Caring for my Mother: a day in the life: 14th November
I wake up just before 8 o'clock. It's almost a month since the winter clock change, and I seem, finally, to have adjusted. But I did stay up last night till nearly 1 am. I wanted to be sure I'd sleep, as the night before I had my compulsory, once-a-week sleepless night. Anyway, I've slept a bit late, so I go straight into Mum's bedroom, parts of my brain still not fully awake. I carry the commode from the living-room, struggling a bit to get it down the two steps into her bedroom, past the metal wheelchair ramp, which is folded in half so it only takes up half the space on the steps. When my brother and his wife stay to look after Mum, they leave it out all the time and walk up and down it, but I don't like the way the metal bends under my weight as I walk on it, so I fold it. It's a good design, folding up like that, and even has a carry handle, so you can move it around.
I pick up the bedpans from the stand by the bed and walk round to the bathroom. Mum opens one eye and stirs as I go past. Only one eye-lid ever opens properly, these days. I think she must have had a tiny infarction, or whatever they call it, that has affected that eyelid, because it's always drooping these days, even when she's wide awake.
I empty and clean the pans, dry them and return them to the stand by the bed. I made that stand. It's a prototype of a small table I want to start producing, when I can get my life back. It has a few faults, and the metal tray on top of it spoils the look of it but at least I know the basic idea works OK.
My shed, where I make things, is the best change of all that has happened over the past year - since Mum arrived back from a couple of weeks in Scotland with a pressure fracture in her lumbar spine, after staying with my brother and his wife. This time last year, she was sleeping in the living-room, and I had to bear-hug lift her from bed to chair and back. I bought her a new bed, with electric sit-up and a special mattress calibrated to her weight. Now she's back in her bedroom, new bed replacing the old, huge, king-size one. The new bed takes up a fraction of the space used by the old one, leaving the rest of the room to put wheelchair, commode and other tables and surfaces for me to keep thick panty-liners, body lotions and toilet rolls.
She almost collapsed again in the summer on her way through to the bedroom – again after my brother and his wife had been looking after her. (Not that they were doing anything wrong) So my brother was still there, to pick Mum up in his arms and carry her to bed. That was when we got the wheelchair ramp, so I could wheel Mum between bedroom and living-room. I can't carry her, though she only weighs just over 6 stone now. We had to move her telly and chair down into the bedroom for a while, till the new ramp arrived. We got rid of the dressing table into the garage to make room for everything. I didn't bring it back in once the ramp came and we moved everything back to the living-room again. Who needs that kind of mirror anyway? As a woman who has never sat down to do my hair or apply make-up, I only see a piece of furniture like that as in the way. So it's still in the garage and the space where it used to be is occupied by the wheelchair. This time it was her lungs that were the problem, not her crumbling spine. The latter seems to have stabilized with her new treatment for osteoporosis. But her chest cavity has filled up with fluid, which presses on the left lung. They've drained it now, and she's stopped coughing all the time, but has not regained much strength.
My mind turns while I help Mum out of bed – sit her up, carefully folding back the duvet so it's not in the way of her feet, or catching on her arm as she works it into the sleeve of her bed jacket. Her elbows are dark red with bruises that never go away. She says they're from when she levers herself around in bed, or sits up to reach her cup of water or the bedpan. Slippers onto her feet, one, two, shuffle forward to the edge of the bed, careful not to catch my bare toes on the blocks that prop the bed up higher to make it easier for Mum to stand. Right hand under her tail-bone, left gently under her armpit, sense the moment when Mum's feet are on the floor and push up. I lean, rather than push, using my whole body gently to raise her to standing. All my years of contemporary dance pay off, as I tune in to her body's shift of weight. A short shuffle/swivel as she turns her back towards the commode, grasping the handles on it and lowering herself as I swiftly pull down her knickers. I just get them down before her bottom lands on the raised,padded seat. So many things you can buy on Amazon. I know the corporate, global bastards don’t pay their taxes, but I thank God for them anyway.
Mum wees, then sits there. I go to the little dressing-room that leads off the bedroom and turn on the heater there and open the curtains. We need the extra heat as Friday is bed-bath day. No more showers now. I can't believe she was still using the bathroom last year, though she really used to dread the scary step-up and down into the shower. Now the shower cubicle is full of things, the disabled toilet-seat that used to fit over the toilet in the bathroom, with the new bed hair-washing thing draped over it.
Mum says “Go and put the kettle on,” as I return and hover, waiting for her to finish. I hand her the toilet roll and go through to the kitchen, fill the kettle and click it on. I go back and open all the curtains in the living-room – they'll have to be drawn over again once Mum is in there, but I like to let in daylight for at least this time in the morning, even if there isn't a plant in there to need the light. Mum's eyes can't stand direct light now. The specialist said it wasn't a characteristic of glaucoma, but somehow old people seem to get like that. I soak in the daylight and glory in the open view over the small valley. My eyes are getting to the point of becoming more opaque, and starting cataracts, so I desperately need all the daylight I can get, to see.
The kettle's boiling and I return to Mum. She's ready and I help her stand, pants up, swivel/shuffle and bottom down on the bed again. Gently lift her legs as she swivels to lie down, weight on those bruised elbows
I pull the duvet over her and pick up the pan from the commode to empty down the toilet. I'm more intimately acquainted with my mother's bowel movements than my own, though I've been dutifully completing a test for bowel cancer this week, which the NHS sent to me through the post. O joy! At least I've reached the age where I no longer need a pap smear test every 5 years. My last one this year – I'll be over 65 by the time the next one is due.
I potter off to make tea, leaving Mum to her breathing physio exercises.
Back in bed I muse and sip tea. I turn on my smart phone and check emails, Facebook, scan a digest of the Guardian newspaper. I try to read Dickens for a story-telling event in December on Second Life. But I pick up my phone again and start to play Diamond Digger. It's like a drug, soothing my brain, allowing me to think, but mainly just wasting time. Holding the phone makes my thumbs cramp up. My hands feel arthritic, but it's mainly muscular. When I go for cranial-sacral treatments, she eases out the cramp and my hands are pain free. Foolish to self-inflict but, like I say, it's a drug.
I plug the phone into the charger while I play and think about my carpentry project and my friend who is in hospital as an emergency admission. I have my shed in her garden, rather than in the garden here. That way I can really get away and concentrate on what I'm making, without feeling that every time I go into the house for a cuppa tea, I'll be back on call for whatever Mother needs.
I'm making something for the dance company that is somewhere between a prop and a set. A large piece that is meant to morph from being a free-standing door to a bed, to a table. It's too big to fit into the shed, and I've had all sorts of problems with making it, but I'm on a roll with it. I want to finish this stage of it before the rehearsal tomorrow. I've had to miss quite a few of my valuable days off when I would have been working on it, for hospital visits for Mum, a brother visiting, all sorts of things, each small enough in themselves, but creating a sense of frustration in me as all my plans get cancelled for other peoples' needs. I know what I'm like – once I'm on a roll don't want to stop for anything, even to feed myself, let alone go home and cook a meal for Mother. I was horrible to her yesterday. I was so engrossed, working on it that I didn't notice how late it was till Mum phoned me. It was 2.15. I'd only meant to be there for a couple of hours. Quite unreasonably I was furious. After all – even after a late breakfast, 2.30 was late for lunch. But I felt so sorry for myself I just didn’t want to be reasonable. I raged homewards and threw together a lunch for us both. Everything had gone pear-shaped with the day. When I'd arrived at my shed, my friend, my best mate, was sitting in her park-home crying. She'd been vomiting blood. I thought it was because of all the ibuprofen she'd been taking, because of her very painful foot. This is so horrible. Of course I'm concerned -very concerned. But she won't go into hospital till she's arranged for someone to look after her dog, and I can't do that for her. By the time I get into the shed, I'm already an hour behind schedule.
So, here I am, Friday morning, and still not finished what I wanted to do, musing about whether I can spend a couple of hours in the afternoon in my shed. Friend finally went to hospital after vomiting blood again, so I can just get on when I get there.
I think Mum's finished her exercises, so I go back into the bedroom and begin to get ready for her bed-bath. I apologized to her last night for being horrible to her, so it's not between us. She's more patient with me than I am with her – these days. That's another thing that's turned full circle since I was a child.
We know the routine of this. Mum turns this way and that for me to wash her back right down to her bottom. Baby-wipe for 'down there', towels on the half of her that's not being washed. She looks so defenceless, lying there naked, carefully washing her ears with the flannel, her arms, chest and belly. Then my turn on legs and feet, carefully altering the amount of pressure I put as I stroke down the front of her shins, where the skin is delicate and covered in permanent bruises . I get the inflatable bath thing for washing her hair and place a waterproof bed-protector under her head. Then nestle her neck in the gap in the rim for it, and fetch warm water and shampoo. The hair-bath is meant to drain off into a basin in situ, but I found all that does is make it leak. So when I've finished I take the whole thing, water and all, out from under her and walk quickly with it to the bathroom, my hands barely keeping a grip on it, covered in water as they are. One day it'll slip and water will be everywhere. I tip it out and return it to its place in the shower to drain off.
I come back to Mum and begin to apply body lotion all over her. E45 on her back, special anti-bedsore cream on her bum. Turn on back, she rubs in the Nivea moisturiser to her arms and torso. I put it on her legs. She wants me to apply it right at the top of her thighs, but I am uncomfortable putting my hands there.
I select a clean silk undershirt and knickers. Make sure my hands a free of moisturiser before I put the pad in her knickers, or it won't stick. It's clothes-change day.
“Do you want to wear some of the new clothes?” I ask.
She got a 25% discount voucher from Daxon catalogue because it was her birthday. It's ages since she bought anything new, so I got a couple of sweaters and 2 pairs of trousers. I select them and start to ease the clothes on over limbs that are still clingy with body lotion. Once dressed, Mum lies there and begins her exercises. I grab up anything I think needs washing, but the washing-machine has been playing up, and I need to call someone to come and look at it. More stress.
I get the living-room ready. Take Mum's neck cushion off the arm of her chair and stick it in the microwave. Draw the curtains closed; re-position Mum's lumbar cushion; pull the fleecy seat-cover straight; position the walker just so; ready for Mum to get up from the wheelchair. Back into the kitchen to start putting the pills out. I can see Mum on the bed from that position in the kitchen, so watch out to see when she's finished her lying-down exercises. In the summer, when I had my brother and his wife here, they talked incessantly to me while I was trying to do the pills and I couldn’t keep track of what I was doing. The year before, when they came to stay and Mum was still reasonably mobile, I left her sitting on the toilet, then forgot she was there because my sister in law was talking so much.
I see her begin to lever herself up to sitting and walk swiftly across and down to her. I help her sit on the edge of the bed and leave her to her neck exercises. I grab the commode and carry it up to its place in the living room, go back, collect mug and Ventolin inhaler from the bedside table, toothbrush and spit-pot from the sink and back up to the living-room, everything in its day-time position. Everything is carefully placed just so, as Mum finds them more by feel than sight these days. When the carer comes, she empties the waste bins on either side of her bed and by her chair, then puts them back in the wrong places, so I come and find a neat pile of used tissues lying on the floor 2 inches to the side of the bin.
I hover while Mum rotates shoulders, turns her head from side to side and rotates it. Her right foot moves in company to the movements of her head. I place her comb beside her on the bed and slip on watch and alarm button thing onto her wrist. She finishes these exercises and carefully combs her still-wet hair.
I help her stand and get in the wheelchair. I forgot to fold out the ramp, so I go and do that. Mum struggles with the footrests on the wheelchair and almost pulls one off. I get her feet right and turn her round to wheel up the ramp. Coming out into the living room feels like coming on stage or something – like- ta-da! All that preparation and here we are! Park just there, footrests swivel, feet on floor, walker (a second one for this room) stand, swivel, and sit. The armchair is raised up to its highest point. Mum sort of props onto it, groping for the control. I put the wheelchair away by the bedroom door. Mum whirs herself down to semi reclining. New quilt of bought for her birthday over her, TV control to hand, Seretide inhaler, water and spit-pot to hand. She inhales, holds her breath and releases four times then gargles and rinses carefully. Music plays loudly. Always too loud. It's like living with a teenager, though I mostly like the music. I get her pills and slowly hand them to her, one by one. She uses the minimum of water to get them down, but still, she has to drink half a mugful. She doesn't like drinking, so I'm glad to get it down her.
Breakfast now. Usual routine. Banana and special K in a small Chinese bowl. Blueberries. Almond milk. Stir it all in together before I give it to Mum or she'll say I didn't put in enough milk. Place it on her lap.
“Can you do my eye drops?” she says.
I step round her extended feet, shift the walker aside and pick up the eye drops – a new brand that doesn't irritate her eyes like the old ones. Just to hydrate the eyes. She stopped using one of the varieties of drops for her glaucoma about a year ago because they caused too much irritation. I pull up her eyelids, one at a time, and remind her to look up, but she still determinedly rolls her eyes sideways and shuts them as each drop goes in. Back to the kitchen and make tea for Mum. Don't forget a glass of water too.
All done, so I slice bread for my toast and put it in the toaster. I decide I definitely have to call up about the washing machine, no matter that I shrink from adding yet one more stress factor to my overloaded life. I get to the study and switch on the computer while the toast cooks. Let it get its scan over before I need to go online. I usually retreat to my bedroom for my own breakfast, but today I sit at the computer and look up the phone number of the people who sold the washing machine to Mum. They do servicing and repairs too, a good local firm. I find it and leave a message.
It's such a late slow morning because of the bed-bath, I'll have to leave it till after lunch to go over to my shed. I'm anxious about getting on with things. There's a rehearsal tomorrow and I need to finish this stage so I can take it with me. I still don't know how its going to be used, so have no idea if I've got it right. I map out in my mind what I need to do. I've made the door frame, but the shed is too small for me to actually put it up. I did manage to assemble it outside on a dry day and it stood up alright, but I am anxious that it has to be held together with screws, which aren't as strong and stable as proper glued joints. Now I'm making the door which I'm trying to do as light as I can. Someone suggested using fabric but I'm not sure about the fireproofing of that so I'm using hardboard. I've made a frame for it, all I need is to glue it all together. I don't really have a surface large enough to lay it out, so I have to prop everything up somehow. The shed is only 8 foot by 12, I only intended it to be used for making small things, not a ruddy great clunky full-sized door and door frame.
Breakfast over, I set up the nebulizer for Mum. The little machine sits on top of the commode lid. One nebule each of Salbutimol and saline. About 10 minutes. I gently fit the mask over Mum's face and turn it on. It purrs away, its sound competing with the radio. Mum leans back and closes her eyes, seeming to sleep. She always seems to be asleep, and frequently does sleep, her face slack, even with all the curtains pulled - as she can't bear the light. When that's done, brush teeth, then onto the commode. She stays sitting propped with her chair raised till I come back then I take her for a little walk round. She only walks around the carpet now- not round the outside of the sofas – even that is almost too much for her. I hang on to her round her hips, walking in step behind her. There are points where I'm having to put real muscle into keeping her steady.
Then back to the study.
I spend the rest of the morning playing games on Facebook. I know I should do some exercises, stretches and relaxation, even go out into the garden to move, dance, ground myself. It always makes me feel better and I know I need it. But I just can't force myself to do it. I just want to get on with the damn door, I feel stuck and frustrated, so much to do and all I can do is wait to get the time.
I make lunch. Chicken stir-fry. I have to leave easy meals for the carer to cook while I'm away over the weekend, so I do more complex things that need quite a lot of preparation. Once that's over and Mum has had one more visit to the commode, I can finally get over to the shed. It's about 15 minutes' drive. The enforced inactivity of the morning has left me feeling almost febrile, jittery. I glue up the frame of the door which I've already prepared. It's laid out on top of the hardboard, but it's awkward and hard to work on. If only I had a large work bench to lay it out. I inch my way round it to get the clamps on and use picture frame clamps to keep it square. I'm rushing. I'll lose the light soon at this time of year, though there is a good fluorescent light in the shed.
I go into my friend's house to make tea and think. Two of her neighbours have been asking me for news about her. It's nice they're all so concerned, but I haven't the time. They ask if I'm going to stay with her when she gets out of hospital. I explain I have to look after my mother. I've no idea what kind of state she'll be in when she gets out but if she needs looking after, then she can come and stay with us.
I think about the door. My plan had been to staple on the hardboard to the frame, even while the glue was wet. Should be possible if I can keep it stable. But I realize I can't do it with the frame propped up the way it is. This is ridiculous! I should have nipped over in the morning just to glue up, so the glue would have had time to harden a bit, though it takes 6 hours with PVA. I re-think the job and decide I have to swivel everything round the other way. Sighing I go back into the shed and begin to move things. The clamps have to come off as they obstruct me moving it all, but I leave the picture clamps in place. Everything is so awkward, trying to fit it all in. I am regretting even agreeing to do this now. I knew there'd be problems but it was the only way I could be involved in the dance piece as I can no longer go to the evening class, where they work out a lot of the themes of the piece. Well, if it un-glues while I'm moving it I can re-glue and clamp it when it's in position. The hardboard is bending and flapping all over the place. It seems too heavy and floppy for the frame which is made of cheap crappy timber.
One side of the frame snaps at the half-housing joint. I put it all back where it was and put my hands to my face, breathing fast, trying not to cry. Fukfukfuk! It's getting dark now. I don't have the time or timber to make a replacement piece. I swear and cry, jumping about in frustration. OK. Calm down. Think.
First off – I just won’t go to the rehearsal tomorrow. They are actually getting ready for a scratch performance and open-stage event, so they don't need me to turn up with the door. I won't be able to stay for the event in the evening, so will only be helping a bit and watching what everyone else is rehearsing, though it would be useful to see what they want to do with the door. So- cancel that. Tomorrow I'll have a whole day to myself and can take my time. The carer comes at 11 o'clock and again for lunch and tea. So I can get out by around 10.
Breathe! Breathe! Take your time! I un-clamp everything and take it all apart. I'll start again tomorrow and re-think it all. I don't trust the wobbly hardboard, never used such a large piece of it before. Maybe I need to think of a whole different approach. I don't know, my mind is blank. I lock the shed and leave, walking in the dark back to my car. Traffic is slow. It's rush hour so it takes me longer to get home. I'm less stressed now I've made the decision not to go to the rehearsal tomorrow. I phrase the email I'll send, in my head. Not “I've totally cocked up and am in tears.” I decide “unexpected glitch” is a better phrase.
Home now. Cup of tea and biscuit for Mum. Email the dance company. My brain feels overloaded. The combination of anxiety and inaction leaves me feeling unable to interact with anyone. I don't go on Second Life – people would want to talk to me. Even in text that's too much. I watch telly with Mum - Pointless, Eggheads, Strictly Come Dancing, then News on 4 and make supper. Just as I've got supper ready to take to Mum she says she wants to use the commode. I fight back my irritation and pour her soup back into the pot. She takes so long it'll be cold by the time I get her back into her chair. I realize I'm not fit for human company and don't want to blow my top at Mum again. So after supper I go to the study. My phone buzzes. A text from my friend in hospital. “Can you phone D to tell him I'm in hospital and not to come tomorrow?” D is a gardener who comes to us and whose contact details I gave to my friend so she could have him to do some work for her. Her foot has been so painful all summer that it was impossible for her to do much in her garden. He's a nice man but the thought of calling him induces a clamping sensation on my heart. I play a few rounds of Criminal Case on FB while I think about it. Eventually I text her back “Sorry. I cannot face having to take on anything more tonight or talk to anyone.”
A pause, then “OK” from her.
I feel an arse.