You may remember that I wrote a blog from a carer’s perspective ‘Sandwich Generation’ to support Carers Week in June 2016, as my mum has Alzheimer’s disease. I was due to go on holiday in June, so my family decided that mum would need to be placed in a care home for the time I was away. I had spoken with the manager to enquire if mum could hoover her bedroom and clean her bathroom, as these are daily tasks. I was advised that this would not be possible but she could help with the folding of clothes from the tumble drier and dust. I was a little anxious and voiced my concerns about the skills mum may lose in the 2 weeks but understood that mum needed to be safe in our absence.
My family and I visited mum on the afternoon before we left to ensure she was settled. When we arrived mum was in a room, on her own trying to do a puzzle. We all greeted each other happily and she said that she didn’t really know why she was ‘in this place’ but I reassured her it was for her to have a rest and not worry about day to day issues. She had forgotten where her bedroom was, so I asked someone to take us to find her suitcase, still packed, despite being there for 5 hours. We emptied the case and made the room feel more homely with photos, her TV and personal bedding. She was happy. There was a knock at the door, it was a carer who asked what mum wanted for tea. The lady was lovely and very accommodating but not understanding that a person with dementia is unable to answer questions of choice with ease. A taste of the conversation:
Carer: What would you like for tea?
Mum: I don’t know, what have you got? (mum asked with eagerness)
Carer: Anything you want
Mum: Sandwich? (Mum knows this is a safe option)
Carer: What do you want in it?
Mum: I don’t know (Mum was flummoxed, so I stepped in)
Carer: What do you want for afters?
Oh no I thought here to go again
Mum: Have to got a yoghurt?
Carer: I think so…
Me: Can’t you put a selection of yoghurts and cakes in the middle of the table so the clients can help themselves?
Carer: Oh no we can’t do that…
Mum was feeling insecure as we all would in a new place and situation, although she also seemed settled. I had my worries my daughter reassured me that she would visit regularly in my absence.
Mum was returned home the day before we came home from our holidays and we did expect a very unsettled few days. However, Mum was like a homing pigeon, arriving at our house within an hour of us returning home. She never mentioned that she hadn’t seen us or that we looked well, as people generally do with a little colour from the sunshine, or the chaos of cases around our home. I was pleased this was the case as it meant mum hadn’t missed us.
Over the next few days it became very clear that mum was struggling to function back into her pre-Care Home routine. Mum was now forgetting to lock her back door, probably due to the fact that for 2 weeks she hadn’t had to lock a door. She didn’t understand the concept of ‘paper’ money, as she hadn’t seen money for 2 weeks. She could no longer make a cup of tea unaided or think about changing her bedding or hoovering her home, all things she did and could do previously. Mum started coming to our home more regularly, anytime between 6am and 8am. Sometimes she was distressed and sometime full of the joys of spring. The carers were still supporting mum 4 times a day too.
Generally mum settles after a few days, when her routine has changed i.e. going to stay at my sisters for a couple of days, however, on this occasion mum actually declined further.
I don’t like the term ‘wandering’ as I think it is a negative word. Mum would walk to our house or the shops on a regular basis a number of times a day she knew where she was going. Although she may forget that she had only been an hour earlier, so would do the same route again. It was obvious now that mum was wandering as she was ‘getting lost’ on her way to our house and being taken in and helped by kind hearted village neighbours who would then contact us to let us know where she was. Mum was now crying all the time, she could no longer follow simple instructions i.e. do you want to put you pyjamas on? She had no idea how to do that. She had become increasingly restless, her sleep pattern was disturbed as mum had lost the concept of time of day and she packed a suitcase every day with random clothes. Mum and I shared our love of tennis but it was clear as we watched Wimbledon this year that her concentration levels had clearly diminished as she did not understand how to win a point. Football had also always been a passion she shared with dad, so as we watched and spoke about the teams and games throughout the Euros, it was clear she was struggling to understand. I was finding half eaten meals in random places, she found it difficult to understand that the phone was ringing as she didn’t recognise the sound. However, when mum was in company she came to life and joined in conversations and there was a spark of mum alive again.
I attended the CPG Delivering Outstanding care in an Age of Austerity Conference in July as was very interested in Colin Child’s presentation regarding a client who over a period of time had received a phenomenal number of assessments, which clearly showed that none of the Organisations were communicating with each other. We asked for mum to be assessed as it was clear to me that something had changed, so over the next 10 days mum had 4 assessments. I stood outside the room on one of these occasions when mum told a wonderful story, of how life was and how she was coping, which I kept thinking surely they will see this isn’t true, but I wasn’t convinced they would. So at the end of the meeting, when I joined them in the room, I thrust the diary into the hands of the professional and asked, ‘Would you like to see what life is actually like’. It was read but nothing was reported or changed.
I have found that any meetings with professionals have distressed mum. Whilst I understand she is required to be present, it doesn’t allow family to be honest, as we want to protect her feelings. So we end up talking in a code and ‘hoping’ that the message we are trying to get across makes it. So much information is lost in communication.
The day before the penultimate assessment, it had been a particularly difficult time for mum, as she was holding her head and crying for it to stop. Mum was with us constantly, as she couldn’t bear being on her own, said ‘I think I would be better in a home, so nurses could help me when my head hurts’. When mum is distressed she pulls at her head, like she can claw her brain.
My brother rang me at the end of the meeting with Social Services, outlining the discussions and informed me that it was agreed that mum would now go into a home, as in his view, the impact of supporting mum to remain independent was not sustainable to me and my family. I knew he was right but it didn’t change the fact that I felt like my heart had been ripped out as I was sat at my desk with my manager and friend, providing support, as I tried to stifle my gut wrenching sobs. I know it is the right thing but I truly can’t believe how quickly we have reached this point from diagnosis.
However, I had a light bulb moment when I decided that until we have found somewhere for mum to go, she can come and live at my house. I spoke with my family, as there will clearly be an impact, who wondered why I was even asking! So the plan is sent that I will pick her up at 5pm each evening after work and return her home at 8am each morning, on my way to work. The carers will continue to support mum during the daytime, when she can keep her independence. During the evenings she will be safe, we can have a routine, she can help me make tea, continue with household chores, be surrounded by family who love her and if we decide to go out, mum can come with us. This removes any issues around her safety in the evenings and will give us an opportunity to assess the skills she still has, observe her sleep patterns and finish writing her ‘My Life’ story. My Life is designed to tell mum’s story to people who don’t know her in a story format along with photographs of important people who have been in her life.
The palindrome date of 21.2.12 seems like only yesterday but three and a half years later we start another new chapter in supporting mum as we endeavour to find her the best place she can be and be surrounded by support 24/7 with continued support from the family who love her.
During Dementia Awareness Week I was invited to board the Virtual Dementia Tour Bus and was ill-equipped for the effect it would have on me. It was the most powerful, emotional and informative session I have ever taken part in, whilst also benefiting from the practical advice too. The session gave me an insight into dementia from a very different perspective.
The best piece of advice I would offer is to write a diary of significant changes. If this is the case, contact or speak to a professional, i.e. GP, Memory Service to ask for an assessment if necessary.
Care Plus Group Blog – Sandwich Generation - http://www.careplusgroup.org/blog-articles/sandwich-generation-carers-story
Virtual Dementia Tour - http://www.training2care.co.uk/
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