Tag Archives: Tiredness

Dementia: A Care Giver Knows

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I cannot think of any better words that sum up what it is like for me to be a Care Giver to my wife than the following:

A Caregiver Knows…

Did you ever wonder how much pain and grief your heart could take?

A caregiver knows.

Did ever wonder how strong you are, how many things you can do at once, or how many failed attempts you could endure?

A caregiver knows.

Did you ever wonder if frustration, anxiety, or sheer exhaustion could actually kill you?

All too often, caregivers know this too.

Have you ever cared for someone, who instead of getting slowly better, is slowly fading away, piece by piece… right before your very eyes?

Have you ever felt the despair and hopelessness of that?

Caregivers for dementia patients know this despair and live it every single day.

The remainder of this piece can be found at: A Care Giver Knows

Dementia: Taking Control

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One area in which I can take control is the home environment.  Maureen often thinks she is either in her Aunties house or  a Care Home as she doesn’t think she lives here.  That doesn’t really matter.  What I have to do is to make our home more dementia friendly to make life easier for both of us.  Sorting out Maureen’s clothes so she is not overwhelmed by choice can only help.

Yesterday afternoon was a very distressing experience for me.  Maureen has loads of clothes and turns out every day in her blue joggers and a choice of a few of T Shirts.  There are also couple of cardigans she wears and that is about it.   So while she had a late afternoon doze yesterday I pared down her wardrobe a little further.  There are now two further bags of clothes for the charity shop.  The whole process was upsetting, as most of the items brought back happy memories of times and places.

I just had to do something practical yesterday to try to move things forward.  Even more inertia from social services yesterday suggesting a visit but not able to confirm.  I just wonder what it will take for them to move on the need for more support here and a Carers’ Assessment .  I wonder if they wait until Care Partners collapse in a heap before they move themselves?

One real positive from yesterday.  Our new kid on the block, Rosie, shone once gain.  Her and Maureen have really hit it off and my task is clear: to nab her for some weekend sits when she starts University in a couple of weeks.  All of this would be easier if social services would let go of the reigns and let me take control.  I do not understand what their procrastination is all about.  I am beginning to wonder if there are systemic problems that mean they simply lack the capacity to give a worn out old Care Partner the support he desperately needs.

Dementia: What A Difference A Day Makes

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It’s 6 am on Sunday morning and we are both up with a spring in our step.  I have been up for a while tidying up one or two loose ends.  Maureen has just come down to seek her first cuppa of the day.  I know beauty is in the eye of the beholder but she looks ‘something else’ today.  The reason for both of us feeling good today is largely because Chloe was here yesterday for a couple of hours.

Our social worker managed to squeeze us another two hours of carer sits.  To get our ‘adopted daughter’ at such short notice was down to Michelle at the Care Agency.  When you consider that both parties are under considerable pressure I feel refreshed that they recognised the need for a compassionate response to my cry for help.  Such responses are really appreciated when the relentless pressure of being  Care Partner is grinding you down.  They both spotted a man on his knees and managed to pull out all the stops to help him stand a little easier.

Chloe breezed in with her normal matter of fact manner telling Maureen she had: ‘popped in because she was in the area’.  Within a short time she skilfully eased Maureen into the shower and things were underway.  This allowed me to pop out into the garden and sort out our vegetable patch.  Once the beans were down and in the compost bin, I put my head around the door to see the ‘hairdresser’  in action.  As Maureen says: ‘they are not allowed to cut as they are not trained to do hairdressing but they can wash and blow dry’.  Chloe is also an ace with the iron, the vacuum cleaner and all the other gadgets we use to make life a little easier.

When we ‘ran away’ to Cleethorpes all those years ago we never thought that we would get old one day.  Our respective children are scattered around the country; busy with their own lives.  Adopting Chloe has made such a difference to our lives and now we have further plans to add to our family.  Rosie is here on Wednesday again and she seems a likley candidate to help us fill a gap in our lives.  More like a granddaughter, as she is about to go off to University, but we can still see her at weekends if we play our cards right.  Extending our family in this way will make our house seem even more like a home.

With dementia you never know what any day will bring, yet there is room for optimism in this household today.  If we continue to turn our house into a home then there is no need to feel down that Autumn is on the horizon.  It is September the start of Term and another Academic Year.   It is up to us to make of it what we can.  Our subject matter that is absolutely clear: to live every day as if it is our last.  Thanks Kate for that one:

Dementia: ‘He’s Taken All My Clothes and Money’

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I could see that Maureen was giving me funny looks yesterday morning and  behaving rather strangely.  This followed on from considerable confusion on the Sunday evening.  Around 8 ‘o’ clock she mentioned that I had not returned from watching a football match.  She was convinced that I had been watching a local match at a nearby park.  At 10 ‘o’clock she asked me if I would help her to go out looking for me as she was beginning to get worried that I had been out for a long time.  We walked for a while and she continued to talk to me in the third person.

On our way back home Maureen took a wrong turning and I called her back onto the correct route.   She immediately recognised me as her husband again and carried on with a normal conversation.  We went to bed shortly after returning home, after the usual ritual of finding missing gear.

When Chloe,our carer, arrived yesterday morning Maureen had gone back to sleep so we chatted for a while about the events of the previous evening.   Chloe mentioned that she sometimes has similar experiences; with Maureen forgetting who she is.  On my return from shopping Chloe mentioned that Maureen had been very upset while I had been out.  She had refused to get dressed because: ‘Paul had taken all her clothes and money.’

Following further conversations with Chloe, our G P yesterday afternoon, and advice from Colleagues on Talking Point I have now come to the conclusion that it is too risky to leave Maureen to her own devices any longer.  It is no longer possible to predict Maureen’s level of confusion and things can change so rapidly.  Maureen’s current presentation adds an air of urgency to the need to review our Care Plan and conduct a Carers’ Assessment.  Unfortunately, there is no news on that front and it gets worse.

I called at the Care Agency yesterday morning and they are in turmoil.  They have lost the contract to deliver care for social services and are the process of handing over to another Agency.  You couldn’t make it up and it seems my patience is to be tested yet again.  In the mean time dementia marches on but I’m still standing – just about!