My wife has gone away to stay at her mums for the week, taking child 2 with her. They left this morning, and I whilst I should be looking forward to some down time from my role as carer, I felt guilty.
I guess I feel guilty as I was looking forward to her not being here, meaning that I could try to relax a little. I love my wife, but I dont love the disease and the impact it has had on her. Thankfully she has left a list of jobs to do, so in reality it is like she is here, but without the TV being on all the time.
You may realise that it is Valentines Day next week, and ahead of her being away, we decided to take advantage of the mother in law being here to have a meal out, just the two of us. I honestly do not recall the last time we managed that. Over the Christmas period when we had the time, my wife was laid low with the horrible cold and cough bug, and was totally fatigued.
So, we had an Italian restaurant booked. I left work early, despite not having to do the school run, and got home to my wife again in agony. The same stomach problem she had a couple of weeks was back. She was crippled over, and the only thing helping was a hot water bottle. Apparently, it was alot like really severe period cramps. There was no way we were going out, and so another event was cancelled, to be replaced with a night of worry.
The more worrying element this time around was the sight of blood when she went to the toilet. This is a serious development. Hopefully it is nothing, but the odds may not be in our favour. A letter from her oncologist this week mentioned that the pace of the disease and the spread to various locations means she has a limited prognosis, with no further conventional treatment options given the number of lines of treatment she has already had. Additionally there is no way to accurately predict how she will be in the near future, and she may possibly only have a life expectancy within months. Again, we have hope, but hope may be all that is left.
I have had this feeling since Christmas, in that I dont see how we will still have her for next Christmas. Depressing, but I have to plan for the future. I desperately want to be wrong, and that we may find some revolutionary cure, however the chances are getting less and less. We have already had many extra years that we shouldnt have had. The letter also confirmed something I was thinking. I had been frustrated that nothing was happening, and felt we were being told to wait far too often. However, it may be that there is nothing that can be done, and so waiting is our only option.
So the few hours since they have gone have not been spent relaxing, rather trying to shift the massive stress headache, and clean up cat sick. I did however get thinking about the type of skills I have had to develop as a carer, and it is worth sharing with you now.
Firstly, I am not in any way a qualified carer. Those people are amazing, and have empathy and knowledge above and beyond anything I will share here. However, I do have experience from nearly 7 years of looking after a terminally ill partner.
- Firstly you need patience. There are times when you have to wait for results, but also times when you are just sat in a waiting room for the next appointment. Or sat in the car park waiting for your partner as you are not allowed into the hospital. Waiting is a big part of the life of anyone associated with cancer. Unlike with most illnesses, you cannot just go to the doctor, get some tablets and be better. There are degrees of better, and you will have to wait and go through all the stages of them. The other aspect of waiting for me is that my wife is not now as quick as she was. Since her stroke any activity can take a while, and she needs her independence so should do things herself. This means that something as simple as leaving the house to go to the shops can take 30 minutes while she cleans the kitchen, and tidies away shoes.
- Empathy. I am a carer of a woman who is dying. I damn well need to be empathetic to her life and try to understand her reality. Some things may not make sense to me at first, but there is a reason why she is doing them. A case in point is the constant need for cleaning. My wife has to control something in her life, and this is her way of doing it. And she may not have long left, so if she wants something done her way, we need to do it that way.
- Agility or the ability to change quickly. Things can happen suddenly. One afternoon you may be packing to go on holiday, that evening you may be sat in A&E ahead of a three or four week stay in intensive care. Plans to go out for a meal may be changed at the last minute. It sucks, but it happens. The health of my wife has to take priority over the rest of our lives.
- Outwards positive attitude. Look, the life of a cancer victim sucks a big one, but as a partner we need to keep the positive attitude. Keep motivating. A positive attitude on life may not have an impact on her illness and potential getting over the disease, but I’m not going to risk otherwise. We also have two children, and need to keep things light for them. Things may not be light, but they dont need to be worrying on top of everything else they have to deal with. Leave the worrying for me.
- Which is my next skill requirement. Taking the brunt of the worry in the household. I’m not being sexist “Oh, I’m a man, I should do the work”, no this is more, my wife is dying, she needs to concentrate on other shit right now, not the petty stuff around the house. She doesnt need to worry about the children getting to school on time unless she wants to. She should be doing whatever she wants to.
There are other things you need to develop. Living on little sleep, learning how to source random food stuff at a moments notice (we have been through Angel Delight phases, made pancakes at midnight, and get distinctive squash in strange locations). All of these are useful.
But realistically, the person who has had to adapt the most is my wife. She has the life ending illness, and she has to live with that fact. So the final skill I have had to develop is one of being supportive, and helping through this horrendous journey the best I can.
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