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An Open Letter

Let me preface this letter by declaring first of all that I in no way consider myself an expert of dementia, I do however consider myself an expert on my nan, a subject which has inspired this letter. I cared for my nan for three years, learning along the way about dementia and the various effects it can have on the relatives as well as the person diagnosed. This letter is addressed to anyone who has experienced dementia whether first or second hand, but mostly to the care companies who are supposed to be aiding those living with dementia. 

My mum rang me in tears today, she has just returned from a well deserved holiday and left nan’s care needs with a company who had seemed so promising at first. But to find out that they “forgot” about a morning call that they have been doing for several weeks and left nan in bed; unable to get herself up, dressed, fed or watered is the last straw. She had been left with no food or water for close to twelve hours. She has various problems with her kidneys and liver and needs frequent fluids to help them function properly. Never mind how helpless she would have been feeling with no idea how to get herself up. 

This is not the first time the care company has been negligent.Mum has had to prompt them several times to stay for the time we pay for. Nan may well say they can leave after fifteen to twenty minutes,but as we are paying for half an hour visits, and she doesn’t get leave the house, wouldn’t it be courteous to stay for the time allotted , and maybe just talk to her? 

Mum has been so discouraged by their attitude that she has threatened to involve the CQC. Because mum doesn’t just think of Nanny Jean, she is worried, like myself, for those who have no families or relatives to monitor the “care”. This turned out to be too much for the company however who have promptly given us two weeks notice to find alternate arrangements for Nanny Jean’s care, stating that they work with the CQC every day so basically they know more than us. 

This is not the first care company we have had problems with, from missed calls, rude attitudes, Carers who sit on their phones and ignore nan…I don’t think we’re asking too much but it would seem from our experiences that no care company in the area is equipped to cope with caring. Let’s not forget the companies who have little to experience with dementia, and will take nan at her word that she is able to cook for herself, and subsequently leave her with nothing to eat for hours, despite having been briefed about the effects of dementia before the calls. 

I know we are not the only people who have struggled to find a care company that fits in with the carees needs, and the families too. And I know that not all care companies are as unreliable and negligent as the ones we have used. I also know that the Carers within the companies can vary greatly, it is unfortunate that the better ones  should get tarred with same brush as the Carers, and managers who care very little. 

I have worked for a care company that can cope with the needs of dementia, but unfortunately they do not cover nan’s area and so now mum is left with having to think about moving nan into residential care. Something that nan has never wanted, and that we never wanted for her. I think we’ve done well to get this far though, nan has been able to live in her own home for much longer than anyone could have predicted, and she has been really happy as a result. 

I am left with two questions;

1) why did most of the care fall to me and my mum? – we are paying external companies to assist with nan’s day to day living and yet when I lived there I still felt the need to get involved and give pointers and helpers to the Carers who were unsure how to react in some situations, and just plain clueless in others. And mum still feels the need to check in on nan two or three times a day.In many ways this money feels wasted, as we ended up doing most of the work for the Carers anyway, because we couldn’t trust that they knew what was best for nan. And it’s not just us being overprotective, or expecting too much. Basic care needs are not being met because care companies are not being given adequate training on the various types of dementia. 

2) why is nan now going to have to sell her home to pay for care that could have and should have be engiven to her in her own home where she is more comfortable and relaxed? And why do we feel so guilty about doing something that is better for her than current arrangements?

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4 thoughts on “An Open Letter

  1. Pingback: An Open Letter – kirstyfiction

  2. Well I’m going to be spending a lot of time reading through your blog! Came across your blog literally through pure chance finding this post added on my 30th Birthday…6 weeks after my amazing nanny/mummy who raised me from 6months passed away from Alzheimer’s. Iv a sneaky feeling from what Iv managed to read so far that we have shared exactly the same experiences and it’s so comforting (joint anguish) to know that there are lots of us out there! Keep up your amazing work ๐Ÿ™‚

    • Hi Leanne!

      Thankyou so much for your kind comments, and taking the time to read so many posts!
      I’m sorry to hear you too have experienced dementia, but I agree it is reassuring to find others with similar experiences so I’m glad that this blog has helped in whatever small way ๐Ÿ™‚

  3. Yes, I remember going to check on my mom, and found her in tears, because the home-aide had been yelling at her and calling her “stupid and dumb”. Shame shame shame

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