There is a fundamental change in Maureen’s presentation and assessment is needed.
My priority is to minimise distress and thankfully she recognises my voice.
I still have this dreadful infection and am singing in a croaky voice.
Thank goodness for paracetamol honey and lemon juice.
Back to hand holding and waiting for the return call.
Over and out!
I am feeling much worse than yesterday as it becomes a struggle to stay on my feet.
Maureen may well be just the same as when she is not sleeping her confusion is rampant.
Thank goodness Lynne will be here at noon to prepare some lunch.
I have asked for a tea time call to help us get through the day.
We never thought about times like this when we ran off to the seaside together!.
Formal processes are underway about Maureen’s appalling experiences in Care Homes.
It would be unfair to detail our concerns before they have been fully investigated.
I have distracted and redirected all day with little impact.
Maureen still feels betrayed: that I have conspired with other to lock her away.
She does not accept a promise that from now on they will not separate us!
Maureen asserted throughout yesterday her right to remain at home. Despite various attempts to ease her into Ashgrove Care Home, she was adamant that she wanted to stay in her own home. As she said: ‘I’ve done nothing wrong, I’m not a criminal: you can’t make me go anywhere’. She also said that if I was struggling to sleep, I was the one who needed help and should move out to allow her own family to look after her.
There is no doubt that Maureen remains a very intelligent woman, able to use logic and rational thought. Her arguments for staying in her own home were perfectly understandable considering her experience of Care Homes. I had to remove her from Ladysmith Road bruised and broken on her birthday. She escaped from Royal Court and Ashgrove as she hates being locked in anywhere. Her faltering short-term memory means that she can’t remember the details of her incarceration but the scars are there in her emotional memory.
Maureen was afraid to go into a deep sleep last night for fear of being taken away. She is now worried if I’m out of sight. Therefore, we have to be very careful this morning to ensure that our next moves don’t push her over the edge. Despite being exhausted I intend to help Maureen hold the line on staying in her own home. There is no simple solution to the current impasse but I will not collude with any plans to deprive my wife of her liberty.
Although I’m exhausted and would love to be enjoying planned respite, I intend to help Maureen hold the line on staying in her own home. There is no simple solution to the current impasse but I will not collude with any plans to deprive my wife of her liberty.
Gary our social worker will be here this morning. It is his turn to try to move things forward. Sue from the Home Treatment Team could get no change out of Maureen yesterday, despite her success a few weeks ago. After more than half an hour she recommended backing off to avoid further distress. As Sue left, she commented how much Maureen had deteriorated since her last visit: don’t I know it!
Maureen woke at 3 am convinced that I have kidnapped her and brought her to this cottage against her will. She has been in tears struggling to understand my thoughtless behaviour. It’s all hands on deck at the moment as I try to reassure her she is safe and will be able to go ‘home’ soon.
There is no point whatsoever in giving Maureen any bad news: she has enough sadness in her life dealing with dementia. Today is a particularly significant day in both of our lives. It is Esme, my youngest daughter’s 29th birthday. I have already upheld my tradition and sung happy birthday to her in her absence – I do this whenever I remember it is someone’s birthday There is no point in reminding Maureen that Esme wants nothing to do with me at the moment, and wouldn’t appreciate any form of contact. However, when I get a quiet moment I won’t be able to resist listening to ‘Groovy Kind Of Love’ to remind myself of dancing with Esme in my arms when she was a baby:
Today is also the funeral of one of Maureen’s oldest friends. When I received the sad news of Janet’s passing last week I mentioned our circumstances to her son and explained that attending the funeral was not an option. There is no point in taking Maureen to events that would cause confusion, and lead to distress .
Maureen’s youngest son is visiting at the weekend. It is his birthday a few days later. He is a Sunderland supporter, and we managed to snap up an appropriate polo shirt earlier in the year. How fortunate that we will be able to have an early celebration of his birthday without reminding Maureen that she no longer has any concept of time, place or person.
I’m meeting Mel my Admiral Nurse this morning. I need to chat over my responses to Maureen ‘wanting to go home’. I also skimmed an interesting article yesterday that suggested trying to improve short-term memory is futile and focusing on the past might be more productive. Such discussions will be academic unless I schedule regular respite into my schedule. If I don’t look after my own well-being Maureen’s care will be taken out of my hands!
We had a lovely morning yesterday as Chloe (Girl Monday) worked her magic with Maureen as I stayed in the background. My phone call to the Alzheimer’s Society was really productive: confirming that it was the week that ‘Singing For The Brain’ was on, and additional support that they could offer. Maureen seemed really keen to pop into the Memorial Hall to see if singing with other people was to our liking. However, she soon made it clear that she was struggling in new surroundings. At first, she refused to join in with any of the numbers; either making fun of what was going on or ridiculing what was being sung with her body language or adding naughty lines to songs. We took our leave at the interval and then things became really challenging.
At first, she refused to join in with any of the numbers; either making fun of what was going including ridiculing what was being sung with her body language. She also added naughty lines to songs, especially to Love and Marriage – where she made it clear what she thought of such unions. Consequently, we took our leave at the interval, and then things became really challenging.
The vitriol began as soon as we were out of earshot of our fellow singers. It continued for some time, along with confusion about who I was and where we lived. When we arrived home Maureen was reluctant to accompany me into the house, so I made out I was ‘dropping her off’ and returning to my own home. I took my leave and popped next door to chat to neighbours. I returned a short while later to an empty house.
It took me a few minutes to track Maureen down walking on her normal route towards the Country Park. She reluctantly agreed to join me ‘in her car, which I had stolen once again’. When we returned home she refused to get out of the car. Despite my best efforts, she chose to remain in the car and it took two social workers to move her from the car to the house.
Maureen’s story to my ‘rescue rangers’, who had responded promptly to my call for help, was that she was ‘waiting for Paul to come home’. Once in the house tea settled the situation, and Maureen continued to confabulate as she gave our visitors her version of the events of the afternoon. Things went relatively smoothly for the rest of the evening, with Maureen eating a hearty meal and attempting to help tidy up debris the kitchen. She was clearly tired after a busy day without our normal siesta. When she took to the sofa shortly after 7 pm I thought that would be it for the night – but no such luck.
Maureen woke around 8 pm feeling cold and went back to sleep quickly after finding some additional clothing. She was awake again at 1.30 am determined to light up the house as she went on some sort of mission. Her confusion was paramount as I tried to convince her that more sleep for us both would be a good idea. Half an hour later she declined my suggestion of moving upstairs to sleep; making it quite clear that she normally slept on the sofa.
I am tired and disappointed by the events of the last 12 hours or so. I’m drafting this at a ridiculous hour to try to clear my mind as part of my strategy to get more sleep. It seems likely that ‘Rocking The Boat’ has upset the apple cart. However, if I get You Are My Sunshine on YouTube this morning a new day will have begun. If I call up the right numbers I might even get Maureen on the dance floor: providing she knows who I am!
Footnote: I managed to sleep for another couple of hours after drafting the above passages, and returned to the lounge/bedroom after a bathroom visit to hear Maureen singing ‘Good morning, good morning’. It was a relief to hear my ‘Singer Lady’ (as I often call her), in such good voice. It will be interesting to see if she shifts her position on the best place to do our singing in the next couple of weeks. I wouldn’t dare to predict if yesterday was our one and only appearance at ‘Singing For The Brain’. What I am sure about is that I cannot allow the apathy of ‘Prescribed Disengagement’ (Swaffer)to slip into our lives. Therefore, I have to take up the challenge of moving our dancing from the kitchen and lounge back to the Church Hall – watch this space!
A story familiar to all Care Partners:
Once Maureen’s dementia became obvious Iwona our local pharmacist stressed the importance of Do Not Absorb: to ignore any vitriol that comes in my direction. I think I might just pop in and see her shortly for some ‘medication’ to help me boost my DNA this morning.
Maureen’s vitriol began yesterday afternoon and resumed at midnight. She went on walkabouts in the afternoon so I grabbed my bike to track her down. When I caught up with her a few streets away she ignored me as she shuffled along in her slippers. As I trailed her she eventually told me ‘she needed to get back home to inform the police that her car had been stolen’. It took me an hour to shepherd her in the direction of home, then a quick dash to pick up the car : ‘the thief’ then drove her the short distance home.
Maureen was tired from her afternoon hike so she went to bed around 8 pm. She woke at midnight – shouting for help because ‘someone was on a ladder at her bedroom window’. My efforts to help were met with derision and questions about my ability to keep her safe. A couple of hours later she was awake again concerned that ‘someone had stolen her clothes and she had nothing to wear’.
Yesterday was not a good day by any stretch of the imagination; with Maureen’s presentation once again a cause for concern. Lack of appropriate personnel at the meeting to discuss requested psychological support means that it is likely to be a few weeks before that issue can be progressed.
One positive this morning is that my sister and her husband are visiting this area for the weekend. They would give any Care Partner a boost; with Rob firmly grounded in the real world of engineering, and Jill dementia friendly from her years of supporting mum.
The going got particularly tough last night, as it has been on several occasions, in the last week. Maureen was lambasting me for the appalling state of this ‘Care Home’. She spent a large part of the day trying to do up a broken zip on her favourite cardigan frequently expressing her frustration that ‘this place is rubbish’ She exclaimed that: ‘everywhere in the house stinks, and there is nowhere for her to sleep in this dump’.
It was one of those occasions where I had to take several deep breaths, walk away, and hope that things would be a little different with the passing of time.
Maureen returned to the attack at 4 am this morning; blasting me with both barrels for letting other people steal her clothes. I tried several Compassionate Communication strategies without success; eventually walked away and left her to it. YouTube became my escape from the ongoing rant and I chose songs to reflect the struggle when Mrs Dementia is at full throttle. If you visit my Good Music page you will hear what I mean
Unfortunately, we have new kids (carers) on the block on Tuesday and Thursday. I’m hoping that the Care Agency will be able to switch Hilary into one of those slots as Maureen really enjoyed her company last week – two new faces in a week will not help at all
Dianne, one of our carers, has agreed to do a long shift on Wednesday so I can visit family in Coventry. If my sleep pattern continues to improve I might even drive down and call in at a branch of Leading Labels, near Lincoln, to see if I can find a replacement cardigan in the same colour as the one that is damaged. However, I’m not naive enough to expect any praise if I manage to find another cardigan. The more likely scenario it is that I will be accused of desertion: compassion and empathy went out of the window here as soon as dementia took its toll on Maureen’s personality.
Dementia: Sharing The Good Times 