It’s a strange twist of fate that we have been caregivers for both of our children. And I can’t help but notice that each of them has suffered from a little-known and often misunderstood condition. In our adopted son’s case, the effect of early trauma and abuse left him with reactive attachment disorder. The Dafter is now struggling to recover from ME/CFS. We were caregivers for our son for about 12 years or so. For the first four years after we adopted him, and while the full extent of his problems were becoming apparent, we tried to care for him full-time at home; after he went to residential school, we (and the Dafter) made a round trip to Edinburgh almost every weekend for three years, and we looked after him during school holidays when we didn’t have respite care.
Then, once Our Son had finished school, there came a period of about two years when things opened up and became easier for all of us. We no longer had to travel all the time, we didn’t have to attend so many meetings with professionals involved in our son’s care. We even began to feel a little bit like a normal family (or as normal as we were ever going to be). I started this blog!
The Dafter had a very difficult first year of high school. A year ago, we took a Leap of Faith and she started a new school. She really enjoyed her first day there, but fell very ill with sinus, ear and throat infections. After four months and several courses of antibiotics, the infections lifted, but the dreadful effects of ME had taken a grip. She went back down a year but was too ill to return to school. She’s had a difficult summer of being very socially isolated and extremely unwell. She’s had to change schools again, on paper at least, in order to access the specialist tutoring team at the hospital. She’s too ill to attend school but she’s receiving two lessons a week at home. We have a great deal to be thankful for, including having received a relatively swift medical diagnosis.
So we’ve been in another world for a year now – back in the world of being caregivers. (I prefer the American term “caregiver” to the British “carer”. I think this is because I came to distrust the term “care”: the “care system” and “foster care” are sometimes anything but caring.) We parent-caregivers are an invisible but large group of people. So I thought, reflecting on what I’ve learned from our particular experiences, that I might make a list of things that help me. I don’t for a minute believe I hold any secret key to getting through it, and I know that what helps me may be of no use to someone else in a similar situation. (Also, I do realise that many people don’t have my own religious outlook, but my list is of what works for me.) So in case a few things may be helpful to others, and in no particular order, here’s my list:
Accepting the situation. This includes accepting that often I’m working to a very different scale of things than other people, or than I was in the past.
Allowing myself also to grieve. It’s particularly heartbreaking to see one’s children suffer, and occasionally I mourn what seem like lost opportunities and unfair circumstances.
Focusing on the present moment: taking things a day, or even 5 minutes, at a time. Trying not to regret the past or worry about the future. (Much easier said than done.)
True friends. People who make me laugh and who show me that “the world is so full of a number of things”.
Thanking God every morning for the gift of a new day ahead, and asking God to bless us in the day to come; and thanking God every night for having seen us safely through the day just passed.
Our family tradition of each giving thanks for one thing in the day at our evening meal. We note these down in a pocket diary and it makes good reading later on!
Trying to be as positive and as practical as possible.
Acknowledging our accomplishments. Things that are unremarkable to other people (these days, the Dafter being able to walk out the front gate to the end of our street and back) may be a big success.
Having a laugh at any opportunity. Joking together, watching funny tv shows, just trying to keep things light. Seeing the silly side of things.
Doing my back exercises every day. I need a strong back now to lift the wheelchair; I used to need strength to manage an out-of-control boy.
Church. One hour of familiar hymns and blessed peace. Being with people who care about me and my family.
Finding fun things to do, together and also just for myself.
Very importantly, having things to look forward to, individually and as a family.
Angel cards. Picking an angel card is useful for giving me a steer and a focus when I’m feeling bereft and/or frightened. We keep them in a little bowl outside our bedrooms. (Photo of one is at the end of this post.)
Reading Norman Vincent Peale’s Courage and Confidence: An Anthology at breakfast. It’s an old book, and old-fashioned in some ways, but there are some great quotes and a lot of wisdom in it.
Gardening and getting out into nature as often as I can.
When faced with my child’s suffering, keeping the idea of their essential wholeness firmly in my mind.
Stretching my legs: going for a long walk every day that I can. Also doing yoga stretches.
The phrase, given to me by Amy Davidson, “What I do for myself, I do for my child.” Every time I manage to go for a massage, or go for a coffee in town, I remind myself of this.
Avoiding taking in or taking to heart too much bad news, either in the media or with other people’s problems. I pray for others but I don’t worry any more than I can help. We subscribe to the Good News Network, which is set as our homepage. There is a lot of good in the world.
When I’m worried about things – which despite the above is very often – I imagine putting my worries into a shoebox and handing it over to God, just for half an hour. Then repeat. In my case, sometimes I need to do this every ten minutes (I read about this on a webpage that has since been taken down.)
Remembering that things always change.
Music. These days, listening to music rather than playing it, but sometimes singing. My tastes are pretty eclectic: classical, country & western, Christian rock, choral, other things beginning with c probably…
Having faith in my imagination and in my ability to dream up ways to pass the time, or solutions to problems. (Usually I rely on divine inspiration rather than my own powers.)
Colour: surrounding myself with beautiful colours, knitting lovely colours, doing puzzles with nice colours, and sometimes actually colouring in a colouring book.
Getting enough sleep or, when that’s not possible, knowing I can function without.
Taking my vitamins. In particular, I find that selenium seems to help my immune system. Selenium is a mineral that used to be present in the soil but has now been depleted due to modern farming methods. B complex is also very good for the nerves.
Accepting that there is only so much I can do sometimes. In my daughter’s case, sometimes all I can do is be a friendly presence, staying nearby, knitting and chatting or massaging her feet. And while I would dearly like to “be more of a help” at times, just being there is actually a help to her. In our son’s case it meant accepting that he needed specialist residential care.
Knowing that other people have it worse. This makes being grateful a lot easier (for the fact that the Dafter can sleep through the night and feed herself, for example).
Remembering my minister’s advice: “Don’t have specific expectations of how this will all turn out,” and “Enjoy her.” Enjoying my child is so important no matter what the circumstances.
Revisiting lovely times in my imagination, for example my birthday trip to Crathes Castle Gardens last year. How many times I have returned to that day in my mind!
When times are really tough, singing Abide With Me (I like this version).
Questioning “shoulds”: carefully examining whether something I think I “should” do or be is actually an imperative.
Not taking things personally, and being quick to forgive. Sometimes even well-meaning people can say insensitive and ignorant things. We were told by several people that all our son needed was a good beating to sort him out. Someone tried to cheer me up by saying that at least my daughter’s illness “isn’t physical”. I just have to let go, and realise that I surely have unknowingly also hurt someone with my own remarks.
Remembering that I can be at peace inside, even when things seem to be falling apart around me.
Knitting. I take Elizabeth Zimmermann’s excellent advice, to “Knit on, through all crises, with confidence and hope”.
Praying. In my ideal life, I would have half an hour of quiet time to meditate and pray every day. In my real life, I pretty much pray constantly on the hoof. But it helps me to “keep the antenna up” in the words of Beth Nielsen Chapman.
Arming myself with patience. There is often no other way, and being impatient is counterproductive when caring for someone. I have faith that letting “patience have her perfect work” is a valuable strategy – whether it’s being patient when leaving the house or eating a meal takes over an hour, or whether it’s being patient watching the weeks turn into months and years.
“This too shall pass”. This is both an expression of hope for the future, and also a reminder to cherish all the good things of the present moment.
Last but not least, blogging! There are so many beautiful things to see and share, in my life and in other people’s. And I’ve received so many kind thoughts and helpful comments. Thank you very, very much.