Dementia: What A Difference A Day Makes

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: Funny Friday

It was a funny old day all round yesterday.  Maureen seemed exceptionally tired and so we didn’t have ‘breakfast’ until 4 pm.  When I returned from shopping in the morning Chloe said Maureen didn’t want to get out of bed because she felt tired.  Chloe had taken her a drink up and chatted to her in the bedroom.  As always Chloe had smartened up the house in my absence and ironed all the clothes in the basket.

I popped up to see Maureen a couple of times in the afternon and she was still sleepy.  During one of my visits she complained that Chloe had woken her up to discuss how her brother and his wife were having discussions about the forthcoming addition to her family.  She also mentioned that someone had told her I had been drunk on the previous evening.  Rather puzzling as I had been with her all night and not a drop of alcohol had passed my lips.

Porridge was served about 5 pm; along with normal accompaniments. We then went out for a short walk to retrieve a discarded dusbin that I had spotted on a previous stroll.  Maureen enjoyed the walk but had no recollection  we were following our steps from earlier in the week.  Nevertheless, she could see that another bin for compost making would be helpful to my horticultural pursuits.

Friday fish and chips was prepared and consumed as normal; followed by fresh fruit salad and ice cream.  You will note that we are taking the advice about healthy eating seriously.  Also the glass of sherry, or two, can only have helped any stroke prevention regime.  I’d better add Maureen only had a very small glass and left the rest to me!

Maureen got into a heck of a mess clearing up the chaotic evidence of my efforts in the kitchen.  I had ‘bobbed off’ in the chair to find her disgruntled over the kitchen sink.  Clean pots and pans were alongside those that had not been washed on the draining board.  It was not surprising she had got in a mess – I had  caused it.  I have to tidy up as I go along as I am being unfair on my washer up!

It will be interesting to see how things go today.  Hello….  Maureen has just woken up very confused asking me who has been on the phone.  There have been no calls this morning.  The way she is looking at me it is likely she is unsure who I am.  She has just asked me:  ‘ if am going to work today’.   Now it’s: ‘Where is the other Paul; not you?’

Just another day at the office then………

Dementia: Thank Goodness It’s Friday

There are many reasons to say TGIF because looking back it’s been a relatively good week.  Maureen has had an exceptional week: her continued resilience to have a life with dementia is heartening.  There have been times this week when I have felt on my knees but when I look at the effort my wife puts in: hour after hour, day after day, I am immediately rejuvented.  How on earth can I let tiredness get the better of me when I see my wife rallying against her brain quite simply closing down?

Maureen brought tears of joy to my eyes the other morning when I saw that she was feeling comfortable with new underwear. She sat on the bed looking so pleased that she had found the right level of support and comfort at last.    When she took off her T shirt and put her new bra next to her skin it felt even better.  What a relief after months of bringing underwear back here and rejection almost being an automatic response.

Then there is Maureen’s performance in the marathon.  Something of a personal best without anything that was performance enhancing.  Again seeing her sheer joy walking along; country lanes, corn fields and returning on the coastal path was exhilerating.   As she walked she kept reminding me that she was following medical advice ‘to take lots of exercise’.  I thought after the distance we covered she would be zonked out for days but after a nap or two she has been as right as rain.

Then yesterday we had such a laugh.  I caught her up after she had snook off on a tour around the local estate.  I used my bike to track the happy wanderer down.  It was fascinating to see how she finds her way around a maze of; drives, avenues and streets.  She wandered around a close opposite our house as I put my bike in the garage.  No sooner had we sat down and our front door rang with an enquiry that gave us a laugh for the following hour.

Mrs B called and enquired if Maureen was the blonde that her husband had seen wandering down their drive.  Maureen had no recollection of being anywhere near their house and made appropriate noises.  Mrs B carried on her interrorgation for some time, made her excuses and left.  All in good humour I might add and I tried to put Mrs B’s concerns at rest as I followed her out the door.

After Mrs B had left Maureen and I were in stitches for ages, as I warned her that her husband snatching reputation was alive and kicking.  She warmed to the pun and we had fun for some time afterwards, about the steps she would need to take to make the local women feel safe.

The really good news about Friday is that Chloe will be here at 10 am.  The even better news she will also be here on Saturday for an additional sit.  Tracey our social worker has come up trumps and organised that we will have additonal support tomorrow.  Michelle at the Care Agency has pulled one out of the bag  and organised Chloe our adopted daughter to be here.  It don’t get much better than that!  Well it does: both of Maureen’s sons have been in touch over the last couple of days and they are rallying to the call.

Blimey I would have been in trouble if that girl Heather had read this post before this addition:   I am meeting my Admiral Nurse this morning.  How on earth could I ever forget that Gal?

So TGIF after a relatively good week and the potential for even more support on the horizon.

Common Symptoms of Dementia

I have just come across this graphic that highlights the common symptoms of dementia.  Maureen exhibits them all every day of her life as her dementia progresses.

Dementia: Additional Care Needed To Cope With Further Decline

I could give examples galore that illustrate how Maureen’s dementia is progressing and the impact it is having on me, Perhaps just a glimpse of the last couple of days will suffice.  On Tuesday night Maureen insisted that she always slept on the sofa as she didn’t have a bedroom here. At 6 am on Wednesday morning she awoke and said: ‘Where is everybody?  I thought you had all gone out and left me on my own again.’  She was very frightened; confused and agitated.  Her confusion continued well into the morning.   When a carer knocked at the door at 10 am Maureen greeted her with:  ‘Hello who are you and what are you doing here?’.  Later in the morning she confided in me that it was: ‘Very naughty of the Care Agency to send people without giving us warning.’  This morning she woke at 2 am and asked: ‘if it was time to get up’ and the same again an hour later.   I could go on……..

The top and bottom of all this is Maureen is extremely confused for large parts of the day.  She is very frightened if I am out of sight, as she fears she has been left on her own.   On occasions she is not sure who I or the carers are. She frequently doesn’t know where she is. Her ability to distinguish between day and night has gone.  Generally, her attempts to assist with household tasks only helps rather than hinders if she is continually prompted.   In the last few days she has been outside the house partially dressed.  It is no longer sensible to leave to Maureen in the house on her own.

I now feel I have to be on constant watch to keep Maureen safe and sound.  This is fundamantelly different to her presentation when our current Care Plan was drawn up.  Therefore, the demands on me as a Care Partner have increased significantly.  Hence the need for an urgent review of our situation.

There are a number of things that need to happen to cope with the ongoing progression of Maureen’s dementia.  Something needs to be done to deal with my present level of exhaustion as carer burnout may be near.  I have informed our social worker accordingly and Tracey is trying to arrange additional support.  Unfortunately she is on a training course for the next couple of days and is dealing with a  Care Agency that continues to be in turmoil as it hands things over to another concern.

I have managed to progress a couple of matters that should make life simpler and safer for Maureen.  Yesterday morning I  pared down the clothes in her wardrobes so that choice is no longer so much of a burden.  I am hoping that fewer outfilts will simplify life for her in the morning.  In addition, I have ordered a walkie talkie type monitor so that Maureen can contact me immediately when I am out of sight.  This will also allow me to be in the garage or garden and know that Maureen is safe in her own surroundings.  I am hoping that this will reduce the times when anxiety kicks in when Maureen thinks she has been left alone in the house.

So Monday becomes another D Day here with the social worker calling around one’o’ clock to see how things are going.  It would be great if she has been able to set up a couple of additional sits before her visits.  That would really help to get things off on a positive note as soon as she walks through our door.

This is a very early morning post and I am hoping that now I have got this off my chest I might manage a little more sleep.

Being a “burden” to our care partners

This blog from Kate Swaffer is so powerful that I wanted to share it with others.

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

burden

Yearning for life before dementia
Never to return
At least, not until I die

But I say to myself
Each and every single day
There is no need to die now

The sadness stalks me
Tempting me to give in to dementia
Hiding in the recesses of my mind

Telling me to stop paddling
To give up and let myself sink
And give in to the symptoms of dementia

If I decided to do that
The huge impact on my husband and sons
And my love for them

May disappear from their sight
From their being
And my love may feel as if it is not there

Instead filled with the burdens of
Caring for a wife and mother
With dementia

Screen Shot 2015-09-08 at 9.40.15 pm

View original post

Dementia: ‘I don’t believe it’.

I have chosen  YouTube footage of Victor Meldrew’s  to open this post: ‘I don’t believe it’.  Quite simply because there appears to be progress on the underwear crisis that has bugged Maureen since stroke.  Yesterday morning: no tears and an announcement that decent support and coverage was in place.  Quite unbelievable after the tears and upset that have been part of Maureen’s early morning routine for months.  I think it is worth explaining the team effort that has gone into solving this problem.

My efforts at solving the shortage of suitable underwear have been fun but unproductive.  I have been pleasantly surprised at the help I have received from female shop assistants as I have trespassed amongst the ladies undies.  My knowledge of the intimate detail of ‘unmentionables’ (as my mum used to call them) has blossomed as I have perused the hangers of most superstores.  I think it is possible that my white thatch has eased my way around those silky areas that are not normally familiar to men.  On the brink of giving up I asked Chloe, Maureen’s main carer, to intervene.  With just one mission she appears to have hit the jackpot; with just a little help from your truly.

Chloe has obviously sized Maureen well; as my efforts had never felt comfortable.  However, It is possible that I have played a key card to ease things along.  I not only washed the latest purchases before secluding them in Maureen’s undies drawer, I also used fabric conditioner to make them softer to her sensitive skin.   Another example of helpful advice from friends on Talking Point.   So teamwork may well have brought to an end the distress that became part of Maureen’s daily routine.  Only time will tell and I certainly hope I will be able to continue with my Victor Meldrew impressions.

NB: This is an early morning post as Maureen ‘camped out’ on the sofa last night.  I will explain all tomorrow.  Things are changing rapidly here and this is more than a little dip in her presentation.

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

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!

Dementia: Resenting Being A Care Partner

I am beginning to resent the restrictions placed on my life by being a Care Partner to Maureen.  As Chloe, our regular carer, said to me the other day: ‘there is a danger that you begin to feel like a prisoner in your own home’.  I can still pop out for the odd hour but it is something of a calculated gamble.  I escaped for a couple of hours yesterday and managed to see the Sky Blues beat Burton Albion.  There were some concerns on my return and Maureen was decidedly quiet.

Things were not quite as they should have been when I got home from watching the football match:  the fridge door was wide open and keys missing.  I did not probe the latter immediately and they surfaced during the evening; even two additional keys that had been missing for days.

I think it is likely that Maureen is not happy with me going because she doesn’t like being left on her own.   It is difficult to know if she resents me going out or is frightened about being left alone.  The coming week gives me an opportunity to deal with my resentment and to take account of her concerns about being left alone..

My initial steps to freedom need to be to make sure I go out when there is a carer sit.  I need to return to a routine of activities that have fallen by the wayside in recent months. Tai Chi, swimming and meditation need to be regular pursuits; both for company and well being. There is nothing stopping me returning to both Tai Chi and a visit to the Leisure Centre this week.  This morning will be taken up with physiotherapy treatment on my troublesome left shoulder.

I am hoping to visit folks in Coventry in a couple of weeks and will clarify my plans with those who have to arrange care in the morning.  Just to be on the safe side I will pop into the Care Agency shortly to chat over our requirements when I am planning to be away from home in the coming months.    This may alleviate the problems of the past, where the social worker and the Care Agency have been passing the buck and I have ended up not going to see mum.

So my simple plan for dealing with resentment is two fold.  Firstly, accept that Maureen has every right to feel ‘miffed’ about being left on her own when I go out to pursue my own interests: her resentment could well be about having dementia.  Secondly, I can escape from my chains and reduce my feelings of resentment by incrementally developing a life of my own.  I simply have to keep taking one small step at a time.  As Maureen often tells me: ‘Slowly, slowly catchee monkey’.

Dementia: Dealing With Decline

There is no doubt that I have to up my game where dealing with decline is concerned.  Anyone who sees Maureen on a regular basis comments on the rate of her decline.  One of the dangers of being here day after day you don’t always notice the rate of decline: you just adjust to it.

I have possibly got a little better at accepting that decline is inevitable with dementia.  On occasions i still kid myself that I can mitigate the damage from the ongoing brain injury.  However, I do accept that dementia is controlling Maureen’s presentation.   Even though I still gasp at the lack of empathy and compassion on many a day.  Where I am falling short is taking account of her limitations in our daily living.

It is time to run this household like a Care Home for residents with dementia.  I have to make some fundamental changes if we are to have a life with dementia, rather than a nightmare with the condition.  If my current level of exhaustion continues collapse will follow and events will be taken out of my hands.

A visit to Dennis’s Care home on Friday led me to shudder and vow to keep Maureen out of places like that for as long as I am able.  Maureen’s uncle looked to have aged ten years since I had seen him a couple of months ago.  His only unsolicited comment of: ‘Look at the state of that’ summed it all up in a simple sentence.  He is no longer able to hold a conversation but clearly felt unhappy about his new home and the state of his fellow residents.   I left his side after a short while: struggling to hold back my tears.

One thing I need to do pretty quickly is to get more help with our daily living.  There is little point in getting hung up on a Carers Assessment – that will happen in due course.  We need the likes of Chloe in here more than three days a week.  My conversation with her on Friday helped me to see a simple way forward.  I have to be the Manager of this Care Home: I can no longer do it all by myself; those days have gone.  There are areas where delegation is desperately needed so that I can concentrate on other things.  Perhaps I need to share my current thinking with the followers of this blog.

There are aspects of Maureen’s support that are better carried out by experts.  Chloe has two advantages over me: she is a woman and has considerable experience of cajoling clients with dementia.  I need to leave issues connected with clothing and personal care to the likes of Chloe.  My role has to be on creating a supportive environment to Maureen’s presentation,  I also have to deal with the issue of resentment: the fact that being a Care Partner has taken over my life and there is a simple way forward on that front – pay for what we need.

You get what you pay for in most aspects of life.  We have always been sensible with money bailing each other out throughout our time together.  Neither of us worry about: ‘Spending the Kids Inheritance’.  Our savings will be spent on ensuring a good quality of life for both of us.  There is little point in worrying about what we are entitled to from the State when professional staff are on training courses or too busy to deal with such matters.  We will buy in what we need and argue for retrospective adjustments in our savings where necessary.

So some good news for all concerned in my family.  I will be down to see you soon.  We can make that happen by buying in the care that Maureen needs, so she can be looked after in her own home by staff who are well tuned into her needs.

Please Note:  I am very early with this post at 6 am for good reason.  Some things are missing that need to be found if we are to have a safe day.  Also the Sky Blues are on Sky the afternoon and as an avid Coventry City supporter I need to find a venue that will be showing the game  These are both important matters for any Manager of a Care Home!