Maureen’s tiredness continues.   We had a rest at 4pm yesterday afternoon and she has remained in bed for the last 15 hours. I have woken my exhausted wife a couple of times for drinks, to make sure she doesn’t get dehydrated.

It is likely that her sore throat and runny nose are taking their toll.   This would also explain her increased levels of confusion.  Her behaviour yesterday on my return from a physio appointment, and a shopping mission, was untypical.  She mentioned that a lady had been in and given her some security advice, and that was why she had a collection of keys in her pocket.  Unusually, no tidying up had taken place in my absence, and it looked as if she had been completely thrown by being left to her own devices.

I think I need to stay close by for the next few days and see if I can help her to shift this cold virus with some dietary supplements. Fortunately, I have a little something to keep me busy for the weekend:   a small project that I have been procrastinating on for quite some time.

My dad was a ‘Tail End Charlie’ during the Second World War.  Some time ago Jill, one of my sisters, lent me his RAF logbook and  note book of  raids he went on.  I also have a number of photographs of dad when with his Lancaster Bomber Crew.   I am going to make a booklet of his life in the RAF.  This will mean we all have a memento of a very brave father: scanning and printing beckon.   His log book and personal diary could then be offered to an RAF Museum

This small project might help me to stop thinking about dementia almost every waking moment.  I need to find things to focus on that help me to become far more than a Care Partner.   There couldn’t be a better starting point than ‘Jack’s Joint’:  dad’s name was John but he was fondly known as Jack by members of his Crew.

Maureen slept for most of yesterday.  I gathered early on, with her reluctance to get out of bed, that it could be another Duvet Days: one of those days following stroke that the brain is so tired that the owner has to rest.  Maureen eventually surfaced around noon and had me in stitches with her performance in the garden.

Seeking some fresh air she decided to stroll around the garden in her PJ trousers and a cardigan.  After a couple of circuits she suddenly burst out laughing with an anticipated comment from neighbours: ‘ I see she’s no better then.’

We had a late breakfast and an even later lunch.  Maureen busied herself in between ‘packing to go home’.  Fortunately, my rearrangements earlier in the day meant it was easier for her to pack, and much quicker for me to put things back.  I have now put her prized possessions in boxes and trays: so now she gets them out and I can put them back.  It is easier and quicker for both of us.  All I have to do is keep to Maureen’s mantra of everything in its place and all will be well I hope!

The amount Maureen is sleeping at the moment I am beginning to wonder if she has a viral infection?  She has been complaining of a sore mouth and throat for a few days.  I am hoping that the amount of garlic I put in the evening snack will kill off anything nasty: it will certainly keep the vampires at bay!

Maureen tidied or packed once again during the evening.  She felt hot after her exploits, and walked around the garden again under cover of darkness.  Following her stroll I called up YouTube on the television in an effort to keep her awake, and we sang along to a number of our old favourites.  I put our Songbird, Maeve on for a while and Maureen clearly enjoyed seeing her grandaughter hold forth.  I wondered if that would spark an interest in a trip to Coventry to seek Maeve but unfortunately it didn’t.

At Maureen’s behest Chloe, our carer, is cancelled today but she has probably forgotten her concerns about ‘all these people in the house’ now.  I fully expect her to ask if Chloe is coming today when she wakes this morning – she did yesterday.  Perhaps, I’ve got to learn to listen and nod rather than act on Maureen’s impulses.  I may well regret that I am a ‘lone wolf’ again today: you win some, you lose some.

Maureen had a really good day yesterday until she tired.  She was up bright and early: so breakfast was over before Gail our carer arrived.  We had been chatting about our care needs as we ate, and I left Maureen to carry on the conversation with Gail when she arrived.

Gail fully understood Maureen’s point that ‘she wanted her life back’.  She explained very clearly that if others were doing the household tasks there would be little for her to do.  As Gail said ‘it is your home and life and it’s all up to you’.  Maureen was so careful to explain to Gail that it wasn’t anything personal, and she wanted to regain her independence.  We explained that as our social worker was coming next week we would continue these discussions on Tuesday.

Once we had explained our thinking to Gail we let her go early so we could get on with our plans.  This gave us time to pop into Cleethorpes so Maureen could choose some new spectacles.  It didn’t take her very long to choose what was needed with a minimal support from me and an assistant.

After the opticians I headed in the direction of Maureen’s hairdressers.  Once again Maureen confidently sorted out an appointment for next week when Mark would be back from holiday.  Following calling in at a supermarket we made our way home for lunch.

Maureen busied herself tidying up in the bedroom while I prepared lunch.  Following one of my Italian creations we decided to have a siesta.  Unfortunately, the window cleaner interrupted our plans, and neither of us had the rest that we needed.  This led to a period of confusion for Maureen as she thought it was time to visit a relative: something we had planned for Thursday.  As she couldn’t find her handbag the trip was postponed until another day.  It is interesting to note that until this point in the day Maureen’s presentation had been extremely good.  Unfortunately, the missing handbag sent her into a loop about ‘things going missing’.

We had tea a little earlier than normal as Maureen said she was hungry.  Following tea  I made a mistake by leaving Maureen to tidy up the kitchen while I typed away upstairs.  This led to a period of distress and confusion.  I heard her crying that she wanted to go to bed but didn’t know how to secure the house.  As I helped her with her night-time routine at 7pm she explained she wanted the bed to herself as she preferred to sleep alone.

I ventured into ‘Maureen’s bedroom’ about 6 am this morning.  She had no recollection of asking me to sleep in the spare room so I went along with her thoughts that I had slept beside her.  As always she has been thinking about a number of things as she lay there in bed.  This has opened up a number of possibilities for activity today.  With luck Maureen will send a couple of post cards to family and we might even venture to see her Aunty Ethel.

One thing for sure the window cleaner won’t interrupt out afternoon nap today.  It will be interesting to see how Maureen copes if we have our siesta this afternoon.

Yesterday proved to be a difficult day.  Maureen got up much earlier than normal, and struggled for most of the day.  At times it was obvious she wasn’t sure who I was, and I was at a loss to know the best way to respond to her presentation.

She dozed for part of the morning and had another nap after lunch.  When she woke she tried to get outside via the patio door and then wondered where her car had gone.  Once she had seen that the car was still on the drive she retired to bed and closed the bedroom door .

I managed to have brief chat with Mel my Admiral Nurse during the afternoon.  I needed advice about the stash of things that Maureen had packed to go home.  My hunch about putting things back was supported and I duly unpacked.  As our conversation was interrupted by Maureen waking Mel left me a message later in the day encouraging me to take more rest

I had also had an EMail from Sue our Social worker earlier in the day in response to some concerns.   Sue’s response was very informative and supportive.  She also advised me to take more rest.

When I read of colleagues experience on Talking Point, the Alzheimer’s Society Web Site, I realise that I am very fortunate with the level of support I receive as a Care Partner.  Some poor souls have no access to an Admiral Nurse, and have very limited contact with social services.  This is just another occasion when I count my blessings that we live in an area where the services are well set up to help Maureen and I as we continue on our journey.

Footnote:  I intend to heed the advice of Mel and Sue to take more rest.  Today I have managed to stay in bed beyong 8 am: something I need to replicate on a daily basis.  I also think that one blog a day should suffice for any Care Partner: even me!

It’s taken two weeks but I’m confident there will be progress on Maureen choosing new glasses today.  She had her eyes tested two weeks ago but was too tired to choose new frames for the stronger prescription.  Her old glasses have now been missing for close to a month.  I think the crossword did it yesterday  and she is showing some interest in returning to Specsavers today.

I am hoping that I have removed some of the complexities of what Maureen needs to endure today: choosing anything is a major problem following stroke.  So I have suggested that she just chooses any old frame to get her by, and returns for a spare pair when she feels so inclined.  It could be another one of those occasions when the best laid plans doesn’t work out -time will tell.

The heating problem should be solved in the next hour or so.  As I type the heating engineer has our boiler on test.  It has been playing up lately and we want it sorted in case this cold snap becomes more severe.  This has provided an opportunity to be around this morning, and chat with our carer rather than leave her to tend to Maureen while ‘I go out and have fun’ as Maureen puts it!.  There are things that need to be reviewed in terms of carer support and I can start the process today.

So today starts the process of looking at things with a clearer focus for us all.  With luck we might even stay warm while we move forward on our journey.

Things have not been easy this week for Maureen or myself.  Her presentation and confusion has been challenging – to put it mildly.  She has also been exceptionally tired and prone to take lots of naps. There is little doubt that there have been triggers for the changes in her presentation.  I am not a believer in theories that suggest random activity from her injured brain.

On Monday evening it soon became clear that a reminder that she had forgotten a birthday of a close family member had caused immediate, and ongoing, distress. It was the only real memory she had of his phone call, and preyed on her mind the following  morning.  As her emotional memory is still intact it is not surprising that she thought ‘she was going mad’ forgetting the birthday of one of her nearest and dearest.

Yesterday, we stumbled into her Aunty Clarice and Maureen was plunged into her murky past.  Some old photographs had been passed on from the belongings of a relative who had deid.  This led to an hour or so of reminiscing.   Skeletons buried in the cupboard  came out into the open once again.  Therefore, it is not surprising that Maureen became distressed about the man in her bed last night.

We are all at the mercy of our memories.  When you have experienced stroke I am not surprised that you might think you are going mad, with things never being the same again.  You certainly don’t need clumsy relatives reminding you of your inability to recall dates that are important to them.  It is also obvious that if you have buried bad memories it is another occasion where it is preferable to let sleeping dogs lie.

It is unfortunate that many only see Maureen when she is in ‘hostess mode’.  Consequently,they have no idea how frightened and confused she can become.  Unless we can find a way of helping some people to become more Dementia Friendly the road ahead for us will continue to be very rocky indeed.