Caring is not for the faint hearted, I have noticed that we often join a forum having ridden the emotional roller coaster for too long. We feel exhausted, resentful, guilty, burnt out and more.
It is early days in relation to my husband's diagnosis and I am keen to care for him as healthily as I am able to and am keen to get tips from others as to strategies they have used that have been helpful and I would appreciate if anyone is willing to share some.
I note the Cancer Council has a booklet (link here ) in relation to caring for a spouse with cancer and looking at things from a patient perspective can help us be more understanding.
Together we can be stronger 💪.
Each of these 8 dimensions of wellness can be impacted as we care for our loved ones.
I have found paying attention to each of these areas in life can be helpful. Not necessarily at the same time though, being gentle with ourselves, the aim being to improve our life and not to be further discouraged.
Recognising and naming the uncomfortable emotions that I am experiencing has helped me be able to deal with them. One of those had been fear and I quote from the Cancer Council booklet on "Caring for someone with cancer"
Caring for someone with cancer can be frightening. You may feel
• how unwell the person you’re caring for is feeling
• not knowing enough about the treatment and health professionals
• being responsible for giving medications
• feeling like everything is out of your control
• not knowing what the future holds
• the possibility that the person you’re caring for could die.
Many carers say that learning more about the cancer helps
them feel more in control, while others feel overwhelmed by the
information available. You need to do what feels best for you.
Talking about these feelings with a counselor helps me to manage them. After the initial crisis period of my husband's diagnosis and early intervention by way of surgery I found myself falling into a bit of a heap. Have managed to start moving again and get on with day-to-day living and getting support with some of the harder stuff in relation to being able to practically manage the fears I have.
I have been selfish in being unaware of your own challenges and I apologize.
When I was in community care, coordinating professional carers, something I felt strongly about was allowing the cancer experiencer to have as much autonomy as was safe to do so. Of course this does work differently with various personalities and temperaments. My message was to follow the person's lead. ...hat almost nothing was out of bounds so long as everyone was safe. And in the meantime gently and quietly pick up the reigns as they fall. Keeping a sense of humour helped as well, and also being there when you say you will be....keeping them up to date if you are heating a wheatie up which is taking damnably too long for them..that sort of thing.
One strong piece of information and advice I will give anyone to really, really keep to is to not hide behind busyness to avoid seeing them in the processes of their illness and ultimately their death. I would say absorb e-v-e-r-y single moment, every sound, touch...everything. Thank your grief for being there to look after you but ask it to sit beside you while you do this. You will have the rest of your life to grieve......you will only have the rest of theirs to be there with them.
No need to apologise, when ones heart is breaking, for a time there is little space for anything else.
We are in the very early stages and I wanted to ensure that I do what I can to avoid carer burnout, your hints are much appreciated.
Keeping a sense of humour is one of my specialties but don't think my husband was amused when I suggested we get out our party mullet wig should it be needed 😁. He visibly relaxed when the oncologist said the chemo regimen he would be on is unlikely to cause significant hair loss.
Oh bless him...funny how the first thing we think of is losing our hair.
Knowing now first hand what it is like as a carer, and having sprouted all the text book hints about what to do for a carer I CAN suggest a couple of things.
When someone offers to help...hold them to it. You may feel too overwhelmed to think of something straight away, however, you will get to a point where you feel that you want to ask. So whilst you can think of the tasks which can be delegated so as to give you time for quality time with your hubs AND importantly with yourself. Kick that guilt thing out the door when it comes to 'self care'. And look, it doesn't have to be something exotic like yoga and running 500 kms....or even Day Spa stuff. It can diarising time each day where you read, look out the window, journal, colour in, sit in the sun or moonlight, call someone who makes you feel good. In this way, not only are you experiencing self love, you also 'look forward to it'. This helps the psyche very much. So if it means getting next doors 13 year old to water your garden for a few dollars while you enjoy yourself...do it. I have had to bite the bullet and have a dog walker come three times a week. Being tight fisted I have wrestled with the cost, but it frees up time to have quality time with whoever I choose...the puppoes included.
Hi Darcy, one of the things I started doing when my husband began his treatment is taking multi-vitamins and trying to get as much sleep as possible. Obviously sleep can be difficult, but my idea was to shore up my immunity as much as possible so I wouldn't get sick and would stay in as good condition as possible. Your physical, emotional and mental well being is very important so you can last the distance. Peer support is also invaluable, and there is also a facebook page I belong to called "Caring for husbands with cancer", I recommend it. It's very supportive and active, and full of people who have been through what you're going through. Sending huge hugs, Emily
Looking after ourselves = necessary.
It can be a long haul.
Keeping healthy is certainly challenging for me and I have been comfort eating (over eating). I have been stricter with getting to bed at a decent hour but also getting up when the alarm goes off and not waiting for hubby to get up first (something he always used to do).
I agree peer support is so very helpful and I have joined a pancreatic cancer support group on Facebook.
Outsourcing tasks is a terrific idea. Whether this means paying someone to help out with things like housework /lawn mowing or speaking up when asked and accepting the help offered.
When my husband had a previous serious condition I was so grateful for the house cleaner I had come in once a fortnight.
Be part of this supportive community