Replay: Being a Daughter

The post below is from November 2008.Reading it, I realise some things have changed a lot, and some have changed very little.

Perhaps what has changed the most is my ability to cope with my mother’s condition, and to find positive aspects of it. I gather this is quite a familiar path for relatives of people with dementia. Part of it is, I believe, the gradual acceptance of the person one’s relative has become; so that instead of hankering after how they were, one starts to look more at who they have become and to develop a new relationship with them. I seem to be looking at the things Mother can do, rather than being so aware of the things that she can’t. And of course, Cat and I are now afloat when we visit and Das Boot is our home from home.  But I still have done very little helming.

I am feeling a bit Bambiesque. Not huge eyes and other appealing features, but more that sense that if I’m not very careful I may lose my balance. A lot has been happening and not happening. My boat is still in Oxford, I have just returned from several days in The East, someone wants to rent my mother’s house, I’ve turned down a job but am not sure I want the one I have, my mother is not entirely sure who I am.

The cat accompanied me and resumed his feud with the neighbour’s cat. They glared at each other through the window, and I only allowed mine out at night when Neighbour’s Cat was snoozing by the fire. During the day I visited Mother. She’s shockingly thin, so I’ve been feeding her up and telling all the staff that she needs more than a slice of bread for an evening meal. The trouble is that once she’s tired she says she doesn’t want to eat. They take her at her word, while I prepare her something like a boiled egg with buttered toast and once she’s started on that she generally revives enough to tackle some brie – her favourite – and a rib sticking pudding. I’ve been recovering from laryngitis and coughing a great deal. Each time she heard me Mother pursed her lips and said it sounded painful, and I agreed that it was.

I was also supposed to be taking delivery of Das Boot. Unfortunately, I was let down by the boatyard, which was let down by the trailer people and it all turned into something akin to the old woman who swallowed a fly, so dates are now fluid once more. Meaning that I have no idea when I shall have the chance to practise and perfect my helmsman’s skills and the cat has a reprieve from his lifejacket wearing.

In anticipation of Das Boot’s arrival, I had taken various items with me – bedding, pots and pans, towels, a spare fleece and so on – as well as a load of cleaning materials as I guessed the boatyard boys weren’t planning to scrub it from bow to stern for me. When the boat didn’t come, I thought I these goods would sit my mother’s yet-to-be-sold house until time, tide and transport all conjoined. But no. With amazingly infelicitous timing, the estate agents have found someone who wants to rent the house from next week. I’ve become so used to thinking that nothing will happen that I have begun to nest, and this supposedly empty house was, I suddenly realised, quite full. So today, after squaring a few things with the estate agents, and understanding a fraction more about the arcane intricacies of renting out a property, my little car was packed to bursting for the journey home.

My mother’s memory is increasingly erratic. When she is tired she becomes confused and unsure who I am. She’s pretty certain we are related, but how is the problem. She says, ‘Do you mind me asking you something? Are we family? Are you my niece, or my aunt?’ She is, flatteringly, extraordinarily pleased to discover I am her daughter. It’s as good as winning the lottery. ‘You come here and do so much for me and you’re my daughter! That’s wonderful!’ Later she introduces me to someone as her mother, but with such pride in her voice all I can do is smile and give her a kiss. It’s desperately poignant, and yet, what greater compliment could she pay me?

While I’m there, I’m practical. I cook, I wash, I clean. We watch Flog it! together, sitting side by side on the sofa. I hold her hand and try to allay her fears. I hug her tight and tell her I’ll see her soon. But now I’m home, I think how my capable, competent mother has turned into a frail little old lady who struggles to make sense of her life minute by minute, is often frightened and confused, and I could howl.

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28 thoughts on “Replay: Being a Daughter

  1. I can imagine how you feel Isobel, frustration doesn’t come close does it? Watching your Mum like she is must be heartbreaking. On top of that, you have your own concerns, job change, along with with other frustrations, you really didn’t need boat problems too.
    “Can somebody stop the world please, I’d like to get off now” 🙂

  2. Hi Val
    My frustration is more to do with social services and the carers and manager where my mother lives. I do not see any evidence of a holistic approach. Nor do I see evidence of the expertise they claim to have when working with people with dementia.
    Dementia does not make you stupid; it confuses. But I see people treating my mother as though she is simple. They are amazed and disbelieving when I say she responds to poetry. My friend’s mother who has just died also had dementia. K said she responded to singing; particularly the Polish National Anthem, she would join in and sing all the verses. A refugee after the war, she had trekked across Europe with her younger siblings.

  3. How long she been living with dementia?

    I know it doesn’t make it acceptable but I suppose most of the carers who deal with dementia sufferers probably won’t have been given any indepth training on best practice therapies and may not have had *personal* experience to understand that she should be treated with dignity.

    Rereading an old journal entry can give you a new perspective.

    • Difficult to say. I think she self-diagnosed, and elected not to tell us while she thought she could manage. Doctors won’t tell family members as it beaches patient confidentiality.

      The anaesthetic she had for her second hip replacement after she fell was what forced the issue, and that’s about seven years ago now. She never got over it, was increasingly confused, anxious and started accusing us of various things, mostly to do with money. One day I was listening to a discussion on radio 4 where it was made clear that a general anaesthetic can accelerate dementia’s progress.

      I think there’s a lot of stereotyping about the elderly; seeing them as a homogeneous group, where they are as diverse in their interests and needs as any of us. It leads to a rather patronising attitude and a lack of seeing them as individuals.

      I find this last particularly upsetting as the organisation that runs the place where my mother lives, claims to be ‘at the forefront of dementia care with a reputation for providing high quality, person-centred care and support’. I have yet to see the evidence to support that statement.

  4. I know you’ve said you’ve had problems with the management team but I wonder whether the owners believe they are at the forefront but the people they employ have no idea what that means. Unless they have radically altered their business model, I imagine that they will probably rely on a lot of people who aren’t paid very much and may not care.

  5. Does the care home she is in employ an Occupational Therapist? I have a great deal of time for this group of professionals, as a general rule and they are frequently in a good place to advise and support nursing staff and carers with regard to taking a different approach.

  6. Hi Sophie and Pseu
    Sadly i think it comes down to money. It’s not a nursing, Mother doesn’t need that yet. actually, I hope she never does. As it is often quicker to do things for her, that is what the carers tend to do, so she gradually becoming deskilled. She stopped making cups of tea for herself within weeks of moving there, learning that if she went down to the lounge someone would soon make her a cup. So stimulus is not part and parcel of the daily approach. There’s an activities organiser, but no OT. Expectations are pretty low.

  7. Would it be worth having a private OT assessment with the aim of getting some specific recommendations drawn up by her for the home to implement? Could they, would they?

    • I think it’s unlikely.
      It’s not a home, but sheltered housing, with provision for eight flats for people with dementia. The initial manger was dreadful, and although I was cautiously optimistic about the new one, I don’t feel we are getting anywhere. Particularly after she assured me how much my mother had enjoyed an activity that I know she did not attend.

  8. I think as a society, we do not invest enough in the elderly. They are often seen as a nuisance and a problem. Perhaps it is because we are increasingly youth-orientated that we fail to value what old age, and those who have reached it, have to offer. Stimulating people, working with them, would help keep people happy and healthy. I’m sure we could save on prescriptions and hospital stays if we took a more creative and holistic approach.

    • Sorry, that might be a little flippant. I do think you’re right about the cause. It would be good to think that there could be an improvement in the future but it does require some fundmental changes to the approach.

  9. Not flippant at all Sophie.
    It’s rather what i’m hoping.
    In one Scandanavian country in at least one location they have housed a crėche in a home for the elderly.
    The little ones don’t judge the elderly; the more capable of the elderly read stories to the little ones; and they have the joy and benefit of interaction.
    If I take Mother out and there’s a toddler about, Mother ignores me and is entranced by the toddler.

    • I learned a few phrases before I went.
      i loved having the right colouring for once. I stick out like a sore thumb in southern mediterranean countries. So i asked for my 100g of cheese and got a flood of swedish back, so had to hold up my hands and confess that was about it.

  10. Isobel: there is a programme which has just started on BBC1 called The Young Ones (not with Rick, Ade or Cliff!) which appears to be an experiment about surrounding elderly people with things from the 70’s, ie when they were in their prime, to see if it can have an influence on well they cope. If you’re not watching it now, you may want to try to catch it on the iPlayer.

    • Blimey, I think my mother’s prime was more like 1945!
      Thanks for that Sophie. I’ve been at mosaics. I’ll check it out.
      My mother is v good in antique shops, and places like the Ulster Folk Museum.

  11. Pingback: Dementia Revisited | IsobelandCat's Blog

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