The right to choose

I am a firm believer in the right of individuals to make decisions about things that effect them.  I tried as a parent to give my children the right to choose when it was possible and they were not going to potentially suffer harm if they made the wrong decision.  “It is likely to rain, which coat would you like to wear?” There were a few soakings before they appreciated that style does not always win over substance but a hot shower and warm meal meant no harm was done.

I have tried to apply the same principle to my husband as we have travelled along his dementia journey.  He invariably asks me to make the decision for him but I do sometimes try to maintain decision making powers by suggesting a limited list to choose from.  “Shall we have coffee in x or y?” “Shall we walk further as the weather is nice?” “Would you like to sit in the garden to drink that?”

Of course he makes a lot of decisions every day without ever thinking that they are decisions.  When he will get up in the morning; when he will have his shave; when he will feed the cat; when he will watch the television.

But it struck me the other day that this fight to maintain his right to choose has slowly diminished mine, as his carer.  I can only have a lie in if he does.  I can only have an early night if he does.  I can only have a shower if he is settled in an activity.  I can only go to the gym if he does.  I can only go anywhere on my own if I have a carer in; it cannot be spontaneous, cannot be on a whim.

We have an added complication if he doesn’t want what I have set up. What happens to his right to choose then?  We have our two rights to choose in direct competition.  An example might help.  I used to go out socially one evening a week for two hours to meet friends, have coffee and a natter.  I had to start having someone to sit with my husband while I did that.  He didn’t like the first person, or the second, or the third.  He was clearly upset all day about the prospect of them arriving regardless of how much preparation I put into the two hours.  I stopped attending the group.  His right to choose trumped mine.

Another example, we both go to the gym one morning a week.  It is a special health related session with additional staffing so they look after my husband on the static bike while I engage in some running.  I can usually do my run, shower and change in time for him to finish.  I enjoy the exercise, the chance to push myself and it is an integral part of my mental health plan.  Some weeks though, he doesn’t want to go, dawdles, delays and we arrive too late for me to fit in my run or sometimes don’t arrive at all.  He has the right to choose not to go but what about my right to exercise?

We used to take our younger granddaughter out one afternoon a week and collect the older one from school on our way back to the minder.  Timing is everything because he does not wait willingly or easily but when he decides he cannot rush, can only do steps very slowly that day, has to have his coat done up but cannot do it himself, we are late arriving at the school.  This was very close a couple of times and seriously late on another occasion.  We have stopped collecting our granddaughter from school.  I am not sure he has actually decided that, I am not sure his actions were totally decisions made to cause that result but I am sure that I have lost an opportunity to spend time with our granddaughter.  My right to choose has been taken away.

But at the end of the day I do have some rights to choose and I am exercising those and the smaller rights I have talked about here fit within these larger choices.  I have chosen to give up paid employment to care for him full-time.  I could have put him into paid for day care, he might not be as active as he is both cognitively and physically, but I could have decided to do that.  I need not have engaged in the diet and exercise regime that occupies so much of our time.  I could have ignored the touted benefits and opted for an easier life.  It is the knowledge that I have made these bigger decisions that helps me through the smaller losses.

Can the system help?  Can society help?  I suspect not.  I am being abused by his Alzheimer’s.  I am being abused by my love for this man.  I am being abused by what that love means I believe I must do.  Like so many other family carers.

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Share your life as a carer ….

I have recently been asked to help develop a training resource for social workers for a local authority.  I am to give a fifteen minute interview in response to four questions.  I was sent the questions in advance so I could plan my responses.  They really made me think.  They are not hard.  Let me share them and my planned answers with you.

 

  1. Give me one word that sums up your caring role.

Exhausting

It was the first word that came to mind and it is the one that stayed.  Physically, emotionally and mentally exhausting.

2. What are the positives of your caring role?

Doing things together we would probably never have got round to like visiting Iceland, tracing the family history, decluttering the house, getting physically fit, going for a walk just because we can.

I can think of lots of positives.  Planning them all is part of the exhaustion.  I have to plan them, do them and help my husband do them.  The planning has to be more detailed to take account of his limitations and the finances are not brilliant.  I am having to learn about so many new things all the time.  This week was pre-amps on phono inputs to aux ports on stereos so he can play his LPs while he still can.

3. Briefly tell me how your caring role impacts your daily life.

It is my daily life!  I am a carer from the time I get up till the time I go to bed.  It impacts on where I go, when I go, how I go.  It impacts on what I eat and when I eat.  It impacts on the time I can spend with friends and when that can be.  It impacts on what I can wear because of the finances and how I look.  I am a carer.

If I didn’t love the man I could probably just continue to work, pay someone to sit with him and let him quietly disappear into the dementia but that is not who I am, that is not who we are.  We have fought so much adversity in our married life, We are not about to stop now.

4. What advice would you give a social worker before they come out to visit a carer?

Not sure I can give general advice but if they were visiting me I would say please don’t treat me like I am stupid.  I don’t need to be patronised. I don’t need that sugary voice saved for old ladies and children.  I am a fully functioning adult who happens to be married to a man with dementia.  I do need to get out more but that hasn’t dulled my intellect, please don’t assume it has.

 

Not sure how this session is going to go.  It could be very interesting.

And this week I was ill …

Okay I wasn’t very ill.  I had a heavy head cold.  It is years since I have succumbed so completely to a cold virus.  I usually have the first symptoms and then recover.  Not this time: headache, itchy throat, dripping nose intermittently with blocked sinuses, temperature.  More paracetamol consumed over the last three days than in the previous three years.

But I cannot lie in bed because I have someone to look after.  He needs his clothes preparing, he needs meals, he needs drinks, he needs his supplements, he needs exercise, he needs the television sorting, he needs a shower, he needs to attend his swimming lessons.  Unfortunately Tuesday is our shopping day so that had to be tackled too as there was no food in the house by lunchtime.

I did cancel taking our granddaughter out on Tuesday afternoon. She didn’t need this virus.  I also cancelled my evening out with my knitting group.  They didn’t need it either.

So I have been mainly at home with my concerned husband looking up and adding helpfully, I think you might have a cold.  Half an hour later, I think you might have a cold.  Half an hour later, by way of variation I might have, you don’t look very well.  Half an hour later, I think you might have a cold.  He means well.  I smile and agree.

I so want to go to bed with a hot water bottle, a mug of hot drink, a good book and stay there.  But I got a hug today for taking him to his swimming lesson.  Followed by, you feel hot, do you think you might be unwell.

A more positive week

I always seem to be moaning in my blog posts so I thought I would write one while I am feeling positive.  I think I use them as therapy; well I am using this one as reinforcement!

Anyone who has heard me speak about my life will have heard me talk about the Curriculum.  The Curriculum, for those who haven’t, is the series of daily tasks that build into weekly plans that fit into longer term aims and targets.  I call it a curriculum because of my education background.  It is loosely based on the protocol of Dale Bredesden who, in his recent publication, claims to have found a cure for Alzheimer’s. Each week consists of some things that are just for fun, together fun. Some things that are cognitive tasks, either relearning or practicing.  Currently we are working on typing, relearning how to write and using an app on his smartphone. Some serious aerobic exercise, some pilates and some more gentle exercise, usually include some relearning of routes round town within the latter.  Some visual perception and physical manipulation tasks as that is a particular difficulty.

Anyone who has heard me speak will also know that this constant need to plan and extend his horizons is exhausting.  It is similar to having a young child except their brains are hard-wired to want to learn and progress and my husband’s is soft-wired to give up.

Well this week worked well.  Yep, it worked well despite being busy.  We managed a trip to London on the train and underground where he coped with stairs and escalators.  He timed getting on and off the escalators perfectly.  This is a relearnt or refound skill.  We enjoyed a lovely trip to the Cutty Sark and he remembered some of the facts for more than a week, in fact still remembers some.  He also remembers the day being fun.

We then travelled to Bristol to do some research on his family history.  Again, we travelled by train and again stairs and escalators worked.  He coped well with the slightly loose planning of the three days but was clearly becoming tired and uncoordinated by the third day.  We did a lot of walking.  He coped with a busy city and mostly avoided his habit of walking straight at people in the street.

We travel light as I have learnt I have to deal with the case on the train and on stairs, that would be an added complication that would lead to failure.  I also deal with the tickets at barriers.  We are a well oiled machine at those now.  It avoids lost tickets, dithering and confusion.  We choose toilets carefully and I never go in at the same time.  We always sit down with drinks, never attempt to drink on the go, that is asking for mess.

At home too there have been successes.  Pilates exercises have worked or we have managed to work at them to get them right.  He went out for a run with no quibbles and managed a much more even running pace than before.  He successfully cleaned the dregs out of the coffee machine rather than just shouting that there was a light on.  The cat has been fed without losing the bowl, the food or the fridge where the food is kept.  He mowed the lawns with virtually no missed patches having found the right key for the garage, got the mower out, sorted the extension cable and set it all up.  We have discovered that the reason for his difficulty shaving was a broken razor and a new razor has virtually removed the problem.

Perhaps most interesting of all is that he has not wanted to just sit down and watch mind numbing television for hours. He is not willing to sit in that chair and wither.  Despite what people think, Alzheimer’s is not a hard-wiring for destruction, it is soft-wiring and this week it feels like we might just be fighting back.

Is this burnout or am I human?

As regular followers will know, I am the full-time carer for my partner who has young onset Alzheimer’s.  I have shared many ups and downs but just recently I don’t like who I have become.

I love my partner, always have, always will.  I sometimes find myself not liking the person that Alzheimer’s portrays him as, the changes it has brought to our relationship or the situation it has left me in.

I was not forced to give up work to care for him but he was deteriorating fast and I knew I would not have long with him if I did not play a more active part in his life.  We have had quite a number of successes, we feel we have turned the clock back a little, we have fun.

However, the role is full-time.  There is no let up and recently he has become very clingy, not leaving my side, often sitting outside the bathroom when I am in there.  I think he has probably been fighting an infection and is finding the world a little more confusing than usual.  I think he feels vulnerable and needs reassurance.  But I found myself just wanting to scream; I felt like I couldn’t breathe.  He was warning me of dangers that weren’t there.  Standing inches away from me while I was trying to cook.  Worrying about everything.

I got snappy.  I hated myself for it.  He was hurt and, of course, got worse.  We were into a vicious circle.  The problem could not go away, there was no space, no time off.  I shared with a friend on-line.  She asked what she could do.  I asked her just to listen, to let me share.

I have a couple of hours off one evening a week when a sitter comes in.  A chance to be me, unguarded, without having to look over my shoulder or listen for problems.  The friends I meet agree the situation is s**t, only going to get worse and hug me.  They tell me my reaction is reasonable.  I am not losing it.  Why do I still hate myself for it then?  Am I reaching burnout point or am I just being a human being with  human reactions to an inhuman situation?

And this week I have learnt to …..

It is a very long time since I have posted.  Life has not necessarily been easier but maybe different.

I have always been a fairly practical person.  I was my husband’s mechanic when he raced motorbikes and a willing assistant to my Dad when he did joinery in the evenings.  But there were always some things I never did.  I never had to do.  This is changing as my husband loses his ability to understand what his eyes are offering him.  He is also appearing to lose common sense.

This latter point might need some explanation.  Common sense, I have come to realise, is the application of  our accumulated memories in a logical sequence.  Some of those memories go back to experiments with sand and water and bricks when we were toddlers that enhanced our understanding of our world.  Start removing random bits of those memories and there is no logical sequence through so understanding the balance point of things on a trolley, putting a spade in front of the dust and broom rather than to the side or the difference between here and there, are all annoyingly, frustratingly difficulties.

So in recent weeks I have had to use a Stanley knife for the first time to cut up the old carpet in the garage and lift very heavy crates because he can no longer understand how to hold them.  We have between us though, successfully refloored half of our garage.  The garage is important to him.

I have had to research someone to repair and paint the side panels for one of our motorbikes.  I am gaining quite a collection of local trades people who can help.  Not all of these were tasks that my husband could do anyway but he would have done the phone calls and the running around.  It is important we make progress on restoring the motorbikes.

Whenever we went fishing I was always content to be handed the rod already set up and baited.  I never got involved in the tackle and requirements.  As part of sorting the garage we needed to sort the fishing gear that was in a terrible mess. We had inherited equipment from his late Dad and Grandad which had never been checked.  Over a number of afternoons we went through and dredged up memories, looked on YouTube and generally sorted so that he now has a working rod and reel for each type of fishing, along with two boxes of suitable extras.  The rest has been binned, sold, passed on or is in the process of.  It meant that he was recently able to join an old friend fishing.  Important time away from me, just being another fisherman.  I can now fix reels to rods, tie hooks, and affix floats.  I might even go fishing again one day.

These may not seem like big skills or tasks but they are new learning for me.  Things I never expected to need to do.  A level of involvement in someone else’s hobby that is important to their wellbeing if not mine.  Now the running we have both started doing, now that is good for me as well as him.

 

An uninterrupted shower!

Today is the day that Andy the gardener comes.  Well, he is a gardener the rest of the week but on Friday mornings each week he helps my partner look after our garden.  It was always his domain but he gradually forgot what needed doing when, which were plants we had paid for and which were weeds, how to use the various tools and when.  I have tried to keep it his domain and Andy is very good at gently guiding, choosing the task that my partner can do and advising.  Unfortunately this morning Andy turned his back to gather some shrub trimmings and the expensive olive tree on the patio became a new shape.  A few swift secteur cuts and branches fell.  Thankfully we decided not to be an Open Garden this year!

But one of the best bits of Andy being here on a Friday is that I can have an uninterrupted shower.  A shower where I don’t have to leap out to answer questions, take ringing phones, answer Facebook queries or wash despite rising panic about what I will find.  I don’t take long in the shower.  My hair is now very short so it is easy to wash and care for so I even get the chance to dress fully before attending to some other matter.  Bliss.

We have always been a very close couple, spending virtually all our spare time together, sharing hobbies, motorbikes and interests.  But of course, spare time was after work, after regular chores were done, after children or parents were sorted.  Now all his time is spare time and he sort of expects all mine to be the same and to share it all.  I love him dearly and still enjoy his company but sometimes I feel like I am in a box that is getting smaller and darker and less filled with air.  I need to breath and stretch.

I have two other spots in the week with time to myself.  One morning someone comes in to help my partner do household tasks and I take our three year old granddaughter to ballet.  She is with us in the afternoon which is a useful, if tiring, diversion.  Another afternoon he attends a social activity for two hours in our town.  This week I went mad and met a friend for coffee.  I must do that more often.

I was recently at a conference about dementia where people suggested I should be having more regular support.  I discussed the idea with my partner on our return journey.  What would he like to do if he had time away from me?  What activities?  None.  He doesn’t want to be with anyone else.  He just wants to be with me.

So, I will carry on enjoying my Friday shower and try to find a way to drill little air holes in the box.

 

What shall I do first?

Today my husband goes to a social group in town.  He has worked up the confidence to be able to walk there and back alone.  I say town but most people would call it a village and we have lived here for almost 39 years but this walking himself is a big step.

I have two hours on my own.  No interruptions.  What shall I do first?

I do consider sitting down with a cup of tea and enjoying the peace and quiet but that seems very decadent.  As does, enjoying a bit of peaceful knitting, reading a novel or even a bit of colouring.  No I must use this time to do jobs/tasks/useful things but what should I do first?

Shall I finish the gardening he started this morning and couldn’t finish without help?  Put away the wrong tools he got out of the store?  Use the correct tools to plant the bulbs that have finished in their indoor pots?  Put away the tools all over the lawn?  Perhaps I should also trim the grass that has overgrown the pansies that he cannot see?  Throw away the dead herbs in the pots lying around in various stages of getting to the bin?

Perhaps I should get on with the financial things that need my attention on the computer?  The things that need no interruption and I never get the chance to do.  But what if he gets lost again on his way to the Town Hall?  I would have to stop.  Perhaps leave that for a while.

Shall I attempt to do cleaning upstairs?  It is just ordinary dusting and hoovering but it is a struggle to complete it when he is here because he is not in that room and so I constantly have to stop and answer questions/check if it is quiet that he is not accidentally harming himself or something else/attend to an urgent thing he cannot do.

Perhaps I should do ironing?  The iron does not like the constant turning on and off that the interruptions cause.  I am sure it does it no good and I cannot imagine the additional cost in electricity.  On balance, I can probably do without those clothes and continue wearing the easy wash, non-iron ones.

Shall I do the washing up and give the kitchen a good wash round?  He thinks he did that this morning so I cannot do it again while he is around.  He forgets many things in a day but he is bound to remember that.  I would just like to rewash some of the items that still have food on them, wash the cupboard fronts that have spills down them, rescue the sink from the tea bags that never make it to the bin.

Perhaps I should be adventurous and work on the old shed that is in pieces on the drive? It is supposed to be in pieces and the council are coming to collect it on Monday but each of the pieces needs to be checked for nails.  They all need to be knocked over or pulled out.  It needs to be done methodically.  It is a nice day but will my back cope today?  Perhaps tomorrow after pilates tonight?

Two hours is not long.  I never feel like I get enough done.  I always feel like I have moved too slowly, stepped down from life’s usual frantic pace, never ending requests/demands.

And I miss him.

Remembering it isn’t all my fault …

As a carer of someone with Alzheimer’s I am always being told that I need to remember that words and behaviour are not always from the person, they are sometimes from the disease.  I have to remember that accusations are not necessarily true or meant.  I have to remember ……

It is not always easy though.  One day I have my husband back.  He is a bit forgetful, a bit clumsy, a bit slow but his sense of humour and proportion is there.  He is the man I have been with for over 40 years.  He loves me and I love him back.  The next day ….. I seem to be plotting against him.  I didn’t tell him there was no milk (I did).  I didn’t let him clean his shoes (I stopped him spraying mud on the clean sheets hanging up). I forced him to trip over by not pulling the blinds (I was doing the curtains in another room at the time). I caused him to get lost in town (I wasn’t with him). I won’t let him watch the television (I suggested he ate his breakfast while it was hot).  You get the picture.

Some of the accusations are quite vitriolic.  It is almost as if he believes that I spend my day plotting to make things go wrong for him.  It is hard.  At that particular moment in time this man believes I could be that horrible to him.  It is the disease.  I know it is but it doesn’t stop it hurting.

I share.  I have some beautiful people on the end of the messaging system.  I must smile.  His mood reflects mine.  Anger leads to anger.  Frustration leads to frustration.  Upset leads to upset.  Love, well love just has to bear the storm till it has passed.

And life goes on

Once again there is a big gap between blog posts.  This time the reason is physical rather than mental or emotional.  The threatened home improvements have all been happening over the last three months and my computer was in limbo.

The last three months haven’t been easy.  Anything less Alzheimer’s friendly than workmen all over the place, completely changing the furniture downstairs, rearranging the rooms upstairs and having to find new places for ‘stuff’, I cannot imagine.  My husband coped amazingly well up to the two weeks before Christmas when the constant change just wore him down. He sunk to new levels of confusion that we feared might be permanent.

But with Christmas out of the way and the final few bits completed he is improving daily.  We have a new routine which he likes.  The extra lighting downstairs helps his vision problems and  the hard floor has removed all trip hazards.  The new banisters provide the guidance he lacked to cope with the stairs and the new cupboards are no more a mystery than the old ones had become.  It was worth the upset but I did have doubts in the middle.

Another positive to come out of the activity is that he accepts he cannot do DIY.  He is happy to have local trades people in to do the tasks.  We agree that they don’t always do it the way we would have done but he shrugs, makes them tea and enjoys the task being done.  He sometimes makes them lots of tea because he forgets he has done it but they don’t argue and the only cost is a few tea bags and sugar. One thing that has been very good for him is when they have had to remove something he had done earlier in life they recognised the good job he had done.

The one thing that cropped up during the work that I suspect is a feature we will have to learn to live with is occasional changes in personality.  I thought at first they were stress related but they have continued even though the stress is much less.  He is different in demeanour: cross, bullish, arrogant and rude.  Not at all the man I married or live with most of the time.  Unfortunately he is also inclined to take on tasks he cannot complete and it is a struggle to stop him.  I do not yet cope with this change as well as I need to.  I am still hurt by the things he says and want this strange man to give me back my husband.   I have found accepting that at that point I am a carer not a wife a good strategy.  I just need to be successful at that more often.