Maureen is going into Respite: she is having a break from carers coming into our house. We are going to see how things go by getting our home back: one of her constant pleas; along with getting her life back.
We are going to do things as a couple again rather than me scarpering to do my own thing as soon as carers walk through the door.
Maureen has been a revelation today boosted by contact from family and her husband at last understanding what she wants. Tomorrow’s blog will paint a very positive picture of what we have been doing today. I must dash to stop her washing up and putting her hands in water as they haven’t healed since that fall on Monday.
Dementia is giving Maureen an opportunity to ask ‘what about me?’ She is posing that question to me day after day. What she is asserting is that in my hour of need she has always been there for me: totally devoted to helping me to recover from periods of being unwell.
Maureen is also asking the same questions of her family. She says: ‘they don’t know where I am; have never been here; I can’t remember what some of them they look like’. She is saying ‘I raised you and where are you when I need you’.
We are fortunate that we live in an area where the biomedical model for dealing with dementia has been consigned to the history books. I witnessed first-hand the person centred model that is used here after I had summoned help from the Home Treatment team yesterday. Amanda was walking down the road holding Maureen’s hand trying to console her. Her colleague was talking to me at the end of our drive making the point that ‘we have to treat the person not the condition. She is part of a team who see Maureen’s environment as key in her presentation.
Maureen gave me a wonderful hug at the end of a trying day for her: once again she was pleased that I was listening to her concerns. Cleethorpes is a place of great sadness for her – our holiday romance at the sea side may need to be drawn to a close. She sits on a sofa where her daughter fell into her arms and told her devastating news that her life was drawing to a close. Her view as she thinks of Denise is through the ‘bars of her prison cell’ looking at Pat’s bungalow: a picture of sadness and loneliness. She told me yesterday that she longs to walk down the familiar streets of Bell Green where we used to live in Coventry.
Maureen is not ‘Sundowning’ she is lonely and disappointed by the behaviour of others: including me. She wants us close by in her hour of need: if I’m not in sight she is frightened.
Those who love Maureen can no longer afford to hide behind dementia being a progressive condition. I am pleased that my wife has the courage to ask ‘what about me’ and she is already aware of my response. Unfortunately, I cannot do this alone and other people need to step up to the plate and tell Maureen when they will be with her in her hour of need.
Postscript: A brief note of thanks to all family members who sent messages of support yesterday: from the Midlands, Royal Albert Hall and North bound trains. Things are hectic here at the moment all I can do is update you on my Blog.
Four women gave us excellent support yesterday. Melissa from the Home Treatment Team met me and made practical suggestions to improve our lives. Sue our Social Worker provided sound support on the phone. Mel my Admiral Nurse kept herself in the loop throughout the day with contact via E Mail. Katemy next door neighbour taxied us to the hospital at 10pm with Maureen streaming with blood after a fall.
Melissa made two salient points in response to my concerns about our situation. Firstly, we need a Carers Log of Maureen’s presentation to monitor the progression of her condition. Secondly, I need to address sleep deprivation as it put my mental health at risk. The immediate steps I am taking will be outlined on my Sorting Sleep page shortly.
I have to tread carefully over the log as any management of change is problematic. How fortunate that my Masters’ Degree is in ‘Lifelong Learning and the Management of Change’. I know that Tom Schuller occasionally pops into my Blog and will continue to keep a watchful eye on his student.
Maureen’s car was out of action yesterday with a flat battery and I wouldn’t have been able to meet Melissa without Mike our next door neighbours help. Kate, his wife, came to our rescue after Maureen had tripped on some uneven pavement.
The staff at Grimsby Hospital excelled in their approach to Maureen’s treatment. She was treated with dignity and respect by all. Apparently she has friable skin so sutures could not be used. The receptionist in A and E summoned a taxi for us around midnight and we were home shortly afterwards.
I have just taken Maureen her first cup of tea of the morning and she is bruised but far from broken by her fall. She is concerned that I won’t be able to go to work today: how fortunate that my battles to keep order in the classroom, as a Supply Teacher, were concluded several years ago.
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!
A couple of hours ago I responded to Maureen’s constant plea to be ‘taken home’:
She was so happy to be back in familiar territory walking down the back ally of where she used to play as a child. It was a pleasure to see her ‘back home’ and gaining a sense of belonging once again.
Then she met Roy the ‘Head Honcho’ who is in charge of decorating up the ally for the Queen’s Birthday:
When we came across a busker in the shopping area Maureen couldn’t resist singing along with this Willie Nelson look alike to my request of ‘Always On My Mind’:
I just had a sneaky feeling that taking her back just to her childhood home a few miles away in the centre of Cleethorpes would do the trick. She’s spark out on the sofa now after what she described as a ‘great morning’. You have heard of Amazing Susan in previous posts but what about Marvellous Maureen from now on: that wife of mine is incredible.
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.
From 7 pm on the 10th June 2016 this Blog will concentrate on accentuating the positives. There will be no more tales of woe and reflecting on the challenges of dementia. Life is a challenge we have to be positive as we decide how to make our way in the world.
It will take me some time to update this Blog to reflect how Maureen and I have always tried to conduct our lives.
Wanting to go home is a common theme of Maureen’s presentation: particularly as she wakes after a sleep. Her pleas to be taken home were heart wrenching yesterday afternoon. As she wandered around the house collecting her belongings I knew I had a struggle on my hands but despite my best efforts I couldn’t console her. It was after office hours so I had to come up with a novel solution to distracting my wife:
Serve up an egg and beetroot sandwiches on stale bread.
Reach for an avocado and bad mouth the supermarket because it has gone off.
Offer meatballs on pasta and hear: ‘its flour and water’.
Serve quorn burgers with cheese and fried onions that are a delight.
Create a mouth-watering sweet with banana, raspberries and cherry yoghurt.
Play a Nat King Cole L P
Run down the garden with a colander on your head as a reminder of my antics on a romantic and wet camping holiday.
If my Seven Point Plan hadn’t worked I was thinking of ringing for a taxi and asking the driver to drop her off. What else could I have done with Maureen’s car on gardening leave?
I have used a bit of humour to start this post because there is nothing funny about Maureen’s presentation. When your wife compares you with Hitler for encouraging her to sleep in her newly made bed or accuses you of bringing whores back here that doesn’t bring a smile to your face. Seeing the concern on Maureen’s face as she stumbles from room to room trying to find where she sleeps is upsetting to say the least. When you see that the bag she was clinging to when she packed to go home was full of make-up you realise how bad things are at the moment: she hasn’t used make-up since stroke.
As I watch Maureen’s capacity decline at an alarming rate it is little consolation to be frequently praised by professional staff for my efforts. My Admiral Nurse was on annual leave yesterday, and our social worker was unavailable, so I had a lengthy chat with Gilly the Manager of The Home Treatment Team. She confirmed that I was on the right track with how I was reacting to Maureen’s preference for sleeping downstairs or by herself. Gilly also thought parking the car with our mechanic was a good idea. She also agreed that I needed to let Maureen to go out by herself, despite advice to the contrary from an Occupational Therapist.
I’m not always sure that I am doing a good job as Maureen’s Care Partner: trying to preserve independence and maintain her safety stretches me to the limit. What I do know is that last night Nat King Cole combined with the ‘Colander Trick’ saved my bacon and my job here as Head Chef!
It’s now 5.30 am and Maureen has returned to her theme of ‘wanting to go home’. I realise that this is not sundowning it’s a plea to see more of her loved ones. This is something that needs to be addressed. It is simple for me to keep to my side of the bargain and visit family in other parts of the country: much easier than when you are not working or raising young children.
Our visits will allow us to explore whether we would be better off moving from this area to see if Maureen can find a place where she feels at home. Opportunist that I am the car can be picked up shortly and we could be on our way by lunch-time: procrastination is the thief of time. As we had hoped to be in Coventry for Lisa’s birthday next weekend heading towards Durham would be a sensible option today.
When Chloe ‘Girl Friday’ arrives in a couple of hours I will chat over how things are going. Along with her colleagues Charlotte and Gail they are the real experts on Maureen’s presentation. They are the only people apart from me who are dealing with Maureen’s rapid decline. Therefore Chloe will be my point of reference before I make my next move on helping Maureen to go home: how ironic that the lowest paid are the real experts on dementia.
Maureen was reluctant to come to be again last night. At 10.30 I decided to leave her to it and made my way to the spare bedroom. She came upstairs at 11.30 and I joined her in the marital bed – an hour later she decided to return to the sofa so I went back to the spare bedroom where the receiver of the baby monitor resides.
Around 2.30 am I could hear a lot of activity downstairs and went down to investigate. I whistled (my call sign) as I tentatively opened the door to the lounge to find my smiling wife on her feet. As I greeted her I mentioned how good it was to see her and noticed that she had her PJ bottoms over one of her favourite pairs of trousers.
We have just spent the most enjoyable couple of hours together. She is 3 -2 up on the ‘Sock Hunt’ with those in pairs waiting for a rinse later in the morning. Despite my best efforts I cannot make any impression on her lead.
Our conversation around our struggle to find ‘fick socks’ has been light hearted and really positive. Maureen has mentioned several times how helpful the Ladies (our carers) are: a really positive development compared with the norm. We have decided that Gail will return to her seamstress role this morning; possibly altering some of Maureen’s summer-wear in anticipation of warmer weather. As the car is laid up for a while (on the advice of yesterday’s advice from my Counsellor) Chloe will be our ‘Shopper Lady’ tomorrow and I have encouraged Maureen to start making a list of what we need.
We had a lovely surprise yesterday as Lisa sent us a video clip of Mala playing Eidleweiss on her flute. I will transfer the clip on to my computer today so Maureen can see how well Mala plays one of her favourites from The Sound of Music. Maureen is spoiled for choice with her response she is either going to send a song or a post card in response to this act of kindness. The sad thing is that Maureen has forgotten that my eldest daughter and her family were here on Friday but she is keen to visit Lisa on her birthday in a week’s time.
There is no doubt that Maureen is responding well to the new regime here. Yesterday afternoon she show real joy by initiating a dance in the garden. I’m so fortunate to have expertise at hand to coach me on her presentation. Amazing Susan(pictured right) and Sue our social worker deserve real credit for encouraging me to focus on potential rather than a safety-first approach to Maureen’s presentation. I will EMail Sue our social worker this morning and thank her for holding my hand on Tuesday as Maureen went looking for the children who had been her car. All I can do for Ms Macaulay (in the USA) is acknowledge she really is Amazing Susan and that Teepa Snow would be proud of one of her disciples.
As I finish this post I have just had to deal with an attack from ‘Mrs Dementia’ who has accused me of evading her question about ‘where have they all gone’. Maureen is frequently troubled about being left here when the others have gone out. It’s now 6 am and Maureen is refusing to speak to me and has walked away as I tried to use physical contact to help her feel secure. Ten minutes later and she has taken to the sofa: sleeping it of usually banishes Mrs Dementia for a while.
Another day beckons on our journey with many twists and turns likely today. How fortunate I am that there is always all sorts of expertise at hand -some of it amazing – to help me find my own way of being a supportive Care Partner.
Silly Mistake
This post is later than normal this morning because I didn’t take the Baby Monitor with me when I was chatting to my next door neighbour. My misjudgement caused Maureen utter distress as she thought she had been locked in and left alone. It is possible that I will need a more sophisticated model that enables communication when I am not in sight. Her presentation is changing so rapidly at the moment that I need to continually evaluate whether our set up is supportive of causing unnecessary distress. I also need to keep the Baby Monitor receiver within ear shot whenever I’m out of sight and she is resting on the sofa!
Four women gave us excellent support yesterday. Melissa from the Home Treatment Team met me and made practical suggestions to improve our lives. Sue our Social Worker provided sound support on the phone. Mel my Admiral Nurse kept herself in the loop throughout the day with contact via E Mail. Kate my next door neighbour taxied us to the hospital at 10pm with Maureen streaming with blood after a fall.
Wanting to go home is a common theme of Maureen’s presentation: particularly as she wakes after a sleep. Her pleas to be taken home were heart wrenching yesterday afternoon. As she wandered around the house collecting her belongings I knew I had a struggle on my hands but despite my best efforts I couldn’t console her. It was after office hours so I had to come up with a novel solution to distracting my wife:
