Alzheimer’s: Dreams and beyond ūüĆŹ

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Just been scrolling through and reading some posts of the people I follow, and some I haven’t met yet. ¬†I love reading travel blogs and seeing pictures, something interesting, not just blurb about the places that can be read in any travel brochure but personal experience.

Thing is, I seem to have a ‘compulsion’ to seek out personal experiences in remote places. ¬†I am not totally sure why this is, but I feel as if I am always searching for something, some truth or peace. ¬† Is this something new? ¬†No, I think I have been like this my whole life. ¬† I enjoy seeing the simplicity of people’s lives, and even though I know it is a hard existence I find myself imagining what it would be like to return to basics, to be filled with the simple pleasure of seeing the mountains/forests/rocks/grasslands around me.

I found a great site called Gypsy by trade and devoured their experiences feeling so envious.  How wonderful to work and save for six months and then travel by bike around remote places.   To meet the people they have met, seen such wonderful land around them.

Of course it¬†is an absolutely ridiculous thing for me to feel envious of their lifestyle, I am too old, too decrepit and in pain with Fybromyalgia, and I have Alzheimer’s, but it doesn’t stop me dreaming.

Hope is a waking dream.  
– Aristotle

I believe that my peace is without luxury, it is plain, natural, and honest.  It is in silence in the midst of the roar of nature.  I think if I were remotely religious I would be a Quaker.  I once attended a course on debt at the Quakers House in Leicester and remember the feelings of peace being there with the simple style of plain wooden furniture and the calm of the gardens.

I feel sometimes as if my life has fallen through the holes of sieve. The excitement of my youth with dreams and plans trickled through with lack of confidence to live, fell through first…

Now; I feel a contentment in myself, I am terrified for my future with Alzheimer’s because there is nothing I can do to change it, but right now I am comfortable with who I am, and how I am. ¬†I have the peace of being on water, waking up to the birds each morning, and most days no industrial noises. ¬†Only when the wind blows one way does the traffic intrude.

However, that yearn for travel is still with me, searching for the love of experiencing other places.  I love the excitement of getting on a plane and landing somewhere I have never been.  Early this year it was Budapest, a wonderful place, and memories with my daughter.  We drank in the architecture, the history and culture.  We walked and walked finding enjoying the different areas.

Our next adventure will be to Alaska, my dream place to be.  Our once in a lifetime holiday whilst my mental abilities are still good.   I am not sure how long it will take me to save up but I am already excited to breathe in the remoteness, the stillness, and moments of being surrounded by peace.

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Our break away in Budapest – 15/02/14

Budapest is beautiful!¬† We stayed in the La Prima Fashion Hotel and I am glad I chose it.¬† My daughter and I walked our socks off around the city.¬† On our first day we walked the 2.5 kilometres up Andrassy Utca (street) stopping for coffee and a visit to The House of Terror where so many people died during the Communist regime in Hungary.¬† It was well designed and informative, but most of all very moving.¬† Continuing up Andrassy Street the buildings were unique in design with stone figures, ornate balconies or decorated facades.¬† There is a gothic feel to some buildings giving the appearance of opulence.¬† We went through into the inner courtyards of the many storied buildings peeking at the galleried residential apartments.¬† Our destination was Szechenyi Thermal Bath and Spa.¬† Paying for a little wooden cabin we changed into our swim suits and headed to the pool.¬† Through the door in front of us lay a labyrinth of pools each with a different temperature.¬† We tried out several pools; 34¬į – 38¬į and then went ventured outside into the open air.¬† The pool was hot and steam rose in the cold air like a thick fog.¬† It was glorious!¬† Our last pool inside was a hot 40¬į which we were in and out of quickly, we declined the final ice cold plunge pool!¬† It was a most pleasurable experience.

We ate and drank Hungarian, all the while chatting and enjoying each other company.  We walked to Buda and enjoyed the medieval town, taking the bus back.  My body screaming in pain is letting me know I have done too much.  But we had a fabulous time.

In the past, as the parent I have ‚Äėdone the talking‚Äô, this time I did not feel so confident to ask or explain things and passed to my daughter that task, which she did so eloquently.¬† I was aware of being inattentive to my surroundings more than once had to make sure I was not standing in the road whist taking photographs.¬† We talked about my fears that Mr Hsg is unable to care for me, and she reassured me that she would bring me nearer to her when the time is right.¬† London would not be my first choice, but being near her would be.

7th February 2014 ‚Äď holiday preparations

My daughter and I are going to Budapest for a few days for our birthdays and to have time together. ¬†I have completed ‚Äėcolour coded spreadsheet pocket checklists‚Äô for me and Claire.¬† Ok, I admit to being a spreadsheet geek but if you have to take general information/emergency information then a spreadsheet fits that bill.

I have updated and charged up my iPod and Kobo with music and reading material.  I have started to pack my case and am excited to finish it.  Only 3 days to go and I shall be in Budapest with her.   

Christmas organised…

Mr Hsg is going to drive me to London, drop me off at my daughters house and return back to the boat to spend Christmas with the cats! ¬†He struggles with Christmas, and says he feels ‘awkward’ celebrating in the company of my daughter (or friends). ¬†I understand how he feels as it is the same when I am with unfamiliar people. ¬†I miss being with my daughter, and Christmas for us is about cooking the dinner together, sitting eating and enjoying the day. ¬†We are close and I know that it is hard for others to break into that closeness, but it is important for the two of us to have every moment we enjoy together that we can. ¬†Mr Hsg and I have been together for nearly 4 years, my daughter and I, nearly 28 years…….

I have packed a bag, made a list of what I am taking and feeling both excited and guilty.  Excited about spending Christmas with Claire who loves Christmas, and guilty for not worrying about not being with Mr Hsg who hates celebrating anything, especially Christmas!  He obviously cares about me to understand that it is important for me to have these times with Claire.

My list:  Presents, food; Turkey, Veg, Gluten free things..Camera, Tablet (charged up), Christmas cheer!!

Happy holidays!

Christmas Wishes!

To you all.

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

I have been to London on a train!

I was both excited and apprehensive as I stood on the station at Lichfield waiting for the train to London.  I have loved visiting cities on my own, catching trains, trams, underground, but for the first time I felt a little bit scared of getting confused with my new lack of sense of direction.  This was no problem though because my daughter would meet me at Euston Station and take me to Greenwich where she lives.

Two tubes and a bus ride later, and we were in the house where she rents a room.  Taking our cameras we went to Greenwich Park and as the sun heated up she took me through little shaded paths to where the squirrels scamper openly.  As she sat on the path and got out a packet of monkey nuts, out they came and ventured up to take them from her hand, one after another.  Occasionally one would screech or grunt at her and she laugh.  It is so lovely to spend times like this with my daughter. 

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Feeding the squirrels in Greenwich Park, London

 As she sat I saw a unique side to her, this is someone who I had told could do anything she wanted, and this was it in its basic form.  Whilst people walked by, she simply sat and ignored them and fed the squirrels and coal tits that sat on her hand.  She was engrossed with the moment and the wildlife around her.  This was what she wanted me to experience with her.

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We walked around the park, through the trees following paths that her boyfriend had shown her.  We climbed the hill to the top where the Greenwich Observatory is, and I took her photo standing on the Prime Meridian Line.  The climb was hard and my back and legs were very painful.  The view from the top across the London skyline is indeed beautiful. 

We walked around Greenwich as she showed me her favourite shops and places, she is so at home there.  As we walked we chatted about anything and everything as we have always done.

 Out for dinner at…Jamie Olivers Italian in Greenwich, which we were both looking forward to and had a lovely meal, in a very  relaxed atmosphere.  Back home and to bed as I ached in every joint I have!

 The early hours of Friday morning I was woken up around 5 am by the freight trains trundling along the line at the end of the garden, followed by Claire’s housemates taking showers next door at six, along with a chorus of birds; gulls, jays and parakeets squawking outside.  She says you get used to hearing the constant noise of the traffic also, but I am not sure I would.

Claire persuaded me to stay another night so that we could have another day together, so we set off to the British Museum.  How anyone can remain overweight in London is amazing because there is so much walking even though you hop onto buses and tubes.  I decided not to take my camera so that I could enjoy the exhibits.  The museum was packed, and each glass exhibit was hidden behind groups of mainly Asian tourists taking photos before moving on quickly to the next one.  We started out with the Ancient Egypt part but there were so many rooms and things to see, by the time I was in too much pain to continue we still hadn’t finished it.  She took me to the Dome to look round; it was packed with people eating in the restaurants before seeing Michael Buble who was playing there later that evening.

 Again we had had a lovely day together, chatting as she showed me the sights of London near where she lives.  I am so pleased I caught the train to see her, and will be visiting her more often, but understand my difficulties with directions.

¬†A couple of times I was aware of my lack of attention, especially when I was looking in my bag on an underground escalator and she said ‚ÄúMum you need to get off now‚ÄĚ!¬† I had no idea where we were on the underground or where we were going, but Claire did so I just followed her.

 She took me back to Euston Station on Saturday morning to get the train back home, as I would not have found it easy to find my way there and back I came to the peace and quiet of our boat home.

Photography and friends

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My lovely friend on the very top of Snowden Mountain in Wales, UK

Having recently lent my camera to my friend whilst we were on holiday, I have learnt a little more about camera’s and photography through my dear friend of 30 years who is recovering from breast cancer and is an inspiration with her cheerful outlook to life. ¬†I lent her my Panasonic Lumix G5K, set it on iA (automatic) for her showed her how to focus in on a subject and away she went. ¬†David Bailey eat your heart out! ¬†Not only did she take good photographs, her photographs were well thought out. ¬†Her home life is not pleasant,¬†so it was such a delight to see her come alive with enthusiasm. ¬†She said she did not know she loved photography until she was given the opportunity. ¬†As I talked to her about camera¬†the bits I found I knew and realised that I am slowly learning more and more even it is taking a long time.

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A dandelion to be captured!

Every time I turned round Sheila was bending over or on her knees photographing some flower on the side of a road.

Having realised that she can no longer work at her three cleaning jobs anymore she has been looking for some purpose for herself. ¬†This is a woman who gives all of herself to others, feeling that she herself should take second place…it breaks my heart when I think of how miserable her life is at home.

On holiday she bravely left off her hat unless the wind was cold! ¬†¬†“Nobody knows me here” she said “so they won’t laugh at me“. ¬† ¬†“They laugh at you because you have had cancer?” I asked her, and she gave me a look that understood what I was saying.

When we got home, I set about printing out her photos for her. ¬†She does not have a computer and is not technological in any way. ¬†At present she says she would never learn how to use one…we will see ūüėČ ¬†Whilst we were away I ordered paper and inks ready and set about printing the 600 plus photos she had taken!! ¬†When we viewing on my laptop she would say “I want that blurred one, because I took it as we were driving in the car“. ¬†It has taken several days and I finally finished having got through two and a half packs of inks.

We will take them to her next week, (sadly we live too far apart to just ‘pop round’ with them) ¬†and I can’t wait to give them to her.

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Bee on flower taken by Sheila