If Your Heart Is In Your Dreams…

I know I said I wouldn’t update here again, but I have some pretty incredible news to share and I thought this would be the best platform to reach the people who have been following mine and Nanny Jean’s story. 

I want to start by saying how well nanny Jean has been doing in the care home, understandably her dementia has increased its hold over her, and she is succumbing more to illnesses, but is still happier than we could have ever hoped.

You may be aware that with the help of Nanny Jean’s input we started this blog, then I turned that into an ebook, well this week we have been able to go one step further and publish Never Knew I Needed as a paperback! It will soon be available on Amazon for people all over the world to buy (I’m looking into getting it translated too) and I will be spamming every social media I have with the link. 

I’m sure nanny Jean would be chuffed to know that something she essentially created has had enough demand to become an actual book, I know I am, so once again thankyou from the very bottom of our hearts for your continued support, we certainly couldn’t have done it without you. 

Who Watches Over You?

The time has come. I will be ending my contributions to this blog. I will leave it open and return occasionally to read comment etc but this will be my last post.

I would like to start with a massive Thankyou to everybody who has made this blog as recognised as it is and who has helped me spread awareness of dementia. The support Nanny Jean and I received during our time on this blog really overwhelmed us both, especially with the umber of celebrities who got on board. SO once again Thankyou, for brightening so many of our days. 

It took a while for me to make this decision but I truly felt that after moving to Disney there was not much for me to write about with regards to Nanny Jean and the dementia, I was no longer experiencing the effects with her and it felt false to write too much about what I was hearing second hand. 

It was with a very heavy heart this week that mum made the decision to move Nan into a care home (although the choice was more made for her by social services who deem Nanny Jean’s dementia to have progressed to the stage where she may endanger herself by being alone for any given period of time). I think it is safe to say that at first mum and I both felt like we had failed, Nan had always been very vocal about not moving to a home and we did everything we could to prevent it happening. Unfortunately there came a point where I could no longer physically or emotionally carry on being a Carer for Nan, even though I now feel like maybe I could have done more, stayed longer. And mI know mum is also struggling with guilt. 

There was a lot of worry about how Nanny Jean would react once getting to the home, especially with the dementia making things more confusing for her. And of course she has once again proved us all wrong by settling in perfectly. smiling, being described by the Carers as jolly, even venturing out to socialise. She is a completely different person to the one we have ever known, and yes it may only be her second day but it is such a relief. She is making us look like we made up the dementia by being able to navigate her way back to her room with no issues at all. But of course, what else should we have come to expect from Nanny Jean?! I’m certain it has something to do with the newer memories not having been tainted by the dementia yet, thus making her new surroundings seem more familiar than anything else she many have known. 

And so we’ve come to the final chapter, I’m well aware Nanny Jean will be in the care home until her ending comes but if she remains as happy as she is now for at least the most part of it I’m going to find it a much easier scenario to deal with than I first imagined. 
Thankyou Nanny Jean for letting me share your journey with the world, and Thankyou the world for joining us. 

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?

Other News

I will be writing a new post to keep you all updated on Nanny Jean soon, in the meantime check out 

https://kirstyfiction.wordpress.com/chapter-11/ – chapter 11 of my Harry Potter Marauders era fanfic

https://thatmagicmouse.wordpress.com – my castmember blog, working at Disneyland Paris 

Also go to Amazon, search Kirsty Elgar and buy my ebook! 

Time for us to take a chance…

Hey guys 🙂 

It’s here. We are published. I want to be able to donate a healthy sum of the profits to dementia uk and Alzheimers society, so that means you gotta buy it. Reasons why:

1) you’d be donating to charity 

2) you’d be making nan and I feel great

3) you’ll have something to read before bed, on the loo, at work…

4) you may learn something to help yourself or a loved one

5) I’m asking really nicely. Please buy it? Please? 

Thankyou 🙂