It has taken me a while to figure out what all this fuss is about with Maureen and the car. Then this morning it came to me like a bolt of lightning. When we worked together I would sometimes ask Maureen if I could borrow her car. Her colleagues in the office used to taunt her, and call me a cheeky monkey (or worse). They suggested she was mad for her kindness. After all I had a car of my own or my ex-wife did.
When the car issue surfaced again today there were threats of calling the police, if someone stole her car again. I was also asked if I had a car. Then there were accusations that I was supplying her with cheap tea in the morning. When I mentioned that her eldest son had bought her some Chistmas Tea, further ‘outing’ took place.
Maureen’s response to talk of her eldest son led her to say: ‘I’m thinking of sending him a post card, to ask him to forward a photograph, because I’ve forgotten what he looks like’. This is in sharp contrast to comments about her other son who phones regularly: he may be the beneficiary of her car. She mistakenly believes the poor man hasn’t a vehicle of his own, and could have hers until she is able to drive again.
What all of this confirms is that Maureen’s emotional memory is still intact. Sometimes, she is time- travelling, and mixes up people. However, she is generally clear who contacts her, and knows that phone calls are few, and far between, from some folk. Unfortunately, at the very time she needs even more contact with family, and friends, the phone line is quieter than ever. Apparently, this is a familiar tale when dementia is an unwelcome visitor to the cosy set up of most families.
I’m often spoiled for choice on the topic of my daily blog: today is no different. I remember some kind soul on Talking Point suggesting I was: ‘like a butterfly on steroids’. I suppose that is one descriptor of my approach to being a Care Partner, along with others. One thing I would suggest is that I’m not a Cabbage White, more of a Red Admiral. There is no way I want to stick to the ‘prescribed diet’ for dementia: the shortcomings of which have been powerfully outlined byKate Swaffer.
What I want to address this morning is Maureen’s point about the ‘Carers Invasion’.Her reality is that their presence is counterproductive to our independence. I need to measure that against another aspect of her reality, with a few extracts of some of her comments yesterday. I’m using italics rather than quotation marks, as I’m aiming to capture the sentiments of her comments:
Clarice obviously doesn’t want the things in the bookcase: she’s left then here for me to take home.
I don’t want to speak to Clarice, she doesn’t come to see me.
I don’t like it here. I want to go home but I don’t know where it is.
I need to contact my parents – they don’t know where I am.
None of my family phone me: they don’t know the number.
Why do I need to help with preparing food or cooking?
I don’t need other people to remind me when I need a shower.
It’s too cold to go out, my foot feels funny.
I’m not using that toilet: it’s one that men in here use!
Where is my bed, and where do you sleep?
I’ve had nothing to eat today: I’m going to get my son to take this up with the NHS.
You’re making too much noise; you’ll wake the others up.
Where are the children?
As I said in my post yesterday Maureen remains a highly intelligent woman. However, when she is ‘acting out of character’ it is not always simple to comprehend her reality.
My immediate response to dealing with the ‘Carers Invasion’ is to return to an earlier approach to repelling the attack. What is wrong with accepting a bit of help with household chores, and shopping, at our age? After all in a month’s time I will no longer be able to say I’m partly 70: I will be joining Maureen in being partly 80!
We could also see the ‘ladies’ as welcome visitors, as all immediate family live over a hundred miles away. Therefore, we can often go for weeks without anyone else in our house or days before a phone call from a family member. So in short we recast ‘the ladies’ as adopted daughters who pop in regularly to see how the old folks are going on. It’s up to us to knock them into shape!
On Wednesday I held the hand the hand of two people who have been very important in my life: my mum and my brother. Mum is now in a Care Home with a diagnosis of vascular dementia. My Brother John is in a Nursing Home with a diagnosis Alzheimer’s. Today’s post shares glimpses of Wednesday’s visit to Coventry . The picture below was taken three years ago, when I took mum to see John in his Nursing Home. Even at that stage of his condition he was unsure it was his mother sitting next to him.
When my daughter and I arrived at my brother’s Nursing Home he sat in the lounge, adjacent to a couple of his fellow residents. Nan who normally walks the corridors, holding my hand, was fast asleep in her chair on his left. A gentleman to his right lay on a trolley continually moving his legs. Other fellow residents were on manouevers: wandering around the lounge. Carers were strategically placed monitoring proceedings: ready to intervene if things got out of hand.
John looked clean and tidy but a shadow of the handsome man in the picure above. It doesn’t help that his false teeth have gone missing so many times that he no longer has them in his mouth. I encouraged Lisa to sit with him for a while, as he has always been extremely fond of his niece. I watched from a distance as his face lit up with an attractive woman sitting holding his hand. At my suggestion Lisa put some rock and roll music on her phone. I’m sure he tapped his feet, and was back to jiving at the Locarno with us all trying to catch a glimpse of him on Saturday lunch-time television.
I took over from Lisa after a short while. John looked troubled as his eyes scanned the lounge watching the antics of his fellow residents. Very occasionally he smiled, and tried to mouth a few words. I held his hand and tried to say something that might have meaning.
Lisa and I stayed with John for about 20 minutes. We caught up on his welfare by chatting to staff: he had fallen twice in the last few days but paramedics had established that the consequences were not serious. Lisa was crying as we made our way back to her car, I bit my tongue to keep control of my emotions. We both needed a short walk before our onward journey to see mum.
We decided that it would be better for me to visit mum by myself. Lisa had visited a few days earlier, and mum wasn’t really sure who she was. I think mum recognised me as soon as she caught sight of my face. I took the precaution of saying who I was, after she had been walked gingerly into the visitors lounge on the arm of a carer. Her opening question, as always, was: ‘Have you come to take me out in the car?’. This question was repeated several times during my visit, despite my explanation that I had travelled down by coach.
Mums hair had been washed and set earlier in the day. When I looked at her I thought I hope I look that attractive if I make 94. You can see what a stunner she was as a young mum in the picture opposite; with John at her side, and me on her lap.
I joked that she must have known I was coming, and had a hair do especially for me. Mum responded with her question about going out.
It wasn’t easy to find much to say, and to my disgust we couldn’t repeat our singing session of the last time we were together: no signal to my phone! However at one stage mum burst into song with: ‘Don’t Sit Under the Apple Tree’ . I don’t know why but I responded with: ‘What Shall We Do With the Drunken Sailor?’
I stayed with mum for 40 minutes or so. My hands were obviously warmer than on my last visit as mum didn’t recoil when I reached out to hold hers. Without music we both found it a struggle to find anything to say, and mum closed her eyes on several occasions; dropping off for several minutes at a time. As the time to catch my bus arrived it was quite a struggle to ease mum out of the chair, and help her to shuffle back to her place in the Resident’s Lounge.
Mum’s home seemed very quiet on the day of my visit. Carers were busy attending to the personal needs of residents. Some familar faces were not around. Joyce who normally has much to say sat quietly in her chair. Mrs A, now over a hundred, normally has a flirtatious word was not in her seat.
My travel home was arduous, with delays leading to the journey taking much longer than it ever had before. It made me think of taking the car next time and being able to say : ‘yes mum I’m going to take you out today’.
When I arrived home at 9.30 I met one of the carers who had been holding Maureen’s hand in my absence. We caught up on the day, and Maureen mentioned that she had been entertaining her companions with circuit training in the garden. As you will see from the photo this cold snap has not prevented her from taking the advice to keep walking very seriously: she’s out there in all weathers!
When the carer had gone Maureen seemed genuinely pleased to see me. I wondered where the angry woman who had berated me when I phoned her from Leicester on my outward journey had gone. She had clearly forgotten telling me to come home, rather than continue with my trip to Coventry
There are three lessons from my trip to Coventry. Firstly, when I go to see John again take him some chocolate as that always puts a smile on his face. Secondly, try to make sure that I have music to hand on my next visit to see mum: it fills the long silences when we both have nothing to say. Finally, never again phone Maureen when I’m away for the day again: it only adds to her confusion, and causes distress.
There’s only one way to close this post. All together now:
I’m posting earlier today as I have a coach to catch at 7am.
I became rather concerned on Monday when I heard that there would be some new faces looking after Maureen today. At first I wondered about the wisdom of leaving her for 14 hours ,mostly with people she has never met before, while I visit family in Coventry . Then I remembered the work that we had done to provide some ‘Handy Hints’ for carers. Any newcomers will now have the benefit of some basic guidelines on how the ‘old hands’ care for Maureen. The guidelines are predominantly about preserving independence, and dignity.
The other thing that is reassuring is the quality of the support team I now have available to me. Within the last few days I have received good support from a: neighbour, Social Worker, Admiral Nurse, Chemist in addition to carers. They have all played a significant part in helping me to cope with Maureen’s changing presentation. It’s so good to know that I only have to: call next door, walk around the corner, switch on my computer, or chat with our carers and informed support is available.
There are three of pieces of advice that are particularly pertinent from the last week. Firstly, I need to take time-out to see my own family. Secondly, not to absorb what Maureen is going through: otherwise it will overwhelm me, and disable my effectiveness as a Care Partner. Finally, Maureen still has some capacity but that doesn’t mean that she is necessarily capable of making rational decisions about her own welfare. The advice from Yvonna our chemist about not absorbing Maureen’s presentation, was particularly poignant yesterday afternoon.
When I reminded Maureen of my plans to visit Coventry today it caused quite a reaction. Maureen began her normal routine of coming with me in: the car, coach or train. She even suggested that she could be dropped off at her sister’s in Nottingham, and I could make the onward journey alone. When I outlined the impractical nature of her suggestions she became very hostile. Following a sleep on the sofa she said she was surprised I had already got back from Coventry. I chose not to contradict her confusion, and fabricated answers to her questions about how mum and my brother were. An hour or so later as she was preparing for bed she said she was surprised I was here, as she thought I was staying overnight in Coventry.
Unfortunately, all is not well in my birthplace: Mum has a heavy cold, and my brother has recently had a couple of falls in his Nursing Home. His wife Jean has flu and hasn’t been able to visit for a few days. I am hoping that my lunch buddies: daughter Lisa and sister Jill, are well enough to make our date at the Red Lion.
It will be good to be back in Sky Blue Land and I hope that my presence helps ‘The City’ to get back to winning ways on Saturday. I couldn’t close this post without a tribute to J H: the man gave so many of us such pleasure when he transformed our Club. Rest in peace Jimmy after your brave battle with Alzheimer’s. I hope that my beloved Sky Blues mark your passing with promotion this year. Let’s all sing together: play up Sky Blues.
I am really grateful to several good Samaritans who came to my aid yesterday, in my hour of need. As I made my way back to my car inGrimsby I began to feel as and stood restingat the side of the road. A gentleman who was passing by enquired if I was alright escorted me back to a safe haven. The girls in reception of my solicitors took care of me until I felt well enough to drive to my doctors for assessment.
Nina a Practice Nurse delayed her lunch, to discover that low blood pressure was causing my discomfort. Chloe Maureen’s carer contacted Michelle at the Care Agency to arrange emergency cover to step in as my return home was going to be delayed. Apart from my mobile phone creating problems everything else worked like clockwork.
All of the people involved rescuing me in my hour of need stepped up to the plate without hesitation, as did other cogs in the wheel that I have not mentioned. The gentleman who stopped in the street just happened to mention that his wife had lung cancer, and was on palliative care. The women in the solicitors were all working away like beavers. My friends at Clee Medical Centre were all busy trying to deal with the pressures within the NHS. Chloe needed to get to her next call, and I’m sure Michelle at Hica was in the middle of her daily juggling act: matching need with scarce resources.
There is only one word I would want to say to you all: ‘THANKYOU’, for keeping Maureen safe, and reassuring me that my ticker wasn’t about to give out on me just weeks before I have had my three score years and ten!
I also need to apologise for the extra work I caused so many people yesterday: I needn’t have been rushing around in Grimsby. My apology is based on failing to understand dementia. My missions to try to find Maureen suitable clothing are pointless. The hours I spend trawling clothes outlets are a complete waste of time. The problems are not clothes: the problem is Maureen has dementia. That means that only certain clothes will ever be suitable for her. They may look worn or ill-fitting but if she is happy in them that is all that matters. The days of Maureen looking like a well-dressed woman have gone:she has dementia!
On the underwear front, again I am wasting my time. There will be days when nothing is comfortable: everything will irritate her in one way or another. Things that she has worn for days will be too tight, and scratch her tender skin. On those days I need to provide TLC and not go on shopping expeditions for suitable attire: Maureen has dementia!
When I returned home shortly before 2pm Maureen was still in bed. She had refused to eat or get out of bed for Chloe. Apparently on occasions, she used some unpleasant language to express concern that I had ‘gone out to enjoy myself yet again’. She showed some concern about my dizzy spell in town, and carried on as normal for the rest of the day.
Early evening I left her to tidy up the kitchen; complaining about a shortage of staff in this Care Home. I realised l my mistake later when I saw the state of the kitchen. When I went into the utility room I saw what else had been keeping her busy: ‘packing to go home’, as you will see from the photo opposite.
There is a clear lesson from today: Maureen has dementia –forget that for one moment and I’m in trouble!
This week has been very challenging, and I am going to resist writing volumes summarising what has happened. Instead I want to focus on an incident yesterday afternoon to highlight something of the current state of affairs.
All Maureen seemed to want to do yesterday was sleep. I couldn’t prise he out of bed until after noon, and she ‘rested her eyes’ on the sofa several times during the day. Towards the end of the afternoon I was tidying up in the kitchen whistling: ‘You Are My Sunshine’. Suddenly Maureen rushed into the kitchen looking all flustered and said excitedly: ‘Is My Dad Here?’ Jack, Maureen’s father, has been dead for over 30 years. The Good Music page explains the significance of this song. Whenever Maureen wakes up from resting her eyes; confusion abounds at one level or another. This time she quickly realised that her hopes could not be fulfilled.
During the last week Maureen has often been confused about time, place, and person. This is nothing new but these periods are more frequent, and enduring. It has often been difficult to persuade her to go to bed at night, as she wants to stay on the sofa. She is frightened to go to bed by herself but anxious if I accompany her, when she is uncertain who I am.
The ‘having no suitable clothes syndrome’ has once again reared its head with a vengeance. Clothes are either missing, too tight or irritate. This means that Maureen often returns to bed upset, and worn out, after a fruitless search for comfortable gear. She feels that relatives who have long passed or those who have given up on helping her on this front, may resolve things: my efforts in the past week have been fruitless. The amount of times I have trailed around the undies in Marks and Spencer have led to me being on first name terms with some of the assistants.
Another issue that keeps surfacing is Maureen thinking there are other people in the house. For some time she has been enquiring about her Aunty Clarice and Uncle Dennis: now she often has concerns about children. The other morning she wanted to know if they had already gone to school. Then out of the blue one day she asked me where my son, Steven, had gone: we haven’t seen him for about three of years. So a valid question indeed!
Maureen has been reluctant to venture outside in this cold snap, and her exercise in the last week has been restricted to the garden. This means we have avoided the stress caused by visiting supermarkets or relatives. Maureen remains reluctant to make or receive telephone calls. The only call she has taken this week resulted from a ‘cunning plan’ between myself, and her youngest son. She has often talked of sending post cards to her grandchildren but these plans never come to fruition.
I have had a couple of chats with Chloe and Gail this week about Maureen’s presentation. These are generally snatched conversations while Maureen is out of earshot. The time has arrived when the three of us need to sit down to review how things are going, along with professional staff. Things are changing rapidly and we need to discuss the most appropriate way forward.
On a personal note the rotator cuff in my left shoulder is not getting any better, despite further acupuncture,. My legs continue to give me grief. One session at the Leisure Centre last week needs to be improved upon. I have managed to slip in a few meditation sessions to good effect. I have also spent the odd half hour preparing my vegetable plot, and sorting out my seed trays
I’m really looking forward to Wednesday when I will be day tripping to Coventry to see my own family. It’s good to have time relaxing on the coach, and ruminating on improvements that might be made at the home ranch.
Unfortunately, reading the writing of those diagnosed with dementia doesn’t help me with a particular aspect of Maureen’s presentation at the moment. Whenever she wakes up from a period of rest, confusion abounds and she thinks it’s morning. Yesterday she was also worried about where the children had gone. She wanted reassurance that they were at school: most of their children have now left university!
My attempts to persuade her that it was time to go to bed at 11pm failed, and she insisted that she always slept on the sofa. Eventually, at 1am I managed to cajole her to climb the ‘wooden hill’, and fall into bed. These patterns of behaviour are becoming more prevalent and I need to think of a way of breaking this cycle.
This morning I am hoping that Chloe will be able to persuade Maureen to have a ‘Pamper Day’. Chloe can assume the mantel of beautician, and encourage Maureen to wash and style her hair. If the going is good Chloe might even persuade her that it’s preferable to wash her hair and shower at the same time. It has been a couple of weeks since Chloe has been successful on that front. To make things easier I will go out in case Maureen sees me as a ‘strange man’ in the house: that might just ease things along.
We all do our best to help Maureen to enjoy her days, and it sometimes difficult to know what to do for the best. She can remember how to carry out household tasks but seems to have forgotten how else to fill her time. Trying to keep her occupied all the time is exhausting but left to her own devices she often chooses to ‘rest her eyes’. How on earth I am going to break this cycle, and wrest her from the sofa when it is time to go to bed I am yet to discover. Leaving her alone late at night downstairs while I’m in bed risks her waking and feeling she has been deserted. Then she may become extremely distressed, and anything could happen..
Maureen is up before the birds this morning: even her pet blackird, pictured right, is stiil sleeping at 2.30 am! Blackie as she calls him responds to her whistle, as he comes down to be fed. He’s rather fond of grapes and sultanas: expect him to be involved in the dawn chorus any time now. Well this early morning wakening rounds off a funny 12 hours or so.
Early yesterday afternoon I caught sight of Maureen in the bedroom, and had to smile at her outfit. Her blue jumper was on back to front. I could see her pink P J bottoms peeping out from under her claret joggers. She had odd socks on, beneath a blue slipper on one foot, and a green rubber gardening shoe on the other.
After an early evening siesta she began to talk to me as if I was her dad. She mentioned the things we had done together, and relatives I had never met. This mistaken identity didn’t worry me too much as she seemed to feel very safe in the company of her ‘dad’. When bedtime arrived she encouraged me to let her have a bedroom to herself.
I heard her moving around shortly after 2 am this morning saying she wanted a cup of tea. As her behaviour with the kettle is uncertain I promptly joined her downstairs. We have now been up for 5 hours listening, and singing, to some of our favourite music on YouTube. So Blackie your mistress is singing before you this morning: Lazy Bones!
It’s now 7.40 am and Maureen has decided it’s time for bed: ‘as night is drawing in’. I’ve reassured her that I will serve breakfast at the usual time. She will sleep for a long time now, and I’ll go off to for my acupuncture appointment.
Starting from today; Monday’s blog will become a reflection on the previous seven days. It will be a sort of progress report for professional staff to comment, if they are able, on how things are going.
On Tuesday Sue our social worker called for a routine home visit. She concluded that our current care arrangements are not working for us, and certain changes are in the pipeline. The ‘Plan’ is to make ‘sits’ a part of Maureen’s recovery programme, and move them away from ‘baby sitting’. Sue has forwarded a draft Support Plan which I am about to comment on.
On Wednesday I met with Paul my Counsellor. Once again he alerted me to the fact that Maureen’s world is shrinking, and the need to minimise distress. He also encouraged me to develop a life of my own, and not be totally consumed by my caring role.
Twice this week I have cajoled Maureen well outside her comfort zone: a trip to Lidl on Thursday, and to Freeman Street Market on Saturday. On both occasions she has seemed lost in unfamiliar surroundings. All such outings are doing is reminding her of her poor memory, and causing distress. I intend to avoid such outings for a while, and stay local. There have been several times this week when Maureen has got lost in the house: struggling to find her way from one area to another .
Maureen’s presentation continues to fluctuate throughout the day. Sometimes I am her rock and she couldn’t cope without me, at others I am the enemy within. Yesterday evening was a prime example of my changing staus: after having fun dancing and singing to music whilst washing up she has ‘rested her eyes on the sofa’. I woke her gently at 10.30 pm, and she was reluctant to come to bed. She mentioned that she ‘couldn’t go very far as I had taken her car’- it has been on the drive all day.
An hour later Maureen made her way upstairs. She made it clearthat she wanted a bedroom to herself and will sort it out in the morning. As she preapred for sleep she is going on about all of her things being taken and never knowing where her car has gone. I retired to the spare room after a brief spell beside her in bed.
I find it difficult to sleep when hostility has surfaced late at night. My sleep pattern is poor at the moment with early morning wakening. Despite acupuncture on Wednesday the pain in the rotator cuff in my left shoulder seems to be getting worse. My legs are far from comfortable, with pain from tendons in both of my quads. Therefore,I need to make the Leisure Centre to walk in water.
Our regular carers have been back on duty this week. I managed to have a chat with Chloe on Friday, and she reports that Maureen is becoming increasingly confused. She also says that Maureen is no longer concerned about her appearance, and is reluctant to shower. We also discussed my forthcoming birthday, and how any change of scenery would only add to Maureen’s levels of confusion. Chloe mentioned that Maureen resents my absence when I visit family, and feels that she would think I had left her if I was away from home for any length of time. Looks like the celebration of my three score year and ten at the end of February will take place in Cleethorpes – Portugal is a pipe dream!
In closing I think it is worth outlining a few targets for the week:
To try to ensure all medication is taken.
To encourage Maureen to exercise four time a week, as recommended
To try one new evening activity to replace watching T V.
To leave the car on the drive unless Maureen is in it.
I am convinced that we are all straying into very dangerous territory by not understanding Maureen’s reality. Today’s post will reflect on my shortcomings in this area: tomorrow’s will deal with how significant others are having a similar problem.
My mistake is that I keep trying to take Maureen outside her comfort zone: I am creating discomfort rather than minimising it. This point really came home to me early yesterday afternoon, when I dragged Maureen to Freeman Street Market.
When I look back the experience for Maureen must have been terrifying, and only served to remind her of her poor short-term memory. I shudder when I think about how it must have felt to be in a strange place, with me chatting to people that she didn’t know: no wonder she often questions her sanity!
During my periods of depression I never realised how helpful this experience would become later in life. It is fortunate that I met with Paul Martin my counsellor on Wednesday: something he said stopped me in my tracks. He has always contended that my prime focus as Maureen’s Care Partner is to minimise distress. However, he helped me to see that Maureen’s world is shrinking, and she needs the comfort of familiar surroundings. Only the other day she said that she had ‘forgotten her way around our house’. Sometimes she gets lost finding her way back to our bedroom, after a visit to the bathroom.
It has taken me a few days to let Paul’s message sink in: we need to stay local from now on. Local shops may be more expensive but we can no longer afford the distress that taking Maureen outside of her comfort zone causes.
When I think of my selfish thoughts about my forthcoming 70th birthday I cringe. On what basis can I criticise the involvement of others in our lives, when I was thinking of us going to Portugal, to celebrate my three score years and ten? Sometimes I think it is my sanity that is in question, rather than Maureen’s!
washed and set earlier in the day. When I looked at her I thought I hope I look that attractive if I make 94. You can see what a stunner she was as a young mum in the picture opposite; with John at her side, and me on her lap.
At first I wondered about the wisdom of leaving her for 14 hours ,mostly with people she has never met before, while I visit family in Coventry . Then I remembered the work that we had done to provide some ‘Handy Hints’ for carers. Any newcomers will now have the benefit of some basic guidelines on how the ‘old hands’ care for Maureen. The guidelines are predominantly about preserving independence, and dignity.
