Any perusal of this Blog will lead the reader to conclude the Maureen’s presentation is changing as is her personality: no surprise there dementia is a progressive condition. Routine and consistency is the very thing she needs at the moment and it is conspicuous by its absence. My suggestions on how we might improve things are listed below as bullet points:
Carers need to be consistent in their approach.
Carers need to meet to review their input and Maureen’s presentation.
I need to improve my sleep pattern.
We need to address the shortcomings of the biomedical model.
Family members need to increase their level of phone contact.
Family members need to schedule frequent visits.
My Blog becomes the vehicle for updating interested parties on Maureen’s presentation.
I am exhausted by the events of the weekend. My sleep pattern is very poor putting my mental well-being at risk. No-one could sustain my current level of input. Improving the co-ordination between all parties would be a helpful step forward.
It looks like taking Maureen back to her childhood home has upset the apple cart and may not have been a good idea after all. She slept for a long time after her morning of visitingfamiliar ground and busking. In between she had periods of upset – wanting to go home. There were times when she looked completely lost in her surroundings and I had to guide her where to go when it was time for lunch. She also asked me ‘if I always ate in this cafe as the tea was not what she normally drank’.
She got really mixed up late evening when she went to make a cup of tea. After she had been gone for a while I checked up on her progress in the kitchen. She had made two cups of tea and asked if ‘I would take one in for grandad’. The England opening match in the European Championship failed to impress her and she was asleep again when Russia equalised.
Maureen awoke when I closed windows in the lounge as I prepared to go to bed. She said she wanted to stay on the sofa as she was nice and comfortable. She mentioned she was going to write to her mum about a shortage of blankets. When I pulled her granddaughter’s quilt from behind the sofa she asked me where Maeve was. When I told her Maeve was in Coventry she said she wanted to go to see her.
Around 11.30 pm I could heard Maureen wailing on the Baby Monitor. I rushed downstairs to comfort her and she told me that she was ‘going to go back to Nottingham in the morning to live with her mum’. I eventually got her to go upstairs but she noticed I hadn’t brought up her usual cup of water to keep her mouth moist if she woke during the night. Unfortunately, I stayed in bed and let her go down to find a cup of water. As she had been gone for a long time so I went down to see what she was doing.
It took me a while to find her as she’d opened the patio door and was standing in the garden. She told me she was ‘looking for her mum’. She then returned to our bedroom and shut the door. I opened it cautiously and found her looking out of the window. She told me that ‘a policeman across the road was now watching out for her car’. I said ‘I was pleased’ and she got into bed fully clothed, as she often does, declining to get under the quilt preferring the comfort of a blanket that she has when she sleeps on the sofa.
Maureen was awake at 1.45 pm trying to make sense of things. She told me ‘I was stupid for telling her that no-one else lived here’ as she wandered from room to room looking for other people. She then told me ‘to stop speaking in that silly American drawl’. It took some time before she settled on sleeping downstairs on the sofa warning me ‘not to wake her’. Unfortunately I had to get up then as the Baby Monitor was switched off and she has found out how to open the patio doors and get outside. I’ll have to try to catch up on sleep during that day because I’ve had none tonight.
As I tidy up the kitchen at 4 am Maureen is on the move again. She declines a cup of tea saying she’ll make one when she wants one. Then she announces ‘there are crooks and there are crooks who steal from their friends’ as she marches about the house looking for something. She addresses me as someone who works here rather than her husband. Which reminds me when we came across the busker yesterday he was singing: ‘You Don’t Know Me’ – how profound and one of Willie’s numbers:
Maureen has taken the opportunity of occupying the marital bedroom while it is vacant. She has thrown my pillows out of the bed and is sleeping in a central position. It looks like I’d better retreat to the spare bedroom for a while as that deep seated fear of men in her bed has returned: we all know the origins of that concern. How sad it is that when she sleeps alone she can wake at any time totally distraught; fearing she has been deserted and locked in the house. Fortunately, I’ve managed to make sure the Baby Monitor is switched on so I can be with her if the need arises.
At 5.45 Maureen is on the move gain looking for a cardigan that her mother embriodered for her. This is something I’ve never heard of before and I think she means a cardigan that I recently bought for her. I’m wrong again she is talking of the cover for the continental quilt that we bought some time ago which is on the bed inside out causing confusion.
Maureen woke again at 7.15 as I was having my first an hour of shuteye. She tells me she ‘just wants to get better’ and welcomed me lying beside her on our bed. I hold her tight and eventually sing some silly songs which are warmly appreciated. After I finish drafting this post(something I’ve beeen doing on and off for quite some time) I’m on duty as ‘Tea Boy’ but my guess is she will be asleep before I reappear with the goods.
I’m worn by the events of the last 12 hours: it’s been relentless. I plan may to ask the Care Agency for a hour or two of carer time if it is the weekend that our regulars work. I would guess professional advice, on Monday, will be to call off plans to visit Coventry next weekend and try to ‘settle her’ as the saying goes. It’s a miserable old day in Cleethorpes this morning so we will have an easy day not straying far from the house: which will probably never be home as far as Maureen is concerned!
I had a much needed siesta yesterday afternoon sleeping well for a couple of hours. Maureen appeared at the bedroom door around 5 pm asking if I would like a cup of tea. Hoping it was code for a cuddle I dozed on for a while longer. When I awoke and called out her name she said I wondered where you were.
I went downstairs to find a rather wet and bedraggled looking wife who had been looking for me in the pouring rain. I assumed my role as ‘Tea Boy’ and put the kettle on while Maureen dried off. I congratulated her once again on suggesting the additional radiator in the utility room which was now needed as a drying area for her soaked clothing.
Once tea was served we chatted again about moving home. Maureen said she liked living in Cleethorpes and saw little advantage of moving nearer to the kids. After a light tea we spent a pleasant hour listening to records as we tidied up the debris from our meal.
We are both hoping this wet spell will come to a close shortly but I haven’t had to water the garden tonight. Maureen car is now on the drive again well shod and ready for an outing tomorrow: nearby Louth is one possibility.
‘Brother Bob’ would have a word or two to say about my experience yesterday afternoon:
I have woken this morning in a great deal of pain in my shoulders: an early morning shower has helped me but not Maureen. Sleep disturbance has been a pain in our lives in the 20 or so years we have been together (there I go again I’m not exactly sure how long). It is fairly easy for me to sort out this memory issue by searching for documentation that will confirm all sorts of things. Maureen’s memory issues are not as simple to resolve and this morning she has returned to the familiar questions of ‘where are the others and why are we living here’. My answers clearly make no sense to her as vascular changes mean that she simply can’t remember such detail or the same answers I give every morning.
Susan Macaulay has commented on my previous post encouraging me to keep telling it as it is: that will always be the mission of this Blog. My change of focus is about life beginning at seventy and when we can’t remember something it is not the end of the world. We both need a Memory Bank to remind us of all sorts of things, otherwise we will forget important aspects of our life together. Minimal work has already begun on this front: sorting out our wedding photographs and finding our Wedding Certificate may well be a helpful next step
We missed a call from Ian, Maureen’s eldest son, yesterday as I switch the phone off when we have a siesta. He left a message to say that he would ring back this morning. Maureen says she has no recollection of ever speaking to him on the phone. She also doesn’t remember that we spent a couple of hours with him a few weeks ago when we visited Coventry.
I realise that Maureen will have forgotten she has spoken to Ian shortly after she has put the phone down. It is also likely that increased contact from her sons will not address the fact that she feels I’m her only friend: she isn’t sure if I’m her husband half the time. However, as vascular damage continues increased contact from family and friends is vital. Maureen’s emotional memory remains intact and we all have to work on the feel good factor: it doesn’t matter if she can’t remember what brought about her positive feelings.
We have both decided to continue with further de-cluttering today. It’s a bit damp outside this morning so we will need a wet weather programme until it brightens up. Once it is fit to be outside there’s work to be done in the garden to make sure that yesterday’s profuse watering hasn’t taken a toll on our plants. The beauty of being 70 is being your own boss you can plan your own day and take breaks whenever you decide to take the weight off your feet or rest your eyes.
Following my morning tai chi and meditation I just overheard Maureen whisper ‘I can go anywhere I like’: what a beautiful start to the day as the butterfly begins to emerge from the chrysalis.
Postscipt: Around 8.30 am this morning I found the key to our back door on the front drive. I have my own bunch of keys, Maureen tends to take keys out of doors and hold onto them for fear of being locked in. I’m going to have to even more vigilant in future when things go missing and widen my search beyond Maureen’s internal hidey holes.
Maureen and I had a lovely day out in Nottingham yesterday. My suggestion that her brother needed cheering up raised my nurturing wife from her bed and we were on our way by 10 am. Unfortunately, we had to return home 15 minutes later as I had topped up the car with petrol and left my wallet at home. I also did my usual trick as we approached our destination and took a wrong turning which delayed our arrival even further.
Dianne, our sister in law, provided a beautiful lunch which eased our introduction to new surroundings. It didn’t take me long to see that it had been worth an elongated journey on a hot day: brother and sister were soon back in the old routine.
After lunch we walked to a nearby park in beautiful sunshine. Once again the siblings were chattering away as we made our way around a Vintage Car Show. I was in my element as I stumbled across an Austin 1800 in mint condition and reminisced with the owner about my days on the shop-floor at British Leyland.
We decided to delay our departure from Nottingham until early evening when it was a little cooler. Maureen was obviously very tired on the homeward journey but we continued with the banter that we had enjoyed on our way to Nottingham. She took to the sofa shortly after we arrived home and was asleep almost as soon as she laid her head on a cushion. Around 10.30 pm I managed to ease her upstairs to sleep alone as she wanted a bed to herself because she was too hot.
Maureen awoke at 1pm very distressed and confused about where she was. Eventually she joined me in the spare room. Two hours later she was awake again crying that ‘she was in a madhouse where she didn’t know who was in bed with her and she wanted to go home and be with people she knew in her family’.
At around 6 am we have had a very positive conversation about ‘going home’ and being closer to our loved ones. Maureen has been a revelation saying ‘let’s not get carried away and rush into anything’. It is lovely to see my wife firmly in control using her intellect to appraise our situation. I wouldn’t be at all surprised if she didn’t outwit ‘Mrs Dementia’ one of these days and send her back to where she belongs: it might just be that there is something in ‘The P C Approach To Memory Loss’.
Yesterday was very challenging with marked fluctuations in Maureen’s presentation; particularly her mood. She slept for most of the morning and just about raised herself from the sofa before Charlotte our carer left. Clarice her aunty visited in the afternoon and I left them too it for an hour or so.
We gave Clarice a lift home calling in for some bedding plants on the way. Maureen became very hostile as Clarice and I gathered up our purchases and attempted to round Maureen up from wandering in the vicinity of the retail outlet.
Maureen declined Clarice’s invitation to have a cup of tea at her house. She wanted to accompany me to the wood yard to collect further items for repairing the fence. The prospect of more work on the fence led Maureen to show her frustration and remonstrate about me repairing our neighbour’s fence. It took a lot of time and patience to persuade Maureen get back in the car for the homeward journey.
Once home Maureen put her arms around me and thanked me for repairing the fence. After our evening meal Maureen became very sad about wanting to go home and missing her family. She was very distant for the remainder of the evening but surprisingly ‘livened up’ when we went to bed.
I think it isTeepa timeagain for yours truly. Her explanation of vascular dementia might just help me to understand a little more what might be going on here. Teepa also has some tips on how to handle wanting to go home and I’m hoping that I can find a post byAmazing Susan so I can revisit this issue tomorrow.
‘Mrs Dementia’ was rampant at 3.3o am this morning as Maureen thought she had been left behind as all the other residents in this Care Home had gone out on a trip. No matter what I said I couldn’t shift her from her fixation as she tried to put her imagined discrimination into context. She wondered if they hadn’t taken her because ‘her clothes were so shabby or because she had been a bad person’. The attack eventually focused on me ‘had I bought her; if I thought she was going to stay here I was wrong’. Even my teddy bear was removed from her bedroom and flung onto the bedside table beside me in the spare room. When I look back I had reaped my just reward from a selfish day yesterday.
I got carried away yesterday and almost forgot Maureen’s condition. For most of the day I neglected her needs as I pressed on repairing fence panels in our back garden. I chose to ignore her rampant confusion as she wandered around between our garden, the front pavement and our neighbours drive. She clearly hadn’t a clue what was going on even telling me that the police or a relative had just called in and I had missed their visit.
My neglect yesterday wasn’t restricted to my wife: it extended to Mike my neighbour. He can hardly stand due to a chronic condition but yet again I cajoled him to assist me in my endeavours until he ‘retired hurt’ exhausted. Kate his wife and her dog also entered the fray keeping Maureen safe as she wandered back and forth trying to make sense of what was going on.
If Maureen had been in a Care Home yesterday I would have been ‘up in arms’ about the behaviour of her carer (me) and complaint would have been filed: I would have been asserting that they needed to be put in Special Measures. Once gain I am tempted to visit a tattoo parlour and get them to put on my forehead and hand Maureen has dementia.
One of the few benefits of dementia is that I may get away with my selfish behaviour yesterday: with luck Maureen will have forgotten my neglect of her needs. From now on I need to have a new mantra; ‘potter or pay-up’. The time for DIY has gone; replacing a light bulb is fine but significant fence repairs are no longer viable – Maureen has dementia.
Two immediate priorities this morning: concentrate on being a good Tea Boy hopefully ‘at my new station’; seek out Mike and Kate and eat humble pie.
My meeting with Mel my Admiral Nurse on Friday reviewed my approach to Maureen’s current presentation and possible approaches to resolving my concerns:
I Don’t Know Who You Are
This is one of the issues that I find the most challenging as it can arise at any time of the day. It is of particular concern at bed-time or during the night when I’m told in no uncertain terms that i don’t belong in Maureen’s bed. This happened again last night around 1 am where i had to retreat into the spare room before I could settle Maureen from roaming around the house before she felt that she had somewhere that was safe for her to sleep. I intend to persevere with attempting to sleep beside Maureen for another week and withdraw to the spare room at appropriate times. I will also continue to mention in passing that we are husband and wife; possibly using the Wedding Album as reinforcement. It will also be interesting to see Maureen’s reaction if I join her in bed when I arrive as ‘Tea Boy’ when I bring her the first cuppa of the day: just did it and received a warm welcome. I realise I have to be a gentleman as Maureen thinks we’re only engaged!
Individual Cognitive Stimulation Therapy
Maureen is often saying that no-one has told her how to get her memory back. Mel has confirmed that Maureen is eligible to be placed on the waiting list for ICST. At an appropriate moment I will suggest that Maureen signs up to see if ICST is something that might be helpful to her.
My Daughter’s Birthday
It is Lisa my eldest daughter’s birthday mid-June and I want to stay overnight in Coventry to be with her on a special day and catch up with other members of my family. I intend to make this trip alone so I can have some quality time with my own family. It would be unfair to subject Maureen to such a busy schedule and carers along with her sons will ensure her well-being during my absence.
The following two issues were not discussed with Mel but are real positives for the week ahead:
Leisure Centre
I have begun to use some of the exercising equipment in the Gym to strengthen my upper body and my shoulder seems to be improving. I am also benefitting from the reopening of the Health Suite after refurbishment and enjoying the Spa and Sauna facilities once again.
Sleep
It is early days but my sleep pattern seems to be improving at long last. I am hopeful that a simple breathing meditation and not absorbing Maureen’s hostility continue to help me get back to sleep after early morning incidents.
We are at the mid-point of Dementia Awareness Week and it seems an appropriate time to take the bull by the horns and deal with two pressing issues. Firstly, I need to encourage visitors to understand the condition a little more and help them become more dementia friendly. Secondly, Maureen and I are both aware that her confusion about who I am is becoming more prevalent and needs to addressed
I made our day very busy yesterday by encouraging Maureen’s brother and his wife to come to Cleethorpes. That resulted in a challenging afternoon and evening with both of us being totally exhausted by the time they went back to spend the night with Clarice, Maureen’s Aunty. We went to bed together around 10 pm last night both worn out by the presence of three other people with their resultant constant conversation.
Around 3.30 am Maureen woke up and said she ‘didn’t know who I was’ and wanted me to leave the marital bed. I retired to the spare room with a throw away comment that ‘this was happening more frequently’. Maureen replied that she ‘didn’t understand why this was happening’ and suggested that we needed someone to help us on this front.
I will approach taking the bull by the horns with caution – compassionate confrontation comes to mind. It is time to discuss the best way forward with professional staff and fellow Care Partners: doing nothing is no longer an option.
Maureen has woken frequently from 1 am asking if it is time to get up. Beth Britton has just blogged on dementia and sleep disturbance: her post along with ideas from the Unforgettable Team has provoked thinking on a number of fronts as I try to improve our sleep patterns.
There is no Bank Holiday for Care Partners with our Agency because they are not able to provide ‘sits’ at these times: so Chloe was not with us yesterday. That meant disruption to our normal routine and vigilance from your truly throughout the day.
I made a mistake late afternoon that led to Maureen taking a significant nap until early evening. If I had helped her with a clothing crisis she may have not got upset and retired to bed. Then I made another error by not joining her in the ‘land of nod’ and have paid the price of exhaustion.
Today gives us a chance to get back into the old routine providing we can overcome the ‘no Mary syndrome’; with a new face here today and another on Thursday. Tomorrow throws up another vagary with my away day in Coventry when Maureen will be supported with wall to wall care around her son’s six hour stint. Just to be on the safe side I will check in with the Agency this morning to make sure everything is in hand. Things could have gone pear shaped with Natasha the Calls Coordinator for this area having terminated her employment on Friday.
There is a lot going on in the next few days and it could well take a few days until we settle back into the old routine: we should be so lucky with dementia calling the shots!
Postscript: I just caught Maureen a couple of streets away as she tried to scarper. There was i thinking she was happily putting the washing out and off she trotts: you need eyes in the back of your head with that woman.
Maureen’s presentation from 3 am this morning has been rather alarming. She woke me up saying that someone was in her car yet gain. I managed to console her with a cup of tea and empathy over her concerns. I left her downstairs sleeping on the sofa as I went back to bed.
At 6 am I heard the front door open and hot-footed it downstairs. Something of a lucky escape as I had not removed the key or set the bell on the door. Maureen looked terrified as she told me she didn’t know where she was. I offered to make her a cup of tea in an effort to help her get her bearings. It took half an hour or so before I was sure she knew who I was.
We had an early breakfast together and made idle chat. When I asked Maureen if she wanted any bread she offered to do the necessary. Her efforts were a sobering reminder of the incredible decline in her functional capacity. I had to perform a rescue operation to have anything that resembled a jam sandwich. Maureen has now gone back to sleep she seems distraught possibly by her awareness of her lack of functional ability.
The bell on the front door will now remain on as an early warning whenever it is opened. I think it is likely that Maureen has the back door key in her pocket. Mary today’s carer has just arrived and I need to hot-foot it to Argos to buy a sound and motion alarm to reduce potential risks a little further. That’s the easy one: I need help with how to address Maureen’s declining functional capacity – I’m well aware that the more I do for her the less she will be able to do
