Tag Archives: Support

Dementia: ‘Feelings Matter Most’ (Sheard)

Mixed Dementia,

Our Key Worker was with us for about an hour yesterday as part of his assessment of Maureen following the Best Interest Meeting.  As always she was pleased to see him and after he had gone she said; ‘I think he’s pleased with us’.   She went on to say that she believed he had the authority to split us up, even send us to separate Care Homes but she didn’t think he would ever do that.

Earlier in the year, a Manager from our Memory Service pointed me in the direction of David Sheard who asserts that feelings matter most when someone has dementia.  I have no idea if our Key Worker has ever heard of the man but he always leaves Maureen with a positive feeling and as he left she said: ‘please call again’

I look forward to meeting our Key Worker on Thursday when we will attempt to put ‘the meat on the bones’ of our Support Package.   Maureen and I continue to count our blessings for the professional and sensitive approach of the man!

Dementia: A Marathon Of Compassion

minimising distress, ,

Image result for Compassion Dementia Picture

Yesterday turned into a marathon and it was almost 5 ‘o’ clock before we were able to hit the sack this morning.  Following an evening telephone conversation with a G P, I decided to take Maureen to Grimsby Hospital.  The waiting room was busy on arrival and packed during certain times during a long night.  At the end of our stint, I’m not sure how much had ‘cleared’ but I’m hoping that laxatives will return things to normal in the next few days.

I would award Grimsby Hospital top marks for being dementia friendly.  From the moment we arrived at reception until Maureen was discharged she was treated with dignity and respect.  She was never once challenged when she felt the need to explore her surroundings as she waited for examination, treatment or medication.   In fact, staff went out of their way to reassure me that her presentation never once caused them any concern.

Clee Medical Centre have also been extremely supportive in the last 24 hours: as always.  I have received almost instant responses to my telephone calls with advice that has always been person-centred.

We are not out of the woods just yet and Sleeping Beauty is catching up as I post.   It has been good to have 5 days of Respite as I don’t think I would have got anywhere near a personal best yesterday without it.   As a fun runner, I decided a half marathon was far enough.  Maureen went well during the ‘race’ as her compassion shone through.  Despite her discomfort; she consoled distressed children, chatted with anxious parents and entertained fellow patients with her repartee.

Dementia rather than personal choice is often calling the shots in our lives.  However, with the compassionate support that is always on offer in this area, we will always try to give it a run for its money!

N.B. I have decided to break my new regime and post today so I can copy the above to Grimsby Hospital PALS and staff at Clee Medical Centre.

Dementia: It’s Good News Week

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  • Maureen will be overjoyed this morning with good news from Girl Monday.
  • The Best Interest Meeting is now only days away.
  • Spring is here and Maureen wants to be out in the fresh air.
  • Maureen went for a walk on Saturday and Sunday and found her way back home.
  • The repainted green doors are helping Maureen find her own way to the bathroom.
  • Reorganising our bookcase is providing another creative outlet for Maureen.
  • Professional advice is pending to make our house, even more, dementia friendly.
  • I am learning to sleep when Maureen rests thereby easing my sleep deficit.
  • I have found a Care Home that may be suitable for a Respite Break.
  • Family members are reviewing their availability for providing additional support.

I had a great day yesterday watching the Sky Blues win the Checkatrade Trophy on TV. Coventry is often seen as the Phoenix rising from the ashes.  Perhaps dementia has been our blitz and we can find a way to rebuild our lives.  How fortunate that Thursday offers an opportunity for such discussions.

Oh, I nearly forgot about the Roller Coaster:  it had a day off yesterday!

Dementia: A Timely Reminder

Mixed Dementia,

Image result for A Timely Reminder Picture

Ode To A Care Giver

From Wellspring Village Residents at Brightview Concord River

Always be patient for those in need

You must be a good listener, a good listener indeed.

Always be willing to lend a hand

And empathize so you understand.

Always remember the success I’ve had,

So don’t get discouraged or feel bad.

Put yourself in our place each day you’re here

Speak slowly and calmly, keep communication clear.

Join my reality and focus on what I can still do

Because I’m still here, still here with you.

Ends

Tracey MaxfieldThe above Ode was sent by Tracey Maxfield (pictured right), one of my contacts on Linkedin.  It is typical of the support we receive from all over the world since I started blogging.  I think she must be psychic as the reminder to ‘speak slowly and calmly, keep communication clear’ was really needed today.   I was far from calm when Maureen was missing from the marital bed earlier this morning.  In fact,  I panicked for a while until I found her safely tucked up in the single bed that I regard as ‘my den’ in the lounge.

Today is the second Friday in a row that I have decided not to have a break from my kitchen duties by having fish and chips at a local Care Home.  Another invitation to eat out would have been declined by Maureen today as she knows I usually have haddock and potato wedges on the menu.   What is reassuring is that staff in local Care Homes’understand that Maureen prefers home cooking and ‘where I’m coming from’.  They accept that for Maureen to spend time in their company would not be in either of our Best Interests at the moment.  What a pity that some members of our Multi-Disciplinary Team may well not see it that way when Maureen’s Best Interests are formally discussed next Thursday!

Dementia: Reclaiming Our Lives

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Hey Kate Swaffer, my cyber friend, we still feel young so I hope you don’t mind me using the cover of one of your publications to introduce this post:

Image result for Reclaiming Our Lives from dementia Picture

It was good to have a long chat with our Key Worker yesterday.  He was concerned that arrangements needed to be put in place to ensure my wellbeing.  As he rightly pointed out if I burn-out then matters would be taken out of my hands and Maureen would be taken into care whether I liked it or not.

As anyone who reads this blog would expect it would be unlikely that I would walk down that well-trodden path of seeking respite by placing Maureen in a Care Home.  This route has been far from safe in the past and does not address our aspirations of togetherness.  So I am exploring what all couples do: having a break together.  My initial inquiries have gone well.  One of my sisters has offered open house: although it is a bungalow in her case.  The Madhyamaka Buddhist Centre are also keen to accommodate us in their tranquil surroundings:

Image result for madhyamaka kadampa centre yorkshire

My previous plans to have a regular break by myself at the Centre do not make sense: we are a married couple who enjoy being together.  I’m sure this is only the tip of the iceberg of getting our lives back as we come up with other ideas for mini-holidays and family members invite us to travel around the country to share their company.

‘Ginger’, as Maureen calls him, also encouraged me to put in place structured arrangements for personal support.  I have, consequently, arranged to meet my Admiral Nurse every two weeks.  This Blog will be used as a basis for discussion on how things have gone in the preceding fortnight along with the reflections of carers.  In addition, I will use my Support Worker from the Alzheimer’s Society to chat over my plans ‘as and when’ as they say.

Plans are already in place to make our home safer and more dementia friendly.  Our decorator is imminent to use colour to make it easier for Maureen to find her way around. Our builder is holding off on plans to make our patio safer until the danger of frost has passed.

Spring is in the air and there is plenty to do in our garden.  It would be easy to spend the summer months pottering in the garden and enjoying the tranquility of Cleethorpes.  This would not address aspirations to get our lives back.  However, if we make sensible arrangements to travel further afield who knows where we might get to in the coming months: then we will both feel we are living again!

Dementia: Feel The Fear And Do It Anyway?

Mixed Dementia, ,

Image result for Feel The Fear and do it Anyway PictureAs ‘Girl Monday’ was off sick yesterday I tried something a little different. We needed some basics so Maureen came with me to Aldi where she seemed ill at ease, despite almost skipping around on our last visit.  When we were putting our purchases in the car she said ‘she felt useless; as she was no longer capable of shopping alone’.  She recalled earlier days where she filled up the shopping trolley alongside adding up the cost as she traversed the aisles in supermarkets.

We chatted as we made the homeward journey and I decided on some action as we neared our fishmongers.  I stood outside his shop with tears in my eyes watching Maureen chatting confidently to the owner as she took advantage of today’s Special Offer: ‘Three pounds of haddock for £10’.

During the afternoon Maureen couldn’t settle and frequently came to find me if I was out of sight.  Her shadowing became intense as the evening approached and she often sought a hug telling me how frightened she had become.  We retired at 8 pm as we were both exhausted and during the night she found me after I had moved to the spare room.  She shared her fears that ‘some people had invaded the house and were cutting up clothes’.  At that juncture, she followed me into the bathroom and closed the door behind her at a time I would normally enjoy some privacy.

I shared my concerns about Maureen’s current presentation with certain professional staff yesterday and adjusted some plans accordingly.  Our social worker was on leave and will be aware of my need to speak to him this morning.  Maureen struggled last week with Wednesday’s overnight sit and we will need to review our plans on that front in light of the fear factor.  This may not be one of the occasions to take a leaf out of the advice in the above book but the author may not have been taking dementia into the equation.

I have broken off completing this post to make Maureen a cup of tea.  She has ended up contesting the restrictions on her right to roam.  I accept she has a point and I disagree with the doomsayers that she is not safe when she is out by herself.  This is something I need to explore with others urgently.  Why keep Maureen under lock and key and be seen as the Bad Guy if this is not really necessary?

Footnote: 10.15 am I have just sent Girl Tuesday home she has a dreadful cold and we can’t risk either of us catching her infection.  How on earth carers are being sent out to work with vulnerable clients in that condition defies belief!

Dementia: No Room At The Inn

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We had a stroke of luck on Friday morning when there was no room at the Inn.  A nearby Care Home determined that they would be unable to take Maureen for Day Care or Respite as they felt they were unable to meet her needs.  ‘Houdini’ (AKA Maureen) had already escaped from them once and also found her way into an unsupervised area of the building on another occasion. The Care Home concerned already had three escapologists in permanent care and they decided that taking another one would stretch them beyond safe limits.

The Inn being full turned out to be a blessing in disguise as Girl Friday Night played a blinder and opened up a new range of possibilities for care in the home.  The restful night that followed led to a lovely day where Maureen could only be described as AMAZING:  I hope my cyber friend Susan Macaulay won’t mind me borrowing her nickname!

Our first call in the morning was  Freeman Street Market where Maureen played a significant part in our choice of provisions.

When we moved on to Aldi she looked around for things that we really needed to compliment meals for the forthcoming week.

Later in the morning, she reminded me that we had forgotten to replace her toothbrush so we visited our local pharmacy to make the necessary purchase.

Throughout the morning we experienced Caring Cleethorpes at its best:

  • Stall holders at the Market know Maureen and go more than the extra mile to support her.
  • Staff in Aldi soon warmed to someone who takes a little longer at the till than most customers.
  • Our friends at Lloyds Pharmacy were exceptional as always.
  • Then the icing on the cake when  Girl Saturday arrived and picked up on Maureen’s high spirits to play her part in a lovely morning.

How fortunate that there was no room at the Inn and Maureen escaped ‘being put on a train again’ as she described her last visit to the Care Home concerned.  The Inn also let me off the hook as I had promised Maureen that we stand together in this: no more single tickets for our journey!

 

 

Dementia: Protecting Our Best Interest

Mixed Dementia,

Image result for Best Interest Decision Picture

Our phone line was hot yesterday and there was heavy traffic elsewhere.  On occasions, I resorted to a combative style that is a default from years of trade union and political activity.  Sometimes I think pressure and conflict bring out the best in me.  However, in all of this, the consistent advice was to protect our Best Interest.

‘At the end of the day’ as is often said in this neck of the woods, there was light at the end of the tunnel.  I believe there is a way forward to ensure Maureen receives 24/7 care with me by her side.  Discussions are at a very preliminary stage but I’m optimistic that a radical solution is around the corner.

Music was the medicine that kept us both going throughout a rather busy day.  The resident D J played some golden oldies for a couple of hours and his Singer Lady was in great voice. We played ‘Spot That Tune’ for a while.  We also made up lots of other musical games.  John Travolta and Fred Astaire took in turns to take to the floor sometimes dancing alone, others with Ginger and Olivia at his side.

Image result for Susan Macaulay picture

Susan Macaulay, above on the left, has suggested that we should record events here so that they can be shared on my blog and elsewhere.  This is something we need to explore when the time is right and we have protected our Best Interest.

Chloe is back today and Maureen is really looking forward to seeing her.  Gail has played a blinder in the last couple of days.  If ever I wanted to set up an Agency training care staff these two excellent women from Hica Care Agency would be part of my team.

I continue to count my blessing that we moved to Cleethorpes.  Like all local authorities, North East Lincs continues to be hampered by Austerity Measures.   However, I never doubt the integrity of professional staff as they do their best to paper over the cracks.  Unfortunately, we are already at the sharp end of the crisis in Social Care: a largely unregulated service that is underfunded.  It’s no consolation to know that we didn’t vote for Osborne and his mates from Eton and never would!

Footnote: A rather special song is on my Good Music page today.

Dementia: Preventing Carer Burnout

Uncategorized,

Image result for Preventing Carer Burnout PictureI’m back home after a very refreshing break at Madyhamaka Meditation Centre in Pocklington.  Being out of the firing line of dementia has given me an opportunity to recharge my batteries and think about how to avoid Carer Burnout.  Good fortune led me to choose Ashgrove Care Home as Maureen’s holiday home.

If Chloe, one of our carers, had not given positive feedback on Ashgrove I would not have gone near the place, as it had been in Special Measures.   That would have been a mistake: as any perusal of Ashgroves latest CQC report will show the improvements that have been made at all levels. My experience since the first time I stepped through the door has been equally positive, and I have no doubt that Maureen remains in good hands.  Ashgrove has now become a serious contender for preventing Carer Burnout with; Day Care, overnight stays, and substantial periods of respite becoming distinct possibilities for the future.

As my good friend Kelsang Dorde would say: ‘its a no brainer’

 

Dementia: What A Team!

General, Uncategorized,

I would not have survived yesterday without significant help from friends (including cyber) professional staff, and family members.   It is possible that I will not have space to thank them all so apologies in advance if I fail to mention you!

My day got off to a good start when I met Ed one of my friends from the Buddhist Meditation Group.  Our chat for an hour or so helped me to understand the ‘message’ a little more.  Ed is such a generous man who is always prepared to meet me at the drop of an E Mail and fields my questions in a very helpful manner.  Like all good Buddhist we ended our chat by talking football as Ed is a ‘Town’ supporter and they have just got back into the Football League.

I returned home from the calm of Buddhism to the storm of Dementia.  Maureen was incensed that Gail her carer had stopped her from walking alone.  She vented her frustration at me for several hours and I had to trail her for well over an hour.  There is little point in repeating her recriminations or accusations: they are familiar tales in the dementia bubble.

During one of the intervals in the hostilities I sought advice from Mel my Admiral Nurse but failed to reach her.  Yvonne the Occupational Therapist who had declared Maureen unfit to wander was on holiday but I had a helpful chat with one of her colleagues about the practicalities of re assessment.   I also managed to reach Sue our social worker who provided excellent telephone support and reassured me that I was on the right track (the digital tracker is currently on charge).

I hoped that tea would move things in a new direction as the vegetarian burgers ended Maureen’s hunger strike and I anticipated all was fine and dandy.  Unfortunately the food may have hit one spot but opened another door and Mrs Dementia re -entered wondering ‘when her husband would come to pick her up’.  She asked me ‘if I could give her a lift home as her kids would be wanting their tea’.  Despite my best efforts I couldn’t help her to see that she was home: during her musings she mentioned Clarice, her aunty, and that opened a door in my thinking.

At a lull in the attack I slipped away to call Clarice with a cunning plan.  Half an hour later I dropped Maureen at Clarice’s where she could wait for ‘her husband’ to pick her up.  Once home again I spoke to Colin Maureen’s son on the phone to appraise him of developments.  He was very supportive and we chatted about contingency plans for my visit to Coventry in a couple of weeks.  Colin made some very helpful suggestions about Ian (his brother) and Barrie (his uncle) potential involvement in the arrangements to see my own family.

I returned to pick up Maureen an hour after I had dropped her off.  In my break from hostilities I completely change my outfit and deliberately wore a red fleece that belonged to Maureen.  Clarice was very tolerant of her niece and husband catching up on the latest news for half an hour or so.  When we returned home as Mr and Mrs Collins I manged to keep conversation on how Clarice was coping living by herself now she was widowed.

Maureen had clearly been frightened by Clarice’s plight and shared her fears about being left alone in a strange place.  She was pleased that ‘I wasn’t angry’ about her thoughts about ‘the need to move from the sea-side and go back home’.

I have managed to stay in bed for about 7 hours and recharge the batteries a little. Maureen has woken a couple of times and reopened a number of issues.  Her initial concern was about going back home.  Then she has moved onto her concerns about short-term memory loss.  Once again she claims that ‘no-one has told her how to get her memory back’ and I have gently contradicted her assertion.  This has not gone down particularly well and I hope I haven’t overplayed my hand.

I have never mentioned  Kate Swaffer to Maureen or Dominique Klotz who advised me to check her out.  I’m so fortunate that Paul Martin my counsellor suggested that blogging might be helpful to me as a Care Partner: as it has opened the door to neuroplasticity.  Kate continues to bang the drum about potential and just as Irving Kirsch was my route out of depression Kate’s has to be the guide on this journey.

I firmly believe that Maureen has the potential to regain her independence and wander safely at will.  It is possible for her to show us that she can cross roads safely and with the tracker in place can get safe help if she feels lost.  All she needs is patience from yours truly and she will prove to others that she is safe to wander.  Once we have overcome that little matter it may well be possible to encourage her to explore other opportunities to get her memory back.

Thank goodness that Lisa will be here with her husband and two beautiful daughters by noon.  We both need a day off and with luck we might make it to the circus together.

Jen one of my cyber friends uses her blog to show gratitude and we wouldn’t cope  without such a wonderful Team who have supported us to find our way on this journey. Once again sincere apologies to anyone who I have missed out on today’s post but you know who you are!

Please note:  I am short of time and have not provided any links to Kate Swaffer or Irving Kirsch on this post: they are well worth following up on Google.

Footnote:  I just couldn’t resist that photo.  Did I ever mention that Coventry City won the FA Cup in 1987?

Further Footnote: 8.15 am the attack continues with a vengeance that I have not seen before: another type of circus.  Where are the clowns?