Out of the marina and away…..

The big cruise.  We set off out on the cut on Sunday 28th July 2013 unfortunately it was not in good circumstances as Mr Hs suffered a bit of ‘rage’ at me because I asked a question three times.  I was just as shocked as our boat neighbour who discreetly disappeared into his boat, until we were backing out of our pontoon.   As we continued along you could have cut the atmosphere with a knife between us.  Fortunately I am not the sort of person who accepts bullying and abuse.  However, this is out of character for him so I have no idea what is going on with him.  As we were travelling he said sorry, but I should not have asked him more than once.  “I have Alzheimer’s” I said “Its what I do, I can’t help it, its not my fault”.

I had been excited for this day when we could travel, having spoken to my doctor who phoned me two days previous and said she would contact the new Memory Clinic and tell them I would be away until October.

We moored up for the night, among trees having to use mooring pins in very soft soil, the mooring ahead of us with rings was occupied.  In the morning Mr Hs suddenly had another rage at me, this time shouting and swearing leaning in towards me as he did so.  I held my hand up and talked quietly and calmly to him telling him to stop.  He told me I was the problem why he was raging, but I was not the one who had lost control of my temper!  At that point he got dressed muttered something about going back and left the boat.  I sat on the back in a chair drinking coffee, reading my book.  Something was wrong and he was taking it out on me.  I called my daughter and talked to her which made me feel better, and he returned two hours later as if nothing had happened.

Moving on…….

We left and continued our journey, the countryside full of lovely long grasses and wild flowers.  A field of traditional breeds of cows such as the Longhorn, all suckling calves.  What a delightful sight to see.

After a few hours we moored up with fields on either side, we let the cats out and they explored the bank and the hedge.  Ella sat with her eyes firmly fixed on whatever little secrets were further in until she eventually came running into the boat with her (very small) kill.  I could not see what it was because she ate it all very quickly!  Daisy just wanders sedately up and down, not straying far but enjoying the freedom.  Today we left there and continued on our way towards Stone, and then Stoke.  It has rained, been incredibly hot and humid.

I have seen a Water Rail in the reeds, and a large flock of Greylag Geese in a Stafforshire field.  Ducks have got their second fledglings this year and we pass them at various ages.

Before we have reached Stoke, we have moored on a concrete edge looking across marsh one side of us, and a railway line the other side of the canal.  We can’t let the cats out because of the bycycles coming along the towpath at speed.

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This is Ella patiently waiting for a mouse
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Beautiful sunshine, canals, what more can you ask for
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Traditional breeds of cows being bred here

And now to cook a meal for us.Image

Back to get ready for the big cruise.

We are back in the marina after a few days at Tixall.   Soon we will be going out for a few months, lazily travelling and mooring up when we find a nice spot.

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Moored up at Tixall

I have been waiting for an an appointment for the memory clinic in Derby (being transferred from Leicester), but if it doesn’t come soon we will leave anyway.  I cannot live my life from one appointment to the next.  My Alzheimer’s is not going to get any worse for not waiting, and life is definitely too short not to enjoy it.

Today we are moored up at Tixall

Today we are moored up at Tixall, just past the wide, but still in the middle of nowhere.  It is heaven here.  There is a rookery in a large tree behind us and about 2 to 300 rooks are  coming and going in one large flock, it is stunning to watch.  To the side of us the other side of the canal are reeds where the reed warblers flit to and from.  Swallows skim the surface of the water, and buzzards sit on the wires across the field in the distance to to left of us.  the noise of the birds is tremendous even though the rest of the world is silent to us.

The silence is deafening and beautiful at the same time.  This is boating at its most precious.

Of course we have had a bbq (with our COBB BBQ) cooking a whole chicken.  It sat on the back like a statement and cooked away whilst we relaxed in the setting sun.

Both cats now in from wandering we shut up the back and have settled down for the evening.

Boating is the most relaxing activity anyone can do.  Once you are out in the cut miles from anywhere, there is no phone signal, no internet ,no noisy neighbours, no traffic…just birds and quiet bliss.

# Updated to say we have internet!

Community

This afternoon I sat at the bench on the grass at the end of the pontoons.  I had a book and a cup of coffee.  I had not been there long before another boater turned up with his dog Lewis and his ball.  Lewis does not have an off button.  You throw the ball and Lewis brings it back, then demands to be thrown again.  He does not give up..It is tiring watching him.  He came and sat at the table, then T joined us, followed by S his wife.  We all sat chatting.  Mr Hs had gone into my work to collect some paperwork which I could not deal with.

Meanwhile we sat and chatted, we saw a lorry wending its way round the marina, and deduced it was delivering the bench seat for Jean who died earlier this month.  The bench was put on the hillock by the bridge overlooking most of the marina.  We all walked to see the bench which had the inscription from her husband that binds her to the waterways, canals and to Bromley Marina.  We sit, talk, stand and she is there with us. The community of boaters is strong and we respect her memory.

Later when Mr Hs returned from picking up some paperwork from my work, we all sat and chatted.  I struggle to keep up with the humour because my emotional side has been damaged.  There is part of me that feels very isolated, very alone in a group of people.  It is like I am no longer a member of the human race, I am now outside of it.  I feel sadness that I no longer feel part of a friendly group, and they have no idea.  If I said anything to them I don’t think they would know how to deal with it, such is the problem with society.

An update on my Alzheimer’s

I feel I ought to stop and have a think about any changes I am noticing.  Well, I think my Fibromyalgia pain has got a lot worse.  We went to the Crick Boat Show and walked round for three hours, just pottering nothing strenuous.  We chose to look around one of the narrowboats built by Wharf House Boats who build bespoke boats that are simply beautiful.  As I climbed into the cratch (front of boat) and sat on the side to have the paper shoes on the muscles in my thighs screamed in pain, getting out was worse.  The distance I can walk comfortably has noticeably changed since last year.  I keep saying that it is because we have not had enough exercise to keep supple, but the truth is we do walk as much as we can.  If we do stay in, I am up and cooking every day, which counts for up to an hour with activity.  My consultant did say that she thinks there is a link with problems such as Fibromyalgia and Alzheimer’s Disease.

Today my throat is sore, my glands hurt and I can feel a heaviness when I breathe; hayfever.  I have only experienced this over the past couple of years, although this year feels worse.  My voice is so husky I could do a good rendition of ‘I was born under a wandering star’ sung by Lee Marvin one of the deepest voices ever!  My neck is painful, but I know it will go once all of the oil seed rape and tree pollen has dissipated.

My home
My home
Where's mine?
Where’s mine?
Boating friends
Boating friends

We sat out with our friends and their dogs on the bench overlooking the marina last night and someone made a joke about a refill of beer/lemonade, but I thought they were being serious and offered some of my lemonade.  When they commented they meant beer, I felt a bit embarrassed inside.  I am aware when I mistake some comment or joke for a serious comment, and that upsets me, it is as if my conscious self can only watch as the automatic self, make mistakes.

I have also noticed that my vision is not as clear, I cannot explain what the difference is but it is different.  Sometimes reading is hard, and I struggle to follow a story because the physical act of reading the words is more difficult.  Reading involves scanning the words either side which are in the peripheral vision linking each one to the last and ahead.  Maybe the processing of the semantics of the words is becoming slower than the visual match, which would confuse my ability to read fluently.  I have always been a fast reader; scanning the sentences rather than read each individual word slowly and maybe this is something that I will have to learn to do now.   I love reading but have to start and finish a book without a break so I understand and remember the characters and plot in the story.  So once I start a book I literally can’t put it down.  When I write  I am speaking the words in my head and not on paper, but can often miss words out when I am typing even though I have spoken them in my head.

I am also letting go of worrying about things I cannot control.  I cannot control how my family deal with life and me.  I used to worry about my daughter, wanting to protect her from all of the harshness of life, now I leave her to sort things out without me.  She has always come to me when there are problems; I can still point her in the right direction, but will no longer be actively involved because I recognise that I cannot.  I simply don’t have the mental resources anymore.  I have always lived my life with guilt (a legacy of my mother), did I do enough; was I a good mother/bad mother; what if I don’t help her sort things out?  However, I have got the psychology degree and know that I am the ‘good enough’ mother which is all we can hope to be, we give children the rules and the tools, and it’s up to them to learn how to use them alone.

Tears and reality – 17th May 2013

Finally I am crying and cannot stop.  Finally Mr Hs has shown his anger with me and has stormed off.

What started it; I asked for the fan on the fire to be tilted a bit because I feared the light hitting it.  Sharp flashes of light sets off a migraine for me and because the sun has moved round in the season it hits the shiny turning blades of the fan with a strobe effect.

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3 Blade ecofan

Mr Hs just blew!  He started talking about the fan not working properly if it is not facing outwards.  ‘So it is ok for me to get migraine?’ I finally commented.  He simply repeated that the fan only works as it should facing outwards.  He then went on to say how I am going on and on that nothing is right; ‘it’s too warm’, ‘it’s too cold’.  He then copied how I fan myself at night when I get a hot flush.

‘What’s wrong with that’ I ask, “I never say anything, I don’t complain, I am just fanning myself cooler?”

However, it didn’t matter what I said, he was going to be angry and would find something that was irritating him to justify it.  He said he ‘wanted to argue’.  What can I say to that, when I do not.

So I cried and cried.  I cried with the futility of my anger at having the disease.  I cried with the unfairness, I cried because there is nothing I can do to stop it.  I cried for the loss of my life later on, I cried for Mr Hs having to deal with me with full dementia.  I am guessing his anger was for the same reasons.

I don’t blame him for his anger.

I am so sorry Mr Hs, I wouldn’t have put this on you had I known before we met.

It felt like a glimpse of my future, with Mr Hs getting irritated by my Alzheimer’s because he is angry and I am no longer able to stand my ground, and I cried for my helplessness and his helplessness.

He got dressed, left the boat, and busied himself with filling the tank with water, bringing the bag of soil for my pot plants and generally pottering about.  When he returned later, the anger had dissipated, but the air was heavy with the words already spoken.

But he had thoughtfully sprayed the shiny blades of the fan black.

Later when we had got into bed he kissed me goodnight healing the words of the day.

Swallows and warm days

At last the sun is warm and in abundance.  We have decided that because it is Bank Holiday Monday we will stay around the boat and do chores, reserving our outings to mid-week when there are less people around.  I have washed the windows, taken the plants off the roof, and soaked them.  I want to create a boat-top garden for some flowers and herbs this year, and maybe some tomatoes.

We joined our boat neighbours at the picnic bench and chat until it started to get cool.  .  As we sat we watched the swallows around us dipping into the water to catch the early evening flies.  It was so peaceful in the warmth of the day to be in such a lovely setting.  It was good to get together; the boating community are such a friendly bunch of people and we all extolled how lucky we are to be living such a relaxing life.

The table was covered with wine, lager, glasses, and a jug of water, nobody had finished cooking or eating so the alcohol was a little more effective than all 7 of us had intended!  I had made a hotpot in the slow cooker, but later found I had not turned it on!  I cooked an omelette instead which did not look at all appetising.

This morning when we woke I checked twitter, and found my daughter had been yet again taken to A&E due to an attack of gallstones.  She is now unable to eat anything without it setting off extreme pain for her.  At hospital they did a blood test and said her liver had only been compromised a little, which is more than her last blood test at ‘not at all’.  I worry because having struggled with an eating disorder which she has overcome; she is now in a state where she is having to reduce her food intake because she cannot tolerate the pain.  She was sent home with the advice to keep taking pain killers.  She has an appointment with a consultant in two weeks time, but will still have to wait for a date to have her gall bladder removed.  I had to wait 6 long painful months, sleeping through most of it through the sickness and being clearly unwell.  I hope the NHS will be more kindly to my daughter who is only 27.

As I sit here writing this, I can hear the Buzzards calling as they fly high over the marina, along with the chatter of small birds in the hedge.