Dementia: ‘Walking Back To Happiness’

General

Yesterday a long walk shortly before lunch made a significant impact on Maureen’s presentation.  It also provided food for thought on helping Maureen to find purpose in her life.

Maureen had been going through a tough period in the morning either sleeping or looking confused as she tried to find something to fill her time.  At one stage she became very upset: convinced that men were following her into the toilet.  Despite my reassurance her distress continued for quite some time.

Around 11 am she woke from her latest sleep crying that she ‘didn’t like it here and wanted to go home’.  As she was feeling hot she went outside to walk around the garden.  I joined her and asked her if she wanted to go for a walk.

We walked for around an hour to the nearby Country Park.  On route we chatted to a couple of dog walkers and their young children.  Maureen came into her own chatting to one toddler after another.  This led me to wonder if we could find more opportunities to be in the company of young children.  We might even be able to find some voluntary work in a creche or playgroup.  This would address one of Maureen’s concerns that she feels useless,as she is not doing anything worthwhile. It would also give her an opportunity to be maternal, a role she clearly enjoys.

 

Dementia: Fear and Confusion on Friday Night

General,

Because of the events of last night today’s post is a departure from the normal routine of Saturday’s Sprinkle of Gratitude .

I have never seen Maureen so confused and frightened as she was last night.  She was very mixed up early this morning until she settled down with dawn on the horizon.  To keep matters brief I’ll use a time log to describe events as they unfolded:

9 pm

Maureen awoke after resting for an hour or so on the sofa.  All seemed well until she became very distressed during her bed time routines.  She began to ask me where the others had gone.  She wondered where my daughter’s were or the girls she used to play with.  Sobbing her heart out she eventually got into bed and pulled the sheets over her head.  As I was leaving the room she said ‘she wanted to get out of this place’.

1.30 am

I was awoken by Maureen crying in the front bedroom.  She seemed very distressed and welcomed me into the marital bed.  She went back to sleep quickly, and I returned to the comfort of the spare room: my painful shoulder seems better if I have a bed to myself at the moment

4 am

Maureen popped into the spare room enquiring if I had slept well, and if my shoulder was any better.  She told me she was going downstairs to make a drink.  I joined her ten minutes later to find her in a state of confusion.  The evidence that she struggles to make a cup of tea was everwhere.  Even with my assistance her efforts brought tears to my eyes: mugs, tea, milk and sugar all over the place.

6 am 

I have eased Maureen into her sleeping position on the sofa.  I imagine she will ‘rest her eyes’ for a while.  She has been very calm for the last hour and we have had great fun talking about all sorts of topics.  She is particularly taken at the moment with ‘when the NHS became free at the point of delivery’.

Conclusion:

Maureen was time travelling last night.  She spent some of her childhood in Cleethorpes.  Whenever she is with her aunties they talk of the great times they had together: sometimes 5 of them sharing a bed.

Maureen is frequently frightened when alone with a man at night.  Her concerns are understandable as fear of abuse never leaves the victim.

Maureen’s functional capacity continues to decline: making a cup of tea or a sandwich is no longer a simple matter.

It’s going to be a long day and it would be really nice if the Sky Blues got back to winning ways at Blackpool this afternoon.

 

 

I could live here…

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What an wonderful example to all Care Homes and Care Partners.

Kate Swaffer (she/her) Kaurna Country's avatar

I am delighted to share this very short video about Group Homes Australia, the one residential dementia and aged care group home I believe I would be happy to live in… and I would also love Maria who works there, to look after me! I don’t usually so actively promote private or any businesses, but this one is worth sharing, and hopefully, replicating. I really do hope others will invest in major change, and join this style of residential home care soon.

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Dementia: ‘On The Road Again’

General

Great news: I’ve made a start this morning on sorting out my shoulder.  I had a lovely walk to the Leisure Centre and did the exercises perscribed by my phyiso.  It’s great to be on ‘the road again’ renewing contact with some old friends.

Maureen was up and about on my return.  She is currently planning a shopping list with Chloe.  With a bit of luck Chloe might even persuade her to go along with her.

There’s Spring in the air this morning.  That walk back along the Prom was beautiful.

Hey Kate (Swaffer) I told you I’d send you a tune from the Great Man!

 

 

Dementia: There Is No Quick Fix

General

Maureen and I both face the prospect that there are no quick fixes for the conditions that are having an impact on our lives.  There has never been a quick fix for Maureen following stroke: she has suffered brain injury and then has to deal with ‘Prescribed Disengagement’ .  The first Consultant she saw at the Memory Clinic put it bluntly: ‘you will have to learn to cope with the new reality’.

There is no quick fix for the torn tendon in my shoulder.  Some suggest surgery is a simple solution.  Others encourage me to stay away from the operating table as there is no guarantee of success.

The solution for both of us is to take more control of our own destiny.  We have to hold to our belief that the body can heal itself even the brain.  It’s another one of those situations where there is no gain without pain.  The only sensible approach is for us to put in the hard work that is needed to allow the body to recover from trauma.

Maureen is already singing in bed this morning, currently: ‘Cockeyed Optimist’.  I’m off to the Leisure Centre shortly to resume my exercise regime.  On we go as they say: we will overcome!

P.S.  I’ve already meditated this morning: must convert Maureen soon!

Dementia: Care Agency Gets Me Off The Hook

General

I struggled for some time yesterday about my plans to go to Coventry on Saturday to see my mum. Maureen is so confused and frightened at the moment that I became worried about leaving her for 14 hours.  The Care Agency helped me to make my mind up once they confirmed no arrangements were in place.  What seemed even more puzzling they didn’t tell me that Sue, who sat with Maureen the last time I had an away day was leaving on Friday.

Why on earth would I leave Maureen with people she didn’t know for 14 hours?   Her reaction  when Sue sat with her when I went to London was challenging enough. Goodness knows what she would have made of it if I had left her with strangers for the day.

This is not the first time that the Care Agency had let me down. On previous occasions it had cost me money when I  had to be cancel arrangements at the last minute..

I’m beginning to think it’s time Social Care was taken back into the Public Sector.  Why are we leaving some of the most vulnerable members of our society in the hands of Agencies who struggle to recruit and retain staff?  The very people who need continuity in their care arrangements are being sold short.  They are being looked after by staff with minimal training, on zero hour contracts.  Their terms and conditions of employment are a disgrace: no time between calls or travelling expenses.  This is hardly a recipe for good care in the community!

 

Dementia: 95 Today

General

It’s my mum’s 95th birthday today.  If I told her how confused, and frightened, Maureen was at the moment she would tell me not to leave her.  She would understand that I need to stay close to Maureen and can’t get to Coventry to visit her.

Mum would also tell me to do everything I could to minimise Maureen’s distress.  If she could she would help me make our home easier for Maureen to cope with. She would be round here like a shot to sort out what we need and what we don’t.

Unfortunately mum lives over 100 miles away and has dementia herself.  So I can’t call on her to help me this time.  However, I know she’s here in spirit, and would fully understand what I have to do at the moment.

Happy birthday mum: I’ll be down to see you as soon as I can.


	

	
	


							


	

		
				

			Dementia: ‘Shaddap you face’
		

		
		

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If there’s one thing that I could do at the moment that would really help Maureen it is to talk less and listen more.  Yesterday as I pressed ahead with solving the problems in my left shoulder I updated her after each phone call.  By the end of the day she was totally confused over what was going to happen next.  In fact she was so bewildered that she suggested we should take a tin out with us on our walk to collect money to help pay for surgery.


This morning I did more of the same.  Maureen asked her daily question, as she woke, about what I was going to do today.  Once again I did it again listing lots activities I had in mind, and left her totally confused.  All I needed to say was ‘potter around the house’.  What she needs to know is that I will be by her side all day.


So hopefully if I sing along with Joe today I’ll keep to my mantra of KISSSS.   His song might just remind me that Maureen is very frightened at the moment and needs reassurance that she is going to be safe.  She doesn’t need lots of complicated information about my shoulder or how I’m going to spend my day.

	

	
	


							


	

		
				

			Dementia: Looking Back: Looking Ahead (Week 9)
		

		
		

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In today’s post I’m only going to look back on yesterday: to consider if our approach to yesterday’s Special Day was effective.  The simple answer is a resounding YES as Maureen enjoyed her day and didn’t show any signs of distress.  Our strategy worked as the whole family worked together as a team to make sure Maureen had a good day.


Unfortunately, the story for my brother was entirely the opposite.  Jean my sister inlaw is beside herself with her experience of my brother’s birthday.  She arrived at his Nursing Home to find him still in bed at 11 am.  Staff told her they were letting him have a lie in as it was his birtday.  It took some effort to encourage the staff to clean him up, get him breakfast, and sort his room out.  When I spoke to her yesterday evening she was distressed by having, once again, to assert herself to ensure that her husband is cared for.


I am yet to have news of my mother’s day but I know family in the area would have done her proud.  I also know there is a lovely photo of mum in the entrance to her Residential Home about her 95th birthday on Wednesday.  I’m sure the Home will do their best to celebrate her birthday along with family members.


It is not easy for anyone trying to deal with the challenges of dementia.  Distress is only minimised when all parties work together.  The teamwork was exceptional for Maureen yesterday, and she had a good day.  I have no idea what went wrong for my brother.  I would be pretty confident that mum was well looked after.


In terms of looking ahead I’m optimistic that we have a common understanding that our prime focus is to minimise Maureen’s distress.  We cannot control her condition but we will all do our level best to create an environment which is supportive to retaining her independence.


There are a number of issues I now need to deal with to help me to continue to be an effective Care Partner.  My sleep pattern continues to give me real concern, as early morning wakening seems so firmly established.  Pain from my legs and shoulder add to my difficulties in staying asleep.  The former has been solved in the past; the latter needs research before I decide whether to manage the condition or go under the scalpel once again.