There has been a fair amount of activity since handing in my notice this morning.
It would be unfair to detail this morning’s telephone exchanges with professional staff.
Just to make matters easier I have declared I’m in crisis trying to support Maureen’s current presentation. My understanding is that this will make a referral to the Home Treatment Team more straightforward; as they are a crisis intervention team. It is also a realistic assessment my ability to continue to provide adequate care and maintain my own wellbeing
It is not my intention to post any further detail on Maureen’s presentation. If I haven’t outlined how difficult things are at the moment I never will. What I intend to Blog about in the next few weeks is how things move forward as I attempt to develop a life of my own alongside being a Care Partner.
At 10.30 tomorrow morning I intended to give a month’s notice that I am no longer prepared to be Maureen’s Care Partner under the current arrangements. I am posting this information because there is no guarantee I will be able to make the meeting with my Admiral Nurse and G P. Despite assurances yesterday the Care Agency have not confirmed there will be adequate care in place for Maureen tomorrow morning.
Yesterday was the straw that finally broke this Care Partner’s back. My visit to the Care Agency confirmed my worst fears: they don’t understand dementia and are working within procedures that are not fit for purpose
I am giving notice because I love my wife. The current arrangements for support place an unworkable burden on me and cannot be sustained. We are both entitled to a much better support than this under the Care Act.
On the first of May if workable arrangements have not been put in place I will remove myself to a place of safety until they are.
Today is one of those days when I feel tempted to throw the towel in and walk away from my role as Care Partner to my wife. The ‘last straw’ is realising that our Care Agency are not Dementia Friendly: in fact I’m coming to the conclusion that they don’t understand the condition at all.
I’ve spent this morning, once again, trying to paper over the cracks in their set up. The new Care Plan is now in situ as I have collected it from their offices. However, when I’m told that new carers are expected to familiarise themselves with it on arrival I begin to get worried. Then when I establish that they are quite happy to saddle us with a carer on Friday who was counterproductive on her last visit I begin to despair.
The new Agency continues to claim they have teething problems since their takeover from the previous incumbent. From what I’ve seen and heard they need root canal treatment. There is trouble in the camp from their staff making complaints within earshot that their leave requests are not being sanctioned. I’m already aware of bad feeling from the imposition of the new contract with a reduction in enhanced rates for week-end working.
When I arrive home I watch the excellent Gail in action allowing Maureen to put out the washing unaided: it takes her half an hour. Chloe will be back on Monday and Maureen won’t allow anyone else but her ‘hairdresser’ to help her in the shower. That is on good days. It has been about a month now since Maureen felt warm water all over her body: despite Chloe’s attempts to coax her into the cubicle on every visit.
There are suggestions that the Care Sector is on the verge of collapse as it tries to implement the Living Wage. I know that feeling: carers can’t get their leave sanctioned – I wish there was even a process for me to put in an application for a decent break.
The dedication of Chloe and Gail never continues to amaze me. They are treated poorly in an industry that is on the verge of collapse. It is possible that their employer is being pushed over the cliff by a Local Authority wrestling with the demands of diminishing resources. I feel ready to throw the towel in: trying to continually sort out dysfunctional organisation is exhausting.
It is fortunate that my meeting with our G P and my Admiral Nurse is less than 48 hours way. Unless the involvement of the Home Treatment Team is on the horizon and leads to some postive changes in the support we receive the only towel that needs to be used here won’t be Maureen’s bath towel.
I’m drafting this post early in the morning once again. It’s difficult to get back to sleep after seeing Maureen so disturbed. At 2.30 this morning she shouted out my name as she thought someone was trying to open her bedroom door. I should be used to this by now but her behaviour once I joined her puzzled me. She stared into space for long periods of time and asked me when Chloe, our carer, would be coming.
Maureen is doing just what I have asked her to do whenever she is frightened: to call out ‘Paul’ at the top of her voice. What I am not sure about this morning is who she thinks I am. I would speculate from her behaviour that she doesn’t think I’m her husband.
I managed to have a chat with my Admiral Nurse yesterday afternoon. Mel made the point that I’m often ‘between a rock and a hard place’. Where to sleep puts me in that uncomfortable position every night. On some nights Maureen makes it explicit that I belong in the spare room. This means leaving her alone to face her night-time demons. My shoulder problems add to our difficulties as it is easier to be pain free if I have bed to myself and can move around freely.
When we sleep together I’m immediately on hand if Maureen becomes frightened. If I’m in the spare room I sleep with one ear to the ground ready to move next door if the shout for me is made. So I’m always between the spare room and the marital bed: a hard place to get much needed sleep!
This post will be brief after an exhausting night. We went to bed early last night as we were both very tired. Before we turned in Maureen shared her fears that I would leave her because I would get fed with her always being tired and ill. During the night she has been up three times frightened by things around her.
She shot out of bed around 11 pm frightened that she was late getting up. When she went downstairs she saw a dog in the lounge and a man at our front door. After further sleep she was out of bed again frightened that there was a cat in our bedroom. A few hours later she was complaining that she was cold and had no clothes to wear.
We were drinking tea in bed an hour ago and she was talking about how she had lost her memory. She shared, for the first time, that sometimes she didn’t know who I was and wondered if other people knew she had lost her memory. I listened repeating my mantra: that her recovery from stroke is continuing and how her incredible efforts are making such a difference.
I am hoping that Maureen will be able to rest a little longer. With luck she will remember two things I have suggested we try to do today: set some flower seed and walk to nearby ‘Leading Labels’ where she might be able to choose some new clothes.
I am forwarding this post to our G P and my Admiral Nurse in preparation for our meeting on Friday..
I am only going to look back four hours to outline how Maureen is at the moment and the challenges that face me as her Care Partner. She went downstairs at 2 am to make a drink and came back ten minutes later saying she was frightened because ‘the others weren’t there’. She asked if I would make her a cup of tea as she ‘didn’t like being downstairs by herself’.
When we were sitting in bed drinking tea she asked me ‘if I knew how to help her get her memory back’. She continued on with this theme for some time eventually deciding that improvements are taking place all the time. After listening to her for some time, and making supportive comments I suggested we should try to get back to sleep. I’m pretty sure Maureen drifted off shortly after my hand left the light switch.
My guess would be that Maureen will have forgotten her thoughts when she wakes a little later. In fact she has just joined me as I type saying she ‘is looking for her mum’. I’m not sure she knows who I am as I encourage her to rest a while longer before I bring her a cup of tea..
I’m hoping the forthcoming involvement of theHome Treatment Team will make the next stage of our journey a little easier. Friday’s scheduled meeting with my Admiral Nurse and G P will be an opportunity to make sure that Maureen’s referral is moving in the right direction.
Yesterday was a good day despite Maureen being tired after her evening with Clarice: she said her aunty never stopped talking while I was out watching the Sky Blues on T V. I wouldn’t be at all surprised as her uncle Dennis and I often used to say ‘listen to them they are like a couple of teenagers when they get together’. Despite needing plenty of rest she responded well to the new regime.
Early on I thought my new plans were doomed to failure when I asked her to stir the porridge. She did it begrudgingly: grumbling about it being my job. Then she announced that she had never liked porridge and said she didn’t want any. One of the things I have learned is that ‘no’ often means ‘not now’, and a few minutes later she was at the table with spoon in hand.
Maureen was eager to help with the preparation of a very late lunch. She worked well peeling and chopping vegetables with minimal help. We were both delighted with the meal and my raspberry surprise for sweet hit the spot. I knew I’d be onto a winner with using her favourite fruit.
As dusk set in I suggested a late shopping expedition into Cleethorpes. Once again I turned a ‘no’ into a yes persuading her that we would be able to park right outside the Frozen Food shop. Once inside I knew I had backed a winner as we came across an old face that Maureen is particularly fond of. Lisa was lovely with Maureen and kept her arm around her as they chatted on the banks of the freezers. I am pretty sure Lisa’s speech difficulties bring back happy memories of one of Maureen’s aunties who was deaf and dumb.
I am not intending to get carried away with the positive signs from yesterday: one swallow does not make a summer. It’s a case once again of Maureen’s advice of ‘slowly, slowly catchee monkey’ and if I keep my nerve our journey might become a little brighter than it has been for a while.
As night followed day I got a stark reminder that Mrs Dementia is never far away. Maureen appeared at the top of the stairs at 11.15pm as I sat at the keyboard. She had woken from napping on the sofa and was worried that she is late for school or some other appointment. I did my best to reassure her that it is Saturday night and she hasn’t missed anything. Mrs Dementia is struggling to make sense of her world and stared at me in disbelief – I don’t think she knew who I was.
My efforts to persuade Mrs Dementia that it is time for bed fail. She is very unpleasant and dismissive of any of my suggestion to help. She decided to spend the night on the sofa: I eventually left her to it and bedded down in the spare room. As I finish this post I have no idea if I’ll be dealing with Maureen, or Mrs Dementia, when the woman in our lounge eventually rises from the sofa.
I think I’ve been kidding myself for the last few weeks. My view was that if I provided additional support to Maureen she would get through a rough patch that she seemed to be going through. What I am failing to accept is that dementia is a progressive condition that saps the life out of all involved. I need to take a fresh look at our lives and find a practical way forward.
In my efforts to support Maureen I’m trying to compensate for her dwindling functional capacity by doing things for her. This is counter-productive and is deskilling her. The fact that it is quicker for me to do things is not the point. I need to sit back as she struggles to find the missing whatever: rather run to her rescue. The Celebrity Chef needs to involve her in choosing and creating meals. It’s amazing how I have forgotten ‘use it or lose it’ in striving to have a peaceful life. Waiting on Maureen hand and foot is accpeting a ‘sick mentality’ where she can’t do this and that because of her condition.
I also need to back-track on the revised arrangements for carer support. Reducing ‘sits’ down to two hours would be a mistake: they need to be elongated rather than shortened. I need more time for myself not less – staying in whilst carers are here is not helping anyone. My life alongside being a Care Partner is my responsibility: I need to create it!
It will take a while to get the new regime into place and I will have to take any negative reactions from Maureen on the chin and plod on. ‘All Change’ as they say when you get to the end of part of your journey.
I’m an armchair supporter of the Sky Blues these days. To be perfectly honest I wouldn’t pay to watch professional footballers as they are overpaid Prima Donnas. Coventry City are on featured Sky One tonight playing Peterborough and it is a rare chance to see my team in action. Unfortunately, we don’t have that channel on our T V so I need to find a local venue where I can watch the match
Maureen remains tired and confused today. It wouldn’t be safe to leave her to her own devices for a couple of hours this evening. Fortunately, Clarice has agreed to come round and sit with her while I go out. I will make it a fait accompli; collect Clarice and bring her round. If I gave Maureen the choice she would say that she is quite safe to be left on her own: those days have gone!
Yesterday was a good day with lots of positive developments. When I look back it is a day to count my blessings for the great support we receive from so many quarters.
Early in the morning I discovered something of great interest in my birthplace and promptly booked my place. It will good to be back in Coventry at the Organic Garden Centre to see how the outside world can be used to have a positive impact on dementia. We have a lovely garden and are surrounded by lots of lots of places where we can walk. Now I have an opportunity to learn how we can build cognitive stimulation into taking fresh air. .
I caught Mel my Admiral Nurse shortly after she clocked in. We chatted for some time about the need for Maureen’s referral to the Memory Service to be steered to the Home Treatment Team. we also talked of the progressive nature of Maureen’s condition and the need for me to find additional opportunities for regeneration.
Maureen’s son arrived in time for me to have a further consultation with my physio about the tear in my rotator cuff. Oliver gave me further coaching on my exercise regime and I feel confident I can avoid the surgeon’s scalpel.
I knew that Maureen would need to rest following her sons visit after a busy couple of hours catching up. This gave me 8 hours of welcome time-out to do my own thing around the house and catch up with relatives on the phone.
I popped next door to have a chat with Mike and Kate about how things were going. It’s amazing how time flies with dementia in your lives I hadn’t realised that Kate had not been updated on how things were going since Sunday. Mike is always in the garage on his exercise bike in the morning and we usually have a word or two.
I managed a good chat with my sister before I called on two experienced hands in the field of dementia. Maureen’s aunty Clarice and my sister in law Jean are always willing to share their experiences and help mentor our journey. Then I watched Steven Segal sort out the bad guys and either dropped off or got taken up in Maureen surfacing at 11pm to miss his final move in sorting out a drugs cartel
I seem to have got better at encouraging her to go back to bed when she thinks it’s morning and eventually tucked her up around midnight. This followed a period of easing her through her confusion of not knowing where she was or who lived here: something that is always rampant when her sons visit.
It’s a lovely bright morning in Cleethorpes. The sky is blue and the sun is shining : it’s going to be really ‘Good Friday’ with the Sky Blues on T V this evening.
To finish this post there is a little Easter present for my cyber friend Kate Swaffer:
Neuropathy Nightmare 