Saturday, 12 September 2009

An Emotional Rollercoaster!!

Basil loves this tub.... its very old and rotten and was going to be emptied and thrown away Basil decided he would help out and got into the tub, dug most of the old soil out (dirt everywhere!!) and then settled in the tub for a good old nap!!

I have been working on this draft/post for some time now. I fitted it in as and when I could. So. many changes have occurred and so much has happened in such a short space of time, where did summer go this year? This post is mostly about my Mum who I am very sad to say has rapidly deteriorated since this post was started. Its been a really hard time emotionally. I was going to scrap this draft and start again, but on reflection it may be wise to leave things as they are so you can read about my summer and my dear, precious Mum and then when you get to the end of the post I will include recent updates. This is a very long post to read and I apologise for its length but their is lots to catch up on. I am also very sorry that I have taken such a long to publish a post... (naughty blogger again!) but I know that you will all understand why I am so behind with posting...... however I have enjoyed keeping up with all your wonderful blogs and have at least had the time to participate in making comments at times. I have loved reading your blogs over the past months its helped take my mind of things. xxxx

June 2009
Mum continued to deteriorate and eventually after a four month wait Mum finally got to see the consultant again and so another chapter in our lives begins.....

The consultant was not very happy with Mums decline in health and spirit and so decided that Mum was to be admitted to the special hospital that deals with mental health problems in aged people.

Mum was horrified to hear this and it took a great deal of persuasion to get Mum to come into the the hospital as she did not want to leave her home and family. Mum is a very quiet gentle lady who has never mixed easily and is somewhat shy so this was a really scary thing for Mum and I have to say I was not at all happy to endorse this decision although I knew it was the only way forward for Mum... needless to say many tears were shed by both Mum and I on the day of admission. It was hard for me to be strong and brave but I tried I really, really did!!

Mum needs to be in this hospital for up to a month or more so they can try out drugs to lift her mood as she is very depressed and of course to trial drugs on a dementia patient means they need to be monitored 24/7 over a period of time to ensure their are no side effects and if their are they can be dealt with swiftly, not something that can be done at home. They have also discovered Mum was suffering from a minor infection and sodium problems they are having to deal with that first before the testing can begin.


In Mums room at the special hospital on one of my visits, that is my daughter sat on Mums bed. Mum has brought teddy with her during her stay in hospital as she adores her teddy and he is a great comfort to her at times and I know she holds and cuddles him during the night.


I visit Mum everyday and thankfully I have a wonderful community of friends, neighbours and family who rally around and ensure I have a lift each day as I cannot drive.

The visits have been rather difficult as Mum wants so much to come home. When its time to go it can be very difficult and I usually have to find a nurse to deal with Mum whilst I leave as she is so very upset! The other day she caused quite a scene and I had to leave without saying goodbye.. it broke my heart to see her like this and by the time I got through the secure door and into the foyer I broke down and sobbed, it was all just to much to bear. The nurses were wonderful and gave me a much needed hug and chatted with me for a while and talked me through a few concerns I had and I was able to dry my eyes and sort myself out... wonderful, wonderful lovely dedicated nurses!!!

One of the friends I have who takes me on regular visits to Mum is one of my neighbours who I have recently gotten to know via Mums illness and her name is A. She is a fantastic support to both Mum and I and has helped me through so many lows. A has a disabled husband who has many problems including mild dementia. A used to work in this field and ran her own care home for many years. Also A has cared for her husband for seven years now so her advice is invaluable.

I also suffer with my own health problems and one of them is social phobia (long story for another time!) so some of these recent advents in my life are very testing. Thanks to a wonderful councillor I have come on leaps and bounds and so I have been able to cope reasonably well.
Due to a few concerns I have over Mum A has helped me to set up a review meeting which will be this coming Monday. A will accompany me to this meeting at my request as its a little daunting for me to deal with alone as the meeting will consist of Mums consultant, a social worker, occupational therapist and one of he nurses that have helped care for Mum so just a bit to much for me to deal with alone... I have moved forward in so many ways after a couple of years of counselling me through this phobia but this meeting is pushing my boundaries. I know the meeting is for my benefit but my nerves will be at an all time high on the day so A will be my rock and of course her experience will make sure the right questions get asked and hopefully answered.

During Mums stay in hospital we have had quite a lot of other issue's to cope with. The first one been that Mums home is now under threat from the site owner. Mums home was recently surveyed at the site owners insistence. The surveyors report back is not at all good. Although the surveyor states in his report that Mums home is not detrimental to the site and is tucked away out of view of the site quite a few items require immediate attention. The site owner came to pay us an unexpected visit the other day to inform us of this. He also wanted to know what my intentions for Mum were and was she going to continue to stay in her home or go into a care home and then referred to a lady in the other road who (his words!) had lost her marbles and the family had put her into a home....after biting my lip and composing myself I told him that it was my intention to care for her in her own home!! So he then said we did need to do a lot of work to her home and he would prioritise things for us so we could work on them over a period of time.. when my husband pointed out to him that its been stated by an association called 'N.a.p.e.r' who are an advisory service for residents living in park homes that the survey should not have been carried out and that he was not in his rights to survey the property only the pitch... the site owner proceeded to tell us we could either do it in a friendly manner or it could go the other way and be done by taking Mum to court..... wonder how that would fair, taking a lady with senile dementia to court!!?? I have since discussed this situation with Mums consultant who told us that Mum was protected under a mental health act and could not be evicted from her home and if we needed letters to confirm this we only needed to ask. I have yet to gather a little more information and then we will be arranging another meeting with the site owner to discuss further developments and inform him of Mum rights under the mental health act and if he wants to take Mum to court then he can.......

As it happens after an impromptu discussion with one of the health care people at the hospital it seems that Mum will have to live with us when she comes home as she now requires 24 hour care. Not sure if this is for a short while after discharge and after a 'period' of time Mum can return to her own home with a care package in place to support me as her main carer or whether Mum will live will stay with us full time... this now leaves a question mark over her home. However as Mum would have to move into our Sons room as we only have a two bedroom park home and my Son who would have no where else to go would need to sleep at Mothers house to enable this to happen so guess we need to continue with the required repairs etc..... so a lot of thinking needs to be done.... and I am sick of thinking, wondering, worrying and trying to make decisions.
My son has also been made redundant and he is struggling to find work and job seekers allowance is such a small amount that its not covering his debts and debts are beginning to mount up and due to our financial situation we are unable to help out much..... its all just too much to cope with at times and I am so, so fed up with all the mounting problems that are seemingly unsolvable at present.

Seems we take one step forward and then a hundred back.... just want a little tiny bit of luck for a change..... sorry to always moan these days that's all my posts seem to be about... moan and groan!!

On a lighter and more positive note.... I have won the giveaway on ...........http://compostbins.blogspot.com/2009/07/and-winner-is.html
which really made my day as I never win anything.... so thank you so much Compost woman you have made me very happy!!!

I love my organic garden and I am very passionate about it....... and time spent in the garden is so relaxing I loose myself completely, guess it helps me to cope.

Also walking Basil is an enjoyable time and its nice to get away and enjoy the surrounding countryside. I often take my friends dog Syd who I have mentioned before on my blog... Syd and Basil are very good friends! Also I often walk with Syd's owner L who is also a friend of mine and A comes along for the company and when the three of us are walking time just flies by as we chatter, laugh, cry, moan, let off steam and generally act about like three young girls... sometimes the dogs get fed up of waiting for us as we are often found in the middle of a field having quite a discussion... last night we started walking at 8.30pm and did not get back until 10pm (ish) We are often heard having a sing song on the way back home and as none of us have a really brilliant singing voice it can sound like a load of felines howling in the night!! But I have to say by the time I get back I often feel a lot less stressed!!

Last night on my return my husband and son had prepared a barbecue for me (My son has recently discovered the art of cooking!!) and the food was cooking nicely when I returned. Table laid and my every need catered for..... and the garden had been watered (I was going to do this after my walk) It was such a nice surprise... I felt truly spoiled!! I have a very loving and supportive family and I am truly blessed!!

My husband adores my Mum and when he visits with me he is very attentive to her needs as well as been a real support to me. Mum loves my husband also and is happy to accept his help. They have now started Mum on antidepressants and I have to say visiting is much harder to deal with as she is just not herself and so far although she has physically improved to a certain extent, mentally she seems very much worse. I am not sure if this place is creating more distress and so I wrestle with the guilt that maybe I have not done the right thing by allowing Mum to come here... should I have put my foot down or is it early days yet and once the drugs are upped things may improve???? Mum was on 10mls of Citlopram last week and this week they are upping it to 20mls.... when I go for a visit at the moment Mum becomes very agitated and after about twenty minutes she gets very distressed and will not settle and begins this endless walking around looking for something, someone as most of the patients do... its not an easy place to be.

One gentleman is so a sweet person and we exchange greetings every time I go and have a little chat... K is always looking for his friend... Then we have D who is a very friendly lady who insists she is the boss as the staff have fondly named her and she was discussing with my husband the other day the sale of the hospital to him and she would be able to help him run the place. Then we have other patients who are very stressed and can be quite disruptive at times and one lady insists that they are going to kill her. Then we have one gentleman who continually walks around and around and never speaks... although I keep on saying hello to him and maybe one day it will get through... its such a sad disease. The staff are amazing and one of staff nurses showed me the bruises on her arm that she acquired from one of the 'challenging male patients who became a little bit aggressive... but nonetheless she was still smiling and was cuddling D the boss lady as she spoke to us... such dedication and love they are amazing people!!


New update......... JULY 2009

I should have published the above but what with one thing and another never managed to do so. Since I have written the above more changes have occurred and the remaining part of this post will record the most recent events that have taken to place or about to take place.......

I have now had the review meeting with the consultant and his team on Monday. I have to say sitting in a room full of people with my social phobia problems was very daunting but my very good friend A was most supportive and spoke up when I was unable to find the words. The meeting was quite distressing at times as I was finally told the extent of Mums dementia which is now advanced senile dementia and Mums brain is now shutting down at quite a rapid rate. After I was told this news I was asked how I saw the future and after struggling to find the words, just completely broke down... and I felt all those eyes focusing on my raw emotion... thank god for A's comforting hand which held mine tightly.......... (my councillor will be proud of me......!!)

Quite a few things were discussed in this meeting but I have to say I did not hear everything that was said as I was so upset..

I was also asked how I felt about resuscitating Mum if she experienced a collapse/cardiac arrest. I wasn't expecting this question and it really shocked me to the core.. but decided in an instant that Mum no longer has a quality of life so decided that nature should be allowed to take its course and no resuscitation will be necessary. I know deep in my heart it would be what Mum would want as she as been so lost since Dads death and as hard as it is to say it I know she has wanted to join him as life has not been the same sine he left this earth. They were so close and did everything together and such a happy couple... and nothing has cured her broken heart so when its time to let her go then so be it!


Mum was to be discharged on Monday 27th July and we have been busily preparing her room. The room in question was our sons room but with our sons agreement he moved out to allow his Nan to come home and be with us for as long as is possible. Our son is now sleeping down at his Nans so in theory they have done a swap. I think my son is enjoying the peace and quiet at his Nans.
The Occupational Therapist came out to inspect our home prior to Mums discharge... and unbelievably she has decided that her decision is NO to Mum coming home. I am devastated by this news and just broke my heart after she had left yesterday.

I have since arranged a meeting as we are outraged by this decision. I will meet with staff at the home next Wednesday as she really needs to be back home with us her family who love and adore her and where she will be safe and well looked after. I do not deal with meetings altogether well and invariably often forget what I want to say or can not always put across what I want to say., so I have decided to draught a letter that can be read out at the meeting... this is a copy of the letter: -
Re: Occupational Therapist Report
On Thursday 23rd July I was visited by ***** ***** the Occupational Therapist from ********* House who arrived at 1pm (slightly earlier than originally agreed)
The visit left me devastated as after the ‘inspection’ by *** my home was deemed as an unsafe environment for my Mother to be discharged home to!!
The steps into our home were mentioned as difficult (sharp intake of breath!) mats… tut, tut!! A big no no… (Mats can be removed can they not?). Uneven flooring….etc…..
Cooker in an unsafe place, then the BATHROOM!! Corner bath a real problem absolutely no way can that be resolved. So it was decided that Mum would not be allowed home!! But maybe it would be too much for us anyway… constant 24 hour care, hubby may find it difficult!! My husband and I have discussed this matter fully and inside and out…. We have talked of nothing else for weeks and spent a great deal of time making plans for Mums homecoming! Our joint decision to look after my Mum has not been taken lightly!!
A last minute check on the toilet created even more ‘oh no’s’ not enough room for Mum to be sat on the toilet....
Then the final decider seemed to be the dog and cats… ‘What two cats!!!’ OH NO!!!!

Dr **** told me at the review meeting that Mum really needed to go back home as soon as possible as she was becoming institutionalised and nothing more could be done to help her dementia.
He also agreed to allow Mum to stay at ******** House for a further two weeks so we could prepare for her much looked forward to home-coming. My husband and I have worked as hard as we could in-between other commitments to prepare Mums room and in doing so have moved our son out (with his agreement) so we can accommodate her. Mums room although not quite finished at the time of the inspection would have been completed in time for her discharge. This was the only room that the OT approved of!!


So what to do next…. After much upset and disappointment and weighing up the situation this is what I and my husband and family have discussed and strongly agree upon. WE do want Mum to come home as soon as possible and at present we do not agree with Mum moving into a nursing home. We STRONGLY and wholeheartedly agree that Mum should be removed from the ******** as soon as possible as we feel this is much less of a safe environment for Mum to be ‘living in’ due to recent assaults that she has had to endure by other patients, three in total that I am aware of and mainly from one patient who has to be constantly ‘specialled’ due to his tendency for aggressive behaviour and we feel should not be residing at ******** ***** as both my husband, family and friends have witnessed his aggression and the upset it has caused the other patients who have been extremely frightened by his outbursts!! On a very recent visit I have had to leave my Mum in a very anxious and terrified state because of his actions not at all helping my Mothers nervous disposition and anxious mood swings.

Therefore I feel that our home is although deemed unsafe via ***** ******… a MUCH SAFER place for Mum to be living than the unsafe environment of ******** *****as added to the physical assaults Mum has received Mum has also fallen in the garden at ******** ****** and cut open her forehead and had to attend A & E for the wound to be glued and steri stripped.
I am quite sure our home and its ‘unsafe problems’ can be made suitable for Mum if **** **** and ourselves work together to this end. If we are successful, Mum will be safe in her new home, surrounded by people who love her, not people assaulting her.


I cannot understand why Basil the family dog and our two cats Bold and Boots constitute cause for concern. Perhaps they are a trip hazard?? I don’t know. Mum LOVES all our animals, Basil in particular. I found this to be very upsetting as I know how therapeutic pets are to someone who is ‘ill’ Basil last year spent many hours sitting by the bed of my late father –in – law (Jim) who had come home to die as he had terminal lung cancer. Basil was a great comfort to him and this was acknowledged by the wonderful Macmillan nurses who were carers for him. As pets are part of my Mums life they should be welcomed in the home rather than discouraged. I would far prefer Mum to have a ‘trip’ over a much loved pet than to receive a smack around the head from an aggressive patient!!

To conclude, the wishes of we the family of ***** *****… a much loved Mum, Mum in law and Grandmother, want at no matter what cost her return home were she can be cared for and most importantly LOVED by her family. We may not have much time left to spend with Mum before she loses our identities, as she is already in the advanced stages of dementia. All this ‘red tape’ is wasting precious time on treatment that is achieving nothing, and according to her consultant is actually making Mum worse. I am Mums only daughter and we have always been very close. I, her family and close friends are grieving slowly for someone who is alive, yet slowly dying before us and we so desperately need to spend this last bit of time with her before she is ‘gone’ forever. I made a promise to my Dad who was much older than Mum to look after her as he was worried that he would most likely die before her due to their age gap I said I would always look after Mum right to the end and I need to fulfil this promise. Although Mum was admitted to ******** with our consent and with her knowledge, it still scared her to think she was leaving us. We assured her that her stay would be short term and she would definitely be returning home after her assessment. As my Mother is not sectioned, and at ******** *****of her own free will, surely she can leave of her own free will. This is what we all want, please accommodate us.

I have no intention of breaking these promises. I LOVE my Mum and my Dad more than words can say and I need to honour my promises as a much loved daughter.

(Written on Friday 24th July 2009 by Mrs **** ******, daughter of Mrs ***** *****)

So this is where we are at now and again we are hitting our heads against a brick wall. I know I should not moan and groan as their are others much, much worse of than us... but I am so sick and tired of all the constant battles that plague our lives, I am so, so tired of it all now and I am quickly running out of steam. Yes I brush myself down and pick myself up again, but one can only do that so many times.


Battling the site owner, battling with our finances, battling to find my son a job, battling with the creditors that plague my son with phone calls because he does not have enough money to pay his bills now he's out of work even though he has tried to reason with them, and that includes his 'caring sharing bank'!!and now battling to get my Mum home! We like to think ourselves as good honest caring people who will do anything to help anyone if we can, pay our bills etc and do the right thing and yet we feel like we can do nothing right. I pray for things to change for the better. Its hard to wake each day and feel at peace with the world, these days I wake up and for a few seconds I feel sleepily peaceful and then my brain kicks in and all the 'crap' (sorry!) that we have to deal with flows through my mind like a stormy wave hitting the rocks and then my stomach lurches with fear and getting out of bed becomes a really hard thing to do.......

'Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength'
Charles Haddon Spurgeon


August 2009

Well I did not show that letter at the meeting. (reading it back it was a bit much, I think I just needed to let it out and writing what I felt it vented my anger/emotions ) A came with me and between us I managed to put my position across and although its not ideal as Mum needs to be home as soon as possible we have agreed that Mum stays at ******* ***** for another two weeks giving us more time to put other things right in our home that will insure Mums discharge. Its been agreed that Mum will have a comode in her bedroom and be fully washed in the bedroom thus not needing the use of our 'unsuitable bath/ bathroom' We are having a new floor laid in the kitchen, moving the cooker and having specialised steps with rails built into our home and other bits and pieces that need to be sorted out.


So we set to work.... I have had such wonderful help from friends and family.... and also another hero entered our lives, and thank god for this wonderful man! This man will be known as John and he is my Mums Community Psychiatric Nurse. He is the helping hand that I need when things become desperate. He has managed to diplomatically find another more suitable Occpational Therapist that is more qualified with home situations and John and this lovely lady came to my home and have sorted out so many things that caused me so much upset after the first OT visit that prevented Mums discharge. Pets are also very welcome !! This OT will come to see me and give me a course on caring and the correct way to lift sick/elderly patients prior to Mums discharge. Also if needed I may be able to have the use of a hospital bed. Life looks like improving again........


The painting of Mums room to be, before and in the process of after, the new kitchen floor, the process of a floor repair in our living / dinning room by the main door of entry, the new floor covering in the dinning room area and finally the process of replaced steps and fitting handrails for entry into our home, still need to stain and replace some of the step paving (during the replacement of these steps and attaching handrails which has taken about two weeks due to fitting the work around other committments Mum has now lost the ability to walk, so if I ever manage to get her back home she will be brought home by ambulance and carried in by ambulance persons)


But..... again life hits us with more troubles...


I went to visit Mum and found her completely zombified and she had been sedated. My sweet dear Mum had been trying to push the communial television over and become very aggressive and agitated. I quickly realised that Mum would most likely have an infection. Mum has a lung condition and she is easily prone to infection. The staff said they would get the doctor to check Mum out. It was confirmed she had an infection which makes Mum very unstable. So antibiotics were prescribed. Two days later I had a phone call to say they were closing Mums ward down, some patients were moving upstairs, others going to homes and Mum to another assessment hospital miles away!!

The move was the last thing Mum needed, far to unsettling. I pleaded with them to keep her where she was as it would distress her so much but no matter what I said even though we were days away from Mums discharge Mum had to be moved.

Mums clothes did not go with her, they were not packed, Mums glasses/ hearing aid were lost. The whole move was a complete shambles and the glasses and hearing are still missing never to be found again.

Because of the distance and no transport I was not able to visit Mum very much and because of the move and the infection it totally destroyed Mum. Mum became very agitated. Then an incident occured on a particarully bad day for Mum and she began screaming at another patient who got very cross with Mum and then he pushed her over and this resulted in Mum fracturing her pelvis and yet another visit to A & E.....


Mum was given some sort of a girdle thing to wear and was returned to the home. I visited Mum that weekend on the Sunday and she was in a wheelchair pushed up to the table which stopped her from getting up. Mums hair was filthy, nails dirty, hands and face sticky with food. Mum was in a very poor state health wise and she was vile with me. I knew something was very wrong and it looked like she still had an infection. The very next morning I rang John the CPN. John went to visit Mum soon after my call and confirmed that Mum was indeed not at all well. John also managed to get the staff to understand about Mums lung condition and that she may indeed still have an infection. Prior to this I had great difficulty getting them to listen to what I was saying about Mums lung condition etc... John then promptly called me and informed me of his findings and that he had made things very clear to the staff. He also insisted that they checked Mum out for further infection. This was on the Monday. I was not able to visit Mum until the following weekend due to transport difficulties and apart from my daily phone calls to find out how Mum was which were always answered by someone that seemed to find my calls an inconvenience and I got the impression that I was been a bit of a pain.... not a very comfortable feeling. On the Friday I was called from the home/hospital to say that Mum had been taken to A & E again, she was indeed very ill and was not swallowing, it was coming up the to the August bank holiday and they felt she should be checked out by the hospital.

I went to see Mum on the Saturday and she was fast asleep and attached to an intravenous drip, intravenous antibotics (and yes she did have an infection!!) and on oxygen. Mum did not wake all the time I was with her but she looked so frail and weak. I began to realise that things were looking very grave indeed so I arranged a meeting with the hospital doctor for the Thursday. I also spoke to a really lovely ward sister who spent a lot of time with me explaining the swallowing situation that Mum was experiencing. This ward sister was a real sweetheart and has been a great help to me emotionally. I was unable to visit Mum on Sunday and Bank Holiday Monday as my OH took me to Norfolk on Sunday to visit old friends and neighbours. We have know these dear friends for 29 years and we have always keep in close contact. It was so nice to get away for just the day. My daughter and her partner looked after Basil for us. We were away for just the day but it was a very welcome distraction and so nice to have a heart to heart with very dear friends!! They made the day very special for us and the time just flew by.... If you are reading this dear sweet friends... THANK YOU so much for that wonderful day!!!


I did phone each day however and Mum remained much the same which was good news, although an improvement would have been much better news.

September 2009


On the Monday we had a long time planned family and friends get together. The weather was ok (thank goodness!!) so we had a barbeque in the garden. We don't entertain very often , especially so since I have been suffering with my social phobia...... so this was a BIG day! It was also nice as my husbands brother was coming over from Scotland and he brought another brother that had sort of seperated himself from the family for about ten years. No idea why and its been so sad, and one day when T is ready he may tell us, but no matter this was the day that the brothers were reunited and it was the BEST day ever!!! Also it was the day that the family were to be finally introduced to my daughters partner. It was a HUGE success and we all had a really GREAT time. It began at 1.30pm and went on until 11.30pm... such a lovely, lovely day. Even Basil had his doggy friend around for the day... Syd and Basil had a great time!!
On the Tuesday reality hit and I visited Mum again, who was again asleep and looking very weak. Things did not look at all good.

On the Wednesday I called John the CPN and informed him that Mum was now in hospital. He warned me that Mum may not really recover from this and if she did she was a long way off from coming home, if at all as she may now need the full time care of a nursing home. However I was not looking at this through rose tinted glasses and John and I agreed that things were moving very fast and it may be time to get family members to visit Mum.

On Thursday the meeting with the doctor confirmed my fears. Mum is in a very advanced stage of dementia and she is now forgetting how to swallow. Mum cannot have a feed through the nose as she will pull it out. Mum is far to weak to have an operation to insert a feed through her stomach and the Doctor does not recommend it as it will be very painful for Mum and again it can be pulled out. So the only option is to feed Mum when she actually wants food and hope that it does not go into her lungs. Mum is not wanting food or drink and will fight the nurses when they attempt to feed her. This is making it difficult to also give Mum her medications. Mum cannot walk now as she is too frightened after the fall, so the situation is extremley bleak. John (CPN) and I both agree that it seems as if Mum as given up and no longer has the will to live. And who could blame her... how she must be feeling I really don't know. Life is just one big muddle, moved from pillar to post, poked and prodded, promises to go home not kept, not seeing her family everyday and most likely not understanding why, day becoming night and night becoming day, and just wanting to shut those eyes and block it all out..... it just breaks my heart.

Three months ago, I knew Mum was ill and things were going to become more difficult as time would go on. But I was able to chat with her, watch her favourite soap Emmerdale with her and she was able to eat by herself...... thats all gone now in a short space of three months. Each day that went by I lost more and more of her and now I can no longer chat with her, although I still try in the hope she can understand me.... as I prattle on about whos doing this and that....


Mum still knows me and I see those tired eyes light up when I turn up to see her. Mum even tells me off sometimes when I try to make her comfortable or help the nurses change her... its a real treat to hear her say 'for goodness sake Jane!!' The biggest thing of all is she has lost her beautiful smile and really wonderful happy laugh. I would give anything to see that smile again. Mostly its fear and agitation and then she just weeps... especially when she sees the two girls and the baby over there, wherever over there is..... another sympton of dementia are the hallucinations. Sometimes she calls me Mum apparently that is called role reversal. One minute I can be Jane and the next I am Mum.

I so want to get Mum home, no matter how hard it will be... I know that if its at all possible it will only be for a short while as I know full well myself and the family do not have long left with Mum. I know that the Doctor and nurses at the meeting respect my wishes and understand my need to spend just a little longer with my Mum... but we shall have to see and hope that something finally works out. I can only take each day at a time and each day I see Mum is precious. Today I came in to find the nurse trying so hard to feed Mum who can only eat pureed food now and Mum was not cooperating with the nurse at all and kept spitting the food out. The nurse asked me if I could maybe have a go to see if Mum would respond better with me. Slowly and surely Mum began to eat, swallow and ate nearly a whole pot of banana fortified pudding. That made me feel so happy!!

A old family photograph, quality not brilliant due to this imagine been a photograph of a photograph. This is my Mum and Dad and me..



September 11th


Firstly on a lighter note our son has still not been able to find work, but we have now been to Cititizens Advice regarding my sons bills and the nightmare of the continuous hounding of the bank and his creditors. The CAB have been brilliant and have already given my son some great help/advice and he does have some hope and a way to get his life back on track without debt. We have another appointment next week to finalise the option he prefers to take to get things sorted out for once and for all.


Mum has just received a letter from the site owners solicitors threatening to take Mum to court regarding her home if she does not comply with the site regulations to do various repairs on her home.... what a nice man he his, he knows full well how ill and frail Mum is yet he still wants to take this frail, ill and 78 year old lady to court, its unbelivable!
(sorry the above paragraphs went into smaller font... try as I may Blogger will not let me alter this ... and I now officially give up... sigh!!)

Well Mum has been moved yet again. This time its to another ward and just as we were getting Mum to eat again.. Grrrrrrrrrrrrrrrrrrr. I am pulling my hair out and I really cannot bear much more of this. Mum has left a lovely quiet ward (its for stroke patients) as they needed Mums bed for a stroke victim which of course is totally understandable and I am not for one minute complaining of that. Its just frustrating as its the last thing she needed. The ward she is now in is awful, Mum is up in a corner by a window which has the blinds permantly shut as another building is feet away and in the process of some alterations so green sheeting is everywhere. Mum is left in the corner all on her own with the odd intervention by nurses as and when required. Previously Mum was on the second floor up and overlooking countryside, and could watch the trees blowing in the wind see the sunshine and sky. Now she has nothing to look at...... and I am finding it so upsetting and although I tentatively say how unhappy she is to the ward manager it seems to fall on deaf ears.


The last couple of days she becomes very upset when I go to visit her, she begs to come home, and she gets so agitated and begins to cry and scream and then hide under the sheets, I feel the eyes of other patients and vistors looking disapprovingly at Mum and I feel so angry with them and then I begin to get anxious. Mum has not eaten for the last two days, I can hear her chest rattling again, her hair is greasy and her nails unclean and she is becoming so unresponsive. I have mentioned all this but they say that they cannot get her to respond to anything they suggest..... and I suppose they don't have the time to mess around so she is left. Its breaking my heart. The other ward she was in she had some really lovely understanding nurses looking after her and one of the ward sisters own Mother suffered with dementia so she was totally sympathic to Mums needs and slowly Mum was responding, now we are back to square one and worse.....I really don't know who I can talk to but I am far from happy about things. My guardian angel, John the CPN will be back on Monday (he has been away for a few days) and I am going to see if he can help push Mums discharge for me. I had a phone call this morning from the hospital CPN who I have made aware of Mums plight and she is sending Mums second attempt for a Continuous Care plan to the committe who will meet on Monday and by Monday afternoon I will have an answer as to whether Mum will fit the criteria for Continuous Care this time around (her continued deterioration means she now ticks a few more boxes) and if its passed (fingers and toes crossed) I am going to attempt to pull out all the stops to get Mum home as soon as possible as Mum is physically and mentally becoming extremely ill again...... and she really needs to be home surrounded by her family who love her so very much.....


I know that Mum is in the final advanced stage of dementia and everyday I see her and spend time with her is a blessing. I cannot bear the thought of losing her, yet I know full well its getting closer. I get through my days on highs and lows. Unexpected memories flood my mind and I find myself sobbing my heart out, other times laughing at past memories. Life is just an emotional rollercoaster at the moment..... I don't want you to leave me Mum, I will miss you terribly as we have always been so close, you have been my very best friend and always been their for me no matter what, I cannot imagine life without you but I have to let you go and its so hard to be brave, but brave I must be..... thank god for you my much loved Mum xxx


16 comments:

liz scott said...

I have read your post & have nothing but respect and admiration for you. xXx

Compostwoman said...

Oh Jane xxxx

My eyes are full of tears at your account of all you and your mum and family have been through....

I am SO sorry that all this has happened to you all...

It is SO wrong and it SHOULD not be like this..

You have done SUCH a wonderful job and "they" ( who ever they are) are .......

well I cannot put what I feel as I think Blogger would probably censor it..

Big hugs...and much love..is all I can come up with....

Sarah xxxxx

aromatic said...

Dearest LiZZie, Thank you so much your words mean so much to me! Hope all is going well in your gorgeous new home, its most certainly coming along and I am so enjoying following its restoration. Keep up the good work its going to be such a lovely, happy home!! Will be in touch soon...xxxxxxx

Compostwoman/Sarah, So glad you are feeling better now!! Its certainly a hard road we are following at the moment, and yet I know their are others much worse off than us... but I have to be selfish for a while, I just cannot help it.... I wish so much it had not been like this for Mum, she so does not deserve to go through this living hell. I to would like to verbalise this illness in a more descriptive way, but if I did Blogger would ban me forever!!!
Yesterday I managed to get Mum to eat five spoonfuls of ice-cream, but she is generally refusing all food and medication. I just hope if I EVER get her home it will make her more at peace and she may respond more, but I could well be wrong. Mum is in such a state. On Monday I will phone John the CPN and see what he can do to help her whilst she is in hospital and then everything crossed for the results of the Continuous Care plan that may or may not be agreed by tomorrow afternoon.
Look after yourself and Hugs to Compostgirl (oh and one for Mr CW.. must not leave him out!!lol!!) Hope the little chicks are growing well!! With Love, Jane xxxxx

Leanne said...

oh jane, i am choked too. i cannot offer much useful advice, but i will say i am full of admiration for you, and i am sending you a huge supportive hug.

Leanne x

aromatic said...

Leanne, Thank you so, so much! I really need that hug right now and its so appreciated!!
With Love, Jane xxx

Tea with Willow said...

I've just been catching up with some blogs, after a long time away, and Jane, I cannot believe the ordeal you have been going through these past few months. Any words of support I could offer would just seem so inadequate - but, as others have said, you have done an amazing job of caring for your Mum, with so little support from the authorities. Thank goodness for your wonderful family. Sending you a huge hug,

Willow xxxxx

thesnailgarden said...

Thinking of you and your family, best wishes Pj x

MelMel said...

Hello lovey....I'm sos ad for you, you have such a hard time....my eyes are feeled with tears because we know as a family the cost of losing someone, what if we had never listened about putting my Brother in a special unit, would he have been alive today?
We don't know but it tortures you daily all the what if's...
My heart trully goes out to you...and I am keeping you in my thoughts....and prayers...
Too much for you to deal with all the worry about court and £££££.....in circumstances like this things should be sorted to lift the pressure and help £££ should be offered so you can just be with your Mum and make the most of the days you have together....

Your goodness shines from the words on your blog.....and your Love for you family.....is the most important thing ever....Melxxxx

Tina said...

Jane, I just can’t say much to really help, just let me send you a big warm hug! Such bad times you are going through. Hope you have the strength for it all! Try to enjoy the good moments you have to get you through all the bad!

ICQB said...

Oh Jane, I'm so sorry. I remember going through some similar things just before my Dad passed. All I can say is that my heart and my thoughts are with you and your Mum.

Many hugs to you and your wonderful family.

Linda

Sara said...

Jane, Your update has moved me to the core. I have tears rolling down my cheeks but I am also so angry at the way it appears both you & your mum have been failed by the 'system'. You are an amazing person for fighting for your mum so hard, despite it being so difficult for you. I can only hope that you get your wish & that your mum is allowed the peace & dignity of ending her time on this earth surrounded by the love of her family. I do worry about you & all the trauma you are going through. Please hold on to the happy memories, keep them in your heart. They will never leave you & neither will your mum. She will always walk with you.
You are an incredible, special person & I hope that when you have got through this awful time in your life the sunshine will return.
Lots of love & hugs to you, Sara xx

aromatic said...

Tea with Willow, so nice to have you around again, you have been much missed!! Thank you for your lovely comment... thank you so much for that hug... it really needed at the moment!! Look after yourself and love to your lovely family!! xxx

thesnailgarden, thank you for commenting on my blog and for your good wishes, I so appreciate your very kind thoughts at this difficult time. xxx

MelMel, I hope I have not upset you too much, you have had a very difficult time of late yourself and I so feel for you! Its very sweet of you to take the time to comment on my blog and for your kindness and prayers... they mean so, so much to me... thank you xxx

Tina, thank you for commenting on my blog and for your very welcome hug... I really appreciate your kindness. I am lucky to have a wonderful family and friends who are helping me through these difficult days and for that I am truly blessed. Also I need to thank you for an email you sent me sometime ago regarding Basil my dog and his health problems. I do have an email half written in my files (somewhere!!) in reply to you but with one thing and another I never got to finish it... I do apologise, and thank you from the bottom of my heart for taking the time and trouble to email me. xxx

ICBQ... Thank you for your comment and for your support and kind thoughts... they do really mean so much to me... thank you xxx

Sara... your comment moved me to tears... thank you so much... I also hope I have not upset you too much.... please don't worry one way or another we will get through this.... but your kind thoughts, love and hugs help so much.. thank you!! xxx

Leanne said...

jane just dropped by to thank you for the gorgeous e-card.. i was there in it lol! thank you for thinking of me when theres so much on your plate...

sending you huge equinox blessings, you deserve them...

Leanne x

Ragged Roses said...

Oh I really really can not find the words to express how I feel for you and your family after reading this. I am so so sorry that life has treated you all like this over the past few months. I am thinking of you all
Kimx

aromatic said...

Dear Kim.. Thank you so much for your lovely comment and for your kind thoughts.... They are so, so much appreciated!!
Thinking of you too...
With Love, Jane xxxx

Bovey Belle said...

Oh my dear. How you have struggled and had to fight for your mum, and what a difference in care from one building or even one ward to another. It should not be like this. There are echoes of when my mum had her initial big stroke - I can remember being so shocked when the Dr TOLD me - not asked me - that of course should my mum have a heart attack or whatever, she would not be revived. Not asking me how I felt about it - just a bald pronouncement of the fact. In the event she lived a further 6 years.

Like you I am an only child, so I understand full well the burden you carry, the responsibility and love for your mum, and how difficult it is to cope when you find your mum in such dire conditions, uncared for, and you can do so little about it. It's like the worst form of mental torture.

You have done everything you can do, and I am glad that your mum will soon be home with you and whatever problems that brings for you, at least she will be safe, secure and in your home, where she will be wrapped around with love. Dementia or no, I am sure she will respond positively to that and hopefully not be frightened any more. If she should be, then that is just her mind doing it - not outside influences and attacks from other disturbed patients.

You and your mum will be in my thoughts, Jennie xx (Aberlemno)