Mental Health Nurse now who is under tremendous pressure to calm things down This is not looking good. An Assessment Centre may be the best option but needs Maureen’s consent.
Thanks for your support.
Tag Archives: Distress
Dementia: Willie Nelson To The Rescue
I seem to have grounded Maureen for now. We have Wille Nelson to thank for that as she asked me to print out the words of ‘No Mas Amor’ and that has been a turning point this morning:
She is now happily watching YouTube while we wait for the arrival of a Nurse Practitioner to establish if infection is behind her current presentation.
Thanks for all messages of support.
Update 10.45 am: Rapid Response nurses just arrived.
Dementia: Not Able To Blog
Things are too difficult here at the moment to Blog. Have asked for medical assistance ASAP: awaiting for return phone call.
Dementia: Between A Rock and A Hard Place
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!
Dementia: Honesty, Fear and Confusion
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..
Dementia: Looking Back: Looking Ahead (Week 12)
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 the Home 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.
Dementia: A Stranger In Our Midst
Gail our usual carer is on holiday this week. We have never met her replacement before and she has just told me she knows nothing about us. I have to work very quickly to make sure Maureen is not spooked by her. Imagine you have dementia and are about to be left with a stranger while your husband goes out. I cannot afford to cancel my appointment with our G P; I need to update him on the rate at which Maureen’s dementia is progressing.
I wonder what the point was of our social worker drawing up a Care Plan is if it never darkens the door of carers. It’s fortunate that Chloe and I developed a get to know us guide. All I have to do is find an opportunity to put it in front of the carer without Maureen spotting me.
This morning has the capacity to spook Maureen and cause need less distress. I wonder what it will take to make our Care Agency dementia friendly: it’s a scandal!
Dementia: ‘Terrors Of The Night’
It isn’t unusual for me to have problems with my sleep pattern. Early morning wakening has been a feature of my life for a long time: when I have been feeling low I have often struggled to sleep and faced ‘terrors of the night’ in many a dark hour. Fortunately through Buddhism I have learned to control my thinking and deal with bad vibes. Without such ‘teaching’ I would be in a real mess this morning with two real issues going round and round in my head.
Maureen was downstairs at 4 am this morning. I heard her fill the kettle then I listened: hoping that I heard the lid go down. I waited but no sound of a boiling kettle. Five minutes later Maureen returned upstairs with a cold drink of water. This only confirmed what Chloe, our carer, had seen yesterday that Maureen is no longer able to make herself a hot drink without support. When I went downstairs a little later I found that the kettle had not even been switched on.
The other thing that is paining me this morning is my left shoulder. I am aware I have a month to go before I see the surgeon. If the pain I’m feeling today is to continue surgery will be an attractive option. Anyone in their right mind would take the risk and hope that surgery does the trick.
There is little point in focusing on the need to be Maureen’s Tea Boy or if I will have my left arm in a sling for a few weeks. Kevin a friend of mine will be popping in to see us this morning and then we will be able to focus on the ‘real problems’ in our lives. We both support football teams that need just a little bit of luck. The ‘Geordie Boy’ needs more points to stay in the Premier League and this ‘Coventry Kid’s’ team need them to get back to the Championship. That wife of mine will say ‘Come On You Reds’ as she proudly tells everyone she is a Forest fan. The one thing we all have in common is we continue to be loyal to team of our birthplace. We also know football isn’t something worth losing sleep over and loyal people always continue to support each other through thick and thin.
Dementia: Thank Goodness For Gary Lineker
This post was written last night and will be circulated on Sunday Morning:
I’m glad I’ve got Match of the Day to watch in half an hour. Maureen has just denied me of my hat-trick as she wants the bed to herself as she is too hot to have me in beside her. Then just as she is getting ready for bed she tells me that there are men sitting in her car staring up at her. Just to put her mind at rest I went outside to assure her that there was no-one in the car. Unfortunately, she is still very unsettled as she believes that this has happened before and other people are using her car. She says she needs the car for Paul to drive her around as her dad can’t drive.
I had intended to go to bed early tonight but I need time to settle myself after seeing Maureen so frightened: Lineker is the man for that. Maureen hasn’t had a bad day but on occasions she has been sitting with a very worried look on her face. I have delicately tried to get her to share her thoughts and she has said she has forgotten what she is thinking about.
I’m hoping that the referral to the Memory Service will lead to involvement with the Home Treatment Team: when they were involved before I was impressed by their approach to dementia. Their involvement might give Maureen an opportunity to open up to professional staff about how she is feeling. That would be a preferable option to plying her with medication that would close down the areas of her brain that are already under attack from dementia.
Sunday 7 am continuation of this post:
I’m glad Match of the Day is repeated in half an hour’s time. I nodded off early in the programme last night and I need Gary this morning. The advice of ‘letting sleeping dogs lie’ has really hit home this morning. For the last hour or so Maureen has been trying to make sense of her memory loss. It started with thinking of writing to her mum and it has ended with what have I been doing for the last 16 years. The questions are coming thick and fast with all sorts of barbs thrown in and I have had to be at my best to keep my cool.
Maureen understands my addiction to football and may accept that I’m going downstairs to watch Premier League which is a relief after listening to the Sky Blues struggle yet again yesterday. Gary will also give me a break from the repeated enquiries that lead nowhere as Maureen just can’t remember and is bemused.
I’m hoping that additional support from the Home Treatment Team will help us through the next stage of our journey. We have now hit a very rough passage as we try to figure out a way forward.
Dementia: The Bed’s Too Big Without You
I think it safe to say I’ve put up a pretty good performance in bed the last couple of nights. Just past my 70th birthday I’ve been rather pleased with how things have gone. I seem to have worked out how to get things off to a good start: the first moves are important as we all know and I seem to have grasped the sort of thing that needs to follow.
Having spent several days establishing a place where men are not allowed, I now seemed to have found a route into Maureen’s bedroom. Last night followed the ritual of the previous night: no questions asked I just carried on as we have done for years. Once in bed I kept my distance and went with our normal ritual of ‘night, night sleep tight’. If my memory serves me right I think I managed to get a perfunctory peck on the lips -have to take things steady at my age. We were both extremely tired and dropped off as soon as our heads touched the pillow. In the early hours of the morning I knew I was in the right place.
Maureen was out of bed looking out of the window, she said something along the lines of she didn’t know where she was and needed to know she was in her bedroom with Paul. Then it was: ‘tell me that’s where I am and I will be ok’. How fortunate that I was lying in bed and able to make the right noises to help minimise her confusion. You can guess where I’ll be aiming to sleep from now on but like all of these occasions it will be a question of ‘don’t call me, I’ll call you’. Now where have I heard that before?
Postscript: As I post this Maureen has gone off on walkabouts without telling me. She nipped out when I thought she was in the back garden. It’s time to put my ‘money where my mouth is’ and leave her to roam alone for a while. If I go and find her straight away it will only confirm she is not safe to be out on her own and always needs a chaperone. My plan is to bump into if her is she is not back within the hour.
Great news she’s just come back after walking around the block. Who cares she’s in her slippers because there’s a smile on he face as she says she’s ‘not walking enough’. I knew locking her in wasn’t the way forward!
Dementia: Sharing The Good Times 