Tag Archives: dementia

To sleep, perchance to dream

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I don’t think I have ever been this tired. I just want to sleep. I am having fantasies of just lying down where I am and drifting off. At work I imagine going into one of the therapy rooms, curling up on the sofa and dozing. My body feels like I am wading through a thick gloopy fog that weighs down on my limbs. I slept well last night. Or so I thought. I was in bed by 9.30pm and didnt wake up until I really had to get up this morning at 7.40am. All I wanted to do was get back under the covers and sleep.

I talked myself into showering, getting dressed and breakfasted and going to work. Even with make up on today people keep noticing Im tired. i think the yawning is giving it away. I went for a walk at lunchtime, some fresh air, a trip to the post office. Ate my lunch. Still I just want to sleep. All I can think of is getting home and going to bed.

I think it is grief. I didnt know it could make you so tired. Maybe it is the bodies way of protecting us. Sleep is such a healing thing. And losing someone you love is a shock, however it happens. I know at first it was shock that i felt. like a hit to the brain a flood of chemicals that numbed me out and carried me along on a tide where I was functioning somewhere in a sort of out of body way. Sometimes I have to get angry before i can cry. i think that is happening now. And yesterday I had another shock. A while ago I wrote a blog about exploitation and old age, with particular reference to a situation we had found ourselves in. Yesterday remnants of that situation resurfaced. I had to speak to the lawyer. It will be resolved but it was a shock. People can be truly wicked. I havent experienced that quite so directly before, but now I know it.  When i got home I got angry and then I cried. It feels so abusive, so intrusive to have to deal with this now. So the tiredness makes sense i suppose. In the middle of grieving it is hard to know what you are dealing with. Emotions are raw and energy is low.

I hope other people learn from this. If ypou have aging relatives or people you love who are vulnerable, take care. Sometimes that ‘friend’ who has suddenly appeared and seems to be spending a lot of time being helpful is actually ‘grooming ‘ them for abuse and exploitation. They cause rifts between families, prey on the fears and worries of the old, scared or lonely and are psychopathic in their lack of emapthy and calculated self-seeking. I have had nothing but love and support and tenderness from almost everyone and neither did mum. But one bad apple can create a lot of poison if you let it.

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Mum, a Panda and Puppets

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The panda is a symbol of the WWF ( World Wildlife Federation.    

The giant panda is the rarest member of the bear family and among the world’s most threatened animals.


Location: Southwest China – to the east of the Tibetan plateau

Habitat: Temperate Broadleaf and Mixed Forests

image WWF

Wild population: Less than 1,600 mature in the wild

Mum and Dad took on a whole new project when they retired in the 70’s. It combined Mums love of education, creativity and children with dads passion for engineering, DIY and travel. They became travelling puppeteers and called themselves the Puppet People. Their mission was to share ideas about saving the planet and conservation with young people all over the world. Over the years they made many friends and travelled to far off places from Russia to Assisi, the school next door to the Highlands of Scotland.

I have to say it sort of drove me mad at the time! Luckily by this point I had left home and was living my own life nevertheless turning up to shows periodically became a strange sort of family torture much like the slide shows of earlier childhood!

In clearing Mums house we have sorted boxes and boxes of puppet related ‘stuff’. Some, including many puppets,has gone to the museum in Glasgow run by one of their closest friends John Blundall ( the maker of Parker from Thunderbirds!) Take a look at this here I have a pile of puppetry books put aside for a friend who is just starting out with his own puppetry / performance career and some the boys have kept as memories.

This week Mum has been up and down, sometimes clear sometimes not. We were chatting about my bracelet that she and Mrs T got me for my birthday. It is a Lovelinks one where you can attach charms and glass beads and I love it. I wanted to get something from Mum as a sort of special Mum reminder. Daft I know. Its not like I really need that but it had sort of got into my head and I loved the idea. So we talked about the different beads and I mentioned one I liked was the panda and baby one. I said it reminded me of the WWf and she got it straight away, “O that’s about who we were” she said. I like another one too with “mum” on one side and “I love you” on the other it goes both ways. Anyway my panda arrived yesterday and is on my bracelet. it will always mean something special that we both knew what it was about.

 

 

Taking care of Mum – another step on the journey

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Mum had a small stroke today. Another TIA. Amazing how proficient we become at terminology, TIA’s, UTI’s, pressure sores, not mobilising, difficulty transferring. The language of nurses of care of old age and medicalisation. But I am very grateful for the care she has. Today it has meant than rather than have to go into hospital where, undoubtably on grim past experiences, she would become dehydrated overnight swiftly followed by infection and psychosis, she has stayed at home in her own room.

I was at work when I got the call to tell me that the paramedics had been out to see her. At first I was calm, logically there was nothing I could do right then. She was well cared for and sleepy/ half conscious. I would finish my afternoon at work then go to see her. 45 minutes later my head was in the shed and I had a little fall apart. That’s pretty good for me. Sometimes my delayed reaction response spans a day or two, even longer. So my fabulous colleagues packed me up and sent me off to deal with the important stuff in my life whilst they dealt with the important stuff in the lives of people I couldn’t deal with today. As the missus said tonight, ‘That’s why we work in teams!”

I collected son 2 for some emotional support for me and we went to see Mum/Nana. She has been pretty sleep all afternoon but opened her eyes wide when I said ‘J” is here and looked up ( and up as he is 6ft 7ins and smiled. She has gone off her food the last couple of days, its like she forgets to eat or how to do it and she isn’t drinking enough either. And she has the beginnings of some pressure sores because she has just gone off her feet completely. So we have a new care plan. She has a new pressure mattress, staff will help her to feed and drink and they will treat her sore places. The district Nurse is on the case, the Dr has given us antibiotics for a urine infection and we will see how we get on.

I helped to sit her up so she could have a drink, she was burning up despite a fan blowing and the window open to let any air in. Whilst I went to get her prescription from the pharmacy mum had a cooling bed bath, a cool silky nightie on and decided that although she couldn’t manage a sandwich she could swallow a couple of mouthfuls of ice cream. I sort of know how she feels. I sat waiting for the medicine drinking an iced latte and eating dates ( 9 ww points, noy a great sugar-free choice and a completely emotional eating decision. Oy!)

On a positive note Mum knew who we were as always, responded when I talked to her and said she felt “perfect” when I asked if she was feeling alright. I am so glad she is where she is, I know she is with people who will provide good care, who have got to know her well over the last year and to know us as a family too. She has all her nice pictures and photos on the walls and she smiled at a new bunch of pink and white flowers when I held them under her nose.  I sat for a while after J had gone. I drank tea as she slept. She felt cool to the tough but in a good way and her colour was better. Sometimes her breathing was so quiet I couldn’t hear it. It reminded me of when the children were newborns and you wait for the next breath. One day, maybe sooner than we think, it will not come. When she was sound asleep I said goodbye and I love you and see you soon.

It is just another stage isn’t it? Lifes’ journey has one destination. Tonight I went for a walk with the dog by myself. We walked across the fields as the sun was getting low and the sky was turning pink at the edges. It was a perfect summers evening with a slight cooling breeze. I looked up at the sky and felt comforted by the vastness and beauty of it, so peaceful.   

Mums’ world

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Mums’ world is getting smaller. Where once an afternoon of sitting at a pavement cafe, ice cream in hand, and watching the world go by would have been heaven now it is all about the ice cream. She had a little tub of chocolate and Welsh cake ( yes Welsh cake!) flavour with a little plastic green spoon. After a minute or two she said rather plaintively ” I’m not getting any”. I realised she was using the spoon as a straw. It has elements of tragi-comedy this relentless journey towards the ending of this life. Even in this week I’ve seen a change in her. I have to remind her of the boys names and which is which on the photo we gave her today from her birthday tea on Monday. She didn’t remember which room was hers when we got home. She seems to be diminishing. Each time I see her I wonder how long we have. Silly to think ike that maybe but it is there at the back of my mind all the time. I don’t want her to go, but I hope she can before the dementia takes her away.

She must have been having a conversation with someone else at the home about age and birthdays, a favourite topic! She said

” I was talking to someone else and they are 87″,

I said, “That’s like you Mum, you’re 87 now aren’t you?”.

“How can that be?” she says, “How can we be the same? I don’t feel like they are my brothers or sisters”

. She didn’t understand that being born in the same year meant being the same age. Sometimes the cognitive dips and signs of another spark in her brain that has fizzled out take me aback and I find it hard to speak for a moment.

At her party we had a lounge room to ourselves with party food laid out on a table and flowers and a big birthday balloon. Another lady , who had just moved in and was also quite confused kept wandering by and knocking at the window. We invited her in of course and she sat drinking juice and eating a sandwich. ”

Is it someones birthday?”,

Yes its Margaret’s, Margaret this is Phyllis”,

“How old is she?”,

“Margaret is 87″,

” Oh not as old as me then”,

‘How old are you?”,

” I was born in 1921″,

“That makes you 90 this year then,”

“Does it?”.

Pause.

” Is it someones birthday?”,

“Yes its Margaret’s, Margaret this is Phyllis”

…….repeat ad infinitum.

You have to laugh as they say, or you’d cry.

Happy Birthday Mum

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In 1924:

In politics Lenin died and Ramsay MacDonald became the first Labour Prime Minister and Edgar Hoover became head of the FBI

Rhapsody in Blue by George Gershwin was first performed in New York

Metro Goldwyn Mayer (MGM) is founded in LA

The summer Olympics take place in Paris and Johnny Weissmuller wins 3 gold medals

Other people born this year are Doris Day, Marlon Brando, Josephine Pullein-Thompson, Henry Mancini, Clement Freud, Tony Hancock, Charles Aznavour, Lauren Bacall, Rosamunde Pilcher, Truman Capote, Jimmy Carter, William Russell, and Margaret Ashcroft ( my Mum)

Deaths in this year : Lenin, Woodrow Wilson, E. Nesbit, Franz Kafka, Mallory and Irvine ( lost on Everest), Frances Hodgson Burnett, Giacomo Puccini,

Mum shares her birthday with Nelson Mandela ( 93),  Richard Branson (61) Martha Reeves (70), John Glenn (90)

Today 18th July 2011 Margaret Richardson ( nee Ashcroft) is 87. We celebrated in style at her home with sandwiches and crisps and birthday cake. Sparkling water and some sparkling cava were enjoyed. Her friend George came and visitors popped in and out.  And we all sang Happy Birthday whilst Geordie ( the dog) had another sausage. Here she is with her grandsons, girlfriend and the dog.

 

Nanas’ summer fair

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angelabettess.com.au

Just when you think that your days of summer fairs, cake stalls and tombolas are over another one comes along. Having spent the last twenty-something years at school events I confess to a little sigh of relief to say goodbye to the PTA and the wanton spending at each stall to ensure goodwill or sponsor the next football team jerseys.
But now we have moved on to summer fairs for seniors. The bottle stall was particularly well attended at £1 for 5 goes. More than one elderly gentleman was observed chuckling down the corridor, zimmer frame in one hand and Liebfraumilch in the other.
Mum was particularly keen on the cake stall where a slice of gateau and a milky coffee were soon obtained and enjoyed. After a slow zimmer amble round the other stalls we were told she had had emough, “I want to go back to my room, what shall I do, I don’t have wheels on?”.
We tucked her back up in her chair and left her to sleep and contemplate her new shoes (last weeks crocs) which are a big hit.

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Mums new shoes

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Mum likes to go out in her slippers. This has been the case for a few months now. She has two identical pairs of maroon wrap-around old lady slippers. They are the sort she would have hated back in the day. Now she loves them.
She has had circulation issues and skin problems so her feet have been swollen and her legs bandaged. Now her skin is clear and she wears compression stockings. Mum always prided herself on ‘having good legs and slum ankles’. Not being related genetically means I have legs like my half sisters, chunky strong legs. I always used to feel cross when Mum would refer to her slim legs in contrast to my solid ones!

So day in and out the slippers are on. And they get trodden down at the back and need replacing.
Appearances have always mattered to Mum. There are two sides to that. But the good side is that it is intrinsic to her to care how she looks. So we have ‘sets’ of clothes. Edinburgh Woolen Mill shop does very well out of our weekend expeditions. They make nice pull on, elastic waist cotton trousers. She has denim look, cream, and khaki as well as winter weight ones. Their blouses and tops are colour coordinated to go with the trousers (clever eh?)

So, to get back to the slippers. We ambled ie mum queenly in wheelchair, past a discount ‘crocs’ shop. Now anyone whose ever worn them knows they are comfy like slippers, never wear out and don’t slip. Plus they come in a series of eye opening shades. Mum went for bright pink, orange it turquoise. Turquoise won.

So mum is now the proud owner if a pair if crocs. She wore them straight away like all the best purchases. There’s us no time to ‘save it for best’ like there used to be.

Mums new shoes will be worn with everything. Letting go of elegance for child like joy. Not a bad exchange.

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Sunny Summer Sunday

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Sunday being a day of rest we took the day off from house clearing. So nice to have a break from lifting and sorting. I had a lie in till nearly eleven o’clock when I realised I’d better make with the ‘Im leaping out of bed right NOW’ look. At 11 on the dot a nice aging rocker man arrived on the doorstep, money clutched into a sticky roll in his hand and went away grinning carrying son 3’s old drum pedal as sold on eBay. Son 3 wasn’t actually in so I dealt with that.

It has been a glorious English summer day. The sort people imagine we have when they don’t think its raining. The summer days we fantasise about from foreign shores or when we are old and all the summers were like this. That meant taking Mum out was a production. We took the dog too so of course he has his own bag with water and bowl and dog biscuits. Mum has a jacket and sun hat and a blanket in case she gets cold, tissues and wipes and a spare pad just in case. I’ve learnt to be prepared. The windows in the car went up and down depending on animal and people’s tolerance of hot/cold/draught. To a different garden centre today, one where we could sit and have lunch outside. Lovely salmon salads with new potatoes and a lemon and dill dressing ( 2 between 3 of us was plenty). We had some confusion over what Mum wanted. Todays phrases were ‘I don’t know what to do” and ‘What do I do now?’. She seemed confused and as if she doesn’t know whether she is thirsty, wants the toilet or which bit is uncomfortable. So we do a lot of guessing games until we get it right. Sometimes its very frustrating for all of us. Some days I feel my patience stretch thin like a piece of clingfilm. The heat doesn’t help. Ice cream did. Funny that.

When we got back I felt mean for making her walk down the corridor to her room. She was tired and wanted to go in her wheelchair, but I knew she could do it and its so important to keep her on her feet and her circulation going that a little walk after an afternoon in the wheelchair is important. Anyway she forgot I was mean by the time we were back at her room and we settled her with cool water and her feet up in her chair for a nap.

So back to the house to nod off gently to ‘Morse’ on the TV whilst waiting for a Freecycler to collect an old white wardrobe. And now we are going to go out for tea and sit in a pub garden whilst the sun shines and the summer is here for today.

Poppies and lavender and goodbyes

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Mum seemed different today. A little more confused and she kept saying “I feel lost”. As always she was happy to see us and liked the idea of going out. Getting her to walk and get in and out of the car was a little harder. Sometimes its like she forgets what she’s supposed to do with her legs or how to move. Another loss from dementia. Her memory was poor today too. Often that means she’s had a bad night, but that wasn’t the case today.

Over lunch at the garden centre she was confused about how to eat. We have realised that a whole portion is far too much so today we had 2 dinners and an extra plate between the three of us. T shared a piece of salmon, some chips and a few peas, a carrot slice and a spoonful of cabbage with Mum. We provide a selection of cutlery. Knife and fork, dessert spoon, teaspoons and lots of paper napkins. 2 cups for her coffee, because a full one is too heavy to hold. She likes a cappuccino, I think mostly for the froth and the chocolate sprinkling on top. Today she said, ” I’d just like someone to feed me”. This was new. It took both T and I aback a little, though I don’t think we show it. She put her hand on my knee as I helped feed Mum with a teaspoon. Another step on this journey of endings.

Later we took Mum for a drive. Endings are hard for her, and sometimes its hard for us to manage. She doesn’t like goodbyes. We stopped at the park by the lake where we could sit in the car and watch the geese and ducks and a solitary swan. mum liked seeing the small children running and playing on the path in front of us. A young mum went by with a baby in a buggy, ” Oh its a long time since we were doing that isn’t it?” she said wistfully.

I took a risk and asked mum if she remembered the hall stand she used to have in the hall. instantly she remembered it. I asked her where it had come from. “My Grandmother”, she said and ‘Have you got it now?. I told her I would put it in our hall and that made her happy. Sometimes those long-term memories are fresh as daisies. We bought a glass vase with some  paper poppies in. They reminded Mum of the house she used to live in with my Dad before they moved near to us. The house was next to a field and along the boundary between their house and the field they grew blowsy red poppies interspersed with huge, falling over plants of lavender.

Every day like this I wonder if this means the end is coming. I think she wonders that too.

 

Writing for life

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Dear Blog,

I have no idea what makes people like what I write some days and not so much others. I suppose, like everything, there are multiple reasons but it certainly makes me curious. I find my best writing is usually those days when I have an idea and it ends up being quite ‘stream of consciousness’ stuff. Maybe that vibe comes through. Having “site stats” from WordPress means that I can see how many people visited my blog each day and today was my best day so far. And that was before i posted.

Of course being in the UK means that we are on a different timescale to a lot of bloggers/potential readers out there so sometimes that means people catch up on me the next day.

The things I like writing about most are: the journey with my mum through old age and towards what will come, the process and feelings around getting fit and losing weight and the recovery from depression and illness and the sort of daily ‘in my head’ meanderings that reflect on life and living it. Writing about mum is therapeutic for me, allows me to share some of the joy, sorrow and laughter in this part of our lifetime contract with each other. I hope to write about her always with respect. But the events and experiences we are living may shine a little light somewhere for someone else going through or thinking about dementia and care and these changes. That matters.

I don’t write too much about the other most important people in my life, my 4 nearly all grown up kids and my missus. I reckon everyone deserves their privacy and apart from the occasional reference or moment of pride that I just have to shout about I don’t think any of then would thank me for blogging about them. Or putting their photos up. The dog is a different matter, I reckon he’s fair game. And everyone likes a dog story, right?

I started this daily blogging in March, so I am now nearly 4 months in. From being a little girl I have loved words. I loved to read and remember writing stories as soon as I could write. Through primary and high schools I wrote. Teenage poetry, wordy and angst-ridden Im sure. I always imagined I would go on and study English and then maybe have a career in writing or journalism. And then I got sidetracked into Sociology. I loved it. It transformed me and filled me with another sort of passion. And I don’t regret for a moment where it has taken me. But along the way, apart from brief periods of conscious creativity the writing got lost along the way. And I forgot. Writing became about reports and essays. Emails and Facebook. Until now. This year is about recovery. I have a journal that I started last October. I wrote on the inside cover “The Journey Back”. I meant back to health, back to sugar-free living, back to life. And writing has become a part of that. Making a daily committment to be here, to just show up and get those words on paper. To share what I think and who I am. And I love it.

The thinking, the processing, the way the words race and tumble over each other to come out on the screen.Googling, researching and taking photos to fit. The weekly photo challenge adds another dimension of fun and spark of creativity with the visual image. I rediscover why I love playing with colour and seeing the world through a lens can be illuminating.

Showing up every day isn’t easy but I can’t bear to miss a day. I have a dream to write every day for a year. I am honing my muscles here. I want to do more. I want to write. I want to write a book, see those words on paper. Whew! I am sticking my neck out and stating my claim on the Universe. I am going to put in the work. Watch this space.

Love Julia