Sunday, 12 October 2014

The Lion Sleeps Tonight!

I've been the first to say how stressful life currently is and that will be ongoing for the foreseeable future but there has been one mammoth turn about over the last two weeks at home and that is Katie's bedtime.

You will remember I lamented in my blog post A Stakeout and some Bad News about the lack of sleep my little one has been getting due to her refusal to go to bed. Tales of tantrums and aggression; of bedding and punches thrown at me; of an inability to regulate her emotions due to her extreme fatigue. All because she didn't want to go to bed. From March until September 2014 Katie rarely slept before 10-11pm each night. We shouted, we argued, we bribed, we ignored, we instigated consequences, we despaired, I cried. All to no avail.

But there is indeed news to report. And good news it is. My most recent campaign has finally born fruit and once more Katie sleeps.... *humming The Lion Sleeps Tonight with a little dance and a huge smile on my face*

I tell you, with everything that is currently going on this is like winning the lottery because the knock on effects of Katie sleeping are wonderful. A huge reduction in tantrums and quicker regulation of extreme emotions are the two biggest outcomes plus my loving little girl is making a slow comeback. She holds my hand and wants hugs again. I need those things, especially at the moment.

So how did this turnabout come about you might be asking?

Well it's all about the hook really isn't it? What does Katie want more than to get out of bed repeatedly every night? What is so important to her that it will over-ride her need to take no notice of my pleas to stay in her bed?

It was a T-shirt!

Yes you did hear me correctly. It was a T-Shirt. 

Not just any T-Shirt of course. This is a special one. This is one for her after school Musical Theatre Club. It is pink and, if that wasn't motivation enough, it will have her name inscribed on the back. 

Oh boy did she want that T-Shirt!

Oh boy did I want her to stay in bed!

So I told her she could have the pink T-Shirt with her name in the back if she could earn 7 consecutive tokens for going to bed and staying in bed. The rules were clear. She was not allowed out of bed after lights out. To help focus her attention I sat outside her bedroom door every night, on the floor, up until Pops died. She also had interim prizes of stickers for her Frozen sticker album which I posted into her post box each night. She can gain a maximum of four packets for amazing bedtime behaviour and this number diminishes depending on any minor or major silliness. We had two false starts where she got to Day 4 and floundered. We started again from Day 1 each time and on her third attempt she succeeded. 7 nights going to bed and staying in bed and going to sleep.

Interestingly, after Pops died it started to become untenable to sit outside her bedroom door because I had a funeral to plan and in between caring for Nana and rebuilding our house plus looking after the children I have very little time to do anything else so I needed to evenings to plan so one night I said to Katie that I was going downstairs to eat my dinner but I would come back up to her afterwards. I said she could read with her reading light on in the interim. When I returned, nearly an hour later she was asleep. It was 8.30pm! I almost fell over in shock! The next night I tried the same tactic. Same result. The next night the same thing happened again. Now I do this every night. We do stories and kisses and I leave her reading or completing her Key Stage 2 Phonics Book and every night she is asleep when I return. She falls asleep with her little battery operated clip-on Hello Kitty reading light still on. It clearly comforts her and enables her to feel safe. Who cares? It works! She sleeps! She's been asleep by 8.30pm for nearly 2 weeks now. The bags under her eyes are looking much smaller and she is starting to look much healthier again.  It is wonderful!

I tell you, if I were a dog, this is the best bone to be thrown! 6 months of bedtime hell and all it needed was a pink T-Shirt, some stickers and a night light.  I'm very proud of Katie for making the decision to participate as well and turn everything around. I couldn't have done this without her finally deciding that bed is an OK place to be.

Money well spent I say!

I'll leave you with this little gem..


Sunday, 5 October 2014

Waterbugs and Dragonflies

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.

"Look!" said one of the water bugs to another. "One of our colony is climbing up the lily stalk. Where do you think she is going?" 

Up, up, up it slowly went.  Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return.

"That's funny!" said one water bug to another.
"Wasn't she happy here?" asked a second.
"Where do you suppose she went?" wondered a third.

No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why."

"We promise", they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broken through the surface of the water and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings. The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. 

By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.

The dragonfly remembered the promise: "The next one of us who climbs up the lily stalk will come back and tell where he or she went and why." Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water.

"I can't return!" he said in dismay. "At least, I tried. But I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies too. Then they'll understand what has happened to me, and where I went."

And the dragonfly winged off happily into its wonderful new world of sun and air.......

From:"Waterbugs and Dragonflies : Explaining Death to Young Children" byDoris Stickney

I will be reading this at Pops' funeral and thought I would share it here for anyone who hasn't read it and wants a way of explaining death and the afterlife to either children or adults.

Saturday, 4 October 2014

Not Waving But Drowning.....

The world doesn't feel quite right if I don't write at least once a week. These last 17 days though since Pops died have gone by in a blur of emotions and stress and anxiety and guilt. One of the things I need more than anything is to sit down, on my own, and have a good cry. What worries me is the first time I might get to do that will be at the funeral.

I've never organised a funeral before. It's a really tough thing to do! And there is a lot to "do". Lots of decisions to make about things you just don't want to have to make decisions about and lots of second guessing what people might want and need at the service. I've had to choose flowers for everyone and try and make each arrangement personal to the giver, be it Nana or TCM or me and the children.  I'm disappointed by the lack of input from other immediate family members despite being asked to provide memories for the Eulogy. The tumbleweed has been very noticeable which makes me sad because there is much of Pop's life that will remain unacknowledged in the Eulogy. 

A funeral is definitely the strangest thing I've had to organise with some odd terminology that, if it were appropriate, I would want to giggle madly at. I can childishly barely contain myself at times when talking to our Funeral Director. He's a lovely man but he has that sort of calm and serious voice that people who work in areas of sensitivity have. I can do that voice when counselling so I hear it in other people. He also uses phrases that are designed not to offend but make me think of the Fast Show. He keeps referring to Pops as the "loved one" which I find amusing and slightly creepy in similar amounts.  There are decisions to be made about embalming and the curtains at the service. I think my need for humour is what is preventing me from falling apart though. It's definitely how I keep myself strong.

And I need to be strong at the moment. TCM needs to be able to rely on me but I am finding it hard to manage everything that is needed without dropping many of my marbles. I've organised the funeral pretty much single-handedly, other than chosing the music, which has been an emotional stress because I don't want anyone to feel I've taken over or to organise something that's not right for everyone. I've written before about Nana having Alzheimer's and Pops was her main carer so his passing leaves some big issues to resolve. Priorities such as care for Nana but also dealing with the fact that he left no Will and has therefore died intestate. Nana is unable to take over the financial responsibilities because she doesn't have the mental capacity so we will have to seek Power of Attorney. I have organised emergency Carers for Nana and a new care package is taking effect from Monday and have been trying to get over to her twice a day but it's proving impossible with Pip in tow. Nana's house isn't suitable for a crazy toddler and I have lots to organise when I get to her house as she's really unable to do much for herself. It's not fair on him to be strapped into the buggy sat in front of CBeebies all the time. I feel ridiculous amounts of guilt about Nana and her safety and I've had huge arguments with Social Services about this. 

Nana's Alzheimer's is progressing quite rapidly and her actions and behavior can be unpredictable. She understands her husband has died and is reacting appropriately with grief but her brain lacks the capacity to rationalise other things. She doesn't understand she has Alzheimer's and can't understand why the carers need to come in. She told me she is capable of "sorting herself out and can wash her face and hands and put her clothes on". Yes she can do that but feeding herself and putting the waste food in an appropriate place plus looking after the cats and the household affairs are beyond her now and she is unable to recognise that. She made a cup of tea by putting the tea bag in the kettle this week and we've just discovered her latest food hiding place...down the, now almost blocked, toilet.  She wants to stay at home long term and we'll help her do that for as long as possible but it's not really the right place for her. She's depressed and lonely and vulnerable, hence my guilt and worry. I totally understand her need to be in familiar surroundings and TCM and I worry a move could be permanently detrimental to her health but there's the safety issue to worry about and the progressiveness of her illness. Both routes lead to feelings of guilt and anxiety.  Nana doesn't want to attend the funeral which I understand.  How on earth can she go to an event where there are people she is supposed to know but is unable to remember?  How overwhelming at a time of grief might that be for her? She has been unable to participate in the arrangements although I did manage to help her think of some flowers for his arrangement.  I suspect I will have to write the card from her which makes me want to weep with overwhelming sadness.  How do I write what she would want to say if she were able?  Nana has no tangible memories of Pops other than the fact he was there and now he has died.  She was unable to remember how they met or what they used to do.  She has a few lingering memories of recent weeks probably but that's about it.  That is 48 years of his life unaccounted for other than TCM's memories, which is incredibly sad.  Those are her emotions and memories that have been eaten away by this horrible illness and even those few tangible memories will soon fade away possibly to the point when she doesn't remember him at all.  Can you imagine not remembering your husband, wife or partner or someone else you love?  I am unable to wrap my head around it all.

On top of all the funeral arrangements we are still full steam ahead with the house build. I joked that only I could speak to the Coroner on one phone call and then answer a call literally seconds later from the builders merchants about bricks. I'm trying to pop down to the house most days to check on the builders and progress but there are only so many hours in the day.

When at home Katie is obviously still her lovely challenging self and I have even less emotional and mental capacity to stay on top of it all although we appear to be having a modicum of success over bedtime....finally.  This is mostly because I've finally discovered something she really wants as an incentive. Katie wants a personalised t-shirt for her musical theatre after school club, as sold by her dance teacher. I've said I will buy it if, and only if, she gets 7 tokens from me for staying in bed at bedtime. They have to be consecutive tokens as well, so she has to go straight to bed and to sleep with no getting in and out of bed and no tantrums. I've been sitting outside her bedroom every night to keep an eye on the situation. So far she has managed 4 nights before it all goes wrong and we have to start again. She was even asleep by 8.44pm one evening, the earliest time since March. In the past it has generally taken her a week to form a new sleep habit and this is very much a work in progress still.  However, sitting outside her bedroom for an hour and a half each night is time I need to sort through paperwork and make plans with TCM so I feel quite stressed and frustrated about it all. I'm hoping some pressure will relieve after the funeral on Monday although I suspect it will just be one less thing to think about. 

One thing I'm finding really tough is the lack of practical and emotional support we have, which is really highlighted at a time of crisis like this.  Both Nana and Pops kept themselves to themselves so there aren't regular visitors to break up the loneliness for Nana.  I am unable to sustain seeing Nana every day long term but I'm anxious about her fragility and vulnerability. I've never been involved in organising carers before and have scare stories of thefts and mistreatment in my head. I'm going to have to trust that they will be kind to her. The manager seemed nice enough and reassuring but my instincts are all off at the moment so I'm not sure I even trust my own judgement. The lack of practical family support pushes my emotional buttons as well as my stress buttons. I'm stuck feeling like I need to put on my cape and Lycra shorts and take on the world but, coming off the back of my long term Vitamin D deficiency, I don't really have the energy or fitness to sustain that. Poor Pip isn't getting the exercise and stimulation he needs which concerns me. I'm trying to get them both down the park as much as possible for a run about but our routine is totally shot to pieces. TCM is trying to juggle work and the house build plus his own grief so I'm trying not to expect too much from him but I can't be a one woman band for the longer term. I'm already starting to feel grumpy and resentful and tired and fed up and tearful and quite angry and very, very selfish as a result. I've been lucky to ask some friends and a cousin to look after Pip during one or two key meetings for the funeral and another friend is looking after Pip during the funeral but that's just a few one off's. I need to wrap my head around the longer term because I've realized that life has now changed for the foreseeable future. I feel cheated really because I just want time to spend with the children we waited so long for and to invest time helping Katie with her difficulties at the current time. I also need some time for my own interests. Other family members may want to visit Nana but the difficulty is that she doesn't always remember people and she might not answer the door. I'm not going to give the key safe number to everyone because that is to keep Nana safe and the key is for the carers so it means I will have to be there to let people in and that's a) not practical and b) defeats the purpose of others checking up on her. 

I'm particularly angry with Pops at the moment for leaving everything in such a mess and that is over-riding the feelings of sadness and loss for the man who has been my lovely, surrogate father for 25 years. I am sad that he clearly had too much on his plate but I am angry that we offered help for many years and that I've been nagging him since February to help us with Power of Attorney so that we didn't end up in a mess if he died. So we've ended up with no Will and a beneficiary who doesn't have mental capacity to manage her affairs. It will take months to get through the Court of Protection and Nana has little money until that time which puts added financial pressure on us at a time when we're using all our money to rebuild our house and spending a fortune living in rented accommodation. His financial affairs will take a long time to sort out and we have so little time during the day to sit down and sort it all out once the day-to-day requirements of the children and Nana are taken care of. Due to Katie's bedtime antics we rarely eat dinner before 9pm which is making me feel physically uncomfortable in the mornings, not to mention playing even more havoc with my already expanding waistline. I'm also angry with myself for not coping effortlessly and for feeling whingy. 

On top of everything else there has been the dilemma of whether Katie attends the funeral or not. I've been to and for and every emotion in between thinking about it. Katie, quite simply, does. It have the emotional capacity to cope with the grief of others. She's only 6 and emotionally way younger than that. She laughs at me if she sees me crying so I'm not going to put her in a funeral situation. I think I am going to pick her up from school early to attend the Wake though and she will be the Chief Balloon Letter-Goer for the letting go of the balloons and messages. I'm trying to enable her to access and express her feelings about it all at a time when I don't even understand my own.

I recognise that things will evolve and change and find their pattern and that we are currently operating in a crisis situation that is highly charged with emotion. I am currently running at beyond capacity and just feeling overwhelmed, hopefully that will change with time. My phone literally does not stop ringing with calls from the Carers and the Builder or the Funeral Director. I'm beginning to hate my ringtone. It's all heightened by the fact that we're rebuilding our house and not living at home or feeling settled. Hopefully we'll be home in Feb/March 2015 to our wonderful new home. Currently though I need most of my energy to manage Nana, TCM, the house build, the finances, homework, violin practice, swimming, gymnastics, carers, Social Services and the children, with one hand held behind my back, and am worried about how all this added instability and upset to the routine will impact on the children. Katie is already presenting with very challenging behavior. Her anger and aggressiveness is something I am struggling to manage therapeutically at the current time. TCM is suffering from hypertension and is withdrawing emotionally and practically as he struggles to deal with the death of his father and workload pressures (and added high blood pressure) plus the worry of his mum. Pip is very much a typical emotional toddler, melting down and lashing out at everything he perceives is unjust or out of his control.  His routine is all over the place and he is tired and grumpy.  I feel the same as Pip a lot of the time if I'm honest. In fact I may just change my name to Sylvia Plath, without the dramatic ending though...more of a "Not Waving But Drowning" sort of concept. 

I churlishly don't think people/family understand, or care, how stressed I am.  I put on Facebook recently that I was a woman on the edge and people (mostly) just clicked "like".  Did they think I was joking? I'm not good at asking for help, in fact I find it ridiculously difficult, and the reality is I have no idea how people can help.  A few close friends have been wonderful in offering to have Pip for meetings and one lovely friend brought us some dinner one night which was so kind.  I just don't have enough time to sit down and work out how someone else can help though but I do know I feel very isolated and really, really upset that it seems that no-one seems to care and I feel doubly disappointed for my husband who deserves better.  I find myself comparing my situation with others and wonder why others seem awash with offers of help and public displays of affection and emotion yet here I sit wondering what on earth we've done to warrant this lack of support. 

I am so sad that people haven't shared of their memories of Pops despite being asked. He was a lovely, if incredibly private man, who kept himself to himself and often separate from others.  He didn't always make it easy for people to feel close to him but I know he cared a lot about us and the children.  He tried hard to be Nana's carer and I am beginning to realise how tough that was for him.  We tried to help him with that but he wouldn't accept any help.  We often joke that he was so private that we wouldn't be at all surprised to discover he's been working for MI5 all these years.  I suspect that people close to him found it difficult to connect with him at times and this is why they've not been forthcoming in sharing memories but I'm sad that we can't fully reflect his younger years at the funeral. 

For what it is worth though Pops, I loved you very much and I thank you for all your kindness over the years and will miss you and your experimental cooking.  I'll think of you every time I make cauliflower cheese at Christmas because I used to make it for you and I will hope that you are free from the pain you felt physically since your double lung transplant and the heart problems and cancer that eventually took you from us.  Sadly we didn't know about the latter illness and we wish you hadn't soldiered on stoically, not seeing the GP, so you might have had a diagnosis and possibly treatment.  Be at peace dear man and know that we will work our way through all the mess and take care of Nana for you.

So back to it all then......