(Photo of Dan & I when we first started dating in 1997 – we were 15 years old)
After writing the article yesterday about The Role of your Primary Carer(s), it was bought to my attention by my husband (who is my primary carer) that he needs to be looked after too and that I should explain to my readers how we manage that as well. So that is what this article is about.
When I am unwell, my husband spends all his time worrying about me and ensuring that all my needs are met. His needs run a very late second place and he can become tired and worn down very quickly. For this reason we have plans in place to help ease his burden when the time comes. I should point out as well that even when I am unwell it is really important that I remember to thank him and tell him I love him regularly, it is always a priority for me, even in the depths of depression or mania, I do my best to remember to do this at the very least once a day before we go to sleep.
Firstly, if I am still well enough to stay at home, that is if I am safe to be left on my own if he has to go out, we will schedule our day to allow him some time for himself. If he is working (as he works a two week on two week off roster) the time he is at work actually becomes his down time in a funny way, it is his escape from the stress at home. If he is not working however, he is home all the time and we need to actively ensure he has some down time. As an example, when I am depressed, I sleep a lot, so Daniel can use the time that I am sleeping to do things that make him happy and give him respite from being my carer. We also ensure that he has regular meals, regular showers, time to play with our pets and so forth; that the usual daily activities continue so that he has some continuity in his life despite my illness. I may not be well enough to engage in these activities but it is important that he does.
Secondly, if I am unwell enough that I cannot be left on my own (primarily if I am suicidal or likely to overdose), we come to Brisbane and stay with his parents (or at least I do if he is working). If, however, I am really severely unwell I go into hospital at Toowong Private Hospital where my psychiatrist has admitting rights. You can read about that here. In either case the pressure is taken off my husband because there are other people available to help care for me. Sharing the burden lightens the load and makes it bearable for him. I always prefer to stay at home, my second preference is his parents home and my last resort is hospital (because I hate being there even though it’s a nice hospital it is still a hospital and worst of all it is now a non-smoking environment which makes it almost impossible for me to bear being there). Maintaining normal routines as much as possible still applies, especially for Daniel, as I talked about in the previous paragraph. Being in Brisbane, staying with his parents, really helps us to be able to focus all our attention on getting me better. His mother takes care of feeding us and our menagerie of animals, cleaning up after us and generally caring for us like an old fashioned mother does. She is the closest thing to an angel that I have ever encountered. This frees Daniel up to take care of my every need, looking after my medication, ferrying me to treatments (for example electroconvulsive therapy), appointments with my psychiatrist and generally caring for me, but it also gives him enough time to relax for a while, perhaps watch his favourite TV show or go for a ride on his motorbike with his dad. So all of both of our needs are met, thanks to the generosity of his parents in taking us in each time I get quite unwell.
As I mentioned above, my husband will accompany me to my appointments with my psychiatrist and my psychiatrist will not only fulfil my needs in that appointment but will also check in with Daniel and ensure that he is coping with the pressures of caring for me. He will give advise to Daniel about how much care I need and the kinds of things Daniel can do or get me to do to make it workable. He recognises the unusual dynamic of our husband/wife, carer/patient relationships and he educates Daniel on how best to manage being a carer, at the same time as he educates me on how best to be a patient. It sounds outlandish but it’s true and it helps, it helps A LOT!
Finally, there is one other way that we ease the burden on Daniel when I am unwell, and that is to offload me onto someone else for a day. For example I may go visit a friend (one of few very select friends who I am willing to see when I am in a bad way) or relative. Spending a quiet day with them, not doing too much just relaxing and enjoying their company while Daniel has the time off to go and do whatever he needs to get done.
So I hope that gives a bit of insight into how to take care of your carer, to ensure they are able to continue caring for you without becoming burnt out. It is really quite critical and especially important in my scenario because our marriage depends on us being able to juggle both our husband/wife and carer/patient relationships and maintain a delicate balance that nurtures our love for one another, not depletes it.