I wake most mornings at about eight o’clock; I know the time because I have an electric clock by my bed, so even if it is dark I can see the time. At eight o’clock the day-staff come on duty and the night-staff go home. Due to this changeover of people I do not ring my bleeper to ask someone to turn me over; this is something I cannot do myself, and during the night I have to be turned occasionally. I lie thinking about what that day has to offer; it could be visits from certain friends.
What I want to convey is this extraordinary amount of time I have to think – every day I have long moments when I am thinking about who I’m going to see, or which staff are coming on duty, or I think about what I want to write, or about my children and their children, or about Adrian, my husband. My thinking time occurs when I am waiting… for breakfast, lunch or supper, for a carer to respond to my bleeper, or for a visitor to arrive, when I try to recall what I want to say when they do arrive.
I have decorated my room with pictures, some by me, some by my nephews and nieces, and also photographs of my family and of my children when they were younger and now they are adults, and of my grandchildren; and even my ceiling is decorated by mobiles. I also have a whiteboard which, weekly, I ask someone to fill in with what I am doing each day that week – this is essential as I can’t read my calendar which holds this information; so, my daily activities and visitors are there for anyone to see.
Every fortnight I have a full-body massage and physiotherapy, and weekly I see a counsellor. Most weekdays Jill, who is employed by the nursing home, does exercises on my legs and arms. My physiotherapist has instructed her on what to do to help my blood circulation and to stretch my tendons and joints. Every day I have at least one weather report from carers or friends who come in. There are supervised music and movement sessions upstairs for the many older residents but, as the home has no lift, I cannot easily get to the higher floors.
At about nine o’clock my breakfast is brought in to me; as I can’t move my right hand and am not much good with my left hand I am fed my toast and porridge and a cup of tea by a carer. Once I have eaten my breakfast the carer will probably look at my whiteboard and see if I have someone coming in that day; if I do, which is usually the case, they will come back half-an-hour before the visitor comes, to wash me, brush my hair and clean my teeth, and perhaps get me into my wheelchair; if no carer turns up I will wait until about a quarter-of-an-hour before my friend is due to arrive when I bleep for the carers. Some carers enjoy helping me get dressed and put my earrings on and a necklace as well as my engagement ring; we have a laugh and I say I feel like a Barbie doll! I get on well with most of the staff here but, compared to home, I find the early meals and the need for routines like bath-day give the place an institutional feel. At the top is the Matron, not me.
I am got out of bed by two carers who put a sling underneath me and bring in the hoist which the sling is then attached to; I am hoisted out of my bed and into my wheelchair. Once a week I have a bath; for that I need a special bath-hoist and I am lifted, again by two people, with the hoist, into the bath; after I’ve had my hair and body washed I am hoisted out of the bath into a wheelchair and then from the wheelchair I’m hoisted onto my bed which is covered with towels; then the carers dry me, one of them gets a hairdryer and dries my hair, and then I am hoisted off my bed into the wheelchair. Then, you wouldn’t be surprised to know, hopefully a friend will have arrived and I have a cigarette! The delicate subject of how I pee and “go to the loo” should be broached. My control of my bladder became worse as the illness progressed, so now I have a catheter which involves a thin hollow tube going into my bladder which then empties into a plastic bag fixed onto the side of my leg with Velcro straps. To sort out my bowel problems I have suppositories twice a week; I have never heard the staff complain about cleaning me up.
I have a group of seven loyal friends who live in Truro and who visit me at least once a week; these acts of kindness and generosity I find quite amazing; when I say this to them they will say they enjoy visiting me. There was a phase when people told me I was remarkable and I always denied this until I met a man who had MS and told me how he used to play golf and squash; I looked in his eyes (the windows of one’s soul) and saw nothing there; he was deeply depressed. It was then that I realised I am remarkable! He looked back on his life and I am able to look forward, like writing this blog.
When my friend arrives she knows that I will want an immediate cigarette so she pushes me out to the back yard where I smoke two cigarettes. There is an entertainments manager at the home and she sees giving me smokes as entertainment for me. (My husband, who doesn’t smoke, rolls me these cigarettes during sport on television. Adrian is magnanimous in ensuring that I always have plenty of cigarettes ready. He started rolling cigarettes when I smoked joints – now I have a drug that has the same effect). We talk largely about our families and what else is going on in our lives. Quite often my friend or Adrian will check on my laptop whether I have any emails. Now I have a new laptop with Windows 8 which they are not necessarily familiar with so they will explain to me how it is easier on their laptops; during the time while they are absorbed by my laptop I sit patiently; I have written a piece on “Patience” elsewhere on the blog. Visits from other people make me feel stimulated; sometimes they will pick me up in my car to take me out of the nursing home. We might go into Truro or by the sea, or out for a meal, giving me a wider and fresher view of the world. I find that roads with tarmac are the most comfortable to be pushed along, cobbles being the worst.
At twelve-ish my visitors go and I have my lunch in my room at about twelve-thirty. There is a chef who cooks the meals every day. I have a choice of meals, though every Monday, etc. is the same. If it’s Friday it will be fish, or on Saturday it will be shepherd’s pie, and a roast on Sunday. Pudding may be ice-cream, semolina or yoghurt, or creamed rice when I ask for it. We are sometimes offered fresh fruit. Usually after lunch I have a smoke and then I am hoisted into bed at about two o’clock where I lie thinking and dozing for the next few hours. While I am in bed I listen to Classic FM on my radio.
At five-thirty I have supper and at six friends sometimes visit me. By about seven o’clock in the evening I might watch the telly if there is anything on – it amuses me that I watch cookery programmes and gardening ones knowing that I can do neither. I enjoy programmes about the natural world. I sometimes watch DVDs, either ones that people have given me or “Love Films” which my sister has set up for me where they send me a film and when I send it back they send me another of a similar genre. I usually go to sleep at about ten. The night staff, a sister and two carers, start work at nine until the next morning at eight.
I hope this piece can give other people an insight into my life; there are areas I have not written about, like the frustrations I feel and the constant need for help from other people which is also a frustrating aspect of my daily life. In a way I am grateful to be able to think clearly and express my thoughts in this way.
Mary Smith 25th January 2014