Tag Archives: dementia

Gone but never forgotten!

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My ex mother in law Joyce, died yesterday morning. She would have been ninety on June 22nd and for the past few months has been deteriorating with what her G.P. described as  “a touch of Alzheimers,” as well as various other conditions.  She was a poor old thing when she slipped away and my immediate emotion was one of relief, no-one wants to see another human being linger when they are already struggling.

Joyce and I never shared a close relationship, in fact for two years of our lives we did not see or speak to one another at all and they were two good years for me, for Joyce was always so very critical of me, my lifestyle, my parenting skills, my skills as a housewife. I won`t list here the many, many times she undermined me and whittled away at my confidence because she is gone now and it was all so very long ago. Instead, I`d like to comment on the few occasions she made me smile and try to sustain those as my enduring memories of her.

We were walking together up Longbridge Lane, we`d been to the local shops for something or other. It was a hot summer day and a wasp started buzzing around my head.  Joyce began to bat her hand around my head in an effort to scare the wasp away. Suddenly she swatted the side of my head so hard, she bounced my glasses off my face and half way across Longbridge Lane. She collapsed in hysterics and laughed about it the whole of the rest of the way home.

Joyce`s little side swipes were always quite obvious to me however, not to innocent bystanders. For example, when I was leaving my marriage for the first time in November 1991 for my Christmas present Joyce gave me a bag which had “Bon Voyage” printed across the front of it.

I was quite a bit older when I started to take Joyce and her sisters Jean and Lillian out for meals from time to time. I don`t know why I felt duty bound to do this for Tony and I had been divorced for a lot of years and I`d had two serious relationships during that time although I did love Jeanie. (Jeanie also died, two weeks` ago and her funeral was just the other day.) I used to call them The Golden Girls and every meal I took them to, panned out in the same way.  They would mooch around for a table and sit down. Lillian would then complain it was “too draughty” and they would move.  Jeanie would then complain it was “too dark” to see the menu so off we`d go again. It was not uncommon to move at least four times before they were in agreement. Then Joyce would be imperious and terribly rude whilst ordering and say things like, “this glass is dirty (it never was) bring me another clean one immediately,” in hindsight she may have been in early dementia for some years and this could quite easily have affected her perceptions but at the time, I recall being deeply embarrassed and the numbers of waiters and waitresses I have apologised to over the years doesn`t bear thinking about.  Then they would bicker, like three silly children, all the way through their meal.

I was with Joyce on Thursday, a day and a half before she died. She was being nursed in a residential home and we all knew she did not have very much longer, she was so terribly frail and had stopped eating altogether. Like many people with dementia, Joyce was repeating a single word over and over again and the word she chose was “please.”

I know she wanted to go home but she was ensconced in her long term memory by then and probably didn`t know where home was. I tried distracting her which didn`t work and in the end I said to her, “You know Joyce you don`t have to say please, you could say another word….”

“Alright,” she said in a tiny little voice, “what word shall I say?”

So I continued and suggested, “well, you could say balloon, or tomato.”

“Or I could say shit.” She said to me.

“You could indeed,” I replied.

So Joycey sat there, like a little bird in her big bed quietly saying “Shit, shit, shit.”

When I left, I kissed her forehead and said, “Goodbye old lady.”  And she gave me a watery smile and I thought, she is still there, she is still Joyce underneath that haze of dementia.

RIP Joyce Inman.

June 22nd 1927 – June 10th 2017

 

 

 

 

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Taking Joyce to a wedding…..

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There was a family wedding recently and as my ex-husband was away that day I was tasked with taking my ex- mother-in-law Joyce, to the event.  Some of you will be familiar with Joyce from previous blogs.
I arrived at her house two hours early so that she would have plenty of time to get ready, she is after all nearly ninety.  It was lunch time so I asked if she would like something to eat since I knew that our sit down meal would not be until 5pm. Joyce refused a snack even though I said several times that she would be hungry and instead she sat and munched a few crisps with a rather miserable expression on her face.  She also complained that her back ached and wouldn`t take any pain killers. Hey ho.
I suggested that we take her wheelchair to the wedding since she is quite unsteady now and when she is walking and if you allow her to, she clasps your wrist with a vice like grip to balance herself.  This really hurts and threatens to topple you over.  She refused the wheelchair and agreed to take her walking stick.  Just as I was ready to leave, she said that she needed the loo and disappeared upstairs for ages and I thought, “we`re going to be late…..”
I was wearing a white jacket and a rather pleasing grey, blue and white jump suit so I looked very nice. Joyce handed me her stick, which incidentally she did not use at all the entire afternoon and grasped my wrist as I tried to lock her front door, which is a bit like locking up Fort Knox.  I happened to glance down at my jacket which is just as well because there was something brown and unpleasant looking smeared on the lapel.  It could only be one of two things, the second being bird pooh so I put Joyce in my car and sighing, I went back inside the house to rinse the lapel through. I knew we were almost certainly going to be late but I didn`t have an alternative.
My jacket dripping wet, I got into my car, Joyce said, “I`ve changed my mind, I want my wheelchair.”  I told her it was hard luck then since we didn`t have the time to lug it into the back of the car and off I drove, so she pulled a face.
Fortunately, when we arrived at the venue everyone was gathered at the bar prior to the main event.  Joyce said that she was hungry, no surprise there but we had to go and take our seats.
The wedding was very sweet and tender and the groom was quite emotional and the bride looked absolutely lovely, so did her maid of honour.  All the men were dressed in tail coats and co-ordinated colours and looked very handsome.  Afterwards we went outside for the photographs.
We had only been outside about two minutes when Joyce told me that she was cold and wanted to go back inside.  We trundled back to sit in the bar and she again said that she was hungry. Someone went to ask the barman if it would be possible to make her a sandwich, which he duly did.  Joyce took one bite and instantly said, “I don`t like this whatever it is (it was beef) it`s horrible, ask him for something else.”  I went back to the barman, who was definitely not a local and apologising for her rude manners I asked him if he would very much mind doing her something else.  I said that if he had any Paraquat in the kitchen, he was most welcome to use it as a sauce.
As I walked back to Joyce I heard the barman calling out to me in a thick, south American accent and a voice that was audible all over the venue,  “Paraquat?  Paraquat?  What is this Paraquat?”  By this time I had rushed back to him and stroking his arm I shushed him saying, “It`s just a joke, just my little joke, take no notice…..”

What is Independent Mental Capacity Advocacy?

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What is Independent Mental Capacity Advocacy?

A day in the life of an IMCA. (Independent Mental Capacity Advocate.)

Ever since I was a child I have awoken at around 5am. I get up with my little dog Alf, we have a cuppa and watch Jeremy Kyle. After my bath, Alfie and I have breakfast, go for a walk and then I drive to the top of my road, to work.

I work for Solihull Action through Advocacy as an Independent Mental Capacity Advocate or an IMCA for short. In the UK, IMCA`s have provided a statutory service since a court ruling in 2014 which has become known as The Cheshire West Case. The legislation arose because of an appeal relating to an individual`s liberty (Mr. P) who since 2009 had been cared for in a supported living situation. He received 24/7 one to one care to manage his idiosyncratic behaviours. He was learning disabled, never on his own and was not free to come and go.

The Court of Appeal stated that this was not a deprivation of liberty, but the judge, Baroness Hale did not agree. She said,

“If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.”

If a person is deprived of their liberty in the UK and requires an IMCA then the referral is called a DoLS or a Deprivation of Liberty Safeguarding.

There are many thousands of people across the UK in situations similar to Mr. P`s. They may have a learning disability, dementia, a brain injury or something else that affects their capacity. All of these people now have a statutory right to their own IMCA to represent them, give them a voice and, if they have no relatives or friends able to do so, make best interest recommendations on their behalf.

IMCA is a very challenging and responsible role. We are called in to safeguard extremely vulnerable individuals who do not have the capacity to make their own decisions, so we take it very seriously. A typical referral would be to visit someone either in hospital. or in a care home and talk to them, to the people around them, their friends and family and find out what they would want to happen if they were able to say. Sometimes the decisions are around accommodation, medical matters, money or care plans and reviews.

We write a report and in all cases of IMCA DoLS,  the report goes to someone called the Decision Maker, who authorises the DoLS and makes everything legal. We have to remain informed and up to date with the law so that we can confidently assist families when they are making tough decisions on behalf of their loved ones.

I absolutely love my job, it brings me huge satisfaction to know that I can help as far as possible to ensure that very vulnerable people are safe, happy, cared for and not being ripped off by any unscrupulous individuals, including sometimes I am sad to say, members of their own family.

If you would like to know more about IMCA, then please contact me on:

helen@solihulladvocacy.org.uk

or: 0121 706 4696