The long Goodbye

The darkness descends

I remember not too much changing when nan first was diagnosed with dementia it was just the whole thing of everybody coming to terms with the diagnosis and trying as best we could to maintain some sort of normality and to try and get on with our lives as as we had done before we got the life changing news.

We all went about our business and still visited nan as we always had and if nan was scared she certainly never showed it outwardly but I'm sure inside she must of been "terrified",she had been witness to her father's deterioration with the same disease so I know she knew what the outcome would be,it was only little things I'd notice at the time like misplacing her purse or not being able to find something else just absent minded...........

How I wish it would of just stayed like that but it really was going to get so much worse and myself and my family had no idea just how "devastating" and soul destroying the next few months and few years would actually be,I never thought that some members of my family would back off a little or be unable to cope with the situation,they Just couldn't handle seeing my nan the way she was but I knew I could never walk away or turn my back how could I turn my back on this lady who had been such a driving force in my life?this lady who treated me Like her own daughter and was there for me no matter what,no I would be with her until the end come what may.

I was fine mentally and physically I could cope with this......I could do this!,I have cared for people with dementia so I was more than prepared...........or so I thought.............nothing let me tell you nothing ever prepares you for what I had to face......what I had to see,I could not walk around with a blindfold on my eyes I had to face this disease head on there was no running away from this,it was there when I entered my nans home it was there when I left her home and I brought it home with me.......I took on this darkness it was following me everywhere I went, my every thought was this disease and all I ever had in my head was my nans innocent little face.

I just could not shake it but I put a front on as best I could because this was about my nan not me,I had to be strong and show no weakness because I knew if I let My emotions slip even Just one time I've had it because then the dam will break and I'll start to cry and I'll never be able to stop so then what good am I to her then?she needs strong people around her so put an act on I did and I smiled and laughed whilst at my nans home but as soon as I got home I would dwell on it and think about the things I saw or heard whilst at my nans trying to come to terms with the ever changing person in front of me losing herself little by little every single day.

Things were changing day by day though and the deterioration was plain to see,the first year or two was difficult but bearable I kept telling myself I had seen much worse and worked with much more extreme cases,I think at that time the most frustrating and noticeable thing in my uncles opinion was the constant repeating herself and asking the same questions,now I was use to this it didn't phase me but he wasn't used to it he had no experience of it so he definitely got frustrated and at times didn't answer her repeated questions in a manner I wish he would of,sometimes he wasn't as patient as he could of been but I had to remind myself he was my nans main carer so once we had all gone home he had to deal with it on his own.

I think the one occasion that hit home with all of us was when my nan stopped going in the kitchen,I think that's when I knew this disease had upped it's game and it was starting to get a real grip on her
Now my nan spent nearly all day everyday in that kitchen from as long as I can remember,she was always cooking in there or washing the dishes,it was the heart of the home and she was rarely sat in the lounge except for night time,so this one day she went into the kitchen and she had Been fine previously going into the kitchen as we knew she still had to have some independance because you take that away then she will give up so we knew we must never do that unless we see it's a risk to nans safety so this day off she popped into the kitchen with her empty cup,we heard a little yelp and we ran into the kitchen...........

Nan had the hot water tap running,she had decided to wash her hands and used the hot water tap when ordinarily she would always use the cold water tap (always)so she had let it run for a while and must of just gone into a bit of a daze then realised ouch this is hot,and it wasn't just that it was other things too so it was decided it's best she doesn't go in the kitchen anymore which was really going to bother her alot because she still liked to wash the dishes and make a cup of tea things she had enjoyed doing all her life,I remember one day she said to me "they won't let me go in the kitchen anymore"(meaning my aunty and uncle)I had to sympathise with her of course without sort of saying "well you Cant go in there nan for your own safety"as she would of got so upset.

I always found myself having to think on my feet with this wretched disease,I always had to think of an answer really quickly and make it sound convincing when nan asked me a question as to why she could not do this or that anymore I hated not being completely honest with her because I never lied to her in my entire life but for her own good I had to stretch the truth sometimes so as to not upset her too much,I had to make her think things were not changing as quickly as they actually were I didn't want her to be scared so the majority of my time was spent reassuring her everything will be fine and she has no need to worry and I especially had to make sure I did this before I went home or I'd never settle or sleep for that matter I had to know she was fine before I left for my own piece of mind.

It was a constant juggling act to be honest,it's not just about the caring for the person physically as in helping them with day to day things it's the knowing what to say......how to answer a question they may have properly without causing too much distress,I Just tried to make her happy and make sure she had a laugh and keep her calm because she had started to become weepy at times and my nan wasn't one for crying but this is how she became over time the slightest thing she would cry,and it started to be like when you would have to reassure a frightened child?only this person wasnt a child she was my grandmother and it broke my heart........

This lady that was once so strong is now sat next to me looking at me like a lost child those big eyes looking up at me those big eyes pleading with me and she is holding my hand holding my hand as a child would hang on to there mothers hand for dear life and I always had to know what to say,but all I wanted to do was wrap my arms around her and just rock her and cry my eyes out and say "nan it's ok it will all be okay"but I couldn't I had to stay strong and strong I did stay and I'm glad I did because I would never of got through the coming days or weeks or months and years and oh boy I'd need that strength in bucket loads I'd really need it like my life depended on it...............