Dementia: Memories Of The White House

Image result for the white house agni corfu picture

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!

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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!

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Dementia: The Aftermath Of Respite

Image result for Problems with Respite Picture

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’.

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Dementia: Sleeping It Off

Image result for Sleeping It Off Elderly Woman PictureMaureen 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!

 

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Dementia: No Gain Without Pain!

Image result for No Gain Without Pain Picture

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!

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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!

 

 

 

 

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Dementia: Facilitating The Great Escape

Image result for I've Escaped Picture

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!

 

 

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Dementia: Sundowning

SunDown Syndrome Picture:

I often struggle with Maureen’s presentation during the late evening.  One possible explanation for her behaviour is ‘Sundowning’ and Tracey Maxfield directed me to this article yesterday after an exchange on Linkedin:  

This article is a publication of TogetherinThis.com and has been republished with their permission.”

Editor’s Note: The term “Sundowning” is sometimes used as a negative label which can be damaging to the care provided, and results in unjust stereotyping. This contributes to approaches to care that focus on weakness rather than strength, illness rather than wellness, and victims rather than whole persons. It’s important, as the author states, to look at any behaviors as a form of communication. This will help you discover, and hopefully, address the trigger that is negatively affecting your loved one. Learn More.


Contributing Writer:  Christy Turner, founder of Dementia Sherpa

Sundowning can be one of the scariest things you encounter as a dementia care partner. Everything seems to be going well, and then, seemingly out of the blue, your person goes into full meltdown mode.

What happened?

Depending on the time of day, it’s probably sundowning.

Sundowning refers to behaviors that occur late in the day; hence, the name. This can include any type of behavior. The common element is how difficult it is to “reach” your person, as they may seem inconsolable.

Keeping in mind that “behaviors” is just another word for “communication” can help make it a less scary experience.

Remember that for people living with dementia, it’s easier to understand our nonverbal cues and body language than our words, so do your best to stay calm throughout the experience.

Here’s what else to do:

1. Maintain visual supervision. Depending on the severity of the situation, you probably shouldn’t get inside their personal bubble. Safety is the first priority, so just do what you need to do to maintain that, without being intrusive.

2. Once sundowning has started, it’s very difficult to stop. If caught early enough, you can try distraction and redirection.

Understand that in order to fully stop it, you’ll need to be completely engaged with your person for the next few hours.

Using the television usually won’t work.


Visit the Together in This Amazing Store for Useful Items to
Help You Navigate Sundowning


3. Turn on all the lights and cut off other stimulation. This decreases confusion both about the time of day, as well as helps with visual hallucinations and visual-spatial impairments. Cutting off overstimulation (TV, radio, people talking) is one of the smartest, most effective things you can do.

4. Match your tone and pitch to your person’s. This isn’t to say yell back, but if they’re throwing out a heavy-metal kind of energy, you bringing a Lawrence Welk vibe is just going to irritate.

5. Whip out the lavender or geranium essential oils. Either of these in a diffuser can be super useful in promoting calm. Also consider spraying some on a shirt collar.

6. Burn off the energy. Any type of physical activity will be helpful in using up the sundowning energy.

7. If it’s safe, offer physical affection. Hugs make everyone feel better, but if that’s not possible offer your hand (palm up, a sign of submission) to hold.

8. Synchronize your breathing. If it’s safe to get close enough, synchronize your breathing. Once synced, work toward deep breaths and long exhales.

9. Please don’t be a jerk! This only happens unintentionally, but it’s still not cool. Think of a time when you were angrier and more frustrated than you’ve ever been in your life.

Now, think of your parent or partner telling you to “just calm down” or “relax” or assuring you that “you’re fine” and “there’s no need to be so upset.”

Helpful? Nope! You probably felt your blood pressure go up even more, right? Same goes for people living with dementia. We all like to be taken seriously and have our feelings validated.

10. Be a hero. Remember, as scary as this is for you, it’s even more terrifying for a person living with dementia.

They don’t know why this is happening, they can’t verbally express their thoughts and feelings, and they’ve lost the ability to self-soothe.

You make it okay for them by stepping into their reality and offering reassurance: “I’m here for you. I love you. I’m going to keep you safe.

I’m not going to let anything bad happen to you. I will always protect you.”


About the Author: Christy Turner is the founder of Dementia Sherpa. She’s helped over 1100 through the rough terrain that is dementia.you can visit her site and learn more about her and her great resources at DementiaSherpa.com.

Footnote:  I’m meeting with Maureen’s Key Worker in three hours.  He planned to visit her yesterday afternoon in Ashgrove Care Home and I’m really looking forward to hearing how she is doing.

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Dementia: Early Diagnosis

Excellent news from:

AoFNHSS Hi Res

Dementia diagnosis in Cumbria now four times faster thanks to ‘virtual clinics’

‘New virtual clinics in the Memory Matters team at Cumbria Partnership NHS Foundation Trust means patients suspected of having dementia are able to be diagnosed four times faster than before.

This is because the whole referral to diagnosis process has been streamlined.

David Storm Senior Clinical Services Manager explained: “Staff in the Memory Matters team at Carleton Clinic Carlisle have been piloting Virtual Clinics since early in 2015. There have been radical changes in how the team works. Previously patients who were referred to the team by their GPs went through a long diagnosis process which included being seen initially by a mental health nurse for assessment, tests and brain scans requested, then sometimes a substantial wait for a follow up 45 minute appointment with a Psychiatrist.

In the Virtual Clinics new referrals are screened, the patient is then seen for a full assessment by a nurse including elements previously done by a Psychiatrist. A brain scan is then requested, together with other assessments with the person and their family. The ‘virtual’ part is next; the nurse will present the case – without the patient, to the Psychiatrist and Memory Matters team, so all the experts needed are in the same room. An in-depth discussion is held which takes into account the patient, their family and carers, as well as all the assessment results. A diagnosis and appropriate treatment plan is made based on the information at hand. The diagnosis is usually given to the patient by the same nurse they have seen at the initial assessment which makes the patient feel more comfortable.

Virtual Clinics have now been rolled out across Cumbria. The new diagnosis process means that the patient is being seen by less people and the process is speeded up. This is incredibly important considering the increasing numbers of people with dementia in the county; the number of people being referred for diagnosis has nearly doubled in the last year*.

Dr Darren Reynolds Consultant Psychiatrist said” More patients are seen in much less time. Nurses carry out high level assessments, share knowledge and there is a much better outcome for the patient”.

Helen Todd, Senior Nurse in the community mental health team said: “The Memory Matters team continually challenge themselves on how they can keep improving and what they can do better. Referrals have increased by almost 200% in the past 12 months and a diagnosis is now given 4 x quicker than previously. There is a much better use of resources within the team and no there was no need to recruit any extra staff so we are far more efficient. Now there are no waiting lists and patients are seen within 15 days. Also because of the team’s #seethePERSON project, which focusses on the person behind the illness – all people referred are seen from their perspective, placing Dementia into the context of their life as a whole and focussing on improving quality life, not just the symptoms which benefits both patients and families”.

Feedback from GPs is very positive. Some comments were “Great idea, no negatives from me!” “It has been great – patients seen quickly, tested and given a management plan.” “I think it’s working well. Same nurse equals consistent assessments. We couldn’t get this detail in primary care without investing lots of time. Allows Consultants to see the more complex”.

Footnote.  The above article is another example of the Academy sharing Fabulous Stuff.

Yesterday:  I caught up with some good folk from Navigo to thank them for their support over the years.  Just by chance,  I had the good fortune of catching up with a Crisis Worker who asked me if I remembered him.   At first,  I confused him with another member of staff,  then I recalled some advice he gave me that was fundamental to moving on from depressive episodes: ‘never go to bed without having plans for the next day’.  Anyone who has ever had depression will know how scary it is to wake up in the morning and have no idea how you are going to fill your day!

I also made good progress on a number of domestic issues that have been hanging around for a while.  Hopefully, this will mean that I’m a little more relaxed when Maureen comes home from Ashgrove Care Home on Monday afternoon.

This morning:  After another early start to the day, I have already taken in both the Fureys and the Highwaymen in concert and will be leaving shortly to join the early birds at Cleethorpes Leisure Centre

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Dementia: Dementia Awareness Week

As a contribution to Dementia Awareness Week I ‘m submitting this short piece to Dementia UK for possible publication:

Admiral Nurses: Rescue RangersImage result for Dementia Uk Photograph

Any diagnosis of dementia for your loved one is frightening.  When it’s vascular it’s terrifying as there is no treatment for this condition.  When Maureen diagnosis moved from Mild Cognitive Impairment to Vascular Dementia a discharge from our Memory Service followed, along with information about groups and organisations that might be able to help.

I think it was just by chance I heard about Admiral Nurses during a meeting of the Patient Participation Group at our Medical Centre.  Someone I respected was singing their praises and gave me some contact numbers.  Three years and one Admiral Nurse later I’m indebted to my colleague from our PPG.

I’m sure like most Care Partners I’m often in despair, completely at a loss to try to understand my wife’s presentation.  On other occasions, I’m not sure what to do when nothing I try seems to shift my wife from an unattainable focus: ‘I want to go home to live with my parents’ – (who have long since passed).

I’m demanding by nature and our Admiral Nurses are frequently overloaded with my requests for support and advice.  Mel and I are now scheduled to meet every fortnight as I attempt to cope with the progression of my wife’s condition.  I also forward my daily Blog or telephone Mel when the going gets tough: it would be unusual if there isn’t a reply within hours.

IMHO Admiral Nurses should be available throughout the country.  I certainly would not cope with the expertise that is always available despite workloads that are probably exceed anything a professional would be expected to undertake.

Ends

I’m catching up with a member of staff from Navigo in an hour.  Five years ago as the Manager of an Acute Psychiatric Unit, she advised me to ask my Psychiatrist for Day Release.   Returning home for a day was a significant step in my recovery from recurrent depression.  Forgoing basking in the Spa and Sauna for a glass of water is a small price to pay for an opportunity to thank her for that advice!

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