The inconsistencies of this disease never fail to amaze me

LynneMcV

Volunteer Moderator
May 9, 2012
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south-east London
This was originally going to be just for my blog pages (hence the long and rambling length of it!) - but then I thought I might as well post it on the main forum too - just in case anybody can identify with it or has any thoughts - or might find it helpful in some way...

The inconsistencies of this disease never fail to amaze me.

For the past couple of weeks I have noticed that the first question hubby asks on waking up in the morning is 'What day is it?" - I know that this is his way of just making sure he starts off on the same page as the rest of us. I think he might have missed Christmas day altogether if he hadn't developed this new routine!

This is usually followed up with "What are we doing today?" - again, him just trying to get himself prepared for what the day has in store, and to make sure he doesn't have any appointments to keep etc.

I have also noticed in the early hours, when he thinks I am asleep, his foot slowly edges across the mattress to touch my leg/foot very gently, before retracting his foot again. I know that this is his way of reassuring himself that I am still there, without having to call out or wake me up.

I find it both sweet and heart-breaking at the same time. Although he is still very able in many things, these new routines are all little indicators pointing towards the progression of his dementia.

However, things seem to have taken an unexpected turn...

Yesterday (Saturday) I was ill. Not terribly ill, but enough to convince me that instead of getting up early to do the shopping at 8am as normal, I should stay in bed for another couple of hours, rest during the day - and not do the shopping until after 5pm, when the bulk of the shoppers would have finished and gone home.

Now, every day for me is usually filled with the same calls for help from hubby - from finding his hat, his glasses, his keys to looking for his shoes and money.

However, yesterday hubby got up (without asking what day it was), washed and dressed as normal and went downstairs. He was aware that I was feeling under the weather and happy to leave me to rest. Saturday morning has its usual routine. After getting back from shopping I usually make a cuppa, give hubby money for the week (yes he is able to take whatever he wants out of the cash machine himself if he needs to, it's usually more convenient for me to just get the cash out for him, when I go shopping) and then hubby heads off to the shops to get the newspapers.

OK, so I hadn't been shopping because I was ill, therefore I had not taken any cash out for him. All was fine though, because I knew that I had a little money which I had stuck into an 'emergency pot' in the cupboard several weeks ago when we went away on holiday and left grown-up son and daughter to run the house in our absence.

So, I snuggled down under the duvet and waited for the questions and calls for help...and waited...and waited...

I heard the front door open and shut. Fifteeen minutes later I heard it open and shut again - hubby was back home with the newspapers. Where were the usual requests for 'where's my hat? Where are my glasses? Have you got some money for me? etc etc :confused:

Another 10 minutes passed and I heard hubby coming up the stairs and into the room.

"I know you aren't feeling well," he said "but I thought I'd just remind you that it's the last shopping weekend before New Years' day, and it might not be a good idea to leave your shopping too late today. I can go and get it for you if you want..."

Hold on, I thought to myself. He knows this is the last weekend before the New Year - how did that happen? He is making contingency plans about how to get the shopping in - he hasn't tried to plan ahead for anything in a while now as he seemed to have lost concept of how much time to allow for various things. :confused:

I explained that there was no need to worry, that I only needed to get a few things as I had plenty in the freezer, and we would not starve before the New Year - and he seemed happy with that.

"Oh I've been down to get the newspapers," he said. "I used the money from the emergency jar you put aside for the kids when we went away."

"Brilliant," I said, all the while thinking - how did he remember that was there? It was a one off thing that I did and it was several weeks ago now.

There were several other instances of clarity throughout the day which surprised me. He kept to the proper feeding times for the cats (usually I have to stop him filling their bowls up every 30 mins because he can't remember when they were last fed), he offered to make tea and coffee at suitable intervals (normally I have just taken the last mouthful of coffee/tea from his usual round when he is up and ready to make more because he can't remember when he last drank, he just knows that his cup is empty!)

He also almost completed a difficult crossword (just a couple of clues he couldn't get) - I can't recall the last time he got that far (even on a simple crossword) - it was just like the old days before dementia hit.

In the evening we sat down as a family and played a game of QI (one of son's Christmas presents) - not only did hubby follow everything that was happening, learn the rules of a new game which none of us had played before and have as good a bash at answering the questions as any of us - but he won by a long margin too.

After that, we sat and watched a film. Again he followed the plot and there was none of his usual 'I've seen this before' comments which have become quite routine of late, even though we know he can't possibly have seen it before.

So that leaves me to wonder just exactly what is going on here? There has been no change in his medication or diet. The only thing I can see that has changed is that I was ill, and therefore not on stand-by to help him out as much as normal.

Maybe I am doing too much for him? Maybe I should turn a blind eye when I see him struggling to find his things (though I really can't see me being able to do that!), maybe I should let him figure it out for himself what day it is, what is planned, what he needs to do? Again, I really can't see me standing back and making him struggle on. It just seems cruel.

I try not to do too much for him. I am very aware that it is important for him to do as much for himself as possible so that he does not lose those abilities. I go out to work and leave him alone and he does fine (unless someone knocks on the door to 'quote for a job' or telephones and starts asking personal info!) I leave him to do the washing up and drying (though I know I could do it in half the time he takes), he irons his own clothes (if he doesn't want to wear something I have already ironed), cleans his own shoes, works one day a week at a charity shop, regularly takes the train to London to meet friends, goes to watch the cricket, plays computer games, enjoys crosswords and puzzles, acts as a 'community champion' to let the council know where there are grot-spots (fly-tipping, graffit, dog fouling etc) and in the spring/summer he plays bowls etc.

On the other hand dementia is more than evident - he has lost his ability to do simple maths (he used to be a Financial Manager), he can no longer write a coherent sentence, he often struggles to get his words out, struggles to read a clock/watch face, can't often retain new information, gets confused if there is too much choice, has trouble doing things in the correct sequence, repeats himself to the point where I think I might pop with exasperation if he says it one more time, has less ability to grasp the concept of days, weeks, months - plus the things I mentioned near the start of this post.

Maybe yesterday was just a sudden 'peak' in his abilities and it will go just as quickly as it arrived - with nobody any the wiser about how or why.

I wish I could capture whatever it was and bottle it!
 

jeany123

Registered User
Mar 24, 2012
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74
Durham
Hello Lynne how fascinating, I wish it worked with my husband, when i am ill nothing gets done unless I struggle from my sick bed, Some things are quite unexplainable aren't they I hope the phenomenon continues for you ,

Jeany x
 

DeborahBlythe

Registered User
Dec 1, 2006
9,222
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Fascinating to read about your husband Lynne. My mum used to have good and bad days but what you describe sounds amazing. I hope he continues in the same vein for a while longer and that you yourself are feeling ok now.
 

LynneMcV

Volunteer Moderator
May 9, 2012
6,373
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south-east London
Thank you Jeany and Deborah for your comments. Yes it is fascinating how well hubby is continuing to do these past few days. I am enjoying it but hate this niggle at the back of my mind which keeps telling me to make the most of it while it lasts.

Actually, yesterday (New Year's Eve) I thought things were going to revert back to how they had been. He'd had a good day for the most part, but looked extremely pale and tired by early evening. I think, because of his tiredness, he was finding it difficult to concentrate and then seemed to be having trouble texting New Year messages to his friends - though some did get through in the end. I know one of the replies he got was 'What does that mean?" so I can only guess that the message he sent was a bit jumbled - which is no surprise because we have known for a few weeks now that his ability to write coherent sentences has gone. Mind you, text messages are often a lot of gobbledygook to me anyway - coherent sentences doesn't even come into it!

I'd made some mulled wine but he was not interested in having any or seeing in the New Year - and by 8.30pm he had taken himself off to bed, looking very down and drawn. He is Scottish and anyone who knows a Scot will know that if they are in bed early on New Year's Eve then things really are on a downturn!

I'd resigned myself to just having a quiet drink with my son to see in the New Year (daughter was out with friends). I was a little down about it, but at least I had my husband safe and sound and at home with me, and that was a blessing.

However, around about 10.30pm hubby resurfaced. He'd been getting text messages wishing him a Happy New Year and they'd woken him up, so he thought he might as well get up! He started off looking really drawn but after about 30 mins he looked like his old self again. He still didn't want the mulled wine, but had a couple of lagers to see in the New Year and watched the usual New Year celebrations on tv etc.

He made sure that my son carried out the usual Scottish tradition of being 'First Footer' after midnight - and, when family phoned from Scotland, he had a good old chat. In the end it was near enough 2.30am before we turned in for the night - much later than I thought I was going to be in bed.

He woke up in very good spirits this morning, helped me get the Christmas decorations down and up into the loft and generally tidied up - and he has already put in his order for some mulled wine tonight (I have work tomorrow so I'd better just stick to a couple at most myself!)
 

Rachael_11

Registered User
Apr 26, 2012
8
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What a lovely set of events. It is fascinating the way something can trigger a change in symptoms. A few months ago my mum, who has early onset dementia, and all the rest of our extended family met to scatter my granny's ashes. I couldn't go as it was the last two days before my masters thesis was due. Everyone was a bit nervous but dad told me how she said the most beautiful and appropriate short speech about her mum and dad. I know everyone will treasure that moment forever: maybe that's the one silver lining of this horrible process is that we notice the little moments that we so often forget and treasure those times as I'm sure your son will treasure the game of QI, even if he was beaten by his dad!
So lovely to hear about it. I wonder if you being ill triggered a past memory of being in control with you and him as parents. I know mum still places a lot of value on her role as organiser and leader even when she really can't do these things. Whatever caused it. I hope you are able to enjoy more precious moments and that this great Start to the new year gives you much hope for the year ahead.

Thanks for sharing :)

Rachael