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'I needed to look after myself too' - Bernard's Story

Has Wimbledon been on already?

That question stunned 5 people into silence!
It came from my wife, Mary, when a visiting cousin asked her if she had enjoyed Wimbledon (just after it finished), a question he asked every year, as she was the only other person in the family, to be obsessed with tennis. She had watched every match over the two weeks.

To this day I am not sure which had the greater impact on me, her answer or the stunned silence.

Our GP did some cognitive tests and told us Mary had “significant short term memory loss”, probably due to dementia, he arranged for her to be seen by the Memory Clinic.

In November we got a phone call stating “there has been a cancellation, could we come in straight away”, which we did. She had more tests which a panel of Doctors and nurses reviewed – they asked for a CT scan of her brain.

That was done in December and at the end of January 2018 Mary was formally diagnosed as having early stage Alzheimer’s.

Six months later she developed shaking and the diagnosis was changed to Parkinsons as the underlying problem!

That meant nothing to me, at that point. I didn’t know anything about Parkinsons and very little about Alzheimers.

They asked if there was anything we wanted to know?
That was a useless question at that point, because we didn’t know what to ask… they gave us a lot of printed information, all of which was probably useful – but was overwhelming.

  • Going through my brain was the guilt of not having spotted the dementia earlier!
  • Wondering was she able to stay at home?
  •  For how long?
  •  Would she die? And when?
  • How bad could it get?
  • What help is there?
  • How would we manage?

By the time I knew what my questions were, I couldn’t find the booklets – they had been buried in mountains of “useful” information issued by other groups and charities.

My hardest task was to figure out what Mary could still do safely. I wanted her to be as independent as possible, but also to be safe. Mary already suffered with Diabetes (Type 2 since 1975), incontinence problems, and was undergoing therapy for falls prevention. The risks for me to manage were increasing dramatically and with no additional training in my caring role.

After diagnosis we had a visit from an Occupational Therapist, who organised extra hand rails, and through Telecare, various monitored alarms to provide a degree of security should Mary fall or leave things like the cooker turned on, or leave a tap running. They also provided door alarms so I would know if she went out.

We also had visits from various organisations including Alzheimer’s Wales, Dementia Wales, Carers Wales, NEWCIS, and the Red Cross Community Advisor, plus other Carers groups and organisations.

Each did an “assessment” and left lots of duplicated information about the groups that meet in the area, however it was all a blur – nothing seemed to help clarify what changes we needed to make or what “real” help was available!

The only clear message was that I needed to look after myself and continue to have an independent life, to go out and enjoy myself without feeling guilty about it. (Easier said than done!). Also get “Lasting Power of Attorney” for “Health & Welfare” & “Property & Financial Affairs” also update our Wills.

One thing I found, was Rhuddlan Dementia Friendly’s “Memory Music” which met once a fortnight and sang songs going back to the 1920’s, we went along and both of us enjoyed singing songs from our youth. At one of these sessions T.I.D.E. (Together Everyday in Dementia) did a presentation and I joined the organisation. They taught me how to put together a speech such as this one. Have kept me involved and active throughout the lockdown and have been very supportive.

Due to the volumes of unread leaflets I had, I do wonder if anyone had ever organised any co-ordination with the other bodies to list what information newly diagnosed Dementia patients and their carers actually needed and when?

In our case we quickly got swamped with literature – most of which went unread – we needed something simple, well labelled with an index – probably in a single file or book.

Amongst the organisations was NEWCIS, who did encourage me to come to their Carers Meetings once a month. That allowed me to mix with people looking after a close family member in various stages of care.
They also put me in touch with a solicitor (to amend Wills and arrange Lasting Power of Attortney’s), a benefits adjudicator (Citizens Advice Bureau) to sort out “Benefits”.

There were also talks from many of the organisations that had already visited us, but by this time I was beginning to have a vague idea of what help we actually needed and what questions to ask! The only question now was finding all the leaflets, probably lying in a drawer or in a pile or perhaps, by now, recycled. I am still looking!

In August 2018, I went to Chester with a friend and I collapsed on a bench.

I later learned that: fortunately, my friend was talking to a lady, who turned out to be a first-aid instructor! – she saw me slump on the bench, realised something was very wrong; she checked for a pulse and didn’t find one!

She stopped another passer-by, as it happened also a first-aid trainer! and they got me down onto the pavement where they gave me CPR, eventually getting my heart working again. I came too, just as an ambulance arrived.

I was taken to hospital and after some investigation it was determined I had had a rare allergic reaction to my long term Diabetes Medication. (I had been taking for over 5 years) the reaction had lowered my blood pressure to a dangerous level – causing a migraine. Taking a migraine tablet dropped my blood pressure even further causing my body to shut down!

Then came the problem – I had, I thought, put in place an emergency plan, but it transpired none of the “plan” could be implemented! Who would look after Mary?

The Ward sister eventually got hold of our son, who lives in Staffordshire but was working in Yorkshire and he was able to come over and take over the caring role – it took him a few hours to get there, and lots of phone calls, because he didn’t know any of the routines, where anything was kept, or what to do – it was scary for everyone.

Had I died in the street in Chester, Mary, would have been left alone, unfed and very frightened, and nobody would know – she could not phone anyone, she isn’t able to master that skill now.

The next evening I was released from hospital and came home.

I completed the “Emergency Carers Card” through NEWCIS and spoke with Social Services to get a plan registered only to discover that as far as they were concerned “they can only act in an emergency” (if there is no living relative to step in, or a pre-arranged care plan), and that if there is a plan in place, they cannot act as the plan removes the event from their definition of what constitutes an emergency!

Over two years later I am still trying to sort out an emergency plan …. That could be activated. Mary has fallen twice this year both times needing an Ambulance to get up again.

Mary is registered with Social Services but only for Falls Prevention. Apparently that means we cannot contact other sections of Social Services except in an emergency. I need to get a “Carers Needs Assessment” done by Social Services!

I had asked for this early on in the process and a charity had carried out what it called the “Carers Needs Assessment”!

I have since learned it was not a Social Services or Council Assessment but one for their records. The terminology is so confusing and it is a maze to navigate.

So you can see how dementia appeared in my life, without any warning!

It has changed our lives, dramatically.
We know we can fool ourselves into thinking we are ready for anything … only to discover we aren’t!

Presently Mary is not able to operate the cooker or to safely carry anything hot from the kitchen to the table. She isn’t able to administer her own medication. I make up plastic trays with the relevant daily medicine. And try to watch that she takes the correct medication at the correct time. Mary can do less of the things she used to enjoy, each week. She sleeps most of the day and night, making it difficult for me to go out and get some respite. If I leave her a cold meal in the fridge it will still be there when I get back, because “she couldn’t find the fridge”.

I hope that you will all go away aware of two things: Firstly: the overload and duplication of information across the various bodies and that you will, if you can, try to get all the bodies involved to work together to produce a single information pack, probably saving each organisation a fortune in printing costs, but also providing a single file that the carers and cared for will keep and use!

Secondly: I also hope you will all understand that I am not medically trained but, I am an expert on my wife and her condition (at least how it is affecting her and myself) – that it why it is so important that the carer is involved in planning any care for the person living with dementia – especially when they cannot truly and clearly speak for themselves.

By the time I knew what my questions were, I couldn’t find the booklets – they had been buried in mountains of “useful” information issued by other groups and charities.

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