A bird in the hand…

I have started the process to make my head space a bit better. This includes 2 sessions at the hospice where I melt down to the extent where I break down so far I cannot breathe and make a horrendous noise trying to force air into my lungs.I consume large quantities of paper handkerchiefs and then can’t find anywhere to put them other than in the hand of the nurse. She takes them without a word or grimace. We decide on a few groups I can attend, one of which is called Words & Pictures because she couldn’t think of anything else to call it. It sounds like a nursery class but I gamely go along, because it might be good and I generally get a good driver to chat to. The car service drivers are usually in their 70s and have a sense of humour and a long list of anecdotes which I like very much. There have been a spate of signs put up recently in red and white, saying ER and looking very official but no explanation. Apparently they are Escape Routes should we get flooded. Another driver took a different view and thought they were something to do with terrorist attacks. I query whether the escape routes are for the general population or the terrorists. The penny drops and we laugh.

Words & Pictures proves entertaining, too. There are two men who are wheeled in and who seem to have dementia and two ladies in their late sixties. I am made a cup of coffee by a lady who was once a client and I used to train for when I ran my own training business. She remembers me and it seems a surreal experience. We play games with words and pictures, as promised in the title, and it’s actually quite good fun. Then we are set homework, to write a poem about something that’s really important to us. I’m not sure how some of the group members will manage but they’re all lovely, smiley and twinkly. After the session I have my first hand massage which is so relaxing and finishes off the session beautifully.

We still have so many visitors to the house; some to do with Brenda, some to do with me, some are for Mr Mason and I and some are for Mr Mason alone. I can’t remember which visitor it is but I know Brenda, thankfully, wasn’t there. The woman sat in the sitting room and was loving Lark who was loving her back and obviously decided she deserved to see one of her jewels. Lark’s jewels are the things she buries in her crate, hides in the baskets of clean washing or buries in the garden. The woman merited one of her highest jewels. one from the garden. Mr Mason and I are in the kitchen making tea and so forth when we hear a cry “Your dog has just put a dead bird in my lap!” Amazingly, she does not have a fit or crawl behind the sofa but when Lark sees we approach with the intention of removing her jewel, Lark snatches it back and tries to bury it in her crate in the hope we won’t see it. Ha! Sometimes we are smarter than a dog and the small bird, presumably killed by Freya, is removed and given a swift burial in the garden recycling bin. Lark sulks for approximately 10 seconds and then is loving the visitor again.

Our second bird story involves Jan, our cleaning lady who has has a few shocks with the dogs in the house (remember the time Lark ate the conservatory blinds when Jan was in charge?). Mr Mason and I had gone to see Brenda and when we got back, Jan was quite twitchy. “We’ve got a bit of a problem” she said and then proceded to tell us that she had heard a noise in the big sitting roon and thought there was someone in there. The layout of the house means that the thick walls stop sound carrying. From upstairs, you can’t make someone downstairs hear you (or so Mr Mason tells me).  We cautiously opened the door to see chaos – china and pottery thrown about the  place and 2 enormous crows in the room. One was still trying to crash through the windows and the other was lying on the ground, dead. We closed the door wondering how on earth we were going to get the live bird out. I had visions of being attacked if I tried to move the dead bird – Hitchcock all over again. The bottom windows don’t close and repeated battering of the top windows, even when open, had resulted in one dead crow. Of course, at this point our trusty ex-SAS gardener arrives and immediately takes control of the situation.  He opens the front doors (which are double), stations Mr Mason at the bottom of the stairs so that the remaining bird won’t fly upstairs and shoos it out the front doors which is does as though trained for this moment. Mr Mason and the gardener set about cleaning up all traces of crow and another bird goes into the recycling bin. I bet the cats were kicking themselves for not ambushing birds trapped in their own house. The chimney breast gets stuffed with paper as far as it can and we hope we have no more visitors of that kind. Unless they get so far down, make a nest on the cardboard and then die of starvation…Hmm. I don’t think there’s an answer to this except to get some roofers to put cowls over the chimneypots.

You may have noticed that it’s been an age since I posted. Writing is one of the things I enjoy doing so it’s a shame I don’t get more of it done but one thing that prevents me is tiredness. You may relate to this. You’re sitting on tube after work or in bed after a long day and think you’ll just get a book out and have a look and before you know it, your eyes are closing and you’re breathing evenly and deeply, well on the way to sleep. It might sound strange but when I wake up, I’m well on my way to sleep. I spend quite a lot of the day trying to stay away. The oncologist says this is because I haven’t had a break from chemotherapy for nearly 2 years and it’s using up my reserves of energy. But I have noticed that I spend more days in bed these days – usually one or two – and the other days I have to go out, get some fresh air, walk around a bit, anything but lie in bed although it’s calling to be even now. Sometimes I’m writing and find my eyes are shut and my hands are still. but I can’t live my life asleep. So we go walking in the woods, trawl through antique shops and the 2 fabulous department stores nearby – Oldrids & D0wn Town and Eve and Ranshawe. The former sounds much more exciting than it is. The Down Town part is in an industrial estate on the fringes of the town and sells the lighting and obligatory furniture. I once went up to a desk to compliment them on a member of staff who had been exceptionally helpful and the two women behind the desk held up their handbags to ward off the evil spirits they thought I was bringing. The other department store, Eve and Ranshawe featured on a Mary Portas series on how to make your shop increase takings and how to find out which member of staff was really mucking the whole thing up by being a cow. Job done. Cow not seen since. My average waking day is around 6 to 8 hours although I do count resting hours in bed as sleeping, mostly because I can’t get comfortable downstairs and will definitely be asleep by 4, waking several hours later for a late supper. I’m hoping this is just a phase and that I’ll recover enough strength if I rest as much as possible, boring though it is.

So that’s the contorted and convoluted version of the last few weeks. I’ve left out loads, some deliberately and some by accident but I aim to write the next blog sooner. Night  night. Yawn……zzzzzzzzzzzzzzzzz


 

A really bad novella

If you’ve slogged your way through the blog from the beginning or so, you will know that there are many things which have happened to us. What, in a tv series or book, would be held up as poor drama – over exaggerated and melodramatic at best, has really happened to us. The initial cancer, the secondary cancer diagnosed a year after finishing my last drug, Herceptin, moving house and going to Thailand despite reservations of my oncology team, managing to get the whole family together for our first Christmas in the new house and then the inconvenient  and tragic death of my father-in-law, just as he had decided to sell up and move to the same village as us, leaving us with my mother-in-law who has Dementia worse than we had even imagined. The next dramatic episode is provided by my father who telephones to tell us he has prostate cancer. Given that we rarely speak, it is momentous news on all fronts. He sounds frail and frightened, my mother having died a few years ago and he having had the benefit of good health for most of his 88 years. Every time we seem to get on our emotional feet, something comes along to knock us down.

This time, I feel trampled down into the mud, not just because of this last piece of news but because of the cumulative crap which has been thrown at us over the last 4 years. I go to my Reiki appointment at the Hospice and just talking to the Reiki practitioner, I break down and I can’t stop. Nose bleed, the full works. It all comes pouring out and I realise as I speak that I need help and am amazed I haven’t asked for it before. It’s like I’ve been blind and deaf to what’s been going on in my head and heart and, were I a friend, I would have been beating myself about the head for being so stupid (in a nice way, of course). There are lots of suggestions that I might take up but this time I am single-minded in what I want and refuse anything but those things that really appeal. So we make plans for the following week and I leave feeling I have achieved something. On arrival home, I explain to Mr Mason that I am broken and I need help to get back on an even track. He looks just a notch down from distraught until I explain what I need and how I am going to get it. Today I’m tearful, tomorrow I’ll be smiling and joking and it can’t go on. I am wearing myself out psychologically and emotionally and not really able to enjoy the health I have at the moment. I feel much better now I have confessed to the relevant people just how awful I feel and they have taken me seriously and come up with an immediate plan to help me. It’s such a relief. Next I go on line and make an appointment to see my GP so he can go through my meds and see whether we should be tweaking, adding or subtracting. My pain isn’t really under control and the Hospice staff say this is unreasonable so should be the first thing to get under control. So that’s done.

The next day I feel much better. On Friday we go to see the oncologist and I explain to him how I’ve been feeling and he tells me to do things I like, go on holiday, dance, do whatever gives me pleasure and to really live my life. I like him even more. He’s not saying “Get it done before you snuff it” but just enjoy your life and although that makes me cry, it’s a good sort of tearfulness. I tell him I would like to see him dance but he demurs.

I’m not claiming I’m going to be a new me. I’m just going to concentrate on myself a bit more (as Mr Mason has been telling me for ages). The bad novella with all the overly dramatic bits, formerly known as My Life has taken its toll and I need to re-group and set myself up properly again. Going to bed at 4pm every day has to stop. Pain has to stop. Exhaustion has to stop. Tearfulness has to stop and melodrama has to stop. That’s it. I’m signing off with one of my favourite tracks and thinking of Les in Brentford (have you seen him lately?)

 

Lark’s Diary XIII

The weather has been yucky, yucky, yucky. The dam opposite the house is all brown and going very fast so I wouldn’t like to fall in, even if I was in a little boat, although I don’t know how to drive any kind of boat. Honestly, I’ve been taught no survival skills. And round the apple tree there is an absolute lake! Where does all the water come from? And the silly thing is, Archie and I have to go out to hurry up so we just add more water, making it worse. Mum really doesn’t like me going in the house. And the other day, I went out in the garden and there was more of that white stuff coming down. I was in the nude and freeeeezing so when I came indoors, I went straight up to Mum’s bed and threw myself under the duvet. She wasn’t very pleased when she saw the muddy footprints on the sheets and she said “I wonder what Jan will make of these?” I expect Jan thought I had thrown myself into a warm bed as anyone else would have done but Mum was muttering things about hammeroyds, whatever they are, and saying it was good the marks weren’t on her side of the bed. Sometimes I really don’t understand her.

I seem to have grown out of lots of my clothes and sometimes they’re a squeeze to get over my tummy. Archie has been wearing his dinner jacket suit but he’s lost the bowtie so he looks like one of those men who go to Church and talk a lot.Yesterday we went out for the day to a new beach but Mum wasn’t happy, even though she had something nice to eat at lunchtime because she saved some for me which was a delicious piece of ham. Archie told me something bad had happened 4 years ago  which is why she is often poorly now and that it makes her very sad every year, even though she doesn’t want to be.  I told him she needs to run about a bit more and I’d even let her borrow my squeaky hedgehog which is one of my favourite toys but he said that wouldn’t help and she couldn’t do the running bit anyway. He told me the best thing to do is to stand next to her and lean on her or, if she’s sitting down, stand in front of her and put my head on her lap. That was I get stroked and she is made happy. Archie is a wise dog, I think, even though I don’t understand half of what he says and he STILL puts my head in his mouth when he feels like it!

A very nice lady came to the house the other day and she was very complimentary about me and stroked me a lot so I thought I would share one of my best treasures with her. I had to go all the way to the bottom of the garden for this one as it was very special and I ran into the house and put it in her lap, expecting cries of joy and praise to be heaped upon me. Instead, she screamed “Your dog has just given me a dead bird!” so I whipped it away quickly and put it in my crate. It was very pretty but I wasn’t going to let her have it if she was just going to scream like a human and not appreciate it. Mum and Mark came in quickly, too, and Mark took it away and I never saw it again which was very sad. Usually Freya catches the birds and then, when they don’t flap around any more, she lets me have them as one of my treasures. My treasures include Jumbones, real bones, birds (when they are not taken away by silly screaming women), socks and an orange that Mum was going to eat. I thought I would surprise her with it one day when she was feeling sad as a dog giving you an orange would cheer anyone up.

The old lady hasn’t come back to the house so I’m not sure what they have done with her. I hope they didn’t take her to Dr Bum as although she was always telling me off and getting me into trouble, she was quite good at stroking when she wasn’t thinking about it. And even if they have taken her to Dr Bum, they haven’t brought her back so she can’t be one of my treasures and be buried in the garden, although that would take an awful lot of digging. I don’t know why humans make life quite so complicated. I’m not sure I’ll ever understand them as well as Archie does.

Living without sleep

Someone asked me recently whether we have settled into our new home and area. I found I didn’t really know what to say so said a lot of “um”s and “mmmmm”s because it’s such a difficult question to answer. Have we settled in? Before our recent bereavement, I would have said yes. We knew where to go for what, had dates in our diaries for local auctions and had started to know the locals. Then, of course, having dared to relax into a light spot of complacency, Dad, bless him, snuffed it and our world became new, confusing and extremely demanding, a likely parallel to how Mum feels.

At present, Mum is having  respite at a local care home which seems to tick all the boxes. It doesn’t smell of wee and cabbage, staff address the residents by their first name and there are some nice cuddles going on. Tempers of staff are amazingly reigned in when the grumpy Mrs H slams the plate of potted meat sandwiches on the table saying loudly that she’s not going to eat these. She agrees she would like sardines on toast which they produce without accidentally dropping it on her head and she then sits there for 5 minutes mashing the fish into the toast until it’s a right mess. “I can’t eat this muck” she shouts and patiently, oh, so patiently, a carer comes to check what she would like for her tea. Toast is agreed, made and delivered. No jam. Apparently it’s the work of the devil. There is a cat on the first floor that day and she aims the end of her stick at it repeatedly. Luckily it is faster and smarter. On Valentine’s Day the staff put on a pantomime for the residents. We arrive as it has just finished and I see a sign saying ‘Fawlty Towers’ over the servery hatch. There is a lot of noise with women crying and some keening, just making primeval noises. Mum sees us and rushes over saying “This is my son and he’s come to take me home”. She has some white powder over her trousers which we later find out is flour and she accidentally got in the way when it was being thrown. She is profoundly disturbed by the pantomime as are many of the residents and I suspect it won’t be happening again. But the staff give their all in trying to entertain them and to make it a good, comfortable place to be with activities, rather than just a group of old people sitting around a tv set (whether it’s on or off). So Mum is settled as she can be.

During the first few weeks when she lived with us, I found myself not only physically exhausted but not even thinking about cancer. It was all about wee, obsessions about combs and handkerchiefs, how to put a cup down on a table the right way, buying her a whole new wardrobe as she came to us like Orphan Annie with clothes of varying sizes, very few of them fitting and many of them having seen better days. We talked endlessly about food she might like and if I disappeared to my office, there was a little voice calling “Shelley” as she wanted company 24/7. It’s all so understandable. Losing a husband of 70 years, being moved from one part of the country to another, having no friends or relatives nearby. One thing she hasn’t worried about is money, fortunately.

But this shift away from cancer was very strange. It’s like my heart can only hold so much pain at a time. I knew in the back of my mind that I was over-tired (a lovely phrase which I have never understood until I experienced it) and that my pain had increased but the most pressing issues were not getting into arguments with Mum, no matter what she said or how she contradicted me. Once she was in bed, it was like a dam bursting and all I could do was crawl into bed and with sleep coming instantaneously. The sort of sleep Mr Mason has so often enjoyed – head hitting the pillow and into the Land of Nod he tumbles. Now Mum is in respite, I feel I am still catching up on rest and  easily sleeping for 12 hours a night but my mind is all over the place. Like at the beginning of primary cancer, I don’t know where I am again. I’ve found myself noticing a tightness in my chest and abdomen, the sort that predicts a fit of screaming to release tension. I’d be ace at that generic wailing music so many dramas use these days. It can be used for science fiction, films about the Far East, historical fiction. It’s one of our family sayings “Here is the generic wailing music again” and “Fresh start”, mostly used in soap operas. Every week someone has a fresh start. Maybe that’s what I’m missing.

But I’m digressing. I’m feeling stuck again. A few months ago I knew roughly where I was going, even though some of it wasn’t pleasant, but now, I don’t know where I am, let alone where I’m going. So the cancer feelings are creeping back in again and I don’t know what to do with them. I feel I can’t go through the deep distress again. Apart from anything else, I don’t want to go through it. I want to get back on the track I was on; the one where I was beginning to settle down, relax, take up hobbies and appreciate what I have and what’s around me. Now I feel grumpy, tired and out of sorts. I don’t want to eat; I’m genuinely not hungry or interested in food. Poor Mr Mason suggests meal after meal and none appeal. In the end, I usually go with what he wants, simply because it seems the fairest thing to do. For someone with a whole bookcase full of cookery books and an interest in all sorts of food, it feels like another cruel punishment I have to endure – and one Mr Mason endures, too. The only benefit is that I am losing weight slowly and gradually. And as for writing, something I love doing, it holds no interest and seems like another chore, especially when my eyes can barely focus on the screen as they are so tired.

It’s common for women after breast cancer to have Post Traumatic Stress Disorder. I suspect this is it, yet again, brought on by another stressful event. It’s hard to haul yourself out of the big black hole time after time when energy is sapped and overwhelming tirednes is the first thing I experience every morning when I wake. So I suppose I’m not settled yet as I’m struggling again to attain an equilibrium which is tolerable.  It will come but it’s taking a bloody long time.

Lark’s Diary XII

Life has been very confusing over the last few weeks. We have been in the car more than on the sofa driving for miles and miles although I don’t know why. And people have been upset, we can tell. Archie has one skill which is better than any other and that is cuddling. And he’s been doing a lot of cuddling these days. I don’t know what happened but one day we were just messing about in the garden and then we were in the car and driven for miles and miles to this house I had only been to once before. Archie said he’d been there lots of times and was quite excited when he saw it but when he got in, he sniffed and sniffed all round the house and the garden and couldn’t find what he wanted. It was a man, he said, who was also good at cuddling and very, very kind and Archie couldn’t find him which made him very sad.

People kept arriving and lots of people were crying. After just one night, we left again with the old lady and went home. I asked Archie why people were sad, including him, and he said “The great man has gone to the park in the sky, to play with other dogs, cuddle and stroke them and throw balls for them” and with a sigh, a great tear rolled down his face. We took the old lady back to our home and she keeps telling us off and calling me a boy. She says I kick her and bite her and I DO NOT!! She wants to have the whole sofa to herself. And she’s brought a big white and ginger cat which lives in her bedroom and taunts us from the window. It actually looks like it wants to come out but nobody’s letting it. The whole house felt sad and I didn’t know what to do. Mum sat in a chair so I tried to jump up and cuddle her but it was a bit of a squeeze. She still cuddled me when she could, though, and she let tears come out of her eyes when she was cuddling me sometimes so I tried to do extra good cuddling but it’s hard to know what to do with humans sometimes. They don’t like licking or making smells so it’s beyond me. After a week or so, we went on another long journey and stopped at a big noisy place to collect Fran. There wasn’t much room in the car because her belly is bigger than it was and I don’t think anyone has told her. Maybe she eats too much cake. I will ask Archie. She did have a big bag, too, though, to be fair. Perhaps it was full of cake for later. Then we carried on until we reached the Sad house and there was lots of work to do in making up beds and eating although the people didn’t eat much, Archie and I were starving.

There was a lot of to-do in the night time. I thought I would sleep with Mum and Fran and cuddle them both but the old lady kept on coming in and tried to make Mum and Fran go to another bed. Mum was very firm, though, and took her to the bathroom for a hurry-up, I think, and then put her back to bed like a baby. She seemed very confused, as I was. All the time we were in the Sad House everyone seemed to feel sad or cross or upset. It wasn’t good at all. After a couple of days, we left the Sad House and did everything in reverse. We packed the car as full as can be and then drove back to leave Fran at the airport. I didn’t see her eat very much while we were away (and I watched specially) but her belly is still getting bigger. Another question for Archie, I suppose.

I keep getting told off by the old lady and I heard her say “I don’t like dogs” but when anyone comes in, she always says how lovely we are and how well behaved. I don’t get it. So now the old lady has gone to live somewhere else for the time being and we have the fat ginger and white cat, Rooney, living under Mum’s bed. Honestly, he’s only been here 5 minutes and he sprawls all over the bed and spits like a big spitting thing when he sees me and I only want to sniff him and say hello.

The house feels happier but all upside down at the same time and somehow heavier. Maybe I’m imagining it but I can’t wait for things to get back to normal. I think cuddling is the way.

 

Living with a toddler

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.

Dad 25.12.16

Fort Zinderneuf

It’s about 10am and Mr Mason is talking to the man who has come to fix the dishwasher. The phone rings, disrupting their conversation and the caller is a man called Terry who is a neighbour of Mr and Mrs Mason snr. Briefly, he says he noticed the blinds were all closed at Mr and Mrs Mason snr’s house so he knocked the door. He could hear Mrs Mason so tried his doorkey. It wouldn’t work as the bolts were engaged behind the door. He got a ladder and removed  louvres about the front door and managed to climb in. Mrs Mason says she can’t wake Mr Mason up. Terry calls 999 and is asked if he can perform CPR which he does. Later he says he knew it was too late but he valiantly carried on until the paramedics arrived. Using their defibrilator, the sign comes up says not to resuscitate so Mr Mason is taken away to the morgue at a local hospital.

The blow is phenomenal. Mr Mason comes upstairs to tell me his father has just died and we are distraught. We start grabbing toothbrushes and clothes, dog food and anything else we can think of, shoving them into unsuitable bags, get in the car after asking a neighbour to watch out for a parcel which is due to be delivered and drive down to Hampshire.

This blog would be too long if I included a lot of detail but I’ll pick out the most important parts. Firstly, my father-in-law was a great man; kind, considerate, funny, well-travelled and a great but unassuming raconteur. He loved his wife, his son and the rest of the family unconditionally and could never do enough for us. We loved him back the same way, always looking forward to seeing him and the annual singing of ‘Happy Birthday’ over the phone for whoever was in line to hear the strangled version. His penchant for sticking things to his forehead was another welcome party piece.

Arriving at the house, Mrs Mason snr is sitting on the sofa in a kind of daze. We are also in a daze. People drift in and out. She asks repeatedly where Dad is. We tell her straight that he has died rather than the well-meaning person who tells her he has just gone out. It’s an extraordinary pain to hear devastating news repeatedly. We decide to stay the night and put Mrs Mason Snr in the single bed. The bedding on the double bed is a curious mix of sheets and blankets and we’re told they don’t normally sleep on the bottom sheet as such but sleep on top of the bed. What they cover themselves with, we don’t know. We go to bed early. I haven’t slept at all the night before for some reason and am living on adrenaline. To be honest, the house smells and it’s rather off-putting getting into bed, especially as that’s where Dad (as he will be known forthwith) died a few hours ago. Just before midnight, a confused Mum (as she will be called) comes into the bedroom, muttering about her feet being cold and she slides into bed next to Mr Mason, calling him George and holding his hand. I slide out the other side of the bed and putting a jumper on, go to sleep in a chair in the sitting room, covering myself with a coat. I don’t risk the single bed due to the urinary incontinence which has long been denied but is certainly present and get an hour or two’s uncomfortable sleep. In the morning, we have a cursory look for papers, eventually get a certificate from the local GP, pack a few clothes and leave for home but not before Mum finds a set of false teeth under the pillow I slept on. Hmmmmm.

Mum asks questions repeatedly, the same questions over and over, but she does get into the car without complaining which, given she hasn’t been out of the house for over 5 years, is quite something.

The days after that (and it’s only 4 since I last wrote in this blog) are a whirl of confusion for all of us. We start to get support services into place and I talk to so many people I can’t remember who is from what organisation or what they do. Every time we leave the house we come back to messages on the answerphone. At home, Mum can’t remember the layout of the house which, given she is restricted to kitchen, dining room and sitting room gets a bit frustrating. “Why don’t you go and sit down, Mum?” “Where shall I sit?” “In the sitting room, on the sofa”. “Where’s that?” “The room just through there, with the sofa in it” “Shall I sit on this chair?”, pointing to dining room chair. “No, sit on the sofa, it’s more comfortable”. “Where is it?” and so the conversation goes on until I physically take her there. There are moments of naughtiness when she can’t get out of a chair when her carers come. She becomes a very doddery old lady and the frustrating questions, like “Can I sit here? Am I taking your place? Is it all right if I put my arm on this cushion? Should I turn it over?” The very worst and most annoying repetetive phrases are “I can’t eat this” and “I can’t drink this”, both delivered at the same time as the food and drink are given to her. With the amount of shock and grief she is enduring, it’s not surprising she isn’t hungry but when it’s said every time and several times through a meal, it gets really irritating. There was one exception yesterday when she ate a cream eclair without a single word. Hurrah!

I can only imagine how she feels inside. We have some small chats when I go and sit beside her, mainly because she is quite deaf but also it’s a good excuse to go and hold hands and find out how she feels. Today she feels sad, not sad with us in the house but sad in her heart. She feels she’s been left. She regularly forgets Dad has died and I can only imagine the impact of that. We’re also grieving amongst the paperwork, wending out way through social services and trying to find papers so we can organise a funeral.

Oh, and yes, there’s me. On Friday we go to see the oncologist to get the results of the bone scan I had before Christmas. There is no sign of cancer in the bone but apparently I am riddled with arthritis. Woo hoo! Never have I been so happy to be diagnosed with arthritis. My oncologist is pleased that my tumour markers are gradually decreasing as well. The arthritis is in my neck, shoulders and spine, hips, knees and ankles. Riddled seems an appropriate term but it explains the pain I have experienced. He is keen for me to reduce my morphine to what I call ouch level – so that I can be aware of the pain and treat it accordingly. I am too tired to think about it or argue. Every appointment I have means we have to take Mum with us so she accompanies us to Chemotherapy, an appointment which only finishes at 6pm, an appointment at the Hospice and another to see the oncologist. She doesn’t complain too much but suggests repeatedly to Mr Mason that they just go home.

So, back to Dad. While the children were young, they spent a lot of time with him during the summer. He loved taking them to the beach, driving them to Marwell Park (when it was open) and they planned to buy a beach hut on Hayling Island until a storm blew most of them down in 1987. While driving them along, he would periodically sing or shout out random phrases or poems. There was the famous “Oh, wiggly stick!” but the classic was “Fort Zinderneuf”, shouted as they drove past the forts along the top of Portsdown Hill.

I can’t really do justice to a man who was so kind to me, who behaved as though it was a privilige to be in my company and who loved me unconditionally. He loved his son and grandchildren in just the same way and we will all miss him incredibly, as will Mum who was married to him for over 70 years and now feels lost and bereft. There are no words for that.