When times are at their worst......21/11/13

Sometimes words cannot describe the madness and pain that both dementia sufferers and their family carers have to go through before someone will actually step up to the mark and help.

The breaking point was reached and the emotions are still to raw to put into words.  Needless to say that if what we went through is what others go through then I despair. 

I will write when tears stop flowing because to share experiences is to let others know they are not alone in frustrations and anger. 

Status report

Mums dementia and physical state continues to decline. Her memory is now becoming extremely difficult to manage words that fall out of her mouth are instantly forgotten so repetition and increased confusion plunge Mum into greater depression and frustration. 

Mum has hours of silences when she disappears into a world that only she knows.  Those who are around her 24/7 are greeted with suspicion and fear as she doesn't recognise us, it is only with gentle and familiar handling and coaxing that she recognises she is in good hands. 

There seems to be marked reduced mobility requiring assistance,  her trademark swift shuffling has become a more laboured effort to move her feet one after the other and at times she is moving forward with support and they are stuck to the floor, more apparent with the right leg. 

There was some discussion that maybe when Mum had the knock on the head in the bathroom that she may have had a mild stroke and the more I see her problems with walking now the more it seems likely.  The only method of confirming was to get Mum to have a Scan and there is no way that is possible as it would cause her more distress and possible injury. 

Mums reduced mobility and her legs/feet becoming 'frozen' to the floor has resulted in a number of minor falls with no other injuries. 

The combination of memory deterioration and declining mobility has meant that someone has to be around on constant attendance, something my family do not seem to have taken on board. 

We are no longer able to nip out if she is refusing to get out of bed as we know she will probably stay there all day. She often needs help getting to the bathroom and sometimes doesn't make it but strongly refuses the convenience of a commode in her room!!

There is still a great deal of fight left in her reserves when she feels she needs to use them to keep her independence, however her ability to make rational decisions concerning her welfare has long gone. The battle continues.

Text to siblings........truth hurts

Ok I was told by Nathalie not to be a martyr and to talk and shout if need be. 

Yesterday John said I was being 'tetchy'..... (Can't remember what exactly) he wanted to know why.  I explained I am exhausted all the time, his solution 'go to the doctor!' I argued that it wasn't a doctor 'thing' I have had the counselling and this is where I am. 

This is how I sit every night, dad sleeping and Mum away with the fairies. My desire to go out and socialise has pretty much gone, the life is being sucked out of me. So please excuse me for not being chirpy and talkative and social but I find it hard.   

To top it all John said he wants to talk to Dr Mathews as he doesn't feel putting Mum in a home is a good thing. Of course it isn't but he didn't reply when I asked if he was going to move in here.

You both want me to talk.... Maybe it's better when I don't!  I am going to sleep now. 

I didn't have the energy to have this conversation twice so I sent them both the same text. I am waiting for the fall out. I don't know what they expect from me....... But when there is nothing left who will pick up the pieces? 

Name on a T Shirt

Over recent weeks Mums condition has greatly deteriorated. She is becoming more confused with where she is as she is now not recognising her surroundings and who we are.

A few days ago I wore a t-shirt that my Salsa Teacher friend had done for me and it bore my name on the front.  I had worn it whilst taking a break from Mum for a few hours by helping my friend sort out new premises for her dance classes, I returned home and whilst preparing dinner in the kitchen Mum appeared and sat at the table watching me being busy.

At one point I stood in front of her whilst trying to have a conversation, she looked at the name on my T-shirt and said ‘I didn’t know your name was Susannah’ I smiled she then said ‘How long have you had that name?’

I smiled at her and said ‘I have had this name ever since you gave it to me when I was a small baby.’
Mum frowned and disappeared into her alternate world somewhere far away where only she exists.

My Dad shrugged at me as if to say .......... oh well, what next?
I shrugged back in reply....... who knows!

Anxious thoughts

I phoned the care home that we have favoured and asked them where Mum is on the waiting list, actually I have done this twice or three times in recent weeks, whenever I get to breaking point.  I think that Maxine must be getting tired of my tearful calls but she handles me very well when I do.

This is the time when I know that I am getting close to losing it but am also aware that I am terrified of getting the call to say they have a bed available to take Mum.  My whole life at the moment revolves around, where is she, has she had food and drink, does she need bathing or dressing, is she up to going out, is the weather nice enough to sit in the garden, how long has she been in bed should I wake her and get her out of bed, is she happy or sad?

I think about all the little things I do for Mum to make her feel loved, she enjoys having her hair brushed hard when I am preparing to put it in a bun to massage her scalp, when she has a bath she loves having the rough mitt to scrub her back. When she is anxious I massage cream into her hands to help relax her. She likes her coffee made with half cold and half hot water, only the tip of the spoon with coffee powder as she likes it weak. Will she get any of this when she is in the home, I don’t think so she will be with strangers.

Constant thoughts of this are clouding the decision process and making life hard at the moment, the waiting game is not a fair one, it is challenging and exhausting. I often wake in the early hours in panic.

Furniture antics

17^th July 2013. A great deal has happened and my nerves have been stretched as a result. In desperate need of a break I phoned my sister Nathalie and asked her to come down from Kent for the weekend if it was possible  for the 19th July as I needed a break, her initial response was sorry its end of term lots to do with her two girls at school, but then she phoned me back and said ok.  This was a nerve wracking thing for me as I had to make sure everything was prepared in the house and the shopping was done, anticipate what may go wrong and prepare notes for it. I told my daughter Kimberley we were off to my friends at the Isle of Wight for the weekend.

18th July.  Mum was still refusing to drink and was sweltering in the heat refusing to allow me to pull her curtains closed to shut out the sunlight that was flooding straight onto her bed where she lay.  My brother came round and tried to coax Mum into allowing us to move her bed around so that it was running along a shaded wall, surprisingly she agreed.

I told my brother this was a VERY BAD IDEA as Nathalie would be coming down tomorrow (Friday) and would be faced with Mum being difficult because her bedroom had been changed. Reasoning seemed futile as we both knew she would be better off away from the window but I could see it causing major problems.

We moved Mum into a spare room while we moved the furniture around to accommodate the bed being moved, now this is no ordinary bed, it is a wooden cabin bed with a bed that slides in underneath it.  Mum insisted she have this bed so that she was at window level and could see out of the window, it is very heavy to move and not in the slightest bit suitable for her! We finally completed the task and all seemed well, my brother left happy that the task had been completed.  

Less than an hour later Mum called me and said she thinks she would prefer her bed to be moved to under the window so she could see out (totally forgetting that we had just moved it from there).  I said it was very good where it was as it stopped the full sun being on the bed all day!  Mum started getting agitated and couldn’t reason that we had only just finished moving it an hour or so ago.  She started shouting at me to move the bed and if I didn’t she would.  Unfortunately, my brother was now at the vet having his aging dog put to sleep so was not contactable and I was due at the doctors for an appointment.

I explained to Mum that I had to go to the doctors and that my brother was at the vet and couldn’t come round, but we would move it back later.  It didn’t placate her, she ranted and raved so I left her to go to the bathroom to prepare for my appointment. When I was ready to leave I found Mum trying to heave the bed round (now Mum, as I may have mentioned before is about 4ft tall and rather frail) She told me that if I didn’t help her she would do it herself and if she needed help she would shout out the window for someone from the street to help her.  On that note I told her to wait until I got back and to stop being silly.

I returned half an hour later to find out from Dad that Mum had managed to drag the bed across the room and it got wedged and in frustration she called on him to assist with getting it in place under the window. Dad suffers with a bad back and Parkinson’s and for the years that Mum has been diagnosed with dementia has been totally shunned by Mum becoming the focal point of her anger so as you can imagine it was a surprise that she asked him to help. I helped re organise the bedroom and remake the bed, Mum climbed in pleased with her efforts and fell asleep.

Sometimes I despair.

Breaking point and 'The waiting game'

15^th July 2013 Apparently obvious to others and lastly to myself I have been having a little problem in managing with Mum recently.  Nothing I do is right, everything is argued about, mentally the strain is becoming difficult to handle.

In the past week I have called; Mums doctor who was on annual leave, Mums Mental Health Specialist who was on a course, Mental Health Nurse who is only in on a Tuesday and Wednesday, Elderly Care Social Worker who was on annual leave but managed to see him today with my brother.

All I needed was time off - a little ‘respite care’ for Mum that everyone talks about to give me a break. What I got instead was told that under the circumstances it would not be suitable to provide respite for Mum due to the difficult and volatile nature of her condition.  It would make her worse to handle afterwards.  He appreciated the difficult situation I was dealing with but felt it was not an option at this time we needed to wait until a permanent place was available as she was already on the list and he was not willing to look at the prospect of moving her twice. I broke down in tears of exhaustion, anger and frustration.

I asked if anything had been done to sort out some form of anti depressant as we have known for a long time now that Mums depression is not helping her moods.  I was told that it had recently been discussed and that Dr. Mathews would be dealing with the matter as it had just been brought to her attention! We have been bringing this to their attention for many many months if not a year!

When we left his office I was feeling helpless and emotionally drained. Sit and wait was the advice of the day, problem was I was not sure how long I could do this for.