Dementia: Out of the mouths of babes..

I have just watched the most beautiful piece of film I have ever seen. I can guarantee that you will have never seen dementia viewed in this way before.

How do you be with someone with dementia? How do you communicate? Children are the sweetest gift ever given to anyone and in this film young people talk about their grandparents who have dementia and how they deal with it. If it doesn’t bring a tear to your eye then I will be amazed!

Produced by the BBC (British Broadcasting Corporation) for CBBC (the first ‘C’ standing for ‘Childrens’) this is a programme that is on air for children’s viewing times. I feel that this should be shown so that all adults can learn from children how to help their loved ones with dementia. Click on the link below to watch it.

My Life – Series 6: 3. Mr Alzheimer’s and Me

Josh, Ella and Hope all have one thing in common – they have a grandparent with dementia. It isn’t easy having to be ‘the grown-up’ when their grandparents get forgetful. But all three of them are determined to help them as much as they can. They all have their different ways of coping, which they want to share with other kids going through the same thing, and have recorded personal moments with their grandparents on their own cameras. Josh is determined to help his grandad remember and secretly gathers mementos for a memory box. Ella decides to organize a sponsored walk to help raise money for research into the causes of dementia. Hope’s granny gives dementia a character – Mr Alzheimer’s – to help Hope come to terms with it all.

29 mins long.

Dementia, Sense of Smell and Current Research

Current research shows that there is a possible link between the loss of the sense of smell and death perhaps within five years. http://www.theguardian.com/science/neurophilosophy/2014/oct/01/your-nose-knows-death-is-imminent The theory is that when the brain is no longer able to process smells that it is possible that death can occur within five years. There is no single cause of death found in the link. The diminishing sense of smell is something that is one of the many symptoms in dementia.

I first remember a problem with my sense of smell was when I was about 14 years old.
I was home ill from school and was on the sofa, it was a wet day and my mother had draped some washing to dry on the large square fireguard surrounding the hearth. On it was my older sisters new twin-set that my mother had bought her to wear in her first job. My mother came into the room and started shouting at me, ‘couldn’t I smell the scorching?’; actually no I couldn’t. The light grey twin-set now had yellow scorch marks over the sides facing the fire.
From then on I noticed my faulty sense of smell: a lack of smell for some things, not being able to identify some, and over sensitivity for others.

When I was 18 a factory next door to where I was working had a problem with chemicals they were using and the smell of it was making me vomit throughout the day. I was the only one who had this reaction to the smell and investigations by the Public Health Inspector (who happened to be my father!) concluded that Napthalene was the chemical and that their chimney needed to be raised.

Then at one workplace in my 40/50’s the perfume ‘Vanilla’ worn by a work colleague, (which one I don’t know but it is one of the more expensive fragrances), would make my nose bleed. When women lust after the current ‘must have’ perfume to wear, I just sniff and grimace wondering why they all smell badly of soap, or compost heaps! The brain is instrumental in interpreting what the olfactory organ presents it, and it appears that mine has always been a bit ‘damaged’ in some way.

The smell of food; bacon frying, pizza, roast chicken, fresh strawberries or whatever our personal favourites are all have an effect on our brain when we smell them. You smell something wonderful like freshly baked bread and coffee and your brain processes that with perhaps memories, ideas and hunger. You can imagine the taste, the satiated feelings of being fed, but for me smells of food did not appear to trigger anything, especially not hunger. I can honestly say that from a very young age I have never felt hungry. Food was not something I enjoyed, eating was something that you had to do each day. I remember as a child never wanting to eat, crying as I sat at the large square dark oak dining table with thick barley twist legs that I loved polishing as I sat underneath. I was not allowed to get down unless I ate something and so I sat seemingly alone for hours, crying not wanting to eat the black cabbage that had been cooked in the pressure cooker for 20 minutes until it was bitter. As a baby I would not eat and no-one knew why; this I was told by my mother who said it accusingly as if I was wilfully starving myself to make her life a misery.

So now I read about Alzheimer’s and how it affects the brain, I read about different symptoms that show a cognitive decline consistent with the disease. It is hard not to try and fit your own ‘disabilities’ into the pattern that combines towards early Alzheimer’s and as I look back at these anomalies and hear other people living with dementia talk about when they first noticed these ‘symptoms’ as they have got older, I am transported back to childhood to a time when my mother was hitting me round the head with daily regularity (a clip round the ear is often spoken of in jest nowadays).

One of the first things I noticed when I started to take Rivastigmene as prescribed for me for my Alzheimer’s, was how my sense of smell appeared to be awakened. I could walk past cafe and the smell of food made me feel ‘hungry’. Now Iunderstood what others experience with the aroma of food, however eating the food does not stop the ‘hungry’ experience so that I am not satiated when I eat. What I now experience is the smell of food triggering a notion of enjoyment of eating, and a connection between enjoying the 102493883 smell and the taste.

All I need now is another trigger to let me know that my desire for the taste of something has been satisfied after a few mouthfuls!

It seems the more we learn the less we know……

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.

There is a matching one on the other foot – ouch!

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.

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.

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.

P1080064 — 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.