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