Posted by: christinelaennec | September 9, 2012

Being a parent-caregiver: 40 things that help me

Tiny harebells in Cruickshank Botanical Gardens, Old Aberdeen. Summer 2012.

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 Aberdeen 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.

An angel card from the pack we have (by Kathy Taylor and Joy Drake).

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Responses

  1. Wow, Christine, what wisdom, a beautiful post. Your family are so blessed to have you, and vice verse God Bless, Sister Julie xx.

  2. I so loved reading this! What a lovely wise person you are! My best wishes to you and your family!

  3. What a wonderful post! So full of wisdom, thank you so much for this. I’m sure there are many of us who will benefit from reading it.

    Would you mind if I printed off this post to keep in my journal? God bless, love, Tina xxx

  4. Thank you for sharing such wonderfully inspiring ideas. I am not a caregiver to a child, but I am a caregiver to my parents and have found much wisdom in your words.
    Best wishes to you and your family.

  5. Thanks for taking the time to appreciate what you have done or are doing that helps, Christine. While my challenges have been different, I recognized some of your helps as my own and am going to copy what you have typed as a source of encouragement to re-read and share with others. xx from Gracie

  6. This is such a lovely example of your giving and generous spirit- that even as you experience your own hardships, you are still helping others! Having Faith, recognizing that the present is most important, taking time for renewal,- so many wise and wonderfully helpful insights. You have such a loving and positive outlook as you journey down this difficult road, giving others a helping hand along the way. You are an inspiration, Christine and I wish all the best for you and your lovely family. xx

  7. Dear all,

    Ha ha, wise! Well, experience is the best teacher. It’s interesting that those who are carers of people other than children, and those who have gone through other challenges, find some of the same things help them. It’s a post that I’ve thought about for a long time, but didn’t write because I didn’t want to be all worthy… I’ve often thought about writing a book of short essays for carers. I love to write and it seems that God / fate has handed me plenty of opportunities to learn about caring for my children, so perhaps I should try to pass on any encouraging thoughts. The challenge is fundamentally a psychological one, I think.

    Tina and Gracie, please do copy anything that is helpful to you. (If you want to quote this on your blog, just please put a link back here.) I can’t say many of these ideas are completely original to me, in truth.

    Thanks very much for your kind encouragement, everyone. I posted this first thing this morning, and it’s turned out to be a very challenging day today – so all I needed to do was re-read my list! 🙂 Onwards and upwards, or at least sideways.

  8. such great thoughts….amazing all that you learn as you walk through difficult seasons…sometimes you learn more about yourself than you even learn about the ‘situation’ that you find yourself in. Thanks for that link on the reactive attachment disorder. My brother and I were both adopted (we had different biological families) when we were little. I was 2 weeks old when I was adopted. He was 18 months old…I’ve often wondered about the RAD in regards to him. He would spend hours rocking himself on the couch. I am going to look over that page more carefully. 40 years ago, there wasn’t as much known about all of that as there is not. Thanks for sharing.

    • Dear Lisa, it’s so true what you say about learning a lot about yourself. Although there have been some very difficult things about our journey as parents, I do feel I’ve grown and learned through testing times, and I would never want to not have had my children!

      Adoption is a fascinating topic, and I think a lot more has been done in the States than in the UK in the past 30 years to understand adoption and attachment, though the situation is more informed here now. When we adopted our son, the adoption agency never discussed RAD or attachment at all with us. Once we discovered that there was a term that described what we were experiencing, it was an enormous relief. Of course every single individual’s experience is unique. I don’t know if you’ve read the book “The Primal Wound” – it argues that the pain of being separated from one’s biological mother resonates throughout life. I’ve certainly met adoptees who couldn’t identify with that theory – which is good news for adoption! I hope, if you’re interested in attachment, that you find out things that make sense for you. Thanks for having the courage to write about that in your comment.

  9. There’s so much to be thankful for in this post, I think your list is inspiring and helpful for everyone, not only parent-caregivers. Staying positive and optimistic for the future is important, and you can only do that by taking a bit of time out and seeing the bigger picture when you can, which I know must often be very difficult. I’ll be re-reading this one, thank you for your words of wisdom.

    • You’re so kind, Lorna. I hadn’t thought about it in quite that way – keeping perspective. I’m so glad if you find my ideas helpful.

  10. Wise and lovely, Christine. Excellent advice for living.

    • Thanks, Ellen. Most of these things are good advice for living, you’re right.

  11. Christine, your post on Sunday spoke to me so well. My fourth son was born with Down Syndrome over 38 years ago. I had much more worries and heartaches with the other four, once I realized his limits and began to focus on the special gifts he has. His health was always good too. He was a positive, helpful responsible member of the family who did his chores and was fun to be around, giving me excuses to go to the zoo, aquarium, etc. All this declined starting in January 2011 and by earlier this year he stayed in bed half the time, not even listening to the radio or watching movies. All social activities had been dropped. Things fell apart the end of April. I won’t bore you with the rest of the details.Lots of changes had to be made in all of our lives, suddenly! And that’s what I have in common with you. And I will read the post over and over.

    The “Abide with Me” I have heard and sung all my life, but not that tune. It is so beautiful

    A very welcome Sunday blessing. Thank you.

    LindaC

    • Linda, my heart goes out to you. I’m very glad if any of my suggestions help. And I’m glad you like that tune for Abide With Me. I’ll be thinking of you and your family. It sounds like you have done an amazing job over so many years. I hope you can have a feeling of satisfaction or at least of having done all that was possible. Take good care.

  12. There’s so many things that could be said about this post that it’s hard to know where to start.It’s typical Christine in many ways: positive, thoughtful, inspiring, intelligent, sensible, wise. But the thing which makes me put pen to paper (so to speak) and which is more present in this post than any other of yours I’ve read (or can remember reading!), is its personal revelation. Anyone who reveals themselves in such a forum is taking a risk….this is like face-to-face relationships with real people, but so much easier for someone to be critical, dismissive, or even hostile. So why did you do this? To me the answer is clear; it’s because of a real unselfish desire to help people in similar situations by sharing this valuable self-knowledge. But it’s not only parent-caregivers who will benefit from this. It’s also the rest of us who have relationships of various sorts, all of which benefit from your generous spirit and example.

    • Dear oldblack, you are far too kind, and thank you very much for your words. Yes, the whole issue of personal revelation is one I’ve given a great deal of thought to, because I’m not only revealing things about myself, but also about my children. However, I have received their blessing to discuss some of the things they and we have been through to some extent, which I very much appreciate.

      I know that some bloggers receive hurtful comments, but I think it’s worth taking that risk in order to let others know that they’re not alone. I still marvel at how the internet can bring like-minded people together!

      I’m surprised that you say these thoughts might apply more widely than caring for one’s child, but perhaps so… as you say, fundamentally it’s about relationships.

  13. Thank you for that list. I’ve just printed it out and intend to review it for myself and also share it with a woman who is going through a very difficult time physically right now. It seems trite to type a small comment after such a deep post but this is a limitation of the internet…..it is good to hear how God has helped you endure these difficult times.

    • Dear Heather,
      I hope that a few of my ideas might help your friend. There have been times when I have felt completely up against a wall, and yet I have never felt abandoned by God. I’m not saying that I can’t see how people do lose their faith, however. We humans are very fragile in many ways. As Pascal said, we are “the thinking reed”.

  14. This is so beautiful, so hopeful, and so encouraging. For a wide variety of reasons, parents may have to grieve the loss of some vision or version of a child. I’m grappling with this issue right now. Of course, we can’t see how all the issues will play out. Trusting in a good and gracious God rather than wallowing in fear and “what if” is a daily struggle.

  15. Your love, strength and resilience are ever so inspiring to me, Christine. This is amazing learning and so generous of you to share with us. Thank you.
    Luciana


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