Tag Archives: Respite

Dementia: Following The Dementia Sherpa Pays Off

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I have never been fond of the concept of ‘going with the flow’ as an approach to being a Care Partner: it has always seemed too liberal for me.  When I read the Dementia Sherpa’s thinking it seemed more my style.  As we searched for Jamie yesterday afternoon I think Christy’s hand was close by and led me to the distraction that we needed.  Her guidance also helped me to fill in gaps about Maureen’s recent experience in Respite Care.

When Maureen became concerned that Jamie had gone missing again yesterday afternoon I suggested that we should go and look for him.  As we searched around our neighbourhood the little boy that Maureen believes she plays tag with was nowhere to be seen.  She assured me that he can’t run fast enough to catch her but he is great fun to play with.  I tried to reassure her that he was probably in the safe care of his mother but she didn’t think he would be able to find his way home.  Fortunately, as Maureen was becoming increasingly upset distraction arrived before our eyes with one of our neighbours walking with her daughter whilst pushing a pram.  When her daughter addressed Maureen by name I suddenly twigged: she had cared for Maureen when she had been in Ashgrove.

Maureen enjoyed admiring the baby and exchanging with her great grandmother but she clearly had no recollection of her daughter.  Despite several prompts, it soon became clear that Maureen had no recollection of being in Ashgrove less than a fortnight ago.   However, there were two important things that I  learned during our exchanges.  Firstly, Maureen had hardly slept while she had been she had been in Residential Care.  Secondly, there had been an exodus of staff from Ashgrove who have joined the previous Manager at a neighbouring Care Home.

I’m  clear that Fiblets are a part of my style as Maureen’s Care Partner: honesty is the best policy.  I don’t think it is too much to ask for Care Homes to open the books and let their clients know what is really going on in their neck of the woods.  Is it too much to ask that they provide a basic written report on how things have gone while a loved one has been in their care and that it doesn’t take so long for missing clothing to be returned to the owner?

Footnote: It’s rough terrain early doors as Maureen is on my case about her car and me taking it out and leaving her at home.  I might have to get on my bike today!

Dementia: An Away Day Beckons

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If things go according to plan today we are going to have another Away Day.  We plan to be chauffeur driven to visit family in Nottingham.  An Away Day with family is a great way of having a time off from my caring role.  All we will have to cope with tomorrow is a little tiredness; rather than clearing up from the aftermath of Maureen’s stay in a Care Home!

Unfortunately, yesterday did not go according to plan as I had overlooked that Girl Monday has moved to Tuesday.  Now heavy with child ‘Maureen’s Hairdresser’ has reduced her hours and no longer works Monday’s.  However, she will be here on Wednesday and I’m hoping that can be a Pamper Day.

Maureen will love going to Nottingham today to nurture her younger sister.  I’ll be happy to take a back seat while the two of them catch up and chat about the good old days.   I  only hope I have got my days, and who will be where and when, right today.

OMG, the odds have just lengthened on us making Nottingham.  Maureen has just told me she is aiming to ‘get back into hospital as no one is looking after her here.’  It’s going to be another interesting day!

Footnote: the amount of sleep I’m getting continues to improve as you will

Bad News: Maureen says it is too cold to go to Nottingham so no Away Day Today.

Even Worse News: Girl Tuesday has been taken to hospital following a fall at a previous call – I hope she is OK!

Dementia: Hot Weather and Hallucinations

Hallucinations while sleepingTemperatures 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!

 

 

Dementia: A Stupid Mistake

Image result for A Silly Mistake PictureWhen 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!

Dementia: Fond Memories

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!

Dementia: The Second Great Escape

Image result for The Great Escape pictureYesterday 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!

 

 

 

 

Dementia: Facilitating The Great Escape

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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!

 

 

Dementia: With A Little Help From Our Friends

It was mid afternoon before we got Maureen into Ashgrove yesterday,  Lots of people helped along the way and her reception at the Care Home was excellent.  Once again her Key Worker played a blinder by easing her into his car and using classical music to distract as we moved towards our destination.  There is a simple explanation why she likes’Ginger’:  he always treats her with dignity and respect!

As ‘Ginger’ dropped me back home his parting words were to ‘take a rest and switch off from my caring role’.  Within an hour I was basking in the Spa and Sauna at Cleethorpes Leisure Centre.  How refreshing to meet an ex-miner in the Spa and to chat over the good old days when we both active trade unionists.   Moving onto the Sauna I met a young man who worked at Humberside Airport and found out about interesting developments in his neck of the woods.On my return home I went to bed around 6 pm and rested for over 7 hours.

My focus this morning will be on catching up on a mountain of paperwork that has built up over the last few weeks.  Our heating engineer will be here around noon to replace a fan and sort out a minor leak. Once we have hot water again I need to catch up with Maureen’s Aunty Clarice. We will always be indebted to this incredible woman, now in her mid-eighties, for her support.  She is a veteran carer for someone with dementia as her late husband had Alzheimer’s disease for over 20 years.  Her latest contribution to helping us was to sew labels on Maureen’s clothes so they don’t go missing in Ashgrove: a small act compared to the immense support she has provided since Maureen first developed memory issues. Clarice spotted the symptoms when other family members and the medical profession were reluctant to accept that Maureen was showing distinct signs of dementia. She might not have been waking up in a Care Home this morning if they had heeded our concerns: even her stroke might have been avoided!

I’m off shortly to join the early morning bathers at the Leisure Centre.

 

 

Dementia: A Rude Awakening

Image result for A Rude Awakening Dementia PictureI had a rude awakening from yesterday afternoon’s siesta.  I rushed downstairs to find a neighbour at the door, with Maureen standing in her drive looking rather forlorn.  As we tried to entice Maureen back home she stormed off saying ‘of course Paul never does anything wrong’.  I trailed her as she walked around the block before eventually coaxing her home with the prospect of a cup of tea.

It was fascinating to watch Maureen on her chosen route around our neighbourhood. She stopped several times; occasionally venturing down neighbour’s drives before she neared our home.  We bumped into one or two friendly faces on our journey.  They are now familiar with Maureen looking for me and taking in the fresh air she constantly craves.

Yesterday’s rude awakening has left me in no doubt that tomorrow’s Respite Break is sorely needed.  I just hope that I can stay awake for long enough to make sure that Maureen gets to Ashgrove Residential Care Home in one piece.

I hope it warms up today as our central heating boiler has developed a fault.  A cold house with no hot water might just tip the balance between Maureen wanting to stay here tomorrow or go down the road into the warmth of  Ashgrove.  How strange it would be if it took a while to get the heating working again!

Dementia: Time For Some Self-care

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Maureen will be going into Ashgrove Care Home on Monday morning, provisionally for a week.   I met with the new manager of Ashgrove yesterday, along with Maureen’s Key Worker, and I’m confident that Maureen will be in safe hands and well looked after.

I have agreed not to visit Maureen during her stay in Ashgrove to give her a chance to setlle in in her new surroundings.  On Friday I will meet with her Key Worker to find out how things are going and discuss the best way forward.

I have no fixed plans for my week’s respite other than recharging my batteries.  The quote above, kindly forwarded by my cyber friend Dominique Klotz, says it all!

Update: Maureen woke shortly after I posted the above passages and asked me ‘if I knew where her husband was?’.  My explanations were met with disbelief and the news that ‘I couldn’t be her husband as her parents were paying for her to be looked after here’.  She is currently sitting in the lounge waiting for her first cup of tea of the day to cool looking totally bewildered.  It is really challenging to know how to comfort her when she is not sure who I am: particularly when she continues to be afraid of men!