We would not be able to cope without the support of lots of people who live in our vicinity. I often adapt a Citizen Khan quote ‘they all know us’ to summarise our notoriety in our neighbourhood. What the locals know is that Maureen has dementia and we both need their support on a daily
Local shop assistants are a great help even when they have customers waiting to be served. We often pop across the road see our friends in local stores who are all willing to give us time and consideration even when we have just called in for a chat. If I’m out ‘wandering’ by myself the first question locals ask me will generally be associated with Maureen’s welfare. Whenever she slips out without me noticing it would be unusual if someone doesn’t tip me off that she is out by herself: frequently they ease her back to the safety of her own home.
If ever I’m struggling with her presentation I’m spoiled for choice over whose door I can knock on for a little distraction and redirection. I can honestly say I have never been turned down at any time of day or night in my hour of need.
When I spotted Hattie and her mum across the road yesterday I thought it was an opportunity too good to miss. Maureen adores the company of little children and loved having a toddler on our drive. It’s a shame that both of our families live so far away so I think we might ‘adopt’ Hattie and her brother. He wasn’t around yesterday as he had gone to visit relatives in Coventry. If we had known we could have asked him to pop in and see some of ours!
Maureen greeted Girl Sunday with ‘we’re seeing a lot of you lately’ – possibly remembering that she had been with us 24 hours before. They did some sterling work tidying up while I went to top up our provisions for the week.
Following a siesta, we had a lovely afternoon as Maureen watched me pottering in the garden through the patio doors. She popped out occasionally to assist and praise my efforts.
With vascular dementia, you can never predict how the day is going to turn out but it was good to enjoy the ‘Day Of Rest’ yesterday after a very busy Saturday!
I completed drafting the above just after 9 pm last night as Maureen lay fast asleep on the sofa. I’m back on the keyboard shortly after 6 am, so I’m almost sticking to the regime I outlined yesterday and how the last nine hours went are outlined <HERE>.
I’m going to suggest that Girl Monday offers one of her Pamper Days this morning. She has an excuse to guide Maureen into the shower as she is now half-way into her pregnancy and finds it difficult to bend over the sink. I’m hoping my ‘Silver Lady’ will look a million dollars when I return from the Leisure Centre – attired in the outfit I have left on a hanger. With her hair such a beautiful shade now I called up David Soul for her on YouTube yesterday:
Temperatures were soaring here again yesterday. We got off to an early start at a local Car Boot Sale where I bought some additional plants for my vegetable plot. It was so hot by the time we returned home that I’m not sure if they will have made it through the night.
When Girl Saturday arrived Maureen asked her ‘if she had enjoyed Christmas’. She soon hooked into Maureen’s reality sharing how things had gone back in December. As she skillfully moved Maureen from the lounge to ironing in the kitchen the catching up exercise from Maureen’s stay in Respite Care was moved forward. All that remains from that episode is the return of several important items of Maureen’s clothing.
As Sanchez popped in an early opener for the ‘Gooners’ in the F A Cup Final a challenging series of events began to unfold. Maureen told me she had rescued a little boy in the garden who had got entwined in some garden canes. He had been taken away by firemen as he had also fallen into a ditch used for drainage by the Golf Club. We then searched the local streets for him for over an hour with Maureen becoming increasingly upset about his welfare. It took a couple of calls on my mobile to and from the Home Treatment Team before I managed to get Maureen home.
During our final trek home, Maureen left me in no doubt that she could see through the ‘lies of the Nurse’ who had advised her to go back to the house saying: ‘those people think I’m stupid and tell me anything to get me to do what they want’. However, her choice of language left me in no doubt that she thought the Nurse who spoke to her on the phone was born out of wedlock.
Maureen woke several times in the night concerned or scared about one thing or another. If I am to survive this part of our journey I need to work hard on getting adequate quality sleep and I will detail my approach <HERE>.
Just as I was concluding this post I responded to Maureen crying in the bedroom. She has returned to a familiar theme that ‘ she wants to go home as no one wants her or comes to see her’. I have suggested that we could visit folk who can’t make it here at the moment but I genuinely think she is too worn out for a long car journey in this heat. Thankfully, the subject of my Good Music page will be here at noon and that is something for us both to look forward to!
When I finally decided to get up this morning, very tired after a difficult night, I thought I had made a stupid mistake during yesterday’s meeting with our Key Worker. On reflection, I had spent too much time chatting about what had happened during my Respite Break, rather than what lay ahead. None of that conversation will help my aching body and tired mind this morning. Then as I woke up it came to me: I don’t need additional carer sits today or tomorrow I need domestic support.
A simple phone call to the Agency requesting that Girl Saturday and Sunday arrives at 11 am rather than noon could make a significant difference to our weekend. We will pay for this additional time as we need help with domestic duties rather than additional sitting time with Maureen. The time has come for the Resident Chef to hand over Saturday and Sunday dinner to The Girls. My only problem will be getting through on the phone as this particular Agency has not acted on a phone message I left earlier in the week!
As my Admiral Nurse reminded me on Friday we never know what is behind changes in Maureen’s presentation. Last night was a belter with Maureen awake every couple of hours with extreme levels of fear and confusion. She has just stirred again seeking confirmation that we are married and enquiring what time I will be going to work.
I’m hoping that complimentary therapy of a different kind might ease things a little during this challenging phase of Maureen’s condition. She often says she feels useless at the moment, so I’m taking every opportunity to thank her for all sorts of things: from her pleasant demeanor to how stunning she looks since she had her hair trimmed in Ashgrove. Unfortunately, I have mislaid the reference for this approach and hope readers remind me of the author of this strategy to supporting someone with dementia.
One obvious activity today is to dig out our wedding video and photos. It will be interesting what memories this might evoke for Maureen: it will certainly remind me of how stunning looked on our Special Day. I’m pretty sure we have both got our outfits and wonder about a dress reminder of our Special Day – now that would really be a special kind of a distraction if the going gets tough today. How on earth I shift her from looking for her mum and grandmother this morning is another matter!
It was warm enough in Cleethorpes yesterday to remind us of the beautiful holidays we spent in Corfu. The memories of those hot days scrambling over the rocks from Kalami to Agni Bay taking in the White House, pictured above, came flooding back. This is the spot where Gerald Durrell wrote My Family and Other Animals.
It may have been the aroma of factor 30 sun tan lotion that brought back the nostalgia of those beautiful days in Corfu. One year we had three separate fortnights in Kalami; each time as we landed on the island keeping our fingers crossed that we would be ‘allocated on arrival’ to our favourite spot. We didn’t have much money in those days and took pot luck with telephone deals from Portland Holidays costing around £150 for a couple of weeks in the sun.
I’m hoping that the hot weather was the guilty party for Maureen’s challenging presentation yesterday when I just couldn’t keep her in the house. We walked together ‘early doors’ and then I seemed to spend the rest of the day tracking her or waiting for her to return. On one occasion it took over an hour to persuade her to come back home. after she had even declined an offer from Girl Wednesday of a lift in her car. Then late afternoon, a kind neighbour drove her to our door after finding her on the way to Cleethorpes. I am beginning to wonder if she was after a bottle of Ouzo or seeking the shade of the White House.
Our Key Worker is due at ten with some feedback on Maureen’s presentation while she was in Ashgrove. It is unlikely that he will be able to tell me anything that would convince me to risk putting her into a Care Home when I meet Irving Kirsch and Tom Schuller, in London, towards the end of June. I wouldn’t want to be wondering how Maureen was when I was having dinner with two people who have been so important in my life: Irving’s research helped me to escape from a lifetime on antidepressants; Tom supported me at Warwick University with my own research for a Masters Degree.
In future Carers’ Respite has to stick to the decision of the Best Interest Meeting to the letter: ‘for Maureen to be cared for in her own home’. That will be expensive and difficult to organise but Maureen has paid a very high price for the alternative!
With so much going on in the last few days I have almost forgotten my day in Coventry last Saturday. As I was shopping in the Foleshill area I bumped into a ‘young man’ (now 57) who used to attend a Youth Club I ran in the 80’s. Griff was a member of a posse that led to Reggae becoming popular at our infamous Friday Night Discos. In those days some local lads christened me ‘The White Rasta’ because of my affinity with ‘The Boys’ and my frequent use of West Indian slang. Griff asked me to pass on his good wishes to my eldest daughter who provided me with a lovely lunch and hour later
As always I had a great time with my daughter and her family. Once again, the girls provided constant entertainment. I was hoping to hear the younger ones latest rendition on her karaoke machine but she was too busy competing with her sister for the IPad.
The eldest daughter of ‘The White Rasta’ is a chip off the old block with her taste in music and I know she is rather fond of this one from ‘Brother Bob’:
When I returned to my hotel, on Saturday evening, I got chatting to Agatha (pictured below) a Polish academic. who had been attending a Conference at Warwick University. She had an autistic son and we found we had many struggles in common. Her approach to supporting her son was inspiring and I may well have kept her up a little longer than she anticipated after a tiring day.
My fond memories of my trip to Coventry are fading fast with so much going on here. However, what is difficult to forget is how my mum and brother live in Residential Homes where space is at a premium. There isn’t enough space to ‘swing a cat round’ as my mum sits in her chair side by side with fellow inmates. My brother is slightly better off but ‘overcrowding’ is still a feature of his domain. Maureen had more room to walk around in Ashgrove but I’m not surprised staff struggled for an hour to get her in from the garden even when it was raining!
A fond memory from yesterday: after the District Nurse declared all was well down under; Maureen said: ‘I hope she falls off her bike after what she has just done to me’. Maureen is certainly brighter this morning and there are positive signs that things are moving along nicely if you know what I mean.
It’s timely that I’m meeting with my Admiral Nurse this morning. We need to consider how I can get a break from my role without spending days tidying up the ensuing mess whenever Maureen goes into a Care Home!
It is almost three days since I collected Maureen from her stay in Ashgrove Care Home and I still clearing up the mess. Thankfully, the visit of Rapid Response on Sunday night has faded in her memory as has the aroma in the bathroom. Most of the casualties from that little episode have been washed and are ready for use again. However, there remain several issues to clear up from our time apart:
- Clarifying how Maureen presented when she was in Ashgrove
- Establishing how Maureen came out of Ashgrove in such a poor state.
- Reclaiming certain items of missing clothing
- Seeking a refund from the provisional bill
Every time Maureen has been into Respite Care I seems to spend ages clearing up. Once again, I’m chasing my tail as I try to clear up issues that should never have happened in the first place. The whole process leaves me with real concerns about using Care Homes for a respite break in the future. It’s fortunate I’m meeting with my Admiral Nurse on Thursday and we can consider better ways forward for both of us!
At half-past five this morning I’m being stretched to the limit as Maureen tries to make sense of her world. She wonders where the others have gone and why she has been left here by herself? An offer of a cup of tea is not doing it this morning – all I can do is leave her to rant: good morning Mrs Dementia.
My call to Single Point of Access at 6.30 will lead to a referral to District Nurses so that Maureen’s bowel movements and skin condition can be kept under review. Once again, I count my lucky stars that we moved to North East Linconshire where there are systems in place to support those with dementia remaining in their own homes for as long as possible.
‘Sleeping Beauty’ has dropped off again and Susie is resting on the window sill. It’s a beautiful morning so I’m going to tidy up my vegetable plot and keep in touch with things upstairs via the baby monitor.
Heartbreaking: at 8 ‘o’ clock Maureen in tears as she grabs me as I return from our garage saying: ‘ I thought you’d left me’.
Maureen stayed in bed yesterday; asleep for much of the time. Throughout the day I kept a watchful eye on her ensuring that she was well fed and watered. After her ordeal on Sunday, I thought it was sensible to let her sleep for most of the day.
Despite all the trials and tribulations of the last few days Maureen still, has a ‘wicked’ sense of humour. Yesterday, she told me ‘it’s a girl’ as she produced Susie (a plastic doll) out of her wardrobe. Not to be outdone I told her the noise that she was making in the bathroom on Sunday night ‘I thought she was having an elephant!’
When I collected Maureen’s clothes from Ashgrove Care Home yesterday the Manager invited me to have a chat with her about any concerns. Her open style of management is refreshing and I took the opportunity to raise a couple of issues. I know that Maureen Key Worker requested monitoring on a couple of fronts and I look forward to their report when we next meet. Perhaps, some form of Discharge Summary following a Respite Break would be helpful to us all!
Maureen was delighted to take a phone call from her granddaughter yesterday evening. I’m looking forward to a live performance, in our garden, from Maureen and Maeve early in June:
Girl Tuesday is due at ten and I plan to be at the Leisure Centre shortly afterward. One thing I’m sure about is all their baby talk is unlikely to make Maureen feel broody after Sunday night. Thankfully, Susie is a ‘model child’ and slept through the night once again!
The events of yesterday have left me wondering if I really had a Respite Break. It was past midnight before we were able to get to bed after a horrendous day with Maureen in agony for much of the evening. Rapid Response came to our rescue at 11 am and gave Maureen treatment that eventually brought an end to chronic constipation. I have never witnessed or heard anyone in such pain until things started to move.
I’m hoping that our Care Agency has been able to respond to my request to recommence support a day earlier than planned. Someone needs to be with Maureen as I begin the task of clearing up from yesterday. The washing machine is already on and is in for a long shift today.
All the good work I did on my tired body last week has almost been undone with aches and pains widespread once again, the saving grace is Maureen is fast asleep as I type. This is another one of those occasions when there is no gain without pain. As I begin what is likely to be another long day questions remain about how we handle future Respite Breaks.
We would have been in a bigger mess last night without the excellent support we received via Single Point of Access – my hotline to them gained us prompt access to hospital and community-based support. Throughout our ordeal, we were always treated with dignity and respect by staff whose dementia awareness was first class. Once again I’m extremely grateful for the quality of services that are available to us 24/7 to us in North East Lincolnshire.
On thing, I almost forgot – how fortunate the Second Great Escape was successful!
Yesterday the weather prevented me from responding to my mum’s inevitable plea: ‘have you come to take me out?’ As plans for the ‘Great Escape’ were being formulated the heavens opened and the rain stopped play. When I returned in the afternoon for a second strike mum was fast asleep in an armchair in the lounge of her Care Home, so I left her to rest.
When I called to see my brother earlier in the day he was asleep in a chair in his Nursing Home. They roused him after my arrival as it was time for lunch. Following ten minutes of lovely smiles and friendly wordless gestures, I left him to be spoon fed his lunch.
I have no doubt that my mum and brother are being well looked after in their respective homes. They are both popular residents and staff go the extra mile to meet their needs. I know that Maureen will be getting similar treatment in Ashgrove: her carers were really pleased to see her when we dropped her off last week. I also realise if I go to see her today she will pose the same question as my mum: ‘have you come to take me out (home)?’
Sun greeted me as I returned to Cleethorpes this morning after leaving Coventry as dawn was breaking. Despite driving over 100 miles I feel in good form after almost a week’s Respite Break. I can see no reason for Maureen to stay in Ashgrove any longer and when I pop in to see her a little later I know that rain cannot frustrate today’s Great Escape!
Dawn is breaking and I have decided I’m going to take my mum out today and will be on the A46 very soon. The ‘Great Escape’ will be a short trip into the country along with the usual fix of a ’99’. I will also call in to see my brother in his Nursing Home: on CHC he’s not allowed out. I have rebooked the hotel I cancelled yesterday and will stay in Coventry overnight rather than my original plan to stay for two.
When I woke up early this morning I thought about my plan to try to get everything ship shape before I facilitate Maureen’s escape from Ashgrove on Monday. Then remembered my mum desperate to get out of her Care Home just as Maureen will be wanting to get back home ASAP. I knew if I asked Maureen what to do she would say ‘go and see your mum’. If I asked my mum the same question she would say ‘bring her home now’. I also know if I was able to ask my dad he would have said ‘look after your wife’. I realise I’m fortunate to have been raised by loving parents and to have such a thoughtful wife.
Sincere apologies to family and friends in Coventry for changing my mind once again. I will keep in touch by text throughout the day and hope to catch up with some of you!