Dementia and my Mother

I entered the ward and looked around the four beds searching for my mother.  I saw an old white haired lady lying in a bed moving her head and shouting out incoherently and was momentarily horrified to see that this may be my mother.   I turned around for reassurance from my Dad and husband but somehow I was alone, they had stopped by the nurses station to check it was alright to come in.  Retreating I then followed my Dad back in seeing which of the old women he would go to, the silent ones or the person I believed was my mother, I was not wrong.

My mother has vascular dementia and had been in hospital a week following a deterioration in her physical health, however I could clearly see that her mental health had declined also.

‘Hello, hello’ she is shouting trying to get anyones attention.   ‘Iris’ my Dad says, and she recognises him immediately.  I sit the other side of the bed and tell her I am Gill her daughter.   She looks vacantly at me and then at my Dad who tells her again that I have come to visit her.  ‘Our Gill’, she says with some recognition.

This woman is not the woman I last saw, she had dementia then, but still looked like herself, now she was shrunken, her dead eyes darting everywhere but not on me.  Her hair not combed in the way she like it.  In her hands she holds a small soft toy; a reindeer which the nurses have given her to hold.   She feels safer holding someones hand which she grips with a vice like grip surprising for someone seemingly so frail.

My feelings are so mixed up, this is the woman who damaged my brain punishing me with a ‘smack’ to my head with daily regularity or more.  She forgot she did not like me once she developed dementia and now she is towards the end of her life.  She refuses to have her false teeth in and is incoherent but continues to talk, nobody understanding all the words.  I watch my Father sitting with his hand gripped by her, his head tilted trying to hear with his hearing aid what she is saying.  He fails and just says ‘I’m here Iris, Okay’, then he falls asleep.  Lymphatic Leukaemia makes him tired, the stress of seeing my mother like this makes him weary.

I am listening hard trying to make out vague words as if they are important, as if they are the words I will remember when she has died because this is the first time I have heard her speak face to face in over a year.

She has a pacemaker and a chest infection, her kidneys are not working properly.  Her dementia seems to have got more of a grip on her and she is on oxygen.

I sit.  I touch her.  I have not touched my mother in my life before like this.  I stroke her hand but feel unattached to her.  She looks at me with dull eyes and I don’t know whether she is seeing me or not, or what she thinks if she does see me.  It is too late to talk to her of what she did to me, of how we are, or what she feels about me.  Although somehow I don’t think I ever would.

The nurses come and talk to her, they are kind, they are sensitive, they do not know her like I know her.  But her viciousness has gone…..I see her trying to speak, shouting at the nurse standing at the end of the bed, she is kicking her feet; up and down; I want your attention but don’t know the words to say it – She wants to go home.  That is all that she is interested in, going home.

She knows me and then when the nurses ask who I am she says she doesn’t know who I am.  My father explains that she never sees me very often.  I now have feelings of guilt, but I could not bring myself to visit someone regularly who hates me so vehemently.  I have kept in contact by phone which has maintained my mental safety having spent three years in counselling to overcome the damage she did.

I am sitting there, I am gentle with her, she does not deserve this, but I need this to be like a daughter that has always been part of a loving family.

My Dad on the Sunday we are leaving is ‘off’ with me, I am not sure why.  Maybe this is the old way that they both treated me.  My husband comes down and joins us, there is a conversation which is not conducive to me being a great person.  I ignore it because I know silence is the most powerful tool.  Then I am asked a sexist question so I make it very clear what I think; ‘us women are stupid aren’t we’ I say.  Nothing more, I have made my point that I was listening and that conversation is over.  The subject is changed.

This house is where I grew up being put down emotionally and psychologically.  You are useless, you are stupid, you are a whore.  I was thirteen when my mother told me I was whore.  What is that I thought, I had no idea then.   I left home to escape, to grow into someone who could believe in themselves.  It took me forty years and three years of counselling to get there.

Now I was sitting at the bedside of my Mother, her gripping my hand telling me and all the nurses she loved them.  The pain cuts like a knife.  I have never heard her use the word ‘love’, apart from telling me nobody would ever love me.  Her words feel as empty now as they have always been.

Back at my fathers house ( my old home)  I washed, cleaned, ironed, and tried to make things better before I left to go home.  As we are leaving my Dad says to me ‘I can’t see that she is ever coming back to this house because I can’t look after her’.  There is a sadness when he says this, adding if she ever comes out of hospital.

Family is extraordinarily painful when we have alway been fractured.

 

 

 

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.

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.

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.   

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.

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.