I’ve been poorly for the last week with headaches, coughing and just so weak. Obviously I stayed out of the Home for that reason – definitely not something to pass around old folk.
I was missing Mum, so phoned to explain and Susan (a key-worker), told me that Mum had had two visitors. I was desperate to know who they were, so she checked the visitors’ book. It was Mum’s sister, Julia, and her cousin Pauline. They found her unresponsive, thin and sleepy, but I think Julia was glad to have gone. I haven’t heard from Pauline. I felt a bit jealous, but I have to wait until I am better.
When I finally went back to Mum, just over a week later, it was school holidays and Conor came with me.
Mum has a urinary infection and has been put on antibiotics. Conor was great with Nana and managed to give her a few hugs and kisses without being too concerned about her lack of response. She seemed especially hot, but with the antibiotics and the paracetamol she will be fine. She ate her dinner as slowly and steadily as usual and Conor seemed to enjoy the general interest of the place. I couldn’t keep Mum’s head from flopping onto the table and my left arm is aching now, having used it to keep Mum’s head propped up whilst feeding her.
I have arranged a proper meeting with Susan to talk about end of life issues on Friday morning.
Susan was as reassuring as always (I was delighted to read that she got a ‘nurse of the year’ award) and she had some forms for me to go through, as we sat out in the sunshine. She talked me through the resuscitation question that I had been through before with St Peter’s Wing.
I don’t have a say in the matter still, but fortunately I agree with the policy in principle – i.e: if she is dying, do not resuscitate, start invasive surgery or put on life support; but any other accident or sickness should be dealt with as thoroughly as with anyone else. It is a ‘best interests’ principle.
The questions on the form are about what Mum would wish if she should be dying – elements of care that are important and what she would and would not like to happen. I’ll try to rope Debbie in to help me fill this one in – or at least to check that she agrees with what I write.
I asked about what would happen from the Home’s perspective if Mum were dying. I don’t want Mum to die in hospital, if at all possible and I do not want her to die alone. They said that I can camp down in her room if it seemed best to me. They can’t do intravenous fluids, as they are a nursing home – if they were a residential home they would be allowed to. How loopy is that?
I have decided that it would not be good to bring Mum home for her final days – it would be too traumatic for her and not as comfortable – I just don’t have the resources. I’ll just move in there instead. I can hold her hand, read her scriptures, play her music and keep her lips moist. They cannot tell me how or when it will be… but they think they will know from experience when the time is near… Death is all such a mystery.
At the end of the meeting I didn’t feel over emotional at all. I felt much clearer and more at peace.
We came back indoors and I sat with Mum and Annie (another resident). Fish and chip day on Friday – not the same as chip-shop chips, but good. Mum was not quite so floppy and the strain on my arm much less. Annie hardly stopped talking; she’s like a child in her simplicity and demanding nature. I managed to distract her from banging everything by simply engaging her in conversation, but it meant that Mum didn’t get much out of me. I don’t think that matters, as Mum does listen and it is probably better her hearing a conversation than listening to the banging, or to my one sided ‘conversation’ aimed at her. George and Cecil sat together on the next table so I engaged them too and it was suddenly quite sociable and pleasant in the conservatory.
I sat with George and Mum at lunch again today. Mum was so sweet and seemed very happy. I didn’t want to leave her. She was sitting up more and opened her eyes from time to time. She was also squeezing my hand tenderly, which felt good. Sometimes I feel particularly protective of Mum and very close – this was one of those days.
I have spoken to Debbie about the ‘end of life’ forms and filled them in as well as I can.
I decided to finally go to the doctor and see if they can prescribe me something to get me through this current depression. My back has also been very painful and I just want to lie down, read or sleep. I am finding Simon very difficult too – he is just not ‘available’ most of the time, and rarely emotionally available. I have been feeling very alone and needing some company and some emotional support, but not finding any. I did not want to resort to medication, but I feel I shall have to give it a try.
It was not a good idea after all and has made me worse. I was in bed for nearly a week with some visits, chats and cuddles from the boys and an occasional “Can I get you anything?” from Simon. I felt like I might never get up again. Isabelle then came to see me and she was very cross. She went straight to make me another appointment and took away the medication, which she thought had made me worse. My back was in agony, I was feeling sick and my skin was peeling off my upper body. The doctor said I should rest from the medication and then he would try me on something different.
Mum doesn’t slide out of her chair so much any more. She has a new trick instead – now she flops her head into her dinner. Sometimes she is amused, but of course it is also very messy. She seems more alert too, which can mean that she is more responsive but sometimes she shouts and gets cross with everybody.
I took Monica again today and we had a much better time. The other residents are very entertaining and responsive to visitors, so it livens up the atmosphere with someone as easy going as Monica. Mum was flopping her head into her food again but was alert. After seeing Mum we stopped at a pub in Cotgrave for a carvery lunch. It was lovely to be out doing something relaxing with Monica and not just being in hospitals and meetings. Monica hardly complains about her own health, but I don’t think she is well yet.
Simon has made more of an effort recently and we are spending more time together again. I think I am better on this new medication too – much lighter than I was.
Mum has been fun of late. Yesterday I got her to stand up twice and managed to walk her into the lift to go back upstairs. She was tired out after that and flopped like a rag-doll into her wheel-chair. She was in great humour though.
Debbie, on the other hand, is very stressed out at the moment and is struggling. At Camp I was sending encouraging texts, but suddenly decided that I should make the effort to go up to Orkney and spend some real time with her. She is delighted. Simon won’t be coming, but he is letting me take the car. I am excited about the trip.
I am also very excited about a new business prospect, as we desperately need an income. When we returned from Camp, I took my films down to the photo shop in Netherfield for processing. The owner had a notice in the window: “Business for sale – Enquiries Within”, so I went in… She has another business and so is hoping to sell the photo shop. We talked and I have been thinking hard… I will need to find £12,500, but Simon says he does not have any money. Hannah works there and wants to continue working 2 days a week – that would give me time to still see Mum and do stuff at home. The owner would train me up before she left….
I have to give this a go. I can just about manage to scrape the money together to buy the business and get me started. Simon does not seem as excited as I am. He has made it clear again that he does not want to be a house-husband, but at the moment he is always in his office or shed, the boys do their own thing… I love photography and I could be of service in the heart of the community. And I would still be home to make dinners and clean up and still be able to see Mum. I am very excited and nervous. As soon as I get back from Orkney, I will start my training at the shop so that I can learn as much as possible in the 3 weeks before the owner leaves.
The trip to Orkney was fantastic in so many ways. Debbie is living in a beautiful bungalow just 10 minutes from the heart of Kirkwall. She is continuing her trade as a tiler and is rapidly making a good name for herself there. We spent lots of time together, talking and looking at old photos and memories. She is pleased for me in my new business venture.
We also went over to Graemsay. Our ‘Clett’ looks great since its face-lift and now houses one very happy tenant. We visited Dad’s grave and all the inhabitants of Graemsay, who were eager to hear news of Mammy. They really love her and we shed a few tears there.
I did lots of sight-seeing with the boys too. We went round all the amazing ancient monuments and had great fun driving over sand-dunes and playing on some remote beaches. The boys kept shouting “Fun Mum” as we drove happily about. It was such a well-needed break and great family time.
I came back armed with so much to share with Mammy, but she was not able to understand a word of it. Mammy no longer knows anything about Orkney and her life up there. Nevertheless, I passed on the greetings and love as requested by the inhabitants of what was once ‘her island’.
There have been significant changes for Mum since I’ve been away. She is now a permanent resident of the upstairs ‘nursing’ part of the home. The lounge there is much quieter than the one downstairs and she no longer has to use the lift. Her super-chair is there too – so she is usually to be found reclining in that, in the corner of the lounge. There are some very sweet souls in there.
Monica and Wendy have both been to visit whilst I was away and they also think that she looks very comfortable. Mammy doesn’t say much at all now. She smiles, cries, frowns, grumbles and giggles, but not much else. She still seems to love chocolate, love music, but to dislike other noise.