Village Magazine article, April 2021.
As the Village Magazine came this morning, I set myself the task of writing A Week in My Life, anonymously for privacy. I have cared for my wife during the last 5 years of serious disability (brain damage and paralysis), mostly housebound. The Census set a top figure of 50+ hours for unpaid caring of a dependant at home. 24/7 for 52 weeks comes to 168 hours a week, less sleep time when we get it – 5 hours is typical, possibly broken, so I deduct 35 hours to 133 working hours per week. Across the year that is 6916 hours, unpaid. As a paid employee on a 40 hour week the total over a 52 week year is 2080 hours. The unpaid carer total is thus equivalent to 3.3 years paid work crammed into one. And for no pay. This is for context.
Monday. Up at 7, shower, shave etc. Black tea. General tidying and washing up. Fed and medicated the cats. 15 minutes for twitter, 15 more for emails. My band of online carers have survived the night and tell me how horrible the world has become. I will chat with them across the day. 9.15 carer arrives to help me wash, dress and get my wife up. That takes 30-45 minutes. My wife has little language and no memory so chatting not possible. Her breakfast is banana, bun and then various healthy options. Urgent for the day is fluids as she is dehydrated. Friend from Belgium rang (work) and we sorted our lives out. Urgent shopping so a sitter came in. 2 hours work (I am a writer). 4-6pm her teatime and bedtime. Drinks by syringe throughout the day to rehydrate her. 7.15pm, pour drink, friend is on Radio4, relax. 8-10pm, writing with my supper. At 11pm, she is quiet now. In bed by midnight with voice monitor on.
Tuesday. Couldn’t sleep last night, that will have complications later. Same routine as Monday up to breakfast but managed an hour sleep on the sofa afterwards.. Today’s task is getting to hospital for an MRI scan. I went deaf in the left ear 3 weeks ago, with tinnitus. 10 days on 13 pills a day have wrecked my tastebuds (reflux) and my dry mouth has murdered sleep. Again, a sitter needed. MRI scan done, home to administer cakes and fluids, her bedtime 5-6pm. I hope for sleep tonight. No haircut for 13 months. Time for an episode of Unforgotten now someone has spoiled the ending. Chatting to carer friends online, work, a family phone call, then bed.
Wednesday. Same beginning routine. A word about the carers. They help me for an hour morning and evening, getting her up and putting to bed, both two-people jobs. They are skilled, but not paid a lot. They are organised by a company who ensure someone comes every day across the year, replacing any who call in sick. Organised as a small team, all know my wife well. The cost is close to £20K per year, funded from her pension. Today we have managed to get her hydrated as she had not enough to drink for 2 days. Healthy eating means her diet is planned and delivered across the day, cut into finger size portions so she can be independent. I write a little when I can. I am blessed by can switch tasks without loss of concentration.
Thursday. Another night with little sleep, which means naps later. The monitor was silent, so she is fine. Checked she is breathing, as I usually do. It’s 6am and I get up, it’s better than having cramp and a cup of tea is essential. Time to do the writing I didn’t do yesterday. A friend died today, with issues similar to my wife. I can’t get to the funeral of course. I will send a donation to Parkinsons UK.
Friday to Sunday. The usual routine. Writing finished and accepted. Conversations on line and by phone to prevent social isolation. Made beetroot chutney. Began pile of new books to read, particularly a friends book on Keats the poet. Fears for the future: my health – this has been a bad week because of steroid side effects. Her health, I particularly fear her getting toothaches. Hopes: after 5 years mostly housebound, to get some fresh air and sort out the garden and hope the tinnitus disappears to give me back my precious silence. In bed at 2am, up at 5.30 wide awake and needing tea.
Now a new week to look forward to.
My wife was a keen embroiderer, as here:
- It's good and explains the day to day sheer grind well. Without self pity.
- Beautifully & gracefully written, Stephen.
- Thank you so much for sharing @stephenbigger. Spouse caring is honestly heartbreaking...it rips your soul in two. Welcome to an amazing grp of ppl who support each other online.
- We love to welcome fellow carers! Thank you so much for sharing your story Stephen x
- So hard for anyone not living the life of a carer to understand. You have my deepest respect Stevie and your wife is so very lucky to have you.
- Thank you for sharing this. It shows just because we call something a routine, the consequences, effects & experiences won’t always be identical.
- What a great piece, Stephen! I'm so pleased you're still managing to find time and energy for your writing. I hope it wasn't me who spoiled the ending of Unforgotten for you, as (it's coming back to me now) I do recall I retweeted something from Sanjeev Bhaskar.
- Very much so. With the usual dementias you get time to adjust to every "new normal" as a carer, but in Stephen's case it was an immediate plunge into the deep end. He's done (and is doing) astonishingly well. I'm in awe of him, really.
