A proud Mum!

A couple of days ago my daughter phoned me from London and told me she would be walking with some of her work colleague’s at Sainsburys Supermarket for Sport Relief http://www.sportrelief.com/.  She had recently expressed her dismay at the way some people are taking a “selfie without make-up” for breast cancer, saying what good will that do without donations to go with them.  She decided that she wanted to do ‘something’ rather than just give a simple donation and joined in the 12 mile walk to raise donations.  Now this is a person who has clinically flat feet, and who lately has complained of intense pain in her feet through wearing rubbish shoes as she tells it.  Working only 20 hours per week she does not have extra cash to buy good shoes for her feet, but here she is walking to raise money for others.

She got up at 5am to get ready for work at 6am, worked until 9am and then joined the walking team to start at 10am.  Their aim was to walk carrying buckets, to each main supermarket store collecting donations on the way.  After 8 miles the area manager surprised them all by joining them for the remainder of the way, and as she put it he could have sent an email to wish them well, but chose to walk instead.  She text me a couple of times with her progress saying her feet hurt but was enjoying it.  After taking a detour they finished the walk having completed 16 miles, in a pub for a drink paid for by the area manager.

When she was home she phoned me sounding exhausted, it was brilliant, she said, we were all buzzing, we must have collected about £200 plus our own sponsorship donations.  I hurt all over, I have enormous blisters, but I want to do it again, she told me.   I want to start doing things for charity, I want to run the marathon, it feels so good although I know that sound selfish!  There is nothing wrong in feeling good helping others.  She needed to eat, bathe and sleep next.  A hot bath would have been good but the landlady had the taps removed to save money leaving only a shower, it would have to do I told her.

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There is a matching one on the other foot – ouch!
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Claire is the one with the orange bag in the front 🙂

Right now I am the proudest mother ever not just because of her achievement but her wish to help others.

21/03/2014 – Tests to check my eyes

I was summoned to the Treatment Centre to check my eyes.  I had the usual visual field, GDX and another test and all the results were good.  Fabulous! That’s what I always want to hear.  The consultant asked me questions and finally said, I have never heard of the symptoms you are describing, he mused.  Do I look smaller one side to you; no I answered it is usually when I am reading that it occurs, although my perceptions of buildings and road are weird.  I find it fascinating I laughed, and he agreed.  This sounds like a problem with perception and your brain he concluded saying he would write to my Doctor for a referral back to my head consultant, although it would probably be just for notification only.  What an interesting Alzheimer’s Journey this is turning out to be!

My Alzheimer’s Journey – an update

I had an appointment at the opticians yesterday after having some problems with my vision.  A couple of days my right eye hurt and my vision appears to have worsened over the past couple of months.  My eye pressures were fine, and in fact were lower than they have been at 19 and 20 mmHg (millimetres of mercury [mmHg]).  As I have thicker corneas the pressure will always register slightly higher.  I need new glasses for distance.

I mentioned that when I read the right hand side gets smaller, so that it is like reading down a funnel, and that it feels like my right eye is not quite functioning properly.

This is how it looks to me

So, the opticians gave my eyes a thorough check and said my eyes look healthy.  We discussed the brain scan I had had two years ago and the fact that the abnormality, and head pain I get is all on the right side.  It could be a problem with perception rather than my eyes she said; my brain you mean, I thought.  I am not sure whether I am worried or fascinated by the neurology of it all.   I thought of Terry Pratchett  and his rare type of Alzheimer’s affection his sight.  We know very little still, about the brain.

A letter to my Doctor to refer me either to my Consultant for the Alzheimers, or the Consultant for my eyes to re-check all is ok will be sent.  Seems like it is more to do with my brain than eyes. 

An Interesting part of my Alzheimer’s Journey….

An honest conversation with my Father

I spoke to my Dad who was in an interesting mood.  His conversations with me always leave me wondering what he was trying to say.  I guess because we do not talk as often as we should, and because I am outside of family politics, he finds it easy to talk honestly, and unburdens to me.  He spoke of trying to clear the house of clutter that my Mother who had dementia has accumulated over her lifetime.  I opened a box, he said, it was 18” by 12” by 9” deep.  It was full of things, he said, but there was confusion in his voice.  What was in it? I asked.  Things, he answered, you know, things for her quilting that she used to do.  But there are many boxes like this, he said, lots of them.

My Mother liked to quilt, making sewing boxes, cushion covers, anything that could be made or intricately covered with bits of material.  She would constantly buy paraphernalia for future projects and store them.  Before quilting she used to make leather gloves.  When my daughter was born she made a pair of baby booties in the softest white leather which we still have today in her ‘baby’ time-bag that I made up for her.  They were beautifully hand stitched with tiny stitches, lined in the softest cotton, and fastened with tiny buttons.

There was a note of exasperation in my Dad’s voice as he wondered why on earth she bought so much that she could not possibly use in her lifetime.  I listened to his voice revealing that the task once started was too big for him to continue.  He moved on to talk about the ornaments about the house, “there are so many” he repeated, “and some are worth a lot of money”.  He is saying there are far more ornaments packed away than on show.  I don’t want to give them away, he says, I don’t know what to do with it all.  I pause and think, the college may do classes in quilting and sewing I say, you could give the boxes of quilting materials to them.  I am sure someone could pick them up.  He agrees that finding a course to donate it to would be good.  The question of the ornaments; this is difficult because now he is talking to me as someone who has no connection with the family or the ornaments.  I note he is saying he would sell them if he knew how as he does not want to give them away.  Okay, I start, you could collect them bit by bit and put them in boxes in the other bedroom (my sisters and my old bedroom) and get the local Auction House to come and look at them to value and sell them for you.  He is talking as if he has no knowledge of my Mother’s hoarding behaviour.  I was never able to stay with them in their three bedroom house because each of the spare rooms were store rooms for boxes of food, toiletries and items that should have been thrown away years ago.

He says he found some drawing crayons in a box, I may have a go at drawing with them when I get time. He is a wonderful artist but has never found time to enjoy it. Time is what he has now, peace is something he would like.

Thinking back I wonder why I was being so objective and realise that when I speak to him I go into (counselling) listening mode which makes it easier for my Dad to talk to me about what he really feels, and for me to listen to him without it upsetting me.  At 92 he is a man of his time who has never expressed emotions very easily if at all, so hearing him bare his soul to me is a privilege.  Though I have never had what anyone would call an active relationship with my parents, I am now able to be able to play my part as a daughter and listen as he unburdens how he feels with honesty.

Your Mother is so pale, he says, I think she cannot last long.  Although she is hard work she is no trouble, he continues, she used to be quite prickly and sharp as you know, he says lightly, but she is very mild mannered and amenable now, although you can’t have a conversation with her.  Dementia has removed her anger; it has transformed her personality into someone who should have always been.

When I ask him about how he is, his reply is brutally honest.  You know I have this aortic aneurism, he says, they said six years ago that it could balloon and burst, so who knows when that will happen.  He says this as if he is expecting it to be relatively soon.  Is it painful, I ask, not yet, he informs me, but I think it can get painful as it gets worse.  He mentions his age, and talks about his lymphatic leukaemia and the tiredness.  Your Mother getting up at 2:00 am doesn’t help, he says, I don’t know whether I am so tired because the leukaemia is worse or because I don’t get enough sleep.  He keeps saying he is not complaining though.

I think about what I was hearing and wonder why he is trying to clear the house now?  He is struggling to do it, but wants to get rid of it all – isn’t this something children do when their parents have passed on?  Why is it bothering him so much to have my Mothers clutter around when he has lived with it for all of his married life?

What I am hearing from my Father is this:  he is not complaining but he is tired of looking after my Mother.  He is still extremely bright in his mind and he is spending all day without reasonable conversation.  He is not feeling well but he is the carer, and he is tired of life now.

He does not want to hear bickering from my sister and brother, he wants peace.