Sunday 14 February 2010

Well each good day turns into a good week and it seems hard to remember the days when the GP's told us to put Mum in a home, as she would never be the same person. All I can say is ...never give up, fight to have your loved one home and ask for all the help you can get. Mum has improved so much she does not have or need daily care. She is contended, manageable and like her old self. We are grateful for all the help we have had but encourage others to ask for assessment and alternative drugs.

Wednesday 20 January 2010

The outcome of the meeting was positive and Mum came home yesterday.Dad and I were apprehensive as to how it would go but so far so great. As my daughter commented 'it is like having the old Nan back'. I never believed that I would ever see her functioning as she is now, she is able to reason things out, seems to remember past and present, all I can say is 'Memantine is a wonder drug.' It obviously does not suit every patient but for Mum it is fantastic....so far anyhow. We do have an agency to come in and help Mum get dressed in the morning- which gives my Dad just a short while to get washed and shaved. Mum just needs guidance to put on clothes in the right order and a day a week has been arranged at a day centre (although they have a bug at present.) Other ideas have been put forward to give Dad a break but for the moment it is one step at a time.
Mum even went to the home of a hairdresser to have her hair permed yesterday...before she went to hospital she was too fearful to go anywhere.She was quite good in hospital but just before her release she ha the memantine upped to 10g instead of 5g that seems to have made a world of difference again. She still has quitiepine also. Well we will see what happens as they say watch this space!

Sunday 10 January 2010

I can't believe it is the 10th January today. Mum has been progressing over the last few weeks, she has been able to recall events and express her opinions. A meeting has been organised for Wednesday to discuss her homecoming. She has been saying for 3 weeks that she is coming out on 13th (date of meeting) but fortunately she has changed it to the 15th. I say fortunately because dad has to go into hospital for a minor op on Tuesday, hence I have to atend the meeting Wednesday ......and don't really want Mum thinking she can come home with me! Lets hope all goes smoothly and she is able to come out Friday. It will be hard work but so is travelling to Gosport daily especially when the roads are full of snow.
Dad and I are apprehensive, hoping that we can deal with Mum in the expert way the staff can, but the worst thing that can happen is that we can't cope and have to ask for help again.
A busy and eventful week.

Friday 1 January 2010

Christmas day was really good, Mum looked beautiful as her care assistant had washed and styled her hair. It had obviously made her feel so good also. My Dad was taken in to the hospital around 11 am by my three daughters who took some presents for Mum to open. They all stayed a while and then left Dad for the day to have Christmas dinner with Mum. The hospital staff were most kind and even set up a separate table for Mum and dad so they could enjoy dinner together. We carried on with Christmas at home and then my whole family (6 of us ) visited the hospital around 5pm armed with our presents for Mum. She was brilliant and even joined in a happy family card game! We took over the lounge but it was a really positive visit and highlighted that Mum was nearly ready to come home.
Over the next few days Mum expressed her wish to come home and frustration at being left in hospital. She has become more lucid, more aware of where she is, blaming my dad for leaving her there. When we discussed coming home she said that she would miss her new family. I suggested that Dad bring her back to visit everyone and that seemed to be accepted. When we talked it over with the sister she said Mum could come home for the day initially if that would be best but we feel that once Mum is out through those doors she will not want to come back!
When I left the ward today Mum came to the doors and said goodbye nicely, in the past she would have created a fuss. She seems happy that arrangements are in hand for her to come home. She asks questions about home, asking dad if she is coming home to her house or 'Gill's. Sometimes I think she has her childhood home in her mind.

Saturday 19 December 2009

Well it is a while since I have written just because life is so full, visiting the hospital daily with all the daily happenings of my own family in addition. Last week my father was also taken into a different hospital and so I had to visit Mum then travel on to see my Dad in the opposite direction. My whole life seems to be taken over. Christmas is one week away but I have barely organised anything. My eldest daughter moved into a new flat, I was unable to share her joy as I had to transport Dad to visit Mum as he had just come out of hospital himself!

So, how has Mum been.....the first few weeks in hospital she had aggressive outbursts daily and was manic, wandering and unsettled. We were invited to a ward meeting where the drugs she was on were outlined and her future use of them. Occasionally feedback is given after ward round on Wednesdays and as my Dad was unwell it was given to me last week. Just slightly worrying that the doctor seems to not be following the pattern of the agreed dosage. e.g. at the meeting it was said that quitiepine would be reduced and yet it seems to be increased. Sleeping tablets have been now become routine. Slightly worrying for me as my aims are not to have Mum asleep in a chair all day,staff comments are always that it is nice to see her settled (when she is in one place in a chair)...quality of the life she has is my aim.

Yesterday was a bit unsettling. dad had been in hospital for 3 days and so unable to visit (although I had done so each day) so whether Mums reaction was because she hadn't seen him or because she has increased thinking power on the new drug I am not sure. Mum was not happy to see me because the previous day when my sister and I had called she was cross with us because 'we could not even give her 10 minutes to take her in the car to home'. I was a witch and I was not taking Dad home without her. She took my car keys out of my bag and became verbally aggressive . She clearly wanted to get out of hospital and go home. I can't say I blame her and how I wish i could take her but know that over christmas there would be no support whatsoever and with my Dad's impending return to hospital for one night , it was impossible.

Mum went on to sit on dad's lap , plead with him to take her home in view of all the patients, staff and visitors. She had all of us in tears of laughter and sadness at her comments. 'How can we leave her there she had been walking the streets of London for 2 months, she would come home and cook, clean even paint the walls if only we would take her!

The sister had to set up a diversion and take her to the bathroom so we could escape but of course that leaves her not trusting us again as we didn't say goodbye properly. Her comments indicated she wanted to come home to have her hair done properly....how could Dad not take her as he had promised to cherish her!! All emotional blackmail but how many of us would like to be behind closed doors and away from our home.... how we wished we could take her, she is so nearly ready for home but not quite.

We also know that when she comes , it will be fine for a while but the underlying distress of the illness will never go away and there will be periods when we can't cope. Mum is so fortunate to have the constant support from Dad, many people would walk away and not be able to cope with the situation. Not a day goes by without Dad being there unless he is in hospital himself!

There are several other patients in the ward where their husbands or wives come without fail on a daily basis. I know the disruption and dedication it demands.

Sunday 29 November 2009

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.

Saturday 28 November 2009

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.