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DEMENTIA CHALLENGERS

Lisa originally contacted me via my
website to ask for information to help her care for her mother who lives in a fairly remote area of Scotland, a plane journey away from her.  Here’s her story
 
I realised last winter that mum was finding it difficult to take care of herself.  When I paid her a surprise visit because I was in Glasgow for a conference and it was easy to pop onto a train to see her for a couple of days, I was quite shocked by how much things had deteriorated.  It dawned on me mum had been covering up some of her problems during my regular visits.  She’d always insisted we eat out during my visits – I began to realise this was because she was having difficulty in preparing meals.  She told me “I don’t like to cook anymore”, and “I’ll treat us to dinner” and I hadn’t realised she wasn’t cooking meals for herself any longer and was relying on prepared meals she could reheat in the microwave.  She told me the washing machine was broken and when I looked, it was fine but had been turned off at the wall.  She said she’d stopped using the bus because it was unreliable, and I suspected this might have been because she was finding it difficult to understand the timetable.

I returned from my visit feeling very concerned about how best to help mum and at the same time to avoid making her feel she couldn’t look after herself.  During a meeting with my Manager, I told him of my concerns and said I may need to look for a job a little closer to her so that I could give her more support. 


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My Manager was brilliant, he told me that I had rights as a carer and that the     company would support me as much as they could, they didn’t want to lose me.  He told me I was entitled to an assessment by my Local Authority too and they may be able to give me some money or access to other types of support.
I spoke to mum after my visit, and then went back a few weeks later to talk to her about what the problem may be.  It took a lot of courage to suggest she may have memory problems, possibly some type of dementia.  We both cried a lot during the conversation, and eventually we went to see mum’s lovely doctor to ask for some help.  The GP did some tests and sent us for a hospital consultation too, and we discovered mum has Alzheimer’s.  It was a huge shock to us both, and mum got very depressed.  She was put onto some medication, and the doctor also arranged for her to have a call from a care agency every morning, to help her with her meds.

For the past year I’ve visited mum as much as I can and spend most of my holidays with her. We’ve also talked about support from her local council and I’ve arranged for us to meet with them during my December visit this year, and after that I will talk to the council in my area, about what I am entitled to.  The most important things for me are to keep mum safe and happy. So far, mum seems to be coping really well, I’ve arranged for regular deliveries of precooked meals, arranged with a friend of hers to take her out a couple of times a week and another friend who helps mum with the laundry.  Her church have been amazing, they collect her for services and take her home for Sunday lunch before bringing her back late in the afternoon.

My work has been incredibly supportive.  They have given me a laptop so that I can use it if I have to go up to see mum unexpectedly and have time to do some work, though my Manager also reminded me that mum’s welfare should come first.  He also reminded me I can take extra days off if I need to, and our HR person has explained what my rights are as a carer.  This includes being able to call mum or anyone who is supporting her when I am at work, so I can keep my mobile on and answer calls if there is an emergency.
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They have even worked with me to identify some special projects I could do as part of my job, which I could work on during the evenings when I’m with mum and feel I have time to do.  One of these is a guide for other employees in my organisation who are also carers, and includes me putting together a presentation I can give to all the managers about carers and what we are entitled to.  They have also set up a forum for other carers in the company, so we can support each other.  This really helps me to feel less isolated and not a “special case”.
I know this is a short term solution, but it means my skills and knowledge aren’t lost to my organisation and gives me stability – which is really important to me.

To be honest, I am really concerned about the future.  I will probably need to either move closer to mum or have her move in with me at some point.  I don’t have any brothers or sisters who could help out, and am in a fairly new relationship, so it’s not easy for my partner to understand that mum has to come first for now.  I live in a small flat, so it would be a squeeze if mum moved in, so that’s something I need to really think through.
I will find the right solution, in time and with support. At least I am thinking about it and have time to talk to mum about what she wants.  Mum has done so much for me, now it’s my turn to look after her. 


You may want to look at some other pages on my website:
Distance caring; Planning for emergencies; Carers' Assessments;  Employer Support




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