So may days have passed without writing,Lots has happened but I have been too tired to write. A constant strain always being nearby in case Dad needs backup. Treading on eggshells with conversation so Mums mood doesn't change. Her constant desire to go back to Cardiff and her realisation that we go around in circles in the car to appease her. No quality of life, it is horrid to have to listen to her crying and my wonderful Dad who spends every moment of every day tending to her every need, I could write reams but I am deflated and weary. I have never experienced someone so in turmoil in their mind and the only peace will be in death when she will go to be with her Lord, but it frightens me to think of what we must all endure until then / Her body is strong but her mind just eaten away and confused, so few good moments.

Well today was a mixed bag really. I spent awhile with Mum while Dad had a shower, emptied the dishwasher and did a few things. She was fine really holding superficial conversation. I asked dad for the telephone numbers of Mum's Dr and Social Services to try and get him some help. I then went to begin my own housework and rang the above numbers to muster some aid!

My sister then rang to ask me to go in as she felt Dad was having a hard time. Mum had kicked him and got angry. Dad told her that unless she worked with him then she would have to go back to hospital...well this set her off and she cried and cried. i went in and brought her to my house as she was angry with dad.

My daughter gave her a cuddle, made her comfortable on the sofa, she cried and rambled for a while, then got up and said she wanted the toilet, decided she would go back to her house and was in a better frame of mind all day. She napped and slept upstairs for a good part of the day. My daughter and I went shopping, bought some ready meals and some track suit trousers to make life easy, we spent an hour in with mum and dad on our return. It seems to be quiet next door and no phone texts means it is a peaceful evening.

How many people have a dear friend who will give up their precious time to help others?, well I have. While I escaped to work she came and sat with Mum. All went well and enabled my Dad to have a bit of free time. He then went to the local shop to get a few things and to escape his 'prison' promising to be five minutes only. Just two minutes after he had left Mum's mood changed and she ran to the front door. My dear friend managed to pivot herself between Mum and the door but she suffered abuse during this time.
When Dad returned he was mortified to see Mum hit this kind generous person across the face. After much cajoling they managed to return her to the room and eventually to sleep, which then caused a reverse mood of crying (what thoughts go on inside , we will never know...what causes someone to become so aggressive..perhaps the frustration of no longer being able to hold a meaningful conversation..perhaps the frustration of no longer being able to decide where and what you want to do, perhaps returning to child like ways...so many unanswered questions, so many unknowns.
I returned at the end of the day and sat with Mum and Dad for an hour with a cup of tea. Mum was trying to talk to me , with the intonation of questions but undecipherable, so I had to steer the conversation probably fuelling her thoughts that I was treating her like a child, a comment thrown at me many times in her more lucid times. She was tired by this time and wanted me to go..that was quite clear...'it's time you went now!' again the total opposite to Mum's personality, she loves her family and hates it when you leave.....usually!

Tuesday night, well it's ok for me, I can go out enjoy myself but poor Dad tends to every want and need and will not take a break. My youngest daughter still lives at home (17) and is just wonderful with Mum, tonight while I escaped for my therapy playing bells, she spent an hour with her Nan. Mum thought her brother had died and so a phonecall and a chat eased her mind until tomorrow or the next time when she will have the same thoughts. All seems quiet and peaceful next door hopefully indicating a quiet night. My mobile is always besides me so Dad can send a text if he needs help. Occasionally he will just bang on the adjoining door of our/his ensuite.

Just a few moments later and Dad arrives to ask me to pick up a prescription for Mum. The tablets cause her to be itchy, so another one to take ...antihistamine! Now Mum is weepy again, so the walk is off, although I think the change may do her good but dad says...'leave it for now'. Just to make you aware of the changing moods .

Well another day, what a difference. Perhaps an improvement because of the vitamin B injections that Mum needs to have, or maybe just because! A few minutes sat on her doorstep watching the chickens and the ducks feeding them bread as she always used to do before this last severe stage. Then Mum came into my house for a cup of coffee, wanting toast also, devouring a Kit Kat. A marked contrast to 2 weeks ago when she didn't want t o eat ,particularly anything sweet.
Mum and Dad live in an annexe next to our house, they have completely separate living accommodation and over the past year dad has taken over all their cooking and household chores. Not bad for an 80 year old. I do help top up his shopping with ready made marks and spencer meals but he has become quite a connoisseur of cooking sauces!
We talked about going for a walk around to the local shop to get a paper but Mum was worried that I was going to take her on a boat and so changed her mind and didn't want t o come. Will try again later. It seems that this illness became noticeable in Sept 2008 after going on a cruise to the Norwegian Fiord's. A brief spell in hospital followed a 'passing out' not unconscious, aware of what was said around her but not responding to anyone.Various tests followed ...perhaps a small stroke or TIA it was thought, perhaps vascular dementia but as time has passed it is thought that it is Lewy Body dementia.

Who would have thought a year ago, that my beautiful Mum would be unable to enjoy her life and be a prisoner within her own body and house. Who would have thought it was possible for someone who loved going out, spending money on other people to become the complete reverse. Life has to end for everyone but this is a cruel disease when you see someone you love deteriorating slowly and becoming the reverse of her personality. A morning spent crying but then the mood can change , wanting to go back to live at her place of birth and yet even there she would be in turmoil and wanting to be elsewhere...what cruel torment.
Any upsides? Well seeing moments of joy as she hugs her granddaughter as if she hasn't seen her for years, having a chuckle as a foster son runs in with a 'hi nanny!' but these moments are few and far between.

Just two weeks ago she was taken into a psychiatric ward as she became out of control with her actions and needed to be reassessed with medication. This became a living nightmare when the ward contacted a bug and we were unable to visit for 10 days. How did she feel? did the feelings of abandonment speed up the decline? Did the environment with so many characters with similar problems contribute too, who knows but we cannot go back in time. All I know is that there are so many people in similar circumstances but with no family to visit or care but my Dad and I have decided to do the best we can and make her remaining time with us as pleasant and comfortable as we can. Dad, well he has the patience of a saint and treats her like a queen. We are both learning to distract and ignore the horrid words of the illness but at times it is hard.