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.
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, 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!
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.
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.
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 “Mum you need to get off now”! 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.
Update on my Alzheimer’s Journal
Today I signed the papers to donate my brain and spinal cord..obviously after I am deceased!
Brains for Dementia Research wants donations of both those with Alzheimer’s and Dementia, and healthy brains. Without brains there is less research, and less hope for people like me with AD (Alzheimer’s Disease).
Neuroscience has move on with our knowledge of AD but not enough to prevent it, and it does not discriminate who it takes. I don’t have a history of AD in my family so it is not something that ever crossed my mind thinking about getting older. Yes, my mother has vascular dementia but it is through a serious of mini strokes not inherited.
If you are interested to find out more about it, here is the Project site for information.
http://www.brainsfordementiaresearch.org.uk/
I am one of those people who believe that when you die your self/conciousness/soul has gone and your body is the vessel that is left behind. I have always wanted my death to have meaning of some kind and the only way I can feel that is to know that others may benefit indirectly through donation of my brain to science.
Death is a difficult subject for people to talk about or think about, especially if your faith is strong in a religion, but I have always talked about it to my family to make sure that they understand how I feel.
I also understand that when you lose a family member the thought of allowing parts of them to be taken is be extremely distressing, but I try to put across to my family about how I want to help others this way and I would rather have a tree planted or a bench put somewhere. My ashes is not who I am (or was, when the time comes) who I am will remain the memory of my family and friends, and those have known me some way.
Gerry Anderson the creator of Thunderbird donated his brain to the Brains for Dementia Research Project when he felt the drugs he was taken to slow his dementia were not working.
All I need do now is have an assessment once a year to see how I am, carry my donation card with the phone number on, and forget it. That’s another thing that has been taken care of.
Maybe one day I may have had a tiny part in helping find answers to the how and why, and what of Alzheimer’s Disease.
Making stuff from scratch in the wild
Living with Dementia, rights and advocacy
Author
Learn, laugh, live.
I'm a 46 year old lady with dementia but living with positivity and optimism
Around the world by bicycle
Makes, remakes, mends, darns, sews, arts, and crafts.
reflections on a passing life
Handbagwarrior; verbal ramblings 
You must be logged in to post a comment.