Birthdays and colds…

I have a nasty cold and have been laid up for a week.  It was my birthday yesterday – 61, where has the time gone?  I sat in my chair all day feeling absolute pants.  I had phone calls from those who care for me but none from my family.  My niece J did not send a card, and I think that maybe she did not receive my Christmas card and present to her, but because they never have any contact with me I would never know. 

I have been thinking about the cards I make, how difficult is it to sell any when the world and his wife have decided to make cards also.  I still have this urge to share them with others so will think about how I do this.

I was listening to a Radio 4 program which was discussing the dangers in the Winter Olympics being held in Sochi at present.  Is it too dangerous?  Young people are being injured…What a load of tosh!  This year snowboarding, half pipe and similar events have been included and the enthusiasm and skill at which the young have embraced the sport is stunning and infectious.  However, the health and safety ‘police’ are asking whether we should allow our young people to take risks of injuries!  Good God can they hear themselves speak.   Ask every young person if they are willing to risk their life to live it to the fullest and I have an idea not one would say no.

As Eleanor Roosevelt said:

The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.

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° – 38° 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° 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 ‘done the talking’, 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 – 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 ‘colour coded spreadsheet pocket checklists’ 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.   

1st February 2014

January has brought lots of rain and with it floods.  Whole areas in the Somerset levels have not drained away and remain as a new sea.  The radio is full of politician speak; full of meaningless sentences about how they ‘have people and money in place and long term strategies, and plans for the farmers to take responsibility’.  So now it has become ammunition for political parties.  A village has become an island for several weeks with children taken to school by boat.  The authorities have installed Portaloos in the pub car park because the villagers can no longer use their toilets.  The Army has been invited in to help with logistics, and the argument rages on about whose fault it is.  The truth is, we use more land for crops and animals having ripped out the hedgerows, and ignored maintenance of ditches, plus we have more rainfall in the past few years.  Rivers and canals have stopped being dredged and along with the loss of the trees that thrive on the excess water has created a problem.  Historical land management can still teach us lessons if we choose to listen.  

Russell Brand has been slated by the media because he said that young people should not vote as it is a waste of time with only ‘one political party with three heads’.  They say he is irresponsible to tell the youth this and encourage the young to vote to change things, but I don’t think the politicians ‘get it’ at all.

Both Mr Hsg and I cannot listen to Radio 4 early morning because it is simply political garbage.  Does no one speak honestly anymore?  Presenters ask a question and there is no direct answer only party line answers.  It’s a game that nobody wins and everybody loses.

Same appointments different places – 17/01/2014

I forgot my first appointment of the year on the 2nd January the at Mental Health Services.  Chelle phoned and we arranged another appointment.  She was very serious as she spoke about us about thinking about care later on when I need a full time carer.  I tried to say that Mr Hsg will never be my carer because he would not be able to cope, but I think other people find it difficult to acknowledge that a spouse simply would not be able to care for someone with dementia; of course they would for as long as they were able then residential care would have to take over.  Wrong.  I already know he is not able to take anything over from me now, he does not get involved in remembering when my appointments are, where they are or who they are with and he is already saying “what do you get from going to see any of these people, you don’t get anything from it”.  I try to explain why it is necessary right now, making sure the services are there for when I need it, getting my medication right, or simply monitoring any changes. It is only because I have transferred to local hospital services that I am seeing these people for the first time.  I think Michelle finally got what I was saying when she said that we had to think about what would happen to me at that point, to which I replied that I would have to go into residential care somewhere.  She said she would contact the dietician to talk about how to write down about my Irritable Bowel Disease and my intolerances in a way that would be taken seriously at a time when I can no longer cook.

The next day I had an appointment at the Doctors Surgery for a dementia screening.  When they phoned me with the appointment I said “I don’t have dementia, I only have AD at present”.  The doctor was lovely but clearly thrown by my lack of dementia.  She attempted to explain to me that you cannot have Alzheimer’s without Dementia.  So I had to explain to her how I managed to get a diagnosis of AD without Dementia.  She diligently read all the letters on my file, and concurred that I was very unusual.  However, this appointment felt like we were saying the same things two days running; no wonder we are both fed up with appointments.

Chelle said that I had an appointment with my Consultant at Oaklands, although I had not received an appointment letter.  Having seen her in Derby previously I Googled it and found Oaklands, Mental Health Services, so we set off.  When we got there it did not seem to be the right place and we went into the office to find out where we should be.  They looked me up on the computer and said I should be at Oaklands in Swadlincote!  She printed out the letter which I had never received and in capital letters at the top it said “Please note new venue for this appointment”.  Back in the car we drove from Derby to Swadlincote and found Oaklands Village a new retirement village.  Oh my, it was impressive, wood and glass, and full of seemingly happy people.  A bistro restaurant, café, hairdressers, library, crafting rooms; I could see people sewing in one, soft furnishings with groups of seating for people to sit and chat, and apartments.  They have a surgery for visiting consultants and my Doctor has a weekly surgery there.  We discussed my medication and talked about support groups, she introduced me to someone from the Alzheimer’s Organization who has an office there. She talked about the groups around neighbouring areas and what they do, but it became apparent that these groups are for stimulating memory for people who are further on in their Alzheimers journey.  I talked about what I would like; a more social type of group who could understand each other difficulties, to be able to talk without worrying what people think when you cannot find a word and gaze into the distance as you are desperately searching for it, not worrying that they will stop talking to you because your conversations become difficult, with the flow of words drying up mid-sentence.  Elaine understood exactly how I was feeling about it, which was so nice.  She said I was unique in the fact I was diagnosed so early that there may not be anyone else as early diagnosed as I am.  There’s a challenge if ever I see one!  She said she would talk to her line manager about it, just because there is no group that doesn’t mean that one cannot be set up.  I told her about my writing and she was amazed commenting that I was writing a PHD….food for thought there (not for a PHD exactly but I could do my own study as I go)!

Time has flown by, I need to catch up!

Christmas 2013

What a conundrum this year, my daughter has asked us to spend Christmas with her in London.  Mr Hsg has always made a point saying he never wants to go to London, so what to do?  The solution was that Mr Hsg would take me to London on Tuesday – Christmas Eve and return home, and would pick me up on Friday.  That way he would not have the stress of being somewhere unfamiliar and could remain with the cats.

How fabulous are these slipper socks!

 

We got up, made tea and coffee, and opened our presents.  C had knitted me a pair of slipper booties, they are brilliant!  She also made chutney this year which has delighted me immensely.   Such thought and effort that she put into my present.  She made chocolate truffles for her boyfriend’s parents that looked divine in the box she had carefully chosen.

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That dinner was far too big!!

Her boyfriend went to his parents to have Christmas dinner, whilst C and I cooked dinner together enjoying catching up with chats that I miss so much.

We had been invited to join C’s boyfriend’s parents for drinks, as this is a serious relationship they naturally wanted to meet me.  I admit I was very apprehensive as there would be several other people there and I struggle sometimes to chat normally with people I don’t know.  The stress makes my loss of words worse unable to finish a sentence.  “Don’t worry” C says to me, “everybody loses words when they talk, I think you make too much of it”.  She has always found it hard to acknowledge any illnesses that I have had, and ignoring them to make them go away.  I have to talk to her about it sometimes though so that she understands my behaviour.

We walked from her house to Greenwich Village to J’s parents house, I felt sick with apprehension and too much food!  I realised that at home my plate is small but our Xmas dinner were plated on normal size dinner plates – delicious but not good for my digestion.  Of course I declined the suggestion that we get a cab, and welcomed the 30 minute walk.  The evening passed very pleasantly with lovely friendly people and a large glass of water.

Boxing Night was a real treat with a trip to the Haymarket Theatre to see ‘One man, two Guvnors’ with J’s parents.  It was excellent and very funny, a great way to spend time.

It was so lovely to be with my daughter, but I looked forward to going home with the peace of the boat and our quiet lifestyle.

When I think of being with people I don’t know I worry that I say the wrong things, inappropriate and isolate myself.