It feels like living with a toddler sometimes. Yes, I’m talking about Mum. I am truly exhausted, especially on days when Mr Mason is engaged elsewhere doing things about funerals and documents that need filing. Today, I get up at 7am with a clear list of things I want to achieve. I go down and clear up the kitchen, empty the dishwasher (yes, it’s working again!!) and put the things away. Then the oil man arrives with several litres of oil to make sure we don’t run out. I make him a cup of coffee. I have discovered that a lot of people who work outdoors like oil men and window cleaners rarely seem to be offered a hot drink, especially in this weather. He is grateful but half way through filling the tank has to move as there is a tractor who wants to get by. He disconnects and goes back to the lorry to discover the tractor has done a very nifty three-point turn and has gone up the hill behind us. The oil man re-connects and tells me he is also going that way so he’ll probably block the tractor somewhere else on his route. That’s country life. No shouting, no gesturing or hooting. Just quiet acceptance.
I let the animals out and then feed them. They are in high spirits and clearly don’t really feel like spending much time weeing on the frozen grass so they’re back in in no time and gobbling down their food. I put the kettle on again and then the phone rings. It’s the GP surgery to say the blood tests Mum had done earlier in the week have gone walk about so could we go in and get some more done? She also needs a urine test. We co-ordinate diaries and I put the kettle back on. Once I’ve made her a cup of tea, I take a biscuit from the big tin and make my way to the annexe, leaving the dogs in the main house. The biscuits have been put back in their plastic tray ever since Mum knocked them over in her mania to have them put in a place just-so. She has been telling Mr Mason that if you don’t eat biscuits, they go bad. We think this is a subtle hint that she wants a biscuit, even though she is perfectly welcome to help herself.
She’s in a good mood this morning and we have a chat about this and that. She has forgotten about Dad again, who he is, what he looks like, where Mr Mason has gone and why but she rolls with the punches and I get her out of bed, put her dressing gown and coat on and take her into the main house until the carers come. When I get into the house I can hear Lark doing her best “I’ve been totally abandoned” impression interspersed with short renditions of the song of her people, some of which sound suspiciously like God Save the Queen. I give Mum a puzzle book to keep her occupied while I put a load of washing on. She came to us with very few clothes as she was used to wearing just summer dresses and cardigans inside the house so I’ve been buying warm clothes and replacing bras which were ludicrous sizes and hung like elastic hula hoops around her thin chest. There are more phone calls – finally one from our Social Services key worker (whatever she does). She seemed to think a call would be enough but I suggested instead of talking on the phone, she comes over and sees for herself what our situation is like and what kind of support we might need. It’s a novel concept but she goes with it and agrees to come the next day. I speak to the financial advisor about the sensitivity of my pension company who will only consider not taxing my pension if I can persuade someone to attest to the fact that I will be dead by the end of the year.
The Waitrose delivery arrives which means the conservatory is littered with individual items as they don’t do bags for houses unless we buy them every week which I resent. I have to hurry to get it all put away because the hairdresser is coming, a lovely young lady called Abbie. Right at the part where I put the last things away, she arrives and we get Mum upstairs. She asks questions about the landlord and does he know she’s there? She’s in showing off mode as she says “You’ve got more boxes in there that we’ve got in our garage! You need to tidy up”.
Abbie asks Mum again about the style she wants and when her hair is washed, checks with me about how much should be cut off. There is quite a lot of curl left in it so she suggests she just cuts and sets her hair this time and perms it next time. We all agree. Mum thinks our bathroom is Abbie’s hair salon. Gavin, our ex-SAS Macmillan gardener and all-round-carer arrives to have a chat to see if I am OK and, as he has had experience of his own mother having dementia, can give me some useful tips. Then Abbie has finished and asks me to come and view the finished product. Mum’s hair looks really lovely. A slightly more modern style and less Queen-like. We bring her downstairs and Gavin gives her his hairdressing joke which is about his wife saying she’s going to the hairdresser and when she gets back he says “Oh, it was closed then?” He is a bit of a dinosaur in some respects but a decent and kind man. He and Abbie both leave at which point Mum starts bewailing her hair, over and over again. “What will I do with it?” She asks at least 20 times if she has any hairspray which I confirm she does in her bedroom. The more tired she becomes, the more questions come and there doesn’t seem a minute to do anything because no sooner than you have fulfilled one request, another one pops up. It is exhausting, mentally and physically.
On this particular night, the carers don’t arrive until ten past eight which is very tiring for both of us. As soon as Mum is in bed, I go to bed, too, in pain, topping myself up with morphine and falling fast asleep.
The toddler-like behaviour is showing off when people arrive, telling tales, refusing food on the basis of “I don’t like it”. Have you tried it? “No, I don’t like it”. Picking silly arguments, pretending bad things have happened like one of the dogs has bitten her, saying NO! just for the hell of it.
Other behaviour is more upsetting. Today we discuss the funeral. Over the last couple of weeks we’ve been asked about people who died many years ago and why they haven’t got in touch. “I’m worried about Mark Mason” she says, referring to her son. Mr Mason points out he is her son. “Oh”, she says, processing a difficult piece of information. Sometimes she acts and refers to Mr Mason as though he is her husband. She talks affectionately about her grandchildren very often and particularly wants to speak to Mrs Safaie. Each time we tell her she is pregnant, there is a genuine burst of joy. But the worst times are when she worries about Dad. She hasn’t heard from him. Have we heard from him? We explain each time that he died, that it was a peaceful death and that she was with him. There are never any tears. Today we explain again that he is dead and then go through the whole funeral service, including photographs I have printed out. I sit on the sofa next to her and I show her the rough copy of the order of service, telling her about the music and all the readings. I cry as I go through it. We discuss the music, we talk about who will be speaking, which photographs will go where. I stand up and cross the room to sit with my laptop to answer emails. No sooner have I go there than she asks the same question again about where George is. It must be all of 30 seconds. This time I leave it to Mr Mason to explain it again. I suspect this will go on for some time, particularly about Dad and the funeral although she finds it hard to find her way through a set of 3 inter-connecting rooms.
On the positive side, Mum is much stronger physically. She can get herself out of a chair without help, walk unaided (although she does put on a bit of a frailty show if she thinks it’s necessary) and get herself dressed and undressed if the carers are late. She has accepted the urinary incontinence problem and now wears a pad which is a huge relief for all. Like the rest of us, she is being bombarded by appointments, social workers, occupational therapists, doctors, nurses – all things which are needed but which take up so much time. It’s like being back at the beginning of my cancer diagnosis. And where we go, Mum also goes at the moment until we’ve managed to sort out sitters and encouraged her to join in one or two of the local lunch clubs. I haven’t been doing my speech therapy exercises and I’ve been trying to continue small pieces of work. On Saturday I am booked to record a group of ladies tell their stories of breast cancer for an organisation called EPOC. The night before, I think this is a bad idea. I am not in the right place, I feel crap, I feel tearful and tired. I wake on Saturday and decide this is exactly what I need. To go and talk about cancer as a change of subject, to forget about Dad’s death and Mum’s dementia and deafness. We start filming and the other women confess they feel scared, heart rates soaring, trembling etc. I sit in front of the camera and feel not a tremble. I feel totally in control, happy, content, in a world I feel comfortable in. Now it’s the dementia world which scares me. I don’t understand it or the way the system works. I feel out of my depth. At the recording, Mr Mason and Mum accompany me and are found a comfortable room to sit in with drinks and lunch. I feel I have an entourage – a slightly strange one, admittedly.
This week I am going to speak to one of the local Commissioning Groups and we have arranged for Gavin to come and sit with Mum while we go. With her sitting in the meeting, I can just hear her saying “I used to work at Boots so I know what goes on, what they do”. And thus would be the end of my speaking career.
You really don’t need this (i.e. what’s going on at the moment) but you are coping with your usual humanity and humour. My mum had dementia and I can only say it’s a bloody nightmare but what can you do. I’m sending you a big hug. Karen xx