Christmas 2021

Christmas will be home alone, again. That was always a positive, a special time for Jean and myself, reading, listening to music, phoning family and friends. That will still be the same, a sabbath rest without guilt about jobs around the house. But with Jean now unable to have a conversation, it will have its lonely side. Cards are on route, around 80 of them. If I have missed you out, my apologies. Rather than write lots in every card, I am setting out our news here. There won't be any foreign holidays described, or even British ones since we are basically stuck at home. The carers persuaded me to put up a Christmas tree. It cost £50 online, five foot tall, lights integrated. The photo is of Jean's last real tree 6 years ago, a nice memory.

We have all had a tough year so no complaints from me. January 2022 will mark two years of housebound lockdown, which takes its toll, although social media, phone and email have left doors open to the outside world. Jean my wife suffers from brain damage and paralysis and I am now in my 6th year of caring for her in this state. A carer company give me an hour to get her up and an hour to get her to bed (her teacher pension funds it) and occasional hours for shopping, dentist and so on. The garden has suffered and I still need solutions  to maintain it. Jean had to go into hospital for ten days a short time ago to recover from dehydration. She looked very frail and the doctor warned me to expect the worst. I went in every day to get her eating and drinking again, but it was a close call. She is now eating and drinking well again but gets tired and lethargic. We had our 52nd wedding anniversary in August, without celebration of course. I notice that when returned from hospital Jean said 'I want my husband' so I guess I am in there somewhere. When briefly in an awful care home, I heard many women saying such things. Very sad. Have had no trouble with online shopping slots. Waitrose have us as 'protected' which offers priority bookings. We couldn't have managed without it.

Touch wood we have steered clear of the dreaded virus, largely by being very careful. I am having a go at future proofing the house, and have solar panels, renewed roof insulation (current stuff now 70 years old),  a refurbed drainage system and a renewed damp proof course. Well, we can't spend money on holidays nowadays. I am sure painting and decorating will come next. Decluttering is not as easy as it sounds, particularly in these covid days.  The attic has been emptied so now I need to wade through tons of stuff. I don't think I will need school and university notes, paraffin lamps, victorian sewing machines and heaven knows what else. 

I have managed a little writing, ending a long term project reviewing and republishing children's adventure series (seven introductions for Malcolm Saville thrillers for Girls Gone By Publishers). In addition I wrote an article for EJOLTS (Educational Journal of Living Theories, 14). I wrote a short piece on 'a week in the life of an unpaid carer' which went a little  viral and brought me into carer support groups. I am lucky to have survived six years of it relatively unscathed and have accumulated many online friends.

Some of you might know I had a long term stalker making death threats and dialing 999 to accuse me of abusing Jean. He tracked me for years via Facebook, creating more than 20 fake accounts. With police help we tracked him down and made his life very uncomfortable. My twitter account gave me a safe space.  It has been good to share ideas with people I have never met, and probably will never meet. Networking works differently today, even more so after these Covid -  Zoom years. Good also to hear from many old friends in real life. My cards have been on my desk for three weeks but haven't made it to the post yet. They offer Season's Greetings so should arrive between Christmas and  New Year.

The two cats are 17 now and ailing with hyperthyroidism. This requires 2 tablets a day, each. Fortunately they are insured. One is doubly incontinent so I have to sniff and locate throughout the day. After her return from hospital, an episode happened which necessitated the call for an ambulance. She was fine, but in the half hour this was happening the cat pooed on the kitchen floor. The paramedic photographed it, reported it to social services in case I 'needed support'. I didn't, but has inspired neurotic daily cleaning! I invited social services to check but they haven't so far.  Yesterday the house was very tidy. Today the attic is empty and I have to check through 50 years of papers and stuff, including school and university notes for both of us.

Best wishes to all friends and family. Thinking of you all. Happy cooking, reading, listening, viewing and whatever else turns you on! Keep in touch, if you can.  Stephen

A Week in the Life of a Full Time Unpaid Carer.

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:

Twitter comments:

1. It's good and explains the day to day sheer grind well. Without self pity.
2. Beautifully & gracefully written, Stephen.
3. 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.
4. We love to welcome fellow carers! Thank you so much for sharing your story Stephen x
5. 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.
6. Thank you for sharing this. It shows just because we call something a routine, the consequences, effects & experiences won’t always be identical. 
7. 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.
8.  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.