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.
Maureen has thrown down the gauntlet about being allowed to be out on her own. She was reluctant to accompany me to the corner shop yesterday afternoon and when I returned she had gone out. When I went to find her she said ‘why are you looking for me I’m not lost?’ The interesting thing is that she was walking around the Court that I had encouraged her to follow the previous afternoon. I think I now have to pluck up the courage to let her go off by herself and wait in the house until she returns. I’m wondering if it is a good time to suggest using the Digital Tracker that I bought some time ago and Maureen declined to use. I also have a similar dilemma over changing our sleeping arrangements’
I’m not sure if sleeping on a single bed in the lounge is achieving anything. What it may be doing is encouraging Maureen to sleep on the sofa rather than retiring to a bedroom. My inclination is to take the bed back upstairs – yet again – and see what happens.
Maureen may not feel that she is lost when she is walking out by herself but I often feel spoiled for choice in how to respond to her presentation. My Admiral Nurse is on holiday at the moment and I have chatted to one of her colleagues a couple of times already this week. She has suggested reframing my suggestion that we need a holiday. If Maureen takes up the bait it would be interesting to see how we cope with a couple of days in new surroundings. The plan is to be on holiday close to the family members in the Midlands who Maureen is crying out for more contact with: predominantly her granddaughter. What a shame it will not be possible to meet her parents: I’m sure ‘Union Jack’ and I would have had lots to talk about and I would have loved to have met his ‘Diamond Lill’.
While I’m on the subject of holidays we will need a World Cruise to thank all the people who support us via this blog. I’m particularly grateful to Di Brooks this morning as she suggested taking an Epson salts bath which has been so refreshing. I would recommend anyone to read her Blog where she shared her experience of being a Care Partner to her late husband so openly.
It is my six weekly appointment with my Counsellor this morning. Ironically it is exactly 24 hours away from the Best Interest Meeting. How fortunate I am to be able to chat over the challenges in my life with someone who has such an extensive understanding of dementia.
Maureen excelled in the beautiful sunshine that we both enjoyed here in Cleethorpes yesterday afternoon. I could hardly hold back the tears as I saw my lovely wife walking and talking in the streets of Humberston.
She was a little nervous as I encouraged her to walk around Royal Court alone. I was able to watch her until the corner and shout words of encouragement as she hesitated at the sound of a barking dog but she looked back at me and walked on. I stood rather nervously at the other end of the Court until she came into sight. As soon as I saw her I shouted words of encouragement and was pleased when she returned my greeting.
There were lots of people out in their front gardens as we continued on our stroll. We stopped and chatted as we ambled along and Maureen was keen to interact with the gardeners. I think her enthusiasm was sparked by making new acquaintances: she hates it when she can’t remember who people are.
Towards the end of our walk, a gentleman recognised that I was wearing a Coventry City shirt and we stood for almost half an hour chatting to him about all sorts of things. Maureen loved talking to this man as she was able to contribute to the conversation about Coventry and coal mining. He had been a surveyor in the mining industry something that surrounded Maureen in her childhood.
I’m not sure what the weather forecast is for today but it is another day when opportunity knocks as I have cancelled the carer sit as it would have been a newbie. If the sun shines on us today who knows what we might get up to. My money is on Maureen proving the doubters wrong as confidence may be the issue on some fronts rather than capacity. If I’m patient and continue with positive risk taking my money is on the butterfly emerging from her chrysalis as spring moves into summer.
The only downside of yesterday was that Girl Monday/Friday was still on holiday. This means that Maureen won’t hear her ‘good news’ until Friday but I understand she may be already be booked in for babysitting. It also looks likely that our longest serving carer will not be at the Best Interest Meeting on Thursday and I have therefore suggested another postponement until she is available. The way things are going she might even have to bring the baby to the meeting!
Whatever the reasons for the mix up over carers for today it now has to be seen as a lucky break. With Maureen’s current presentation my suggested arrangements would have put her at risk. Leaving her to cope alone for three hours in the morning and two in the afternoon were at best optimistic: now I view them as niave.
After the events of the last twelve hours I am pleased that I have already cancelled my plans to travel to Coventry this morning. It would take more than the time I have at my disposal to detail events of the last 12 hours. In summary there have been periods of real confusion; about time, place, and person at a level I have not seen before. This has included such assertions as ‘you do not belong in my bed to why do the owners of this place not do this that and the other’. Maureen has also been hearing voices and seeing people that are not here. This morning she has no recollection about my plans to go to Coventry.
If Maureen continues in this vein I will have to try to ease her to Out of Hours G P services at the hospital. Unfortunately, my attempts to get her assessed earlier in the week failed. It might be better to keep her calm over the week end and try to get her to see her own G P on Tuesday – he is not in work until then. The risk of seeing other people is that they may not understand her intolerance, and reluctance, to take medication. Dr Munjal treats her with the understanding and compassion that she deserves in all her interaction with other people.
In terms of seeing my mum and family in Coventry it’s back to the drawing board. I no longer think it is safe, or sensible, to leave Maureen to her own devices while I’m over a 100 miles away. A tiring day trip to Coventry is no longer a practical option as I’m pretty tired, and not in great health at the moment. What I now need is an overnight stay where Maureen is looked after, in our own home, by familiar faces. Simples as the Meerkats would say.
I am really looking forward to Saturday when I will see mum again after such a long time of not being able to get to Coventry. I just wonder why it is so simple for me to have an away day every other weekend now, when it has been so difficult in the past? Some colleagues on Talking Point have raised questions about my, combative style, and my approach to commenting on poor professional support. However, it is reassuring to see that the Local Authority have responded so openly to my concerns, and provided a social worker who is a dementia specialist to ensure that appropriate support is now being put in place.
One of my sister’s phoned the other day to say that my mum is being assessed to see if she needs a walking frame. I’m not at all surprised as the last time I saw her I realised how difficult it was for her to get around safely. She is ok if she is holding on to your arm, with a stick in the other hand but is very unsteady on her feet unsupported. I wonder if her current state is inevitable and that at 94, with vascular dementia taking its toll, we will all need some form of walking aid or another?
I just have a sneaking feeling that mum’s condition has been brought about by her environment. She is a resident in a small Care Home and is mainly chair bound. For long periods of the day she sits in her chair staring into the middle of the lounge. She is mobilised when she needs to go to the toilet or at meal times. From what I have seen that is her daily routine.
It isn’t rocket science to realise that muscle strength and tone is maintained by exercise. The mantra of ‘use it or lose it’, is well-known but it seems to have been difficult to adhere to in mum’s Care Home. It’s probably too late but I would think that my dancing teacher of 50 odd years ago could still have joined me on the floor if others had helped her to keep active. I think it must be over a year since we entertained her fellow residents with our version of the slow Foxtrot.
It is possible that staff at the Care Home are so stretched, looking after the personal needs of residents, that they don’t have time for much else. However, I just wonder if her age and diagnosis of dementia have meant that she has been sold short? Surely some limited form of exercise that did not take place in the chair could have been part of her daily routine. Unfortunately, despite the vigilance of my sisters this has not happened. They tried to nudge the Care Home on lots of issues with little success. So mum will need to be ‘framed up’ or she will be in a wheelchair next. Now I wouldn’t want to be the one who tries to persuade her on that one!
It’s 5 am in the morning and I have been awake for an hour. The events of the last hour have set my mind racing, and sleep is impossible. Perhaps this ‘rude awkening’ was meant to be: it has clarified my thinking over next weekend.
Maureen returned from a bathroom break feeling cold. She put the light on to recover a blanket that had slipped off the bed. Then she left the bedroom, and everything went quiet until I heard her call my name. I found her downstairs, in the dark, saying that she was: ‘lost and couldn’t find her way back to bed’. As often happens she is now fast asleep, and I am left awake with my thoughts.
This morning is a stark reminder of her presentation. One constant is the unpredictable nature of her mixed dementia. On occasions Maureen can present being in complete control of her faculties. At other times she is overtaken with abject confusion, and ensuing distress. It is therefore not safe to leave her to her own devices for anything other than very short periods of time.
My rude awkening confirms what is needed for next weekend, when I will be visting relatives: round the clock care in our home. Anything else would be nothing short of a negligent approach to her welfare.
Yesterday evening it happened once again; I turned my back for a few minutes and Maureen went missing. I had spoken to her few minutes or so before, as I took a call from one of my daughters on my mobile. Five minutes later there was no sign of Maureen in the immediate area, so I took to the car to widen my search. I eventually found her making her way in the general direction of home.
There are many aspects of concern from this incident. When I picked Maureen up she said she thought: ‘I had gone to work, and didn’t expect me home for some time’. Evening was drawing to a close and light was fading. The temperature was dropping and she was clad: in a T shirt, wearing light joggers, and shod in slippers. She commented that few people were around to help her find her way home.
As we travelled the short distance home she was completely unaware that her behaviour could have caused any concern. When we got back in the house she thought it was strange that the light was fading, as she thought it was morning. She expected that we would be taking breakfast as our next meal. Later in the evening her behaviour raised further concern.
Maureen often goes to bed early but last night she was frightened to retire unless I joined her. This meant missing ‘Match of the Day’ and I revealed my addiction to football in yesterday’s Blog. However, as she was obviously so tired I agreed to an early night.
The developments of yesterday are an illustration of Maureen’s current presentation. She has no concept of person, place, or time, and her behaviour is unpredictable. This means I have to maintain constant vigilance to ensure her welfare. Little wonder that I need a break no-one could sustain this 24/7. The Pussy-Footing Around simply has to come to an end and a revised Care Plan along with a Carers’ Assessment is required as a matter of urgency.
The irony in all of this is that Maureen went missing while I was talking to Anna on the phone. She is the Campaigns Director for a Missing Persons charity – you couldn’t make it up!
Today is our 17th Wedding Anniversary – an important event in itself. We don’t normally do anything exceptional to celebrate, so we will probably have a quiet night in. As the ‘in house chef’ it is my responsibility to create dishes suitable for the occasion. It is also the day when I am meeting our social worker to progress my Carers Assessment. That is where the other woman in the photograph: my mum comes in. I need to go to visit her as soon as possible.
Mum is 94 now and lives in a Care Home in Coventry. She is rather forgetful and has vascualr dementia. If I don’t get to see her soon she may forget who I am. It is likely that she will deny I have been to see her within half an hour of my departure. However, just to be able to take her out for a short ride around local country lanes is all she asks. She remains so grateful for such small pleasures. If she behaves, I might even take her to her favourite Country Park and treat her to an ice cream.
The meeting with the social worker is opportune after the events of this week. It is now time to draw a line on Maureen wandering or being left to her own devices. We have had more than our share of good fortrune on that front: chancing our luck any further is not an option. This raises the thorny issues of independence and deprivation of liberty. These mattres have to be dealt with sensitively, as it is vital for us all to recognise the sterling efforts Maureen makes day after day in the face of adversity.
I chose well 17 years ago and it is until ‘death do us part’ as we continue on our journey with dementia.
Some additional measures are now needed to keep Maureen safe. In the last two days I have managed to track her down on walkabout being shepherded back home by two kindly folk. On Tuesday she was walking arm in arm with an elderly man; oblivious to any concern about her lengthy absence. Yesterday she was in the company of a middle-aged woman who guiding her back home. It is fortunate that she met such friendly dog walkers on her travels.
It appears that Maureen has increased the range of her walkabout. She is now venturing as far as the Country Park before she seeks assistance to find her way home. Her current walkabout are now a cause of real concern for your truly. It is no longer simple to track her down, as she increases the range of her tours of the local area. In the past I have given her a measure of freedom before tracking her down. The time has now arrived to review my approach to her walkabout to ensure her personal safety.
Maureen is very vocal about her independence and has indicated that restriction will lead to dire consequences. She feels she is safe to be both left to her own devices in the house, or on walkabout. In fact, she has made it clear that if my concern about her independence continues she would elect to end our relationship. I fully recognise that this is dementia robbing Maureen of any realisation of the risks involved. Unfortunately, we are no longer in a position to hold rational conversations with my dear wife.
Preserving Maureen’s independence and safety are of paramount importance, as we continue our journey with dementia. Such matters are of immediate importance and have to be resolved before we consider the small issue of my Carer’s Assessment. It is fortunate I am meeting with our social worker on Friday morning.
The need for more ‘hands on deck’ here grows on a daily basis. This isn’t just a tired Care Partner speaking: anyone who is in regular contact with Maureen sees how much her presentation is changing. Chloe, our regular carer, has to answer the same round of questions whenever she sits with Maureen for a couple of hours. ‘When are you going on holiday; have you got a car’; to mention just two of the regular queries.
Two hours after Chloe had left yesterday afternoon Maureen asked me ‘if she was coming today?’ She clearly had no recollection of three hours she had spent with Chloe earlier in the day.
During the afternoon I followed Maureen on one of her walkabouts. Keeping a short distance behind I observed her antics at close hand. It soon became clear that she is struggling with her sense of direction; wandering down dead ends and drives to other peoples’ properties. As we approached the Drive we live in she declined to follow me as I returned home with some necessary urgency. Following much needed relief It took me half an hour to track her down as she wandered away from our house in the direction of Cleethorpes.
It is unfortunate that our social worker was unable to keep her appointment wtih us yesterday afternoon. This is causing further delays in the urgent need to review Maureen’s care needs. My work load is now impossible: keeping Maureen safe; trying to lift her mood and carry out domestic duties on a 24/7 basis is too taxing. There is now a significant risk of carer burn out and more help is urgently needed.
I am also no further forward with my plans to visit family in Coventry and London. It is one thing to try to become more dementia friendly, and I am doing my best on that front. Just a glimmer of hope on a bit of ‘me time’ even significant respite would just hit the right spot at the moment.
The next thrust in my Action Plan has to be getting a Case Conference underway to obtain the level of support that is now needed here. My Admiral Nurse keeps asking me what she can do to help and I have told her straight: ‘convene a Case Conference for 11.30 on Friday’.