And today I can’t ….

It is a long time since I last wrote a blog post.  Oh I have written many in my head; some very interesting drafts are created in that moment between awake and asleep at night when you recap the day.  I often plan sharing the changes I haven’t coped with, the sense of loneliness as another bit of the lovely man I married leaves us and new ways of completing tasks that we have discovered.

I find the constant change difficult.  Don’t get me wrong, I know my husband does too but he only has the change to cope with in that moment.  I have the change, its consequences in that moment, my emotional reaction to the outcome and long term plans to consider.  Let’s try a couple of examples.

We are trying to complete a number of home improvements and decorating tasks that have been outstanding for a long time;  I just couldn’t cope with that on top of everything else when I was working full-time.  Normally my husband would have done all of these and the planning for them but not now.  He is aware that he cannot do as much as he used to and is a little depressed about that so I am trying to involve him as much as I can.  Yesterday I decided he could probably cope with putting primer on the wood we are using in the fitted wardrobes.  I retrieved the bench from  the garage (to prevent damage to the motorbikes when he misjudges how high to lift it), set it up on the lawn (to avoid issues with paint on the drive or the patio), put the plank of wood on the bench from the hallway where it had been (to avoid damaging the decoration inside the house as he misjudges how long the piece of wood is), placed the brush and tin of primer on the lawn next to the bench (to avoid him opening the tin of primer and walking around with the tin open looking for the brush), ensured he had overalls on (to avoid obvious potential damage to clothes) and having done all that, went to do some ironing while he primed the one plank.

A few minutes later I hear the water being run in the utility.  I go downstairs to see white primer everywhere in the sink and bowl and surrounding surfaces.  Having finished the plank, he had forgotten there were some other bits to do and was cleaning up.  What was the change?  He had completely forgotten that the paint residue would stain the bowl and some of the surfaces.  He would normally have washed it in a particular bowl we have for such tasks.  I now have an additional mess to clear up.  I needed to be able to rant at him about the damage to the area, I needed someone to care about my home, I needed to walk away and calm down.  I had to take a deep breath and pretend everything was fine.  I had to remember that in the grand scheme of things this was nothing.  I had to make a mental note that I needed to put the washing bowl on the lawn as well next time and perhaps stay in sight.

Yesterday he couldn’t remember the damage that paint could do.

During the last month he completed a cycle challenge for charity.  It was 100 miles.  The actual event was to be ridden with our two sons but training was done on his own.  Scared of traffic, my husband stuck to very quiet roads for his two hour rides.  However, increasingly he was getting lost.  Some days he couldn’t remember the route he had told me he was taking, he couldn’t remember the name of villages he went through, he couldn’t read the signposts, couldn’t remember the geography of the area to find his way back. Other days he was fine.  He had a computer on his handlebars that had a ‘get me home’ function but he couldn’t remember how to use it.

One day I had a phone call to say he had a puncture and he wanted collecting in the car.  He was on the ‘back road’.  I tried to discover which back road but the more questions I asked, the crosser he got and just demanded I come and pick him up.  Eventually a description of the cottages gave me the clue I needed and I drove out.  He was still cross when I arrived.  My emotional response at his rudeness was driving me to just get in the car and drive off and leave him to cool down.  But, I needed to remember this was the AD talking and not my mild-mannered, loving husband.   I needed to get him home before he did something stupid (he was already wandering around in the road as he gave voice to his frustration).  In the longer term, I will be joining him on cycle rides with a puncture repair kit in my back pocket.

I am stuck in this circuit where the easiest thing to do is to not give him the freedom to make the mistakes.  My goodness I would save myself considerable angst.  However, this is not good for my husband’s mental health, his self-esteem and the slowing of the progression of his AD .  I am having to balance his mental health against my own.  To add to the dilemma some days he can manage these tasks with no problem!

 

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Perception and reality

I read an interesting post by The Alzheimer’s Wife recently.  She was summarising some research she had just read about how the visual perception of Alzheimer’s sufferers changes as the condition progresses.  With the usual caveat that it varies so much from person to person, the research highlighted how their peripheral vision gradually reduces. She related examples from her own experience with her late husband.

This is something I have noted too, along with some expected and some unexpected consequences.  On first formal diagnosis we were warned that my partner’s Alzheimer’s had effected the part of his brain associated with vision and visual perception.  From early on he would open a cupboard and not be able to see what he was looking for despite it being on the shelf in front of him.  We weren’t sure if it was due to vision issues or not being able to remember what the thing he was looking for looked like.  How could he know the scales were in front of him if he didn’t know what scales looked like?  Of course, the longer he looked the more likely he was to forget what he was looking in the cupboard for at all.

He had worn varifocal glasses for years and managed them well but increasingly he complained that the lenses were not right, too narrow a visual field and having too steep a gradient.  We tried single vision glasses for a while but he couldn’t cope with changing glasses and got very confused.  The optician confirmed that his eyesight had not changed but the issue was his ability to perceive what he was seeing.  He was blaming what he couldn’t understand seeing on not being able to see.

Being a life-long dyslexic, reading was never his favourite activity but this has become a bigger and bigger issue.  Needless to say, the glasses get blamed for this. He has begun avoiding any activities that involve reading, struggling with instruction books and recipes.  Using post-it notes to mark progress helps with some things provided he doesn’t forget to move the post-it.  Some long on-line readings I have copied into Word and then put into a bigger font so the page is more spaced and less intimidating.  We have discovered that he can manage to read on the Kindle by doing a similar thing.  These are likely to be only interim solutions but hopefully will leave him feeling a little more independent for a little longer.

The glasses also get blamed for what appears to be clumsiness.  He has difficulty judging where edges of surfaces are, distance between objects, heights of objects, strength of grip required and more.  We have plates balanced precariously on the edge of tables, cutlery missing plates, glasses knocked over as he reaches across the table.  When we redecorate I will be changing fitted carpets for solid flooring so that he doesn’t have the stains to remind him of his errors.

I realised recently that not only is it visual perception that is a problem but visual memory or imagination.  A number of things we do rely on us being able to imagine what our limbs are doing when they are out of sight.  Holding the fork straight as it is raised to our mouths when eating; not tipping the spoon as it nears the mouth.  He uses an apron when cooking now and often when eating to prevent the destruction through staining of every top he possesses.  In addition it means he can only help to carry large items if he can see his feet as he cannot imagine where they are without being able to see them.  This makes handing things up a loft ladder impossible and a number of diy jobs are no longer within his ability.  If he cannot see exactly what it is he is working with then he cannot do the task.  This is very sad for someone who was always very practical around the house.  We are finding new ways of dividing the tasks but it does feel like I have lost a piece of the man I have been with for over 40 years.

 

Tidiness

My partner has never been the tidiest soul.  Putting things away was always going to be done next except when it came to his garage.  There every thing had a place and every place had a thing.

That was one of the behaviours that first struck me, before diagnosis even, his garage was becoming untidy.  It was blamed on lack of time.  Piles of tools and other items starting appearing.  He couldn’t find things and didn’t know where to start looking.  It depressed him dreadfully.

We set to and tidied.  We labelled crates.  We found a home for everything.  It looked wonderful and for a few months he managed to maintain the state but gradually piles started to appear again.  He was losing the ability to categorise so labels like ‘Household electrical’ and ‘Soldering’ were no longer helpful.  He couldn’t decide where to put items and even more frustrating for him, didn’t know where to look for them.  He gave up.

We tidied again and improved the labels but our friend Alzheimer’s had moved on.  Just because he had taken something from a crate, taking the crate from the shelf in the process did not mean it was obvious that was where it needed to be put back.  Any adventure into the garage needed to be followed up by a visit by me to tidy everything again. However, this latter effort was worth it because I then knew where to direct him to when he needed something from the garage, even if I wrote it down.  It gave him some independence.

By now the kitchen was starting to suffer the same fate.  It moved from rarely used items to everyday items.  He didn’t know where to find them or where to put them away.  Again, categorisation started to fail.  Its a container so ‘goes in the crate with the other containers’ was fine to start with but over time he lost the ability to see the item as a container.  I usually do a nightly sweep around the kitchen when he is in bed to repatriate misplaced items and things left lying around.

Currently the lack of ability to remember where things go is causing a level of untidiness that is frustrating.  There are an increasing number of days when he just doesn’t put things away or tidy up when he finishes a job.  It is now a mix of becoming distracted, forgetting what he was doing, forgetting where things go or walking away to seek help and forgetting what help he needed.  I seem to spend a considerable amount of the day tidying up after him.

Undoubtedly the task would be easier if we had less ‘stuff’ so I am currently engaged in a serious declutter.  The new carpets in rooms are going to all be different colours so I can identify rooms by carpet colour instead of what they are called.  We move forward.

 

The loneliness

I wouldn’t say I am depressed about my situation but sometimes I do feel lonely.  I am surrounded by fantastic friends and my children are as attentive as their busy lives allow but I still feel lonely.

I have been with my partner all my adult life.  I was fourteen when we started dating and eighteen when we married.  I have never had to face any adult decision or situation alone.  He was beside me throughout my breast cancer treatment both physically and emotionally.  We have always done everything together.

It struck me recently how much that had changed when our radiators took it in turns to develop holes, the central heating boiler rebelled against its power flush and the cloakroom toilet pan broke.  It was down to me to deal with the various workman, coordinate the purchases and plan around it.  I did share it with my partner but he could not hold that many issues in his mind at once and although he wanted to help and understand, he couldn’t.  At times he panicked about everything that needed doing and we would sit down and discuss the plans but he ended up saying he would leave it with me.

I am not unique in having to face this, I know that.  I recently read the blog by The Alzheimer’s Wife where she was facing very similar things.  Those not in a relationship, face making decisions alone all the time.  I suppose the feeling is actually mourning for something I feel I have lost.  Something I didn’t think I would have to face losing.

I think Granddad needs some help.

They were playing in the living room.  Granddad was supposed to be helping with the jigsaws.  It was going well with the four and six piece jigsaws but then my granddaughter tipped out the double sided one.  At 26 months she needed help with that one but her Granddad has Young Onset Alzheimer’s and the puzzle was beyond him.

She has never known him without Alzheimer’s.  Obviously his dementia is deepening as she grows older but she appears to be taking this in her stride.  She never makes comparisons with her other two Granddads and has her own way of handling him.

On this occasion she came through to the kitchen and politely said that she thought Granddad needed some help.  I went through and turned all the pieces so they were the right way for one of the puzzles and the two of them continued playing.

More recently, we were helping her parents to move house.  There were many boxes that were not needed and Granddad was tasked with breaking them up before putting them in sacks to go down the tip.  On the third occasion he returned to the door to ask what he was supposed to be doing I asked our granddaughter, now 28 months, if she could help him.  After donning her coat and shoes and climbing out the door she turned to ask what Granddad was supposed to be doing so she could tell him.  The two of them worked together for nearly two hours with the young taskmaster keeping her granddad on track.

She knows to get him easy books to read to her, she knows he needs to rest, she knows he cannot get things from cupboards and knows he will walk round the garden with her for much longer than anyone else.

On a recent car journey when she was declaring everyone ‘silly’, my friend joined in and asked her if Granddad was silly.  No, Granddad was not silly, he just got tired easily and forgot things was the reply.

It’s the little things ……

The alarm hadn’t worked properly since our holiday.  My partner tried over several days to sort it.  Eventually I remembered it, amongst many other tasks, and the alarm duly went off the next morning. He noted that I had sorted the alarm and asked what had been wrong.  There was one button he had forgotten to press.  “It’s the little things that I find hardest to cope with,” he commented.  We chatted about what he meant.

We came up with a long list: the warning lights on the coffee machine, the stop button on the TV remote, which button on the remote for the garage doors, how to start his cycle computer and so on.  What he found hard was these little things damaged his independence as much as the big things because it meant there were a whole range of tasks he could not do without help despite being able to do 95% of it.

Sometimes I can pre-empt the problem by catching the puzzled look and suggesting the piece of knowledge he might be missing.  I risk being shouted at for telling him what he already knew or treating him like he is stupid even if that was what he was struggling with but progress through the task is smooth.

Sometimes he wants me to show him how to do that little piece he is missing.  He hopes this will help him remember.  This can take a long time and it is important not to sigh, not to state how many times you have shown him, not to rush the explanation.  It is important he still fights.  It is important I continue to grow those angel wings ….

Cooking is becoming a problem ….

My partner has always enjoyed cooking.  In fact, if I am honest, he did all the cooking from not long after we got married.  It is how we divided the tasks.  He did the cooking and the kitchen, I did everything else.  He would never go hungry, so I knew it would be done.

He has for some time had problems with timing anything other than the simplest meal.  We have occasionally sat down to a meal with one part of it still in the saucepan or the oven.  Sometimes he has forgotten one component completely; like the other evening when we had his signature dish of Salmon Pasta with no salmon!  He has struggles to take into account that frozen food takes much longer to cook so last night the fish was raw in the middle despite his protestations that he had cooked it for 30 mins.  He has started to lose the freezers or forget that there is a difference between the freezer and the fridge.  That is quick to correct but he then sometimes can’t see, or sometimes can’t remember, what he is looking for.

Why is he still doing the cooking?  Because he would see it as an affront to take away his main role.  Because it would take away a large part of who he is.

Often we can work together on a meal. When he is tired he welcomes me cooking.  There are sometimes, however, when he refuses to admit there is anything wrong. Refuses to accept help. Refuses to ask where things are.  And when we sit down to a very strange meal, it is my fault for not answering the question he never actually asked.

On the bright side we have been introduced to some very interesting combinations.  We have found meals eaten over a couple of hours as each component cooks are more filling.  And new recipes from books can be worked on together which is great fun.

The first blog post

I have been meaning to start this blog for a long time.  A lack of time, lack of experience of blogging and lack of self-confidence have so far prevented me but today is the day ….

I gave up work four month’s ago to care for my husband who has Young Onset Alzheimer’s.  He is 60.  He was officially diagnosed four years ago but showing signs for at least three years before that.  We have been on a voyage of discovery since that day four years ago.

I will be sharing some of the highlights and the lowlights on an irregular basis.  Some will be current and some historic.  Some will be uplifting and some will be depressing.  Welcome to my life.