Tuesday, 21 August 2018

A Daughter's Diary - Alzheimer's Through my Eyes

Written by my sister Jacquie Williams

TWO WORLDS......ONE DAY
Mum's day.
The rain is streaming down the window pane and it's so cold and dark in here. I'm frightened now. I wish Mum would hurry up and come back. I don't want to be here holding little Peter any longer, he looks a strange colour and is so still and quiet. I'm worried that he won't wake up.
I look at the clock and can't quite make out the time but I know I've been waiting for ages. Mum should surely have managed to find Mrs Barber, our neighbour, by now.
I decide to go and look for her, she must be just around the corner, she can't be far. I wrap my little brother Peter in his shawl and open the door into the dark night....
The warm air hits me as I make my way down the lane and I can feel myself beginning to sweat and panic as the planes roar overhead in the summer sky.....that's funny I thought it was night time. Are they our planes up there, or the Gerries?
As I reach the end of the lane I come to a crossroads. I don't remember this junction. Maybe I've come the wrong way. I turn back and retrace my steps but things are starting to look different now as the sun begins to go down and the shadows grow long and strangely menacing.
I look down at Peter. He is quiet, not moving. I hold him closer hoping to make him feel safe and warm.
I walk further along the lane and find the turning I've been looking for, hurrying along amongst a noisy crowd who are making their way to the nearest shelter. A loud explosion makes me jump and I catch my breath as the air raid sirens scream through the town. Overhead the searchlights scan the night sky and planes rumble past dropping their spiteful loads on the buildings below. The sky turns fiery red and ash floats down and lands in my hair. I find it hard to breathe and start to cough as I frantically search the faces for my mother's familiar smile.
People are rushing past me, laughing and jeering....why are they laughing? My mother is lost and we need a doctor for Peter.
" Have you seen my mum?" I ask. They shake their heads and hurry on their way. I can feel the panic rising in my throat and tears begin to prick my eyes. " Please, have you seen my mum?"
Nobody seems to notice how serious this is. Mum is missing and Peter is getting colder.
"Please, somebody help me, I need to find my mum"
I carry on asking but everyone is in such a rush trying to escape the bombing. What am I to do?
Time stands still and I feel like a statue stuck in the middle of a mad merry-go-round of lights and sounds.
I hold Peter closer and sing to him softly as the noise and confusion surrounds us, sending my head into a whirl.
"Are you alright, love?"
I open my eyes to see a kindly face, not my mum's, but a kindly face all the same.
"Have you seen my mum?" I ask. The lady looks puzzled.
"I've lost my mum, have you seen her?" I ask again, feeling relieved that at last someone is going to help me. Another lady turns up and they tell me that they know where I live and my mum is probably back home by now.
As we make our way through the lanes I start to feel a bit better although the night feels cold and scary. The raid has stopped and most people have gone home leaving the streets quiet and empty as I walk along with these ladies. I hope they know where we're going and I really hope my mum is home. I don't know what I'm going to do if she's not, and what about poor Peter? I look down at him. He looks asleep.
Eventually we come to a little house but I don't think it's ours. I try to tell the ladies that this isn't the right place but they say that my mum is on her way and will soon be here. Another lady turns up and opens the door, I think I know her.
As we go in I can see that this isn't my house. Everything is different and in the wrong place but I sit down with Peter and just hope that mum turns up soon and we can go home. One of the ladies makes some tea and I can hear them whispering together in the kitchen. What is going on? I wish mum would hurry up.
Then the door opens and someone comes in. I know her, but is it mum? She comes over after briefly talking to the ladies and holds my hand. "What were you doing, going out so late, mum?" she says.
Why is she calling me Mum? I think she's got mixed up. I look into her face and I realise that she is my sister Margaret. I'm so relieved that she's here.
"I was looking for mum, Margaret, have you seen her?"
"Let's get settled. She'll be back soon. It'll be alright now, Mum. Come on, let's get you back into bed." Why does she keep calling me Mum?
The other ladies all go and mum makes me another cup of tea. When did mum turn up?
It's all very strange but I feel better now that she's here. The house feels warm and cosy and baby Peter looks so much better. He's moving gently and his little face is soft and pink. I still hold on to him though, just incase.
As I look around the room I can see my daughter and son-in-law talking in low voices. They look so worried. I wonder what's going on.
"What are you doing here?" I ask. They both look at me with such surprise that I have to laugh out loud. Then I remember that I was going to show her my new shoes, so I go to the bedroom to get them After a rummage around in the cupboards I find the shoes and show them to my daughter.
"I'm glad you're here, do you like my new shoes?"
She says she does then helps me get undressed and into bed. I don't know why she thinks she has to help me, I'm not a child, you know! And I tell her so. She's treating me like I don't know what I'm doing!
When I'm all tucked up in bed, with Peter sleeping peacefully beside me, mum sits on the bed and we chat for a while. How come mum is here again? It's all so confusing, with these people coming and going!
I'm starting to feel drowsy now, safe and cosy in my bed. And mum's back home again, so everything is alright now. I snuggle down and drift off to sleep.
My day.
We had a nice day today. Mum and I went into town as usual and looked around the local shops which she likes to do every day. We bought Mum a new pair of shoes, as her favourite pair are so worn down now and it's been a struggle to get her to change them. So today was a little victory.
I make mum something to eat and a cup of tea and we chat happily for a while before I leave her watching TV for the evening, as usual.
I'm awoken by the sound of the phone ringing. It's my sister telling me that there's been a problem. Mum's been found walking around the town in a confused state. It's 1.30am.
We hurriedly get dressed and jump into the car, making the familiar 10 minute drive along to Mum's, where we find her sitting on the sofa with my sister and a couple of her neighbours. Mum looks bewildered and anxious, and is holding her baby doll tightly.
It seems that she was wandering along the high street as the pubs and clubs were kicking out and fortunately one of the passers-by recognised her as their mum's neighbour. My sister and I had left our phone numbers with the neighbour so they were able to get hold of my sister straight away as she lived close by.
I go over to Mum and hold her hand, talking gently to her as she stares into my face. She frowns and seems to be trying to work out who I am. Poor Mum, she looks so frail and almost childlike.
She holds her doll more tightly in her arms then says "I was looking for Mum, Margaret, have you seen her?" She thinks I'm her sister Margaret, which happens more and more these days.
I try to distract her as she seems to be getting agitated and has a worried look on her face. I make us some more tea as the others all leave, and try to calm things down a bit, bring things back to some form of normality.
Bri and I try to work out what we're going to do now. Things can't keep going on like this. Mum's not safe any more. And we are all living on a knife edge wondering what's going to happen next. So far, we've been coping, well I say coping.....we've been trying our best, but now this really has stepped things up a level. We are all stressed out with worry, especially Mum, who seems to be living in a parallel world more and more now, and is continually anxious and agitated.
"What are you doing here?" Mum pipes up out of the blue. Bri and I look at each other in surprise, then at Mum who seems almost back to 'normal' again. She bursts out laughing at our faces then scuttles off into her bedroom and starts rummaging about in her wardrobe, coming back with the pair of old shoes which we tried to replace earlier in the day.
"I'm glad you're here, do you like my new shoes?"
I say I do, as I help her get undressed and back into bed. She's not happy about it at all, telling me to mind my own business and stop treating her like a baby. I try to stay calm and repeat over and over again that it's late at night and she really should be trying to get to sleep now.
After a while of chatting and soothing, with me sitting next to her on the bed and Mum's doll tucked in beside her, she eventually drifts off to sleep.
We stay until the day begins to dawn, then go home for a few hours before coming back again to start another day. It's the day that we begin to look for a calm and caring new home for Mum......a home where she can happily and safely live out the next chapters in her changing life.
The first story depicts what may have been going through Mum's mind on that night. I don't know for sure but I think it gives a fair idea of the terrible confusion and anxiety that she must have been feeling. From the odd bits of information that I could glean from her I pieced together a parallel world where everything would have felt very real to her but seemed worryingly odd to us.

Tuesday, 27 February 2018

New Blogging Goal

Just found this blog and apart from the news about my new grandson I haven't blogged here in months.

So I plan to post weekly with my life updates.

The latest is that I now have a new washing machine that is virtually noise free and doesn't try to escape from the flat during the fast spin.


Monday, 26 February 2018

I'm a Grandma again

Robert Laurence Steven has arrived to join his big sister, Scarlett.




Wednesday, 11 October 2017

Reflection

I am so far unconvinced that the story of my life has that much potential to be entertaining but it might be informative…hopefully both.
I always felt that writing my memoirs was an idea that was pretty indulgent and I was uncertain that many people would be that interested in reading about little old me. But looking back on my life I find that much of what I have done could be helpful to people who may be going through the same things that I have done, only they would be reading it now…if that makes sense.
During my life I have experienced several kinds of schooling and growing up in a services family (dad and both brothers served in the navy). I have had experience of being a parent and carer to two young people, and then adults with special needs, have gone through a divorce, have experienced long term disability and have been a cult member.
I have worked as a ‘listening ear’ for various groups and have been told I am a good listener generally. I like to think that the people I have helped short term will remember what they learned long term and were able to move on. It’s hard to know how I have helped people long term as only a handful of people have got back to me out of the thousands that initially have had contact with.

Friday, 14 July 2017

Feeding Swans, Ducks and Geese - the right way

Feeding Swans, Ducks and Geese - the right way

Please note that their natural diet is best for them and that filling them up with food that is not part of their natural diet should be avoided, as it will prevent them from getting the nutrition they need as well as being potentially harmful.

However, when winter conditions set in and little food is available - our help in providing food is likely to be very appreciated and may be even life-saving.

What NOT to feed:

Anything that is NOT healthy for us: sugary, starchy, fatty foods, junk food, fast food.

Bread, chips, cakes, cookies, and cereal, etc - as these foods can cause digestive and serious other health problem.

Cooked and processed foods.

What to feed:

Note: Any food fed to them should be in manageable size for swallowing. Foods should be as natural as possible, unprocessed without harmful additives.

Particularly in the winter months when grasses or other plant vegetation is scarce, greens such as dark green lettuce, spinach, chopped/shredded carrots, celery and alfalfa sprouts and other vegetables and greens make a great supplement. Note that lettuce may be an acquired taste and the swans may take a while to get used to it. Any vegetables need to be cut up into small pieces. Remember, birds don't have teeth!

Other foods to feed: Healthy popcorn (without artificial coloring and flavorings); corn / cracked corn; whole wheat GRAIN (not processed, not bread - natural state grain); whole oats; brown rice, lentils, split peas and smallish seeds

Equally loved and cherished are peelings from our own food preparations for dinner, such as broccoli, potatoes, green beans, cabbage -- gently steamed (only enough to warm up - NEVER cook and NEVER use the microwave to warm up) and feed warm (not hot) to swans who will especially appreciate that when it's cold outside

Sunday, 25 June 2017

It's Getting Scary Now



Just got the news that I can't get on the heart transplant list until my BMI is below 30 and I just checked and mine is over 34.
To be in the healthy range I need to be around 25 which is around 12st for my height...so still have more than 4 stone to lose.
Pottered around in the garden for a bit today but am wiped out now so am resting up for a day or two
I like to plan ahead and consider all options. The state of play right now is I have only just started on the first of several steps I need to take before I get on the list. 
I am planning to keep losing weight while I work through all the medical stuff then hopefully things will come together

Friday, 16 June 2017

Alzheimer's.....A daughter's view. by Jaquie Williams

Alzheimer's.....A daughter's view.
(Written by my awesome big sister)
Hi all. It's been a while since I've posted about how mums doing ....and she's doing ok.
I didn't feel that I could really post anything for a few months as family and friends have lost loved ones recently and it just didn't seem like the right thing to do somehow.
But as the Alzheimer's Society are raising awareness again, this week, I thought I'd let you know how mum is and how we're learning to live with things.
When we went to see mum this week she was asleep at first but soon woke up when we opened up the Cadbury' fingers! We had a bit of a sing song, as usual, and I told her all the news. I never know if she takes it in but I tell her anyway just in case. At one point mum reached across and tucked a strand of my hair behind my ear and said 'that's better'. I could have cried. These personal, tender moments are so rare these days. They are so precious and mean the world to me now. I just wish I could remember, clearly, how she used to talk to me and how we laughed together before Alzheimer's started to steal her away.
This afternoon one of mums carers came and sat with us too while we chatted together. We talked about mums life before she was so ill, the places where she'd worked and the countries around the world that she'd visited, always including mum in the conversation, trying to jog her memory in some way. Mum's carer said 'such a strong woman' and I agreed, saying that mum has always been strong and determined and never lets things get her down. Even now she still has a smile on her face and whistles a happy tune, making the best of the situation she's in.
As the carer got up to leave she turned and with a smile on her face, she said' yes your mum is a strong woman, but I was really talking about you'.
Well, I can only say, as I'm sure those of you who've been on the front line of dementia will agree, we certainly don't feel that strong at times. I've had my fair share of wobbles and meltdowns, believe you me, usually when least expected, as my closest friends can tell you. The emotional torture of seeing a loved one slowly fade away before your very eyes is heartbreaking and so cruel. It's enough to make the toughest person weep, and I've certainly done that on many occasions, and I still get that lump in my throat and tear in my eye when I see mum shuffling along in her odd slippers, a fragile shadow of her former vibrant self, or when she tells me to 'go away' in her colourful way, glaring at me angrily, wondering who the hell I am. Every week, when we visit, I wake up with those anxious butterflies in my stomach and that tightness in my chest, nervous about how mums going to be that day.
But things are becoming calmer. Familiarity with the situation means it becomes a way of life. And acceptance is a wonderful thing.
In those years when mums illness was really taking its toll on mum and us, when we couldn't really understand what was happening, and when she first moved into the care home, the feelings of desperation, frustration, anger, resentment and stress were overwhelming, and I would beat myself up everyday for feeling that way. I now know, through talking to others in the same situation and reading comments on dementia carers forums, that most people feel this way and it's understandable under the circumstances. But the guilt, the sadness and the helplessness were the worst. I kept thinking that I should be able to fix this....but of course nobody can fix it. You just do what you can.
Even though it's hard, and the responsibility weighs heavily on my shoulders at times, I'm glad that I'm the one...... With my husband at my side sharing the load and with my sister's invaluable, emotional support....I'm glad that I'm the one to be mums primary carer and advocate. I was always going to be the one....just because I was here and because I was the best one for the job. I'm not a strong person, I'm a bag of nerves most of the time but I now realise that I'm stronger than I thought I ever could be.....and I'm proud of what I've done, so far, for my lovely mum, and I know that mum would be proud of me too, if only she knew.....
Please feel free to share this if you think it will help others in a similar situation.....there's a lot of us out there. Stay strong. X