Sandwich Generation - Carers Story

Published: 06 June, 2016
Sandwich Generation - Carers Story

This week is Carers Week when we celebrate the work of all carers.  I would like to share my experience of being a carer and part of the ‘Sandwich’ generation.  This term was once used and I didn’t really understand it. Now I do. We support our children and our parents and the carer’s role is the bit in the middle!

 

Who is a Carer

A few years ago I attended an event with the Carers Support Service and whilst discussing our various services, one of the ladies said that family so often don’t see themselves as carers.  This is because they are supporting the people they love and as demands of an illness grow, so does the demands of the ‘cared for’ on the family and people around them. Therefore, caring just becomes part of the everyday life and responsibilities.

Mum and I

My mum and I have always spent lots of time together and this increased with the loss of my dad 24 years ago.  Even when I married, my husband, mum and dad continued to holiday and socialise together. I helped out in their business ventures, helped run the football team and club and was involved with whatever charity event was on the horizon for them next.  So our lives have always been completely entwined.  Once I had my own children I would walk every day to mum and dad’s where we would have lunch together and they could enjoy the fun of being grand-parents.

Diagnosis and socialisation

I love numbers and palindromes of dates in particular; so on 21.2.12 I emailed a work colleague at the beginning of the day to let her know today was an ‘occasion’.  Little did I know it would be the date that would be imprinted on my brain forever! A defining day….

At 2pm, I was at work when my phone rang, much to my surprise it was the nurse at our Doctors surgery, who was telling me that my mum had turned up, and was very disorientated and upset. ‘Please can you come?’ she said.  Within a few minutes I arrived to find my mum surrounded by caring professionals at the surgery, mum was utterly confused and talking complete gibberish but when she saw me she just fell into my arms.  Presumably because she recognised me and felt safe, although I find it amazing that she knew to take herself to the Doctors and they didn’t open until 2pm!  An appointment was made for the 20th March for the results to be given to mum and family – unfortunately another date imprinted on my brain, as 20 years ago on that date my beloved dad had died – I was at a Care Plus Group Stakeholder event when my phone rang and my brother said the words I was dreading, ‘Mum has Alzheimer’s’.  Once we had received mum’s diagnosis we quickly adapted in our own ways to dealing with the future and settling mum into a pattern of support.  For me, I wanted to encourage mum to remain active and independent for as long as possible.  This also meant that I wanted to find out as much about Alzheimer’s, from both a supportive and information perspective, to able to support mum in the correct way.   Once the dust had settled, it took me a few weeks, to coax mum to go to a local Memory Café, which was held fortnightly.

Mum and I started attending a local Memory Café on Fridays and over the last 4 years it has been invaluable, not only for support and understanding for mum but also for me.  Carers can relax in the knowledge that everyone understands how things are and that they can share a problem and a solution can be sought.  The sessions are for 2 hours where activities are available for both men and women, entertainers come and sing / dance, there are guest speakers on a variety of subjects and day trips are arranged a couple of times a year for all to attend.  The best thing for mum is to see her socialisation skills improving and she doesn’t feel like she is being judged.  Advisors from Alzheimer’s Society are on hand to discuss concerns and offer the professional support should it be needed.

Mum now defaults to crying.  I have become great at gently deflecting a story away from what may be causing her upset, in order to help the emotion disappear.  Mum sometimes forgets that dad has died, so I have to deal with this from a place where my emotion stays intact.  We find things that she likes, adult colouring books are currently in vogue, there are lots to choose from, so we sit and colour in our own books, with music playing from the days when mum enjoyed dance, rock and roll and country and western music when we can sing along.  We visit people who she talks about.   I no longer tell mum when someone has died as it just brings emotions that are painful.

People are amazed that mum lives on her own but the morning routine has always been good for her.  We are very lucky that we have local carers who live locally and they visit 4 times a day, mostly to check she is eating and drinking and just for her to see a friendly face, thereby, giving us peace of mind whilst we the family are at work.

Education & Information

In my bid to find out more and be able to support mum to the best of my ability I decided to enrol on Carers Information and Support Programme – Part 1 (CRiSP) which was run by Alzheimer’s Society.  It was a 4 week programme of 2 hours and was invaluable.  The first statement made by the facilitator, in her welcome speech was, ‘You will meet 1 person with Alzheimer’s disease and you will meet only one person, as everyone is different’.  Some of the key elements we learnt and took away were; the Bookcase model of memory storage – which made complete sense when it was explained, there was so much financial benefit information along with the factsheets and of course, how this disease will progress.

2 years later I attended the Carers Information and Support Programme – Part 2 (CRiSP).  This was both worrying and informative, not least because as the other 4 ladies who were carers for their husbands shared their stories and solutions I found myself apologising saying ‘my mum isn’t like that yet’ but then I would question myself.  Am I that close that I’m not seeing it?  The sessions were good but we actually learned more from each other, as we talked through local support available and found that we signposted each other to services that others may not be aware of.  As time has moved forward life has evolved into what becomes the ‘norm’ and education is key in understanding mum’s confusion.

You have to enjoy and be part of the stories

Mum has spoken of men visiting her and making themselves comfortable in her living room and as much as it was quite concerning, I quickly realised it was the TV.  If mum stood in her living room doorway she couldn’t see the TV but could hear the voices so wouldn’t go into the room.  She was never worried or frightened herself, she was annoyed they visited her unannounced. 

One Sunday evening, in February, mum telephoned me, please enjoy the entertaining conversation which then took place, as it will always be a ‘Remember When moment for me’:

Mum:    Tracey, what time are the monkeys going back?

Me:        I don’t know mum, I’ll ring the monkey people to find out but give me half an hour as it’ll be feeding time and there is only 1 person working so it may take them a few minutes to answer the phone.  So I’ll ring you back. (I thought mum would have forgotten about them when I called back)

Mum:    OK (mum was quite OK and settled with the answer)

30 mins later

Me:        Hi mum, is everything OK?

Mum:    No, the monkeys are still here, what time are they going home? As they are all looking at me

Me:        I don’t know, I’ll come round

I went round to mum’s and was greeted by mum who was not happy that the monkeys were all sat in her living room and she didn’t have a seat.

Mum:    Well, what time are they coming for them?

Me:        They aren’t. What the monkey people have said is that “the monkeys obviously feel comfortable with you, so the chances are they will go home if they see or hear me, so we will leave the back door open and I’ll look in each room, then you follow me to check that they are gone.

Mum:    Ok that seems fine

So off we set to look in each room, me followed by mum, exclaiming each time, ‘yes they aren’t in here now!’  Once back in the kitchen, mum was happy that they had all gone, so we could close the door and enjoy a cup of tea.

The next Sunday I received a similar phone call at the same time, so advised her to open the back door for 5 minutes as it was still light outside and the monkeys would make their own way home.  Mum rang back a few minutes later to confirm that they had gone.  I checked the channels on TV and realised that she would have been watching a wildlife programme.

It is clear that mum is influenced by things around her like news stories, certain TV programmes and snippets of conversation that she hasn’t fully understood but have caused her to worry, be upset and become distressed.

Carers Assessment & Support Aids

A couple of years ago the family decided that a Carer’s Assessment was required, really just to get us on the radar.  This involved a meeting with a support worker, asking questions about mum and me – nothing was identified as being required so I am now contacted annually for a review and provided with updated information.  There are so many benefits attached to the assessment and for the Carers Support Centre being aware that you are there – I would recommend contacting them in advance rather than wait for a crisis to occur.  Whenever I have attended any event in relation to carers, the point is always raised that there is not enough time in a carer’s day to benefit from possibly Complementary Therapy, information or socialisation sessions due to the demands from all areas of our lives.

Admiral Nurses are available to offer emotional and practical support to carers of family members with Alzheimer’s.  I remember the first time I spoke with them and said ‘Mum is constantly upset as she is losing things and then would get herself in such a state when she can’t find it. ‘  I was advised, ‘Try and deflect away from what she has lost and was looking for, as the chances are she will have forgotten what it was’. At the time, I didn’t believe that but as time has passed and the illness has progressed it is very clear that this is the case.

3 years ago I started a diary, as I realised that I would forget what tasks mum had difficulty with and when the difficulty started.  So at the end of each year I note at the back of the diary which task she can no longer manage and what challenges her or causes her most upset, as this illness is a long road and time just passes.  Mum doesn’t have any concept of time, hence the support of the carers, as they help with the structure of the day i.e. breakfast, lunch, mid afternoon and tea time.

I have found many coping mechanisms to support mum

Problem

Solution

 

Payment of bills

Direct Debit payments

No bills = no stress over money

Income of money

Direct into Bank Account

Go to the bank once a week to withdraw money to maintain independence

Losing keys, purse, remote control etc

Key finder – absolute godsend

Saves so much time and frustration for all parties – so it becomes a game of hide and seek (see photo)

Leaving the house in the middle of the night

Door alarm – can be sent to Safe Mode

If mum leaves the house between 7pm and 8am (pre-agreed time) – notification is sent to named family

Chaotic cupboards – causes distress

Labelling of drawers / cupboards

Sounds easy but items are still moved however, once a week we ‘clean’ the drawers out and return things to their normal drawer

Happy times

I absolutely love spending time and being with mum.  We laugh a lot, visit friends and family, reminisce about my childhood, play music, colour in our books, watch TV, bake and enjoy creating new memories. Nowadays when we are out and about mum enjoys watching and talking about the seasons changing and she loves the Rapeseed fields of yellow, as she has always believed that yellow is a happy colour, so when driving around it gives her great joy to see the masses of yellow.  We have shared many holidays, although a lot of them have now disappeared from mum’s memory.

When mum has a particularly stressful time, I’ve learnt the art of slowing life down X 10, so it is almost at a standstill to provide her with calmness and give the impression I have all the time in the world – even at 1.30am when I’ve had a hysterical call, I have had to go to her house to find her in her pyjamas, with clothes on top of them topped with a winter coat and the heating belting out 30°! We sit and drink tea and engage in conversation with amusing anecdotes in order for mum to feel settled, mentally in a happy place before she can return to bed. I call them ‘Remember When times’.

I came across a pocket-sized book ‘Dear Dementia’, Laughter and Tears, it is a training / learning aid, which is packed with illustrations.  It is full of pithy and poignant notes from people with dementia, their carers and loved ones. Mum and I have looked at this book and enjoyed the messages within it and for me it has been good to realise how things can be perceived from mum’s perspective.

Sandwich generation

The role of carer (I don’t really like the term) is one I enjoy, as mum is mum and I feel that I am repaying her for all the love, support, nurturing and help she has given to me throughout my life, which she also gave unconditionally. 

When friends and people we knew first heard that mum had Alzheimer’s, their reaction was one of sorrow ‘I am so sorry’ they said, with sad eyes. I then came across a blog ‘Gift of Alzheimer’s’ and I have embraced the message.  I do see it as a gift that mum has Alzheimer’s, as we are lucky that she has a diagnosis!  Mum has great care, professional advice is available to her, she has regular medication checks.  We have a wonderful relationship (we always did) but now it is full of quality and has a depth of love and feelings which is different due to the amount of time we spend together whilst enjoying some very simple things in life. 

I do acknowledge it is so hard work to juggle everything that is in our life, as I work, have my own family with a new grand-daughter, keep in touch with my friends and socialise, manage my own home, anticipate / identify problems that may cause mum distress and support her every day before and after work and in the middle of the night too but I still believe that the best person to care for someone is the person who loves them.

Website Links

CRiSP - https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1710

Memory Café - https://www.alzheimers.org.uk/

Carer’s Support Service (N E Lincs) - http://www.carerssupportcentre.com/north-east-lincolnshire/

Gift of Alzheimer’s - http://thegiftofalzheimers.com/blog/

Dear Dementia - http://www.careinfo.org/products-page/books/dear-dementia-the-laughter-and-the-tears/

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Written by: Tracey Parkinson

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