We all need to take a break now and then

This last week has been school half term holiday, and after the recent events (https://mywifehascancer.blog/archives/858) it was well needed. The school holiday means no need for the stress of the school run, and last week it also meant my wife and our son went to stay with my mother in law for the week.

In the days before her diagnosis and losing her ability to drive (recounted in this post from a while back https://mywifehascancer.blog/archives/66) my wife would take both children down to her mums by herself. Now there has to be a little more planning as logistically it means either me driving all the way, or meeting my mother in law and swapping over at the motorway services.

We have to be aware of the time in the car for her as well, because she gets back pain and stomach pain from sitting for too long. So it is a long morning driving and sorting her out, making sure she is comfortable and not in pain.

I always needed the break when they went away for a weekend in the past, and now even more so. I have the kind of brain that needs alone time. The strain of worry and the role of being a carer can be put aside for a short while, and give me time to try and reset my brain. It is a time of mental recovery for me, when I can meet friends, get some jobs done around the house, even blast my favourite music without having to wear headphones!

We all need this kind of break, otherwise we would go mad. The stress of daily life takes its toll, and relaxation is key. Regardless what pressures people face, everyone deserves the chance to step away from them now and then.

I never find the break long enough now. There is so much I would like to do, and the need for downtime is far greater than in the past, that five days doesnt work. Before I realise it, we are back into the routine again, and facing our battles. It is a stark reminder that the pressures and strains we are under will not go away, and are permanent. It is also a stark reminder that my wife cannot escape from constant pain, aching, food intolerance and tiredness. My selfish need to have some downtime cannot even compare.

Keeping Track

Current weight – 110.9KG

Books finished:

Matthew Green – Shadowlands – about lost places in Britain, either villages that fell off cliffs or were abandoned and so on. Very interesting.

New music listened to:

  • Ash – Race The Night
  • Captain Beefheart – Safe As Milk
  • The Cult – Under the Midnight Sun
  • Shed Seven – A Matter of Time
  • Bill Ryder Jones – Iechyd Da
  • BC Camplight – The Last Rotation of Earth
  • Black Grape – Orange Head
  • Kula Shaker – Natural Magick (not listened to their new music since the 90s, and was pleasently taken aback. Great tunes)
  • The Last Dinner Party – Prelude to Ecstasy (Baroque pop? Could be a number one album, and deserves it)

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Why do I feel a complete failure as a carer?

There are many conflicting emotions I find when looking after a sick spouse. Worry, confusion, despair, depression all figure high on my weekly concerns.

However today I want to mention the feeling of having failed. I may have an old fashioned view, but as a husband and father I feel I should protect my family. Actually, I feel we should protect each other, and as a family look out for each other. We should help our siblings when they are struggling. We should lend an ear to their worries.

But I feel I have failed at this. I feel I cannot help my wife get better. I feel I cant protect my children from their worries about their mother. And so I feel I have failed.

Is this true though? One thing we have to accept is that we cannot ‘fix’ everything. And that is especially true when faced with a terminal illness, and long term disability. The way we help in this situation is not by trying to solve the illness, rather by helping our spouse or partner.

I do not have the ability to cure cancer, however I do have the ability to get the right drink and food for when my wife has a bad stomach after chemo. I can clean the house, and take care of the chores so that when she gets home from a day at the hospital the rooms are clean and tidy, and she can relax without sitting looking at a pile of dust on the table.

I also do not have the ability to ensure my children will always have their mother growing up. Unfortunately I believe more and more these days that the time is getting closer when she will leave us. But I can ensure the children are at school on time, are collected from clubs and lessons on time, and also make sure they have a home cooked meal in the evening. I can help with homework, and teach them to drive, and play board games or football with them.

We view ‘winning’ in our lives as the big events. The awards and the promotion in work. Scoring a goal for our football team to win a match. Singing at a school concert in front of hundreds of people, or presenting to the board of directors at work.

But really, when faced with an exceptionally stressful and hopeless situation, winning is making sure the small things get done. This is how we don’t fail.

In the 90s the French football team had a number of big stars, such as Zidane and Henry and so on, who would score the amazing goals, and gain the headlines. However one player was in the midfield and didn’t get that acclaim. Deschamp was derided as a water carrier by Cantona, an unglamorous position. However, that team would not have won without him.

Similarly a band can be seen as the lead singer and guitarist, with a few hired hands behind them. Some would say AC/DC are one – the band is Angus on guitar and Bon Scott or Bruce Johnson on vocals right? But you ask those and the band was Malcolm Youngs, the rhythm guitarist who held it all together.

So I have to tell myself that I am not failing. I am playing the rhythm guitar in my wifes illness, carrying the water (literally at times), and making sure everything else gets done to allow the doctors and nurses to do the big stuff, and try and cure my wife.

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Finally, the Beck track below popped into my head while planning this blog. I was tempted by something from the mighty AC/DC, but this track fits the theme better!

Being a carer can be a lonely path

Being a carer can be a lonely path at times. Friends and family don’t always know or realise the full extent of what is going on. Frequently people are shocked by the constant concern and issues faced in my household.

Of course, when a major event happens, like a hospitalisation, then people come around. Otherwise it rightly isn’t the forefront of people lives. After all, we are the main character in our own films right? Other characters dip in and out.

So the jobs that take up a carers time, and the mental aspects of coping with a terminally ill patient, won’t be considered by people. This is the lonely aspect. It can feel like you are ploughing a furrow that no one else is aware of.

I used to really love Friday evenings. I’d leave work, and that was it for the week. Bliss. However now, I leave work and my second job starts. Picking up the pieces at home after my wife has collapsed exhausted at the end of the day. Looking after the children, and ensuring they get to whatever club or commitment they need to at the right time. The stress of worrying over her health that day.

I saw a great picture the other day (below), and it is so right. When people ask us how we are, the default answer can be to say I’m fine. But is that really the case? We should be prepared to ask for help. It may surprise you that most people will be more than willing! It is hard, but the relief when offered some assistance can be rejuvenating.

There is no need to be a martyr as a carer. After the patient, the most important person to look after should be yourself. You will help no one by being burnt out and getting ill. I will admit I don’t always do this. I am a typical man, and will soldier on and try to do everything by myself, when in reality I am just spreading myself so thin that nothing gets done properly. I think that may be a resolution for me this year – to accept help and ask for assistance.

I will also say something about lonely versus alone. As an introvert, being alone can bring me great relief and help me to power up. This isn’t being lonely, but having time on my own. There is a major difference between wanting solitude and having solitude thrust upon you.

Finally the first lines of the following came to mind while writing. Enjoy!

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Why do I hate being carer to a terminal cancer patient?

This morning I woke up, and hated being a carer or caregiver. Sometimes that happens. The strain of looking after someone can be immense.

What exactly do I hate right now? Well let’s see:

1.     The lack of independence my wife has. Everything has to be done together. For myself as an introvert I find this hard, as mentally I need time out. When my wife could drive, she could go to visit her mums on her own, and visit friends at the weekend. Now these things need to be done as a family group.

2.     The ups and downs of her brain health. Some days she is exhausted after doing a few small tasks, and then will wake up following a night’s sleep and download everything in her mind onto me. I understand that is how her brain now works, but for the rest of us it is exhausting. It is famine or feast as far as her brain operates.

3.     The odd aches and pains that we are never sure are something serious that needs immediate attention, or indigestion. Is a back pain from sitting in the car, or the start of an infection in her lung or liver? 

4.     The plan forward. I have written this before, however every time we head to the specialist, the plan appears to be wait and see until something really bad happens. I appreciate she is keen not to have more treatment right now, but my mind needs a plan. We constantly say that the next time we will re-look at everything.

5.     My wife wants to make plans for this year, which I get as she needs to look ahead. But my mind sees the way she is and thinks there can only be one main plan for the year. Struggling to walk very far, and not able to eat doesn’t tie into a fun weekend away.

6.     The lack of normal adult relationship. This really has started to mess with my mind. The lack of intimacy. The constant worry about her. The changes cancer has brought on her physically.

7.     And tied into the future is the feeling I have that we are being held back by cancer. From all the above we can’t move onwards, because this dark shadow is always behind us, waiting. The bogey man sat in her insides, until it decides to mess everything up.

So today, as is often the case, I hate this whole life. I hate being forced to be a caregiver, and really hate cancer.

Holidays with a disabled partner

Once my wife had recovered enough from the radiotherapy, we were able to look at having a break. The recovery did take a long time though. Because of the location of the tumour being zapped (her liver) and its closeness to the other major organs, she did not feel well for a few weeks. Thankfully the sickness passed, but it could still be triggered by anything, the most violent being a crumb on a biscuit with an ice cream getting stuck in her throat, and the body then deciding to reject the rest of the stomach contents. Not great when we were sat outside an Italian restaurant in Paris without any toilets, leading to her having to quickly find a spot away from other diners. The reaction was impossible to predict, and came on so quickly. It was very embarrassing for her, and yet another indignity this disease has thrown her way.

So we did manage to get to Paris, my daughters dream destination, and a few days at EuroDisney. The whole week was exhausting, with alot of walking, at a time when the weather was heating up the ridiculous heatwave we had last week. Somehow (probably through Disney magic) my wife managed to see all the sights she wanted to, and eat all the food she wanted to try. We were lucky in that we had a card to get assistance, which meant that we could avoid queues, and walk straight onto rides and so on. I felt guilty at times, however there was no way that she could have ever stood and waited, she would have collapsed. Growing up, I always thought that disabled people were in a wheel chair, or had a really obvious mental illness, but now realise that isnt the case. It applies to those who have unseen illness, or have a lack of ability to walk unaided, basically those who cannot be on an even playing field with everyone else. My wife cannot do half of what other people can do, but why should she miss out on the fun those people have? And if anyone wants to complain, I have a list of operations and treatments and drugs they take to be on her level.

The pass helped, but it isnt easy having a disabled partner when away. She has a lack of sight on the left side from her stroke, so crowds can be a real problem, which at a theme park is a regular concern. Her hearing can be restricted, particularly in large busy areas, so we always need to aware of the surroundings. She cant carry too much, so my daughter stepped up to carry a bag along with myself. We needed to check where seating was, and always be aware of the nearest rest room, and have a regular drink to hand. Plus she would get tired and then confused, so we had to ensure that we knew when she was able to respond and when she needed to rest. If it sounds alot like having a child, then that is right, but with the added awareness of someone who used to be exceptionally capable, but now isnt, and is frustrated by that.

On a guilty side note, I notice that when we leave her to rest and I take the children out for a while, the pressure seems to lift, and we can have fun without the reality kicking in for a while. There doesnt have to be worry about lots of people being around, or where the toilets are, or holding her hand to guide around places. The three of us can get on with enjoying things together, and while I enjoy that time, I feel very guilty afterwards, realising that she is missing out, but also that this is how things will be in the future.

Right now she is feeling the effects of the week away, as well as the knowledge of what her latest scan showed. The liver tumour has shrunk slightly, but has some smaller friends with it, and there was mention of the pelvic bone showing signs, which was the first time we recalled hearing that, but does make a little sense from the way her hips hurt alot.

Currently her back is bad, which is mainly from the walking around and then sitting in cars for a long time. She is in agony, and it does cause issues for us. I worry that this is a symptom of worse to come – and that we are on the down hill slide.

As a partner, it is tough as well, though not anywhere near the same. There is no break for us as support, every day has some form of concern, or the need for help walking around somewhere. It is a 24/7 job. Colleagues at work will clock off and head home to relax, but I know will head home to pick up where my wife fell asleep, and make sure she is comfortable, with the knowledge that a pain may mean the need to head to A&E.

This is not a post with any answers, but more a post to let people know that if you have a partner like this, you are not alone. There are lots of people in the same position, some worse, some better, but all doing an amazing job looking after those they love. It is tough, but we need to remember to talk to friends, and try to escape the pressure cooker now and then to recharge and be able to face the task we have. From my other posts you will have seen mention of live music, records, running and a few other things I do to stay sane. Sometimes they work, and sometimes they dont. However, it is important for the carers to be healthy, otherwise they arnt caring.