Guilt is the next feeling, guilt that here we are at home, no worries about leaving dad alone, no worries about watching someone 24/7. A peculiar relief but every unoccupied moment makes you wonder what Mum is up to in hospital and how she is feeling. The report from the hospital this morning is that they had a rough time with her yesterday but they are amazed at her personality; going around and telling all the patients that they will be better soon. She ran down the corridor looking for 2 babies (a frequent task) and had a fall hitting her head on the corner of a table. We have been advised not to visit for a few days to unsettle her, so we are hanging back at present savouring the rest. I personally am not sure if I can visit in the hospital. I have such negative feelings about the place...it should be a soft environment with separate wards perhaps mirroring the local home by being built on a quadrant so patients can walk around and around to stop the feelings of being trapped.

As I think of the events of the past week I begin to shudder. I had to go to the Drs to get a sick note so I could devote all my time to Mum and Dad, things were deteriorating fast and my Dad was no longer coping. I began to get more and more text messages from Dad, as Mum was in bad moods with him and he needed someone to deflect the situation. Mum was slowly destroying the lovely home they had furnished, cherished and kept so beautifully clean and tidy. Mum was finding a colossal strength from somewhere being able to move large pieces of furniture.

Mum began to have times when she would push, shove my Dad and the situation became dangerous. In the middle of the week Mum tried hitting Dad around and these 'attacks' became more frequent. The one day I went to work, Dad called the GP thinking they could sedate her, but a change of medication was the only help and a quiet word about putting her in a home, also the impression was given not to phone again. Where are the days of someone really caring gone? Even if a doctor can do nothing for the 'ill' person surely the carer needs time , counselling and compassion.I think during this week the only person who took time out to really stop and talk was a local nurse who called to give Mum a Vitmin B12 injection. He took time to listen to me, tell me that we had some tough decisions to make. If he should ever read this I hope he recognises himself and realises that it is people like him that do leave a lasting impression of caring. the extra time he took is so appreciated.
I was adamant that I could overcome this demon and I would look after her at home, so from the middle of the week ,I spent 24 hours with Dad to protect, deflect and try to calm the situation. Neither of us were quite ready to let go.

After the local GP's were called 3 days on the trot they basically said not to call them anymore as there was nothing they could do, phonecalls from the Consultant psychatrist urged us to put her back in the secure unit at hospital but both Dad and I hated the place, as both men and women who have lost their inhibitions wandered in each others bedrooms with not enough staff to monitor the situation (the reason why we had withdrawn her once before). Our hearts were slowly being broken and our options very limited. Thursday brought a breakthrough, we had (with advice) changed medication to try to stabilise Mums moods.....withdrawing diazapan and increasing quitiepine and we had a good day. A phonecall from the Consultant said that she had secured a weeks respite at a local home (renowned for helping dementia patients), we discussed it with Mum, tried to get her to understand we were just looking at day care or for one weeks holiday to give dad a rest. We were never sure how much Mum understood by now, as her words were jumbled and she seemed to use rhyming words. She was increasingly frustrated at reacting to conversation and you had to show her the the item that you were talking about. Tears in my eyes became a freqent occurence.

We looked aound 'the White House' and had a really good afternoon, Mum became animated , hugged the staff and took to some of the patients . The home is built on a quadrant , ideal for dementia patients because they can walk around and around with access to an outdoor quadrant which gives them freedom but safety within a controlled environment. Mum had a great time , the only moments of shuddering were by the locked door. Any difficulties Mum had had were to do with locked doors and I think I would find the same problem to be denied my freedom in life.

Anyhow we went home, Dad excited at the prospect of a rest, me dubious that it was going to work, thinking that Mum needed to go to day care first to build her confidence, then go for a week. When we went home Mum said adamantly that it was a nice place but she was not going there, not yet. She was clearly able to communicate this. that night she told Dad she was frightened of being locked up, so would I be and I am sure any reader too. Dad cancelled the place, we reassured her that she did not need to go, gritted our teeth and decided to carry on caring for Mum, even if it was taking 2 people 24 hours care each. The blessing was that she was sleeping at night, so we did get some rest although I have to say that like tonight when I am writing this , I would wake and think about how we would go on, praying that Mum would have a heart attack and die in my arms at home.

That night was the beginning of the end of home care for the moment, Mum became more violent towards us , pushing, shoving , hitting us until we just had to hold her and restrain her, for her benefit and ours. The sounds of her screaming 'Mum' Mum' help me mum, will haunt me for ever.Sadly I will remember the horrid things she said, vile names she called me, the taunting, the rambling life history and the way she pinched and dug her nails deep into my skin. Not my Mum who would be mortified at hurting anyone she loved. She loved her children, her grandchildren and her 2 great grandchildren, they were her life.
Dad and I both said to each other that night that we would see how mum woke but we could do no more for her- she had pushed dad at one point , he fell and tumbled hitting his head, at that point I knew that I had to consider dad and let her go. I had done all I physically could and the words of a dear friend of mine came flooding back 'there may come a time when you can't look after her, but you will know when this time comes'. I knew we had reached that point. I had to let go.
Saturday morning arrived and Mum woke up angry, she pushed , shoved and was not pleasant. At 6am I woke my eldest daughter who had come home for the weekend to try to deflect the situation. She came in with her bunch of flowers . Mum loves her dearly and would usually have hugged, cried , talked to her, listened to her but instead she had a shoe thrown at her. Mum had an hour long outburst , 3 people had to hold her for her own safety. Dad phoned the hospital, arranged transport with a very heavy heat but knowing there was no other option. My son was helping by now also, so Dad could be free to make phonecalls. When the ambulance arrived I could not watch, so my eldest two children stayed, not easy for them watching their darling Nan going to hospital but I was so proud of them. Jono went in the ambulance, with Dad and took Nan to the ward. What a brick. They texted when they were ready and slipped out quietly. Mum was happy having a cup of tea with her assigned nurse and seemed certaily happier than at home. We could do no more for the moment.
My husband went to pick them up , we all went out for a meal , talked about the days events which is always theraputic, shopped for food then went to bed for rest. Except that now I couldn't sleep, so this is my therapy writing the story. I still have a heavy heart , a gutted feeling and a belief that if mum had died physically , this would be easier but she hasn't, her pesonality had died but physically she is still there, still in torment, not living any quality of life reiterating to me that I must enjoy every day and do what I can while I can. I do not worry about Mum dying because I believe she has trusted God in her life and will trust him in her death and will be at peace with him , away from torment.Thank goodness we don't know the future...who would have thought this was going to be her future. What a lottery life is, whether you die of cancer, dementia, or suddenly. I think it is sad when someone dies suddenly but at least there is not this dreadful sufering whether physical or mental.

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.