Since my wife was diagnosed in 2016, I’ve often asked myself the question, how do i cope? I’ve said elsewhere that the diagnosis day itself went by in a blur, and in the time since we have been on a rollercoaster of both emotions and physical health. Most of the time I feel we react by instinct, rather than being able to properly learn how to manage.
I suspect that is a normal human reaction. You face the challenge immediately in front of you, never seemingly realising when they become too big to overcome.
From a mental health perspective this has been tough. Not only is there the anguish of watching your loved one, wife and mother of your children suffer horrendous pain, and waste away, but also the loss of a partner and lover. Mental health guidelines talk around how a stable and happy marriage has a positive impact on your mental health. To thus lose that critical relationship knocks one of the legs away that keep you on an even keel. The person you confide in, discuss plans for the future, have date nights with, is gone. My wife is still with us, but our relationship has moved away from the one it used to be.
There is also then the loss of intimacy, and for me, the worry of whether you will ever regain that kind of relationship again. When one partner is unable to maintain a ‘normal’ relationship, the other partner does suffer. Rightly or wrongly, I feel really guilty for being this way – I am not the one with the terminal diagnosis, and so why should I feel bad for myself? And this increases the mental toll – I pine for the loss of my marriage and physical relationship with my loved one, but am then guilty for feeling that way. And on a really selfish note, I worry that I will never have that intimacy again.
So these opposing ideas play out fairly regularly in my head, the worry for my wife and her health, and the worry about my own life going forward along with the loss of the life we have built together over nearly 20 years of marriage. Then throw in the worry about how my children will be and what I can do to look after them, and my brain doesnt feel big enough to compute all those thoughts.
In the build up to Christmas, I also realise that I dont have a clue how to ‘do’ Christmas. I mean, I know how to cook the dinner, and go to the carol concerts, and buy presents (even though I cant wrap them), but it is the little special things that I dont know how to do. My wife manages to find small gifts, and decorations, and treats for everyone, that while I may moan about the tweeness, do make the magic happen. And I dont know how I will go about copying her when the time comes. Could be next year, or the year after, and I wont have a clue. And so I have extra worry about making sure my children have a great time this year.
So back to how to cope. Various web sites give lists. An example follows from the Macmillan website, and talks about how to support a partner with cancer.
https://www.macmillan.org.uk/cancer-information-and-support/supporting-someone/emotional-support-for-family-and-friends/supporting-my-partner-with-cancer
They stress the importance of communication, making time for each other, talking to professionals, getting support for children, asking for help from friends and family, and letting your spouse having as much control as they can take. These are all great pieces of advice.
In our relationship, we have talked about things. We have planned funerals, which was an horrible experience, we have discussed inheritance and wills, and ensured they are up to date. We maybe dont always address our fears with each other – my concerns as written earlier would add too much guilt to my wife to talk about with her, while sometimes the things she may wish to address would be too painful for her to think about on top of the physical pain she may have. I feel though that is part of communication between a couple – knowing when to discuss something, and when to shield the other.
We have used professional help, especially where the children are concerned. Counselling has helped them both, and we have also been lucky that their schools have been very supportive. We have encouraged them to keep up hobbies outside of school, and push themselves to try new things. I have also tried counselling, and have to admit it didnt work for me. I found it not quick enough to answer my questions, but that may be a case of not finding the right counsellor. I felt that I wasnt being told anything I didnt already understand. I do feel though that I should have another crack – the thoughts and worries can be overwhelming. My wife has also spoken to various people, from counselling to healers to other alternative processes. They have worked wonders for her, and created a zen feeling for her!
Friends and family help a great deal, and I do appreciate that we are fortunate as a family to have a great circle around us. They have supported through the really low times when she has been hospitalised, and during the times when my wife just needs someone to take her shopping. It can be tempered with a warning though. Not seeing her on the day to day does lead to people not understanding her limits. Even an hour of talking will wear her out, and sitting in a car for a long period of time will lead to her feeling unwell. I dont want that to come across as ungrateful as we do appreciate the support.
Control is an interesting point. In our household my wife has always been in charge. She was always the one in control, and still has that, at least for moments. She has very lucid times, where she will be doing everything all at once, tempered by times shortly afterwards where she crashes. Every day will be a series of highs followed by a series of lows. So we do give her control, but have to be aware that it may not last.
However, I do see how control is important. For someone who has lost so much, there is a real need to put your arms around the bare minimum. Losing your job, your eyesight, and your independence means you cling to any small thing that you can control. And that is also true for the rest of us. We have to control what we can, living in a life that is a maelstrom of emotions and health issues.
It is tough watching as she sometimes struggles, but we need patience. Helping to make things easier, and picking up the pieces afterwards are a great help. However, I find we need to be watchful for the independence to go too far, as some aspects can become obsessive. Cleaning in our household is a prime example, and sometimes the smell of bleach can be overpowering. But, this is just a way of owning your life and being the boss in some areas, when you cant in others.
But back to how I cope. Short answer is that I dont think I do. Yes, the children get to school, I go to work, and we make it to the appointments. But scratch beneath the surface, and I lack motivation at work, but get annoyed with myself for that. I know what I need to do, but cant push myself to do it. Jobs at home dont always get done, as my mind is elsewhere. Finances are an absolute mess, and we are barely getting by each month. Having gone from two salaries to one, with all the extra expense needed is crippling. We are lucky we have health insurance, otherwise treatments would have ended long ago. We dont have as much of a social life as we used to, but I still like a drink at home.
Put bluntly, I dont feel our lives are advancing. I see friends moving forward, doing exciting things, making something of themselves, but feel I am stuck in a rut, unable to get out. This is why I dont feel I cope.
Others say differently. They are amazed when they hear the full story of every meeting with doctors, every round of treatment, and being able to make our children have a happyish life. That is an achievement in itself.
Coping is different for different people. And alot depends on what your expectations are. At the start of this post, I talked about sometimes we fight the battle in front of us, without realising how big the challenges actually are. You just eat them up one mouthful at a time. So that is really how you cope. You take what comes at you and overcome that, before moving on to the next problem and dealing with that.
One last comment – trying to switch off is really important. The mind needs to be occupied, and keeping up hobbies and interests is vital when under stress. I read, and listen to music, basically perfect introvert hobbies! I’m not a great sportsman, but go running when it isnt freezing cold. These all help combat things. And if you feel like helping with that process, there is a buy me a coffee link you can click on. Anything is appreciated as a sign that people do care and are interested. Thankyou.
