Caring for yourself when you’re a carer #MoreJoy
Happy notebook from Present & Correct
Last year Alyson asked me to write about finding joy in the meantime while caring for my mother through cancer. It’s been a while since my last update because I’ve been struggling to sound like I’m ‘joyously’ seeking joy, when the whole pursuit of joy-in-the-meantime is a desperate attempt to survive my personal shit.
I am not alone in this pursuit. There has been a lot of interest recently in ‘sparking joy’, be it from your clutter, or in all areas of your life as seen in The Kit’s ‘More Joy Please’ series. Personally, I find morsels of joy in the tiniest things, which are unremarkable to others but a lifeline for me. For example, losing myself in stationery browsing. I get that going-back-to-school-new-stationery thrill every time I find a beautiful brass Midori ruler, or a cleverly re-designed notebook by Montreal brand Couple d’Idées… and don’t get me started on my love for a fresh Moleskine diary…
To help improve joy-in-the-meantime matters, I’ve set up a monthly #JoyGoal for myself all throughout 2019. If couples can schedule sex, I can schedule joy!
To ring in the new year, I took my mother to see Mary Poppins Returns. While the excursion was a tad exhausting for her (she fell asleep midway through), I re-connected with my inner child and the younger Banks family. Inevitably, I shed a tear when Mary Poppins sang about loss in ‘The Place Where Lost Things Go’, but joyfulness quickly returned watching Disney’s animated bits and the amazing costumes.
In February, I indulged in some self-care by watching more than my usual share of Oprah Winfrey Network shows. Anyone who knows me knows how much I adore Oprah. Her roster of SuperSoulSundays and inspirational guests keeps helping me get through some doom-y moments – like when Bradley Cooper talks about finding joy in everything. I live in hope of future sun-filled vacations but, in the meantime, I’m learning to enjoy the ‘now.’
My March joy goal was to see Ellen Degeneres live in Toronto. I know this makes my make my life sound like I fell down a chat-show hole, but full-time carers and their less-able charges will tell you how joyful an hour of Ellen’s feel-good humour can be. In the concert-style Q&A she talked about her recent return to stand-up on the Netflix special ‘Relatable’ and how following your joy can make the impossible possible. Ellen’s overall message was that it is never too late to live in a way that makes you happy – be it at ages 45, or 60, or older. She argues pursuing your dream life and enjoying your work will help you live longer, enabling even more joyful opportunities.
My life is still unpredictable and largely at the whim of my mother’s health, but I am looking forward to my future monthly joys and the boost they are providing. I urge you to plan your own using some newly purchased stationery, then share them with us at #TNMAmorejoy
Tweet Alexia @thedesignfeedTW
Discussion (17 Comments)
Jodi Brown says:
I’m completely with you on the stationery joy Alexia, a new Leuchturm makes me as happy as when I received a colouring book and brand new tin of pencils as a child.
Very best wishes to you, many of us are in this situation.Boadicea says:
Oh Alexia, I have more beautiful notebooks than I shall ever ever fill and I love every one of them! There really is something special about the smell of a stationery store -and bookshop.
You are a good daughter and are so obviously determined to give your mother the very best care. But you are very wise to take care of yourself too. And who doesn’t love a treat?
I wish you joy, and your mother all the very best.
Mssz says:
Here’s something else to feel good about:
The Road to Wizdom
https://youtu.be/Ei3S8vlZFc8Thank you Mssz ! I have a big smile on my face now, after a really horrible day.
Jackie says:
I am not in a good place at this time and found the comments helpful. I also went back to the comments shared last year between 18 – 20 February.
They have begun to lift my spirits about my current circumstances and not to feel so guilty about my ‘down’ days. I need to work harder to find those moments of joy and to love myself too. I will also have a look at the programmes you have highlighted. Thank you Alexia.
Thank you too AlysonLaura says:
Jackie — I’m so sorry to hear that are not in good place right now. I have no advice, but wanted you to know that you are heard.
Isobel says:
I’m so glad you said this, Laura, because I wanted to say something but didn’t know quite what. Jackie, some days I feel overwhelmed with ‘stuff’ that I can’t change, and other days are fine, even happy, and I wonder why when the same problems are still there! Today was misty and damp, but not cold… the garden birds loved it – sparrows and blackbirds everwhere, a little family of three turtledoves landing, one after another, on a long, thin birch twig (all these birds considered pests in Australia, but I love them!), plus noisy, pushy wattle birds making their presence known and even tiny, squeaky silvereyes just visible through the leaves. THIS is the sort of thing that really lifts my spirits. Best wishes to everyone who’s finding it tough.
Caring for someone close be it a physical or a mental health illlness, is very intense and challenging. Working in the community our multi disciplinary team always supported the carers. Providing respite if necessary and assisting when they needed help themselves. Carers do an amazing job.
Jeanne Edwards says:
Dear Alexia
My heart goes out to you and admire your spirit .
I too had cancer, exactly 7 years ago to the date, which came completely out of the blue – no symptoms etc. I wasnt a carer, like you are with your dear mother as have husband and grown up family. However, I just couldn’t tell my daughter (both sons were aware ) as she had recently given birth to her beautiful healthy son, having tried for years , and undergoing fertility treatment etc . I just felt I could not cloud her happiness and joy . It was a painful decision so one of my daughters in law told her in the end, which I was grateful for. We had a tearful conversation later, but all was well in the end, especially when she brought Seb, on the Easter Sunday, whilst I was still convalescing in bed, and placed him in my arms – what joy – my little Easter Bunny!!!
I take each day as it comes, live life to the full , have a huge circle of friends and socialise a lot. Am still here , having had a kidney and huge tumour removed, but make sure I eat healthily, (cook every day from scratch ) walk a mile each day, put my make up on and dress fashionably (to an extent, as am almost 75 years old!).
Take care, you are a star. Best wishes to you both.
Jeanne
Johanna says:
Dear Alexia,
I was intrigued by the header because I cared for my husband with cancer. In the past five months I found it almost impossible to do anything at all for me. My family and friends kept reminding me to take care of me, too. All I managed is to get family members to spend time with us so that I was able to go to work. Even if I had found someone to care for my husband in the evening or weekend I would not want it. I knew that he did not have much time and we wanted to be together as much as possible. My dear husband passed away ten days ago in my arms. Being with him, holding his hands and assuring him that it is ok to let go is fine was my last favor.Kind regards
Johanna
So sorry to hear about your husband, Johanna. Caring for him and spending your last precious moments together was the right thing to do. Take care of yourself, very best wishes, Alyson
Lynne Collins says:
Becoming a carer sneaks up on you, like illness. My darling husband, once a dynamic big bear of a man has been worn down over the past seven years by a collection of long term conditions and the devastating effect of cancer treatment. Our lives revolve around hospitals, whether routine, or desperate fearful nights in a&e, coping with another crisis. Too many to count. My role is multi-faceted; finding the best clinicians, communication, hands on care and administration. To name a few. Our lives have become smaller and we accept that when we make plans, they may not come to fruition because of another unplanned hospital admission. We both take time for small pockets of joy or relaxation. Well meaning friends tell me to take time for my own care which is challenging. And I have stopped struggling against the change this has brought. And during the dreadful days of pain and fear, my wish is to be with him to provide comfort and reassurance, however tired and distressed I actually feel.
Goddessinthedetails says:
When our house burned down, I found it useful to do one thing that made me happy, each day. It might have been a long bath, or a walk in the woods, but the simple formula helped me. It was harder to make that work when I was long-distance caring for my father with dementia. One of the difficulties about caring for someone with dementia is that they often are not grateful and indeed, turn against the main carer. It is incredibly difficult to maintain self-esteem when the person your life is focused upon abuses and/or belittles you. I actually found an interest in style (rather than fashion) helped with that. I may have felt like a nobody but at least I didn’t look like a nobody, if that makes sense.
I was told by a trichologist…not a hairdresser, who are not trichologists…that hair is like any other part of the body and requires daily washing…as does your scalp. I can smell unwashed hair a mile off…especially if it’s long. It’s not pleasant. You wouldn’t dream of not washing the rest of you daily and your head is no different. The secret is to use a mild shampoo. I’ve washed my hair every day since forever. I don’t have wonderful hair. It’s 65 years old, it’s poker, poker straight, it’s fine and not abundant. But washing it every day has had no adverse effect on it. HIghlighting it for 40 years did. Which is why I allowed the processed hair to grow out and, who knew, I have a pretty decent grey colour underneath it. One rather pleasant and unexpected upside is that I find I can wear colours I used to avoid, both clothing-wise and make-up-wise. Ultimately, the question I asked myself was: when (and if) I’m 80 what do I want more: a full head of grey hair or a half-head of brittle, dry, bleached hair. It’s a no-brainer, really.
Monty 
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Thanks for sharing these comments. Alexia.
Many readers will be going through similar experiences or will have done so.
Your anecdote about taking your mother to see Mary Poppins made me think of taking my elderly mother who was suffering from Alzheimer’s disease to a live matinee of The Nutcracker. She loved ballet as do I plus the spectacle of the costumes, settings and the wonderful music. However when the lights came up it turned out she had slipped her feet out of her shoes and they had fallen down to the next row of seats. The group alongside us were eager to get out, I was embarrassed, my mother less so. I explained the problem and managed to find the missing pumps and get her upright and into the shoes. The others were patient and understanding.
It important for those caring for elderly relatives or in general to have things to look forward to as you describe above. And to schedule levity and self-care into daily life. If writing it down helps good for you. And I wish you and your mother good luck.