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Living with Alzheimer's: deserving of care


My father loves listening to music and when I arrived to see him last weekend he was listening to Rod Stewart.

When I said “hello” he replied “you’re that woman that plays cricket aren’t you?” I laughed. “No, I am your daughter”. I sat on the bed next to him and he kept saying “can I go home?”. I gently reminded him that he was home. “Oh yes, so I am”. This continued for the next half-hour until he said “If we go quickly now we can catch the last bus home”. I know my father used to catch the bus home after the Saturday night dance at the Guildhall when he was a young man, so I just reassured him that he was home safe and that I was with him.

My father worked for forty-nine years. He was a senior engineer, was always immaculately presented and a fine cook. His prize dishes were a Sunday roast and a mean meat pie, and for my 18th birthday he baked me a cake with white and pink icing which was the talk all of my friends. I think he got his baking skills from his father who used to work on the Queen Mary as the chief confectioner and he was very proud of the photo of his dad meeting the Queen Mother on-board the ship. 

For me now, these memories are precious and I know familiarity and reassurance are as important to my dad as reminiscing about the past. Sudden changes can cause confusion and distress. So think how it must feel for my dad having different carers coming in each day to wash and dress him, doing the most personal things that we take for granted. My mum pays for the carers and is sent a list of who is coming each week; she has no control over this and sometimes there are gaps where no-one is allocated at all. She then has to ring the office to try and find out if anyone is coming - which I know for her is very frustrating and I think very sad for my dad.

I wonder how you and I would feel seeing different people coming into our home each day, people we have never met before. Is it any wonder that he keeps asking to go home? It must be so frightening to see all these strange faces. Surely someone with dementia should be provided with the same carers on a regular basis? Next week my mum has a meeting with social services and the company providing his care to discuss this very matter and I hope that by listening to her they will provide my dad with the same regular carers as anyone with dementia deserves.

Sadly, my dad still hasn’t been downstairs - even though the rehab assistants have been coming in and walking him every day. However he did make it as far as the bathroom and finally had a bath after 7 weeks. My mum was so excited that she rang me to tell me! However, this news is tinged with sadness as the rehab assistants are now only able to come three times per week as they have so many patients on their books.  

My question now is will he ever get downstairs or will he live in his bedroom? He doesn’t deserve to be stuck in there all day and we think the only way of getting him down now is by stairlift; however as there is a three month wait for an OT assessment this dream seems far away and mum is now thinking of buying it herself. Further, he has been waiting six weeks for his incontinence pads to be delivered as they forgot to put him on the list. He is only allocated three per day and mum has to buy the extra herself, so the costs really are adding up. Caring is an emotional and tiring job and on top of all of this there is the added stress of how much it is going to cost. My dad has worked all his life and I now feel that in his time of need he is just as my mum describes it: “washed up on the beach”. He does not deserve this and as a society we need to think long and hard about how we have allowed it to get like this and how we can now provide our elderly with the care they deserve in the later years of their lives.



Readers' comments (3)

  • I really feel for Sally and her parents, and it was so sad to read this account of his daily life now. It also makes me really angry that the government is sending 280 million pounds to India who, are not even grateful and don't want it, and this family like many others are struggling to cope, and trying to preserve their loved one's dignity. It isn't just India that is getting foreign aid I know, but whatever happened to looking after the elderly and infirm in this country. We are expected now to work until nearly 70; the government probably hope we die before we have the chance to draw much pension. What a disgusting state this country has got into.

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  • Anonymous | 12-Feb-2012 3:40 pm

    In addition to your comments above, I also feel sad at all the bickering and money being wasted on this controversial NHS bill while nothing is actually being done to help people like Sally and her family.

    There are shocking revelations in Mail online today in a long article which I have only just started to read but i think it is worthwhile for everybody to take a look at. This is just the headline and the first paragraph below:

    "The firm that hijacked the NHS: MoS investigation reveals extraordinary extent of international management consultant's role in Lansley's health reforms McKinsey & Company paid for NHS regulator staff to go to lavish events
    Many Health and Social Care Bill proposals drawn up by the company
    Document shows it has used access to share information with other clients
    McKinsey also worked closely with previous government and on disastrous Railtrack privatisation under John Major

    By David Rose

    Last updated at 11:55 AM on 12th February 2012

    Comments (110) Share

    For a busy civil servant, the trip must have felt like a well-earned perk. Last June, David Bennett, the head of NHS regulator Monitor, flew business class to New York, where he stayed at a five-star hotel and attended a lavish banquet, all paid for by McKinsey and Company, the international management consultants.
    In total, he would admit later in an official declaration, the two-day freebie was worth ‘approximately’ £6,200."

    Read more:

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  • its really sad to read the above - a 3 month wait for an OT assessment; i'm guessing this must be the OT from social services; as for the community OT teams there should not be more than a 2-3 week wait for priority 2 referals...its really sad and its reason why i get so frustrated working for the nhs...

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