan' would probably fit better these days. I can't take them out as I would like to, I can't let them make a wonderful mess with toys or paint or water or play dens, and I know I am always on edge for fear that my hubby will say something really inappropriate (like "what are THEY doing here, don't they have any parents who can look after them?"). - I know he doesn't mean it, he loves them dearly, but they disrupt his routine and he can't cope with that easily. YET: they still love coming, they are loving towards him and hug him, and they are exceptionally considerate - they accept him as he is, they know he needs peace and quiet (a tall order for lively 6- and 4-year olds!), and they even try and help him when he struggles with something!
    What hurts the most ist the knowledge that he would have been such a wonderful Grandad, were it not for AD! He was always playing and clowning with our own children, making up funny rhymes and songs, and spoiling them.

    Compromise is the motto these days. I have lost count of the times I have vowed "never again" after a disastrous outing that has left me frazzled (like your trip to your friend's birthday party), but fortunately, I have always 'recovered' and (like a fool) gone on to plan something else we can do together, in spite of the real risk that it will turn into another nightmare. I hope I don't stop planning outings and asking the little'uns round, because I don't want to miss out on the occasional heartwarming moment of my man beaming at someone's party, enjoying a messy ice cream in the park, or singing 100 verses of Incy Wincy Spider witht he grandchildren ......

    Don't beat yourself up, Connie, we all have times when we feel all this is unfair and wonder whether it is worth it! I hope you have a great weekend to make up for the difficult week.
    Best wishes!
  4. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Connie,

    My Mum finds it so difficult after having shared so many good and bad times with my Dad.

    We have a big family party coming up and this will be the first time that Dad won't be there. Although he is in a Home nearby, he gets restless and does not like crowds. It will be hard for Mum and I'm sure she will be feeling that 'torn in half' thing you describe.

    Even when we take Dad out somewhere, Mum is alone in many ways and when things are going badly, that must be doubly difficult, the feeling that no one is 'on your side'. We were saying goodbye to my sister, the other day, and getting back in the car Dad was saying "it's a shame having to leave her all alone". Mum and I looked at each other and I said "Never mind, we manage" and Mum said "Yes, we manage". And I guess that's what we all have to do, isn't it?

    I was lucky that my Dad was that 'wonderful Grandad' to my children but, absurdly, I find myself wishing that his great grandchildren could have known what he was like then.

    All the best Connnie, like the others I wish you a better day today.
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Connie

    to care for someone with dementia is more than a full time activity, even when one is not doing so at home. Most people couldn't - wouldn't - do it.

    to juggle a life outside that at the same time requires the strength of Hercules, the wisdom of the Dalai Lama, the limbs of an octopus, the sense of humour of Norman Wisdom [or perhaps just Norman...;)], the grit of John Wayne [and the exercise will probably give you his walk, as a side-effect], the staying power of a bad smell, and so on.

    Even with that lot, something is going to have to give, and the best one can hope to do is to spread oneself just that bit more thinly. Fortunately, young children are very forgiving, and that is something they tend to share with people who have dementia. The generation in between can be more of a challenge, but most understand very well.

    It seems part of the carer's repertoire that they always think they are not doing enough, even when most other people would be on their backs at the roadside at the first hurdle.

    Being depressive is another part of the repertoire, but fortunately that comes and goes, and the children and grand-children come into their own in shutting that particular door.

    Take it easy as you are able. Don't worry over much about others.... think of yourself for a change.

    Grandmas are the female versions of Superman, scary in their capabilities and they can even sew their own capes when they get frayed from flying over fast to help too many people.

    as for lorry drivers.... he probably had a mobile phone in his hand on a roundabout, a sandwich in the other hand, and a fag in his mouth. They put the fear of god into so many people that it is good to have you there to redress the balance!

    As a request - please can you go for a white van driver next time?:)

    Take care!
  6. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    Connie, as well as Lionel and children and grandchildren needing attention YOU need some care and indulgence once in a while. It strikes me that caring comes with a massive dose of guilt attached so if the carer takes some time off this is overshadowed by the fact that the caree (is there such a word?) is not able to come along and enjoy it as he/she would have done in the past.

    The sufferer is in their own little world, and sometimes that world is obviously not a good place to be, but that can't be helped by you never doing something just for you.
  7. connie

    connie Registered User

    Mar 7, 2004
    THANK YOU everyone for your support & good wishes. A special 'thank you' for the P.M.s

    Am feeling much calmer and more in control. Love to all, Connie

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