Maureen is very shaky this morning. She is more confused than ever and unsteady on her feet. A small amount of lorazepam has given her much needed rest and some respite from her delusions.
I’m currently reviewing our situation.
Tag Archives: Confusion
Dementia: It’s All Been Worth It
The struggles of the last few months all seemed worthwhile yesterday when our visitors from Occupational Therapy made it clear that they supported our approach to ‘seeking the good life’. They were impressed with our extension and how we have attempted to prepare for what might lie ahead. They also supported how I attempt to resolve issues of independence and safety. Once we have made a couple of minor changes to our set up OT feel that we have addressed all predictable risks.
Maureen was in exceptional Hostess Mode all day. Her intelligence and humour shone through as she showed OT the ropes. She continued in a similar vein when in the company of my sister and brother in law. In fact, she was in such good form that there were occasions when some observers may have questioned her diagnosis of dementia.
Maureen has paid a heavy price for the overstimulation that I subjected her to yesterday. She is now hyperactive and has not slept all night. I should have left things as they were with my sister visiting today. I’m paying a small price for my naivety as I try to support a very confused wife this morning.
We appear to be on a Cruise Ship again this morning. I hope Maureen is not too disappointed when we dock at Grimsby: we couldn’t possibly pull into Cleethorpes with the tide going out!
Dementia: Coaching Needed!
A frequent lack of cognition, paranoia, hallucinations, and anger are now constant features of Maureen’s presentation. Last night was a belter. The old chestnut of finding the toilet and how to use it reappeared. This was followed by a diatribe on my misdemeanors and shortcomings. Then comfort was sought as I slept in the spare room as Maureen believed ‘the girls were gassing her as they didn’t like her’. A short while afterward I was forcefully told ‘I was not doing’my job’ as I encouraged her to get her own drink of water.
Maureen’s presentation is seen as par for the course for mixed dementia so a Care Coordinator is not needed. Yet Trazodone has been prescribed ‘to make my life easier’. Following my reluctance to administer, a planned admission to an Acute Mental Health Unit – the Konar Suite – was on the cards. Now that is not seen as the way forward we are left with the Best Interest Meeting on Maureen’s future care and accommodation in four weeks time.
Our Key Worker is visiting this afternoon and I will ask him to clarify who is responsible for coaching me on how to resolve the recurrent ongoing challenges. A meeting in four weeks time may be helpful to those who are concerned with the Mental Capacity Act but I need mentorship now!
Someone who doesn’t need coaching is a new carer we had yesterday: she was excellent from the time she took Maureen’s arm when she met us on the street. Maureen fell asleep shortly after she was nursed home and new Gir Saturday/ Sunday helped me to mop up from the flood that Maureen had caused by leaving the tap on with the plug in a sink. Just another occasion when I’m wise after the event: plugs and sinks don’t mix when dementia is around!
Dementia: Diagnosis Needed
Posted at 4 am:
Maureen needs to be seen by her GP this morning after another dreadful night.
She had just laid down on the sofa after ‘being on a boat’ for the last five hours.
She is awake now: looking for her mum and frightened about being left on her own
I am asking the GP’s advice on how to manage her current presentation.
I am also formally requesting a review of her diagnosis .
Is her dementia predominantly vascular, Alzheimer’s or something else?
A Best Interest Meeting in a month’s time is no help to me in the middle of the night.
We also both need to know if our coughs and colds are anything more sinister!
Dementia: Good News Week
Two really good things happened last week. Firstly, our longest serving carer had a little girl: we understand mother and child are well. Secondly, her replacement managed to wash Maureen’s hair and give her a full body wash. It looks like the ‘new kid on the block’ is now Maureen’s hairdresser. Consequently, I have withdrawn from today’s Teepa Snow Webinar on Bathing Issues as personal care needs to be in the safe hands of ‘the ladies’. My focus needs to be on the completion of our renovations and securing adequate coaching.
The good news for the forthcoming week is that our decorator will be on site today and a joiner later in the week. I would estimate that we are still a couple of weeks away from completion; with further plumbing and electrical work pending.
There is still uncertainty over the coaching I’m legitimately entitled to as Maureen’s Care Partner and whether Maureen should have a Care Coordinator. Clarification on these issues may not take place until the Best Interest Meeting on the 3rd of November. In the mean time my Admiral Nurse is doing her best to fill in the gaps in available support.
Maureen is still struglling with her upper underwear and trying all sorts of permutations for support. I’m hoping that Girl Monday will be able to help her with this today and she will gain some respite from the attendant distress. I summoned help on that front last night but by the time night carers arrived Maureen had dropped off.
We had another ‘visitor’ during the early hours when Maureen believed her mum was beside her on the sofa. She seemed to gain great comfort from believing her mum was close at hand: some hallucinations have a positive impact!
There is some bad news this morning: my infection is not letting up; my nose is dripping like a tap, I have a persistent cough along with discomfort in my chest, and my legs feel like jelly. I have already messaged our Key Worker that additional support may be needed if I am to keep Maureen safe and sound over the next few days.
Dementia: New Land Ahead!
After a long three-month journey, there is new land ahead:
- I had a positive meeting with our Key Worker yesterday morning.
- My Admiral Nurse will visit us tomorrow.
- I have a seven-hour break on Thursday.
- There will be regular seven-hour breaks on Wednesday’s, from next week
- I have signed up for Monday’s Teepa Snow Webinar on how to solve bathing problems.
- Our new shower room, part of our extension, will be plumbed in on Friday.
- Maureen and I slept together last night for over eight hours.
Any extension to your dwelling is an inevitable stressor in your life. The trials and tribulations of the last 12 weeks all became worthwhile when I saw Maureen smiling as she stood in the Sun Room yesterday. When she talked about how we could sit out there in the winter I couldn’t have asked for more!
There certainly is New Land Ahead: watch this space!
As I draw this post to a close Maureen has just woken up frightened that she had been left alone with the baby. She says she is worried that the baby is too cold. I have helped her to warm our offspring up and reassured her the little fellow is now safely asleep. It is so helpful that I have been able to talk about these episodes with my Admiral Nurse and now have some idea how to reassure Maureen when they occur!
Dementia: More Help Needed
Posted at 3 am:
Our Anniversary Celebrations went well with a day of togetherness. We didn’t do anything special but I tried to spoil my Bride with lots of TLC. She loved the evening concert with Andre Reui and despite my best efforts could not understand the consequences of a poor signal from Talk Talk.
Maureen was reluctant to join me for ‘the honeymoon’ and chose to remain downstairs, The Baby Alarm clicked into action at midnight with incessant sobbing from our lounge. When I joined her downstairs, Maureen was convinced that they were chopping the heads off her relatives. She showed me photographs where she believed the heads were missing. It took me quite some time to console her and persuade her to resume lying on the couch. Less than two hours later she was awake again.
As I lay on the single bed in our lounge, I was gently awoken by my wife who was anxious to attend to my needs. Apparently, I was unwell and she was keen to make sure I had everything I needed. My plea to be allowed to go back to sleep went unheeded and she continued to return to my side after walking around the house.
There are aspects of Maureen’s presentation at the moment that I’m choosing not to share on this Blog. From my point of view, they are very concerning and I need to discuss such matters with appropriate professional staff.
My plea at the moment is to reinstate support that used to be available in my hour of need. I have never understood the wisdom of withdrawing Maureen’s Care Coordinator or removing my access to a Support Worker from the Alzheimer’s Society.
This is a time when I need more support not less!
Dementia: Time For Change
George Rook made a good point in his <BLOG> yesterday: there need to be some radical changes in how we approach dementia in this country. There is only one thing I would add to George’s excellent post: DEMENTIA IS NOT A MENTAL HEALTH CONDITION!
Dementia is concerned with changes in the brain it is not caused by what is going on in the mind. In my opinion, the sooner we remove dementia from under the umbrella of mental health, with its predominantly medical model the better!
We had a tough day here yesterday with two electricians with us all day. I breathed a sigh of relief to hear that rewiring is not needed but more work is needed before we are safe and sound. Maureen found it difficult to understand why power was being switched on and off throughout the day. Her response varied from; interacting with ‘the men’, to wanting to go back to the peace and quiet of her ‘own home’. Her performance in the evening was amazing as she sang and danced to an Andre Rieu concert on YouTube for over an hour!
Dementia: ‘They All Know Us’
I often adopt a Citizen Khan approach to our life: frequently telling Maureen ‘they all know us’. Once again the locals came to my rescue yesterday afternoon when Maureen gave me the slip. It was another one of those farcical events that can leave you bent over with laughter when you look back.
I had been having a Sunday afternoon snooze and woke up to find Maureen had done a runner. When I made it to the front door she was walking by and I hailed her with ‘hello Blondie’ she responded with ‘I was trying to remember where you lived’ and walked on. I stopped to talk to a neighbour as Maureen started on a familiar route around a local Court. Then I walked on to catch her as she completed her circuit but no Maureen. I checked with my neighbour but she had not passed him as he tended his front garden so I retraced my steps thinking she may have gone into someone’s garden. A few minutes later I gathered what had happened when my neighbour said she was in a Close opposite our house.
Maureen had obviously doubled back and that was why she had not met me at the end of the Court. Then she had gone back towards our house and ended up in the Close. When I found her she was on the arm of a woman who lives in a bungalow opposite our house. She has been kind enough to let us park our car on her drive while skips have taken up our normal parking space. To show our thanks for her kindness I invited our neighbour in for a cup of tea and she stayed and chatted for a while.
It is so helpful that our neighbours know us and are aware of Maureen’s condition. I always know if she slips out some kind soul will be on her case within minutes to keep her safe and sound as they usher her back home.
Dementia: Too Much Pressure
Posted at 3.30 am
Today’s music is particularly pertinent:
Our house is now a complete mess: nothing like the order that Maureen has lived in all of her life. We emptied our dining room so the walls and ceiling could be reskimmed yesterday evening. The bookcase that Maureen has claimed as her own has been emptied: some of her most precious belongings are in boxes all over the house. Little wonder she doesn’t know where she is and wants to run away: she is completely lost in her surroundings.
The dining room now needs to be left to sweat – dry out. Chaos will reign in our household for the next few days. This will be intensified on Monday when plumbers will be here to begin kitting out our new shower room.
In two weeks time, the pressure will be off and a semblance of normality will return to our household. We will then welcome visitors with open arms and be able to offer them somewhere to stay as the Sun Room doubles as a self-contained flatlet!
Neuropathy Nightmare 