2.40am

I can’t remember the last time I slept on a couch: One Christmas a few years ago when Dad had died and I spent Christmas Eve with my sister and her now ex husband?

I not going to entirely blame their 6 year omd son now, who is asleep in my bed alongside his 7 year old niece. I could blame my 9 year old son who championed a ‘sleepover’ but didn’t actually want anyone sleeping in his room (not even his bed!l…perhaps he knew something I didn’t.

Since 11pm, after giggles and snuggles and photos sent to mummies (them happy, me in mock despair) I’ve been kicked repeatedly, shouted at in sleep, shouted at awake, covers repeatedly pulled from me.

What’s not helped is I’m actually unwell too (I did warn my sisters) and suspect that I may well have a temperature too. I know that I have barely slept, and if I have, it’s that sleep where you think you’re awake but very still and can’t move.

So, I’ve moved to the couch.

Today, well yesterday really, I finally went to my the school and retrieved my things from my office. It’s taken me all week to build myself up to do that, a few days of procrastination, and my sister coming with me. Maybe that’s part of the reason I agreed to a sleepover.

I also received my last paycheck today. There’s some comfort in that until I realise that from Monday I’m not actually earning anything. Eeek. Some trawling through job sites found some more tutoring agencies looking for Tutors and with better pay than last year…so, there’s hope I guess.

The more people I speak to about my business plan, the more they tell me to go for it. There is no business like mine in the area, and adding the niche I would eventually like to adapt to, I have these feelings that this could work. It also could fail terribly which is what is stopping me. From a risk perspective, my biggest issue if it failed initially would be the cost of the course which gives me adherence to the body who will approve insurance. And, actually, whilst I certainly don’t have that money to throw away, it is an investment which ever way you look at it.

WordPress, I’m going to do it.

Day 4 – avoiding a crisis

I woke at 4am this morning. It had taken me a little while to get to sleep but it helped to listen to relaxing music.

I went to the bathroom and when I came out Wildcard was there. He followed me into the bedroom and repeatedly asked if I was OK. I told him I had just woken but I was fine.

We both returned to our beds and within minutes he had messaged me.

He asked again if I was OK, seriously? I was touched by his concern.

The thing was, there is something. I have a long standing issue with my eyes – I get the Coldsore virus on my lids. It flares up from time to time, usually when I am tired, stressed or run down. So you can guess what happened when I woke at 4am. I knew it was coming.

The medicines I take for this are only given when I have a flare. I had a few tablets left over from last time – naughty I know – as if I take them as soon as the symptoms start I can sometimes stop it from developing. Waiting for a hospital appointment delays that.

When I left my home, I had started with the coldsore virus in my nose. I started the tablets and within a day it had healed. I took the last tablet yesterday, just in case.

Wildcard was worried I would get ill. So at 4am, he probably sensed my nerves rather than my eye as it has not yet developed. Again this morning, with our morning kisses, he asked if I was OK and made me promise I would tell him if I was not. I mentioned my eye and he asked if I had brought medicine, as agreed. I said I had.

He went off to work with a kiss, commenting that I could unpack my clothes in his wardrobe – again, another gorgeous sign that I am family.

Immediately after he left, his mother came in to ask if I was OK. I told her about my eye, and showed her my medicine on my phone which was available to buy in their country. She suggested we go to the pharmacy which conveniently is downstairs from their apartment – I had planned at 4.30am to sneak there myself – I could tell that she, and later his dad was worried.

The pharmacist was relaxed and spoke some English, and I was able to show my empty packet and the name of the medicine in his language. It is ordered and will arrive at 2.30pm. Within a few days, my eye should be fine.

I have travel insurance and could go through them, but this is easier. Apart from when Wildcard finds out.

If we are to continue in this relationship in whatever form, then I will come to stay and at some point I will be sick. It worries me less than it worries him. Hopefully he will worry a little less when he sees this is sorted now.

A morning smile.

I don’t believe I’m alone in avoiding going to bed.

Daytime usually means I’m occupied somehow: work, housework, family, friends. Of course grief has, and still does, hit me from time to time and I think about Dad a lot. But during the day – certainly during the week – they are usually fleeting heartfelt thoughts.

That’s how I’m coping. I need to carry on.

Nighttime is different. The minute my head hits the pillow and my eyes close, the grief hits me hard. Memories, thoughts, regrets… they play in orchestral fashion, bittersweet and lilting or tumultuous and powerful.

Mornings are similar. I no longer wake up to the stab in the heart as I realise and remember he is gone. But I always wake up thinking about him, somehow.

I know I look tired. I look at myself in the mirror and I see that grief has aged me. I’m tired and pale and I have bags under my eyes. Ah well.

This morning, however, I woke with a smile. A memory of something my Dad did, from a little girl to adulthood… A joke that he replayed with every daughter and every grandchild. It made me smile as it did when he was alive. A memory of him which was vibrant and beautiful. Unforgettable. Something that was uniquely him.

I was told in bereavement counselling that this day would come. That the positive and beautiful memories of my Dad would shine through. The image I’ve had of my Dad, for so long, has been of a tired, sick man. It was good to think of him as he really was: strong and funny.

Smiles are good.

It’s cold outside – and in.

I’ve been awake an hour and I don’t want to get up. I’m warm (ISH) in bed: getting up would mean braving my unheated house until I get the fire going. How I’d love to hear the sounds of my Dad opening his bedroom door, walking down the stairs…. the sound of the fire grate as he starts the fire.

Not that I’m lazy or dislike making the fire: it’s just a daily reminder that he’s not here, from the moment I wake up.

No, I’m in bed because I can. My children are with their Dad until this afternoon. I’ve got plenty of housework to do. This post is my last procrastination before I get up. ☺

I started the week relatively positive. Once the dark clouds of Dad’s birthday and Christmas etc passed, I felt better. I’m trying hard at work, putting the hours in at home, and I’m having some success.

Yesterday was not a good day however: I had my absence meeting at work.

It’s been overdue. I knew it was coming. I knew it wouldn’t be pleasant but as it was with two members of my team, I expected understanding.

And there was, in words, but not in actions.

My absence record stretches back a year. I knew this. But I didn’t expect them to include my time off after Dad died. (I had three weeks off, or thereabouts.) That stung. I felt like I was being reprimanded for something that I couldn’t help. Like the world was punishing me twice. It’s bad enough to be grieving but to then worry that the grief is affecting my work in other ways was hard to take.

My other absences are a bout of flu, vomiting and diarrhoea and then two flareups of a longstanding medical condition which I’m under the hospital for and was given a sick note by my consultant.

I completely understand the importance of good attendance and the impact that my absence has. I don’t like being off. My health is usually such that I have long periods of no illness or absence and then I seem to get one thing after another.

In the case of the flu, I came in to work in the morning and left by lunch with a bad headache. I was in work the next day. I felt dreadful but knew that I had to show that I was trying. I ached and coughed and was told by many to go home. I didn’t. By the Sunday, my chest was tight and I called an out of hours doctor who said I had a chest infection. I took Monday off and then went back to work the next day. I’m repeatedly questioning myself now – could I have gone in those two days?

Regardless of any of this, the actions of my colleagues has hurt. I have a follow up hospital appointment next week for the serious flare-up of my medical condition I had a few weeks ago. During the meeting, I was handed my absence request sheet and was told to make the appointment for half term which is in another two weeks. I get it: you’ve had enough time off, make the appointment in your own time. But surely it’s best that I attend my appointment to help avoid future flareups? And why wait til this meeting to tell me I couldn’t go? I felt by this action I had done something wrong in requesting the time: a quiet word when I handed the request in weeks ago would have sufficed. Instead I feel like a point was being made.

And then, I was given a target of no absence until Christmas.

I knew I’d get a target. I assumed it would be until the end of the school year. That I understand. But until Christmas? Can I avoid a flare-up or any illness for eleven months?

I’m not saying I want time off or even expect it when I’m ill. I do go into work ill, when I’m able. I’m often told I shouldn’t be in and I should “look after myself.” The colleague who has given me this target is the same one who told me not to come into work until I’m better and that my health is more important. No, the point is, with my health condition, I feel like they’re setting me up to fail.

It’s not a question of “could I have made myself go in for those two days?” I will be in: I will drag myself in.

I did ask the question of what I do if I get a flare-up and I was told that I shouldn’t come in if I’m really ill. I get a flare up at least every six months but sometimes, when I’m run down, a lot more frequently. I don’t want permission to stay off but don’t the words and the target contradict themselves a little? The target length has been set because of my total days absence but that includes bereavement. I’m at a loss.

I know my colleagues are just doing their job. I know that on paper, my absence isn’t good. But all that meeting did was to make me feel even more isolated at work.

To be continued.

Presentation

MI’m sat in a hospital cafe with a rather delicious cappuein front of me. I’m waiting for my prescription which I’m informed will take 15 minutes. It’s usually longer.

I’m on my own, but that’s OK. The other four filled tables also have single occupants.

I’m feeling pretty miserable. Monday was my first day back in work after the Christmas holiday and the start of my new, temporary role. I was determined to ‘hit the ground running’. Show them what I’ve got.

I’m not the same person anymore. The loss of my Dad and the experience of his illness and death have changed me. I’ve tried very hard to hide this, to be the person I used to be – strong, capable – but I have failed. A conversation with work just before we broke for the Christmas holidays has proved that.

In telling me that, all they’ve done is acerbated the problem: for me, I’m failing at hiding it so I’m failing in general. I feel that people are doubting me, seeing my new weakness. I’ve heard that one colleague, in a show of support apparently, has called me a ‘broken woman’. That I am, but I’ve worked very hard for work not to see that.

But this new, temporary role was a chance to change that. A different focus, different expectations – a chance to prove my worth again. People have short memories – the past year I have been plagued by a burn out, the death of my beloved father and the subsequent grief and – I’m guessing – associated illnesses. I want people to remember what I can do, the years of success that I had before this.

Unfortunately, Monday morning I woke to a severe flair up of a pre-existing medical condition that rears its head when I’m run down. Not a problem, I thought. I will get it quick – make the emergency hospital appointment, get the usual medications and get back to proving my worth.

Apparently not. After a lengthy appointment at the hospital I was informed that this flair up was particularly bad. This meant my usual medications, plus steroids and a sick note for a week.

I was angry. I didn’t want this! I drove to work in a rage. I could ignore the note, just go in. But a conversation with my ex on the way (the man who never advocates unnecessary time off work) brought me to my senses. A senior consultant has told me that I need a week off. That means, I need a week off.

I drove to work to hand in my note and met with my boss. They were sympathetic, understanding. I don’t know what’s worse.

I was angry, upset, apologetic. I told him that I didn’t want the time off, that I wanted to prove myself. “Don’t give up on me.” Should I cringe at the memory of saying that? I don’t, because that is how I felt. How I still feel.

He told me to stop worrying, I couldn’t help it. He knew I was good at my job, knew what I had been through. Just get myself well.

Tuesday and Wednesday I was glad of the time off. Pain and exhaustion ripped through me and the illness took hold. My consultant had warned me it would get worse before it got better. Seems she was right about this too.

So today I am back for my follow up appointment. Although there is improvement, I’ve been given more medications for the next few weeks. This hasn’t happened for a long time. Again, I appreciate how bad this flare up has been now. This different consultant was sharp and quick. Not much care, but efficient. I didn’t feel like asking questions.

As I entered the coffeeshop, I was followed by two hospital staff, coming to fix the coffeeshop fridge. One of the men quickly got into a cherry banter with the coffee staff and his colleague, and as I was being served, me too. He made me smile and I watched the banter between colleagues in good humour.

As I sit drinking my coffee, I’m considering how we present ourselves affects others, perhaps without us noticing. Today’s consultant’s abrupt efficiency has meant that I didn’t ask questions I had. The experience in the coffee shop cheered me up – all from one man’s smiling face and sense of humour. I was lucky to be an onlooker of that, just for a moment, because it has made me realise how important your ‘outside’, your demeanor – whatever you want to call it – really is. I’ve tried hard to be professional, to be the person I once was. I realise now that it is impossible. Inside I am changed and that is ever present on the outside too, no matter how I try to cover it up.

So. What can I do about it?

My job is still important to me. I’ve lost some confidence in myself. I need to prove to myself and to others that I can do this. My demeanor needs to show this care and determination. Does it matter that I’ve shown people my more fragile side? I’m not sure. But I can’t change it. I can only focus on how I present myself from now on.

Secret garden

I had an ever-expanding play area as a child. First there was the back yard, flanked on three sides by buildings and walls and on the final by a rustic fence made by dad (everything my dad makes is rustic). The yard was a patchwork of red brick and I remember a time when my mum asked me to try to get the weeds out, that habitually came through the cracks, with a blunt butter knife. It was good for wheels though: ride-on vehicles propelled by young, strong legs; a black and white metal rocking horses that sat lonely in the yards for years after we stopped playing with it; rollerskates and tricycles.

Then, as we grew, the drive became our playarea. We ventured out through the rustic gate of the yard and on to a gravely drive which stretched alongside the back yard, the house and the front garden, and then back down towards the big shed where dad’s farm machinery was kept. The drive was flanked by a long beech hedge that in the future would have a leafy arch to the caravan we had many a happy holiday in. Ivy grew up the wall of our house, and there was also an old English rose bush whose blooms–a delicate, soft pink – had the most amazing fragrance. Towards the front end of the drive, near the front garden and at the end of the house, was a pair of large wooden gates that shut off the drive but never did, and that were perpetually open – unless we were swinging on them.

The remaining overgrown beech hedge, now a tree

At an unknown age, we ventured further out again. At the other side of the beech hedge was a secondary drive for the tractors and a paddock beyond that one day would have our much loved ponies. This secondary drive continued down past a line of sheds and dog pens on the right, and the greenhouse and fields on the left. Eventually it would lead to the fields where Dad grew vegetables, fruit and flowers. We rarely went as far as the fields in our younger years, unless we were with Dad. But this drive, compacted by the wheels of farm machinery, was great for riding a bike down.

The sheds mainly contained chickens and on the other side of these sheds, away from the drive, there were little doors which Dad would open to let them into the secret garden.

We were not allowed in the secret garden for a long time but we could peer through the knot holes in the tall gate and peer in. Enclosed on three sides by sheds and on one by a tall hedge that marked the boundary of our small holding, it seemed a wondrous place to my imaginative mind not least because we were not allowed in it alone for so long.

There were only practical reasons for this of course – Dad didn’t want us to let out the chickens – but to our young minds, this place became a space of wonder and excitement. Maybe this is why, some time later, Dad gave this space to us; the rest of our farm-playarea forgotten.

Of course, as anyone who has kept chickens will know, ‘garden’ isn’t the correct word to describe this place. The ground was compacted earth. There were few flowers, only wild ones that grew in the hedgerow, or the blossoms on the huge pear tree in the corner. In the centre of the garden was an old plum tree whose boughs would weigh down with its bounty of fruit each year. My memory fails me a little here, perhaps from lack of knowledge, but there was some sort of machinery, or huge metal tubes, I’m not sure what, but I know we used to climb on or through them, making them part of an assault course. Dad made us both a swing, my sister and I, one hanging from the bough of the pear tree, another a stand-alone swing made from telegraph poles. We would spend hours on those swings, twisting them and then releasing them so that the world would spin in dizzying excitement or simply swinging with our faces to the blue, blue sky.

These memories came to me this morning as I walked out through my garden, to the area where the chickens now roam. Over the years this property has changed a lot, not least from a small holding to a large garden, a tall line of evergreen trees blocking off what used to be the fields of my childhood and which now house an industrial estate.

Dad and I designed the garden together, and I realised this morning that its design, a series of brick paths leading to various secret gardens and archways are all steeped in the past. Each part of the design came from my happy childhood, not my imagination.

Over the past years with Dad’s declining health, the majority of the garden has overgrown and gone wild; apart from the area adjacent to my home, the extension built on the old gated drive. More recently, my sisters and I have been working hard to clear and tidy this garden, and again I realised the seat of my reluctance to remove the newly uncovered arches and pathways in preference to a large grassed space… Bland in my eyes. Although vastly different to the land of my childhood, each brick pathway and secret nook leads me back to my childhood. And as I fed the chickens this morning, begrudgingly, cursing them as I looked at the bare earth they have scratched, I understood why my sisters love them so much as I love the now uneven paths and overgrown trees. These things are our link to our happy childhoods, a path to our dad who is in hospital again, on his own path towards the end of his life.

Nothing to report

Life has settled back down to its usual rhythm.

Dad is stable for now. He has little energy to do much but each day does a little more for himself. I’m still not convinced he truly realises the extent of his condition but none of us are sure that now is the time to tell him: he is anxious enough already. My sisters and I are sharing his care. He doesn’t like to be alone but this week we have had to rely on the carers a little more than last week as work has beckoned for us all.

Talking of which, I’ve been back to full duties for a couple of weeks now. It’s fine. I’m enjoying it. Sure, it can be fast-paced and a little stressful, but I enjoy the challenge again.

This week I’ve been slowly working on getting back on my diet. For the first week of Dad being ill I was really good: taking pots of yoghurt and fruit into hospital whilst I sat with him, drinking loads of water. Tiredness, stress and low mood soon stopped that. Gosh have I suffered for it. All my old symptoms have returned – bloating, stomach pain etc. I’ve not found it as easy to start again this time so have slowly introduced the changes again. Today, finally, I managed low carb successfully. I’ve only put 3lb in weight on but feel heavier. Hopefully I will see those positive changes again soon.

And that, really is it. My life is centred around my kids, my Dad and work. Housework figures a little too. At the moment I’m fine with all that:I’m just happy my Dad is still alive and not suffering too much at present.

This weekend I have actually made some plans – seeing a good friend for the first time in six months (I avoided all previous plans with her due to my anxiety but she has been very understanding). I missed another friend’s birthday last weekend as I was caring for Dad so this weekend I am taking her out for a cream tea in a castle.

Enjoy the rest of your week!

Sentinel

It’s nearly midnight. I’ve just come to bed to find that my 11 year old son has been on his Xbox when I thought he was asleep. He doesn’t cope very well with being caught out or being in the wrong. Quickly, he tries to push the blame on me. I have no energy or inclination to argue. Instead, I remove one of the wires and tell him that th is will now happen every night. The fact that it frustrates him says it all. I have been very naive and over trusting. Tomorrow I am going have the problem of trying to get him up in the morning so we are not late. He will be grumpy towards everyone which will then set off a row between him and his siblings.

For a fleeting moment I wonder how I am going to manage. After work I’ve been a mum and a carer to Dad. I did some urgent school work until 10.30pm, tidied a little then went to sit with Dad.

We talked about tomorrow’s visit from the respiratory nurse. Dad can’t understand why he is visiting. I tried to explain but it is pretty obvious that Dad does not realise the situation he is in. When he does seem to have an inkling, it produces a further low mood. He said that he wasn’t any good to anyone. I, of course, explained how that was not the case. I’m not sure he bought into it.

I had every intention of waiting for him to go to bed so I could accompany him. Tonight is our first night with out my sisters. However, for the last 30 minutes he has repeatedly told me to go to bed. He said I am making him feel bad. He reassured me that he can manage on his own.

I have come upstairs but, as you can see, have no intention of going to sleep yet. Writing this post is killing some time but also draining me of the little energy I have left.

How will I manage? I know things are only going to get worse. Can I really manage a full time job, three children and a sick father alone? Sure, my sisters are fantastic and are helping as much as they can but the strain and the cracks are beginning to show. They’ve bickered today: at the moment, one is grumpy and irritable the other is tearful and sensitive. Not a good mix.

I’ve just helped Dad to bed. I heard the door and came to the stairs to help. He just kept apologising over and over.

“I’m, so so sorry, love.”

He’s got nothing to be sorry about but he doesn’t believe me.

Valuing time

Not long after the ambulance had pulled away, my other sister (my youngest sibling was supporting Dad in the ambulance) arrived. I quickly went over the evening’s events again. Looking at her, I could see the worry and grief of a month of Dad’s illness in her face, her eyes, her posture. I know she can see it in me too- I can see it well enough in myself.

She left soon after to get to the hospital so she could see Dad before work. I lay on the couch, exhaustion making me drowsy whilst I simultaneously waited for news and a more reasonable hour to wake my children’s dad to ask he could come over and watch them whilst I went to the hospital.

I was in the hospital by 8.30am. Compared to the other three times Dad has been taken by ambulance this month, he looked reasonably well. Before long he was taken to an assessment ward while we waited for repeated bloodtests to show whether he had had another heart attack.

Dad was very grateful and apologetic for us staying with him, and for all our support. We kept telling him that we wouldn’t have it any other way: Dad is there for us no matter what the problem.

My sister and I told Dad about the various friends we had who had said how much they love our Dad. One friend of my once said:

“I’ve never really had a Dad. But if I could picture what I’d want in a Dad, it would be yours.” Praise indeed and well deserved.

He’s stubborn and a little old fashioned. He’s stuck in his ways. He still treats me like a teenager if I come home later than he thinks I should. He gives me advice whether I want it or not. He is usually right.

He shows me love every single day. He makes me feel special and loved and worthy. He makes me feel proud of my life because he is proud of me.

I honestly don’t know how long I have with Dad. Part of me is fighting desperately to make the final stage of his life a happy one, but I don’t know how. Other than to show him and tell him I love him every single day… It just doesn’t seem enough.

Impractically practical.

It’s been a trying week. So much has happened since my last post.

For most of last week, we continued to focus on taking one day at a time. By Wednesday though, we were told that Dad was medically fit. We were now waiting for physio and social care to assess Dad’s need for support at home.

We were surprised by all of this. To us, he still looked/s ill. Of course this was shared with staff, but on Friday he came home.

My two sisters and I had a lovely evening with Dad. After a snooze and some tea, we sat with him and chatted about memories. Dad told us jokes.

We helped him to bed then went to bed ourselves. By 5.00am, an ambulance had been called as Dad was complaining of chest pains.

It’s now Sunday and Dad is back in the respiratory ward. His oxygen levels keep dipping and he looks exhausted. A CT scan is booked for tomorrow. We don’t know what is going on.

As is always with hindsight, there are a few things I had wished I’d done months ago to prepare for this eventuality. I thought I’d note them down now so that they may be of use to someone else.

Get a bag prepared for your loved ome: pyjamas, underwear, toiletries. Clothing could wait, but having spare toiletries packed and ready saves a lot of bother – soap, flannel, toothcare, razor, roll-on deodorant, towel, hand cream etc.
Make sure all medications are in the same place for ease of packing. Hospital staff and paramedics will ask for these when the patient is admitted.
If you have children or pets, speak to family and friends about who can step-in in an emergency and have those phone numbers to hand. Make sure you know when you are allowed to call them (are they happy for middle of the night calls?!) and have a prepared info sheet ready for them – where important items are in the house etc.
Make sure you have plenty of spare keys for the house in case of the above.
Have a paper list ready of people that need to be informed in an emergency with their phone numbers. Mobile phone batteries don’t last all night.
Hospital food is good and is relatively cheap but will add up over time. Make sure you have some cereal bars, bottled water etc ready to drop in your bag if you have to accompany someone into hospital. It can be a long wait until a family member comes to take over and you may not want to leave your loved-one’s bedside. You still need to take care of yourself. Furthermore, we’ve been sat waiting for a ‘snack box’ for Dad for hours before now, when he hasn’t eaten. A few snacks help.
Similarly, stock your freezer with easy meals for when you come back from a long day at the bedside. There’s only so many packaged sandwiches and take away you can stand. Healthy eating will help you too.
If you are a big family, designate one or two people to call the hospital at predetermined times and then to distribute information. Staff should be at the bedside, not repeating information on the phone.
Make sure you know who the named nurse is for your loved one. In my experience different staff means different information. Add a dose of Tiredness and anxiety and you have a very confused relative.
This last one is the most important and the most difficult. Whilst you love one is still well enough to do it, have the conversation particularly if they have a long term condition that will ensure their deterioration and/or they are elderly. Knowing what they want in each eventuality saves a lot of needless discussion and distress for all involved.

Hope this helps.