Week Nineteen

Harvesting vegetables with Nana in her garden

It is now two months later. There has been so much happening, but life is very different without Pat to visit and Mum to care for at home daily. I see Mum roughly twice a week at the moment and we either go out or come to the house and enjoy the garden. Conor enjoys Nana’s visits and is always reluctant to let her go home again at the end of the day. She is equally reluctant to go.

I had a party for Mum’s birthday, whilst Debbie was here, so that family and friends could see them both at the same time. Mum’s sister and one of her daughters came, as did Mum’s faithful friends from school days. It was hard to know whether Mum recognised Debbie or not. Mum is still very good at pretending that she knows what is going on. Debbie last saw her in November, when Mum was still with me, but Mum has deteriorated quite a lot since then.

Last week Mum’s cough was bad again. When I got to Broad Glade, she looked so happy to see me. We hugged, prayed and wept together. Broad Glade had phoned the doctors and they had refused to come out apparently.

She was in much distress, crying and shouting at her cough, “Stop it! Please, stop it!” and after an hour at my house I had two wet chairs.

I took her to the GP myself and was surprised that they have resolved to stop looking for the cause of the chronic cough. I think Mum aggravates it by not actually coughing anything up – because it disgusts her. They have referred her for some physiotherapy, which I will go along to, and which will hopefully release the phlegm and get it out. I expect it will be similar massage as I used to do for a boy at school with cystic fibrosis.

I gave Mum a shower, washed and blow-dried her hair and plucked her beard. She was enjoying the pampering and seemed to need it. Fortunately I had some clean clothes for her here still and I will keep the ones I changed for next time.

It was noticeably much more difficult for Mum to climb the stairs. Her co-ordination was as wobbly as her confidence. Half way up the stairs, I had one of those “Why?” moments, with a “Never again” trailing closely behind. We did get upstairs, with great rejoicing. Coming down again was even scarier. I was out of my depth and trusting in God alone to accomplish this.

I have to feed her all of her drinks and food now. She can hold the cup, when you have balanced it properly in her hands and if she has drunk half of it already. If I give her a sandwich or cake, she cannot eat it without constant prompts and still has difficulty getting it to her mouth. If I feed her, I am like a mother with a baby again, coaxing with my mouth open and saying “Aaahh…” Mammy giggles, opens and eats, looking surprised at the food. She is not losing any weight though.

I am going to fetch her again now and go for a good walk.

***

Well, her cough is a little better, but the staff at Broad Glade are still very disturbed by it and reckon that ‘more residents than ever’ are suffering from chest infections. They clearly think it’s Mum’s fault. They don’t hold out much hope for the physiotherapy either. They think she just won’t be able to respond. I continue to hope.

She started to cry again when she saw me (can’t blame her there) and hugged me very tight. As we reversed into my drive, she said, “Home again. At last!” and I feel so guilty. We walked down to the new local café for a coffee and muffin. I don’t know how many times she said, “Oh, this is lovely!” in response to the fresh breeze. She also kept smiling at my face and said how lovely I am. Of course, I replied, I am your daughter. In the café she initiated a conversation by asking me if I get bored. I never do, but she does.

We then took Conor to a large local park area, which Mum seemed to be enjoying so much, that I decided to leave Conor to play with his friends, whilst Mum and I went exploring. It was another bad idea. I was not familiar with the route and, at one point, the path was very narrow and steep and Mum couldn’t stay on the path. I decided that we should carry on, rather than go back, but the way became even trickier. We crossed a disused railway and after walking what seemed like a full circle, Mum started to get distracted and confused. She was looking at the wild flowers on the path, saying that they were all hers and that someone had stolen them from her…She was becoming cross and stubborn and we had come to what looked like a dead end. I all but dragged her through the overgrown hedgerows back into the field and she was in a really bad mood by then. I tried to explain that the wild flowers belonged to the countryside and that nobody had stolen her flowers, but she didn’t believe me.

I was relieved to see the car park again and Mum seemed glad to be back in the car. I left Conor to play some more and I took Mum straight back to Broad Glade. She was very red-cheeked and sullen, but gave me a big hug and told me to be good.

Life is about to change again for me. I have been offered a job-share in a Year One class in a school. I know it is the right job, but am a bit nervous about all the work involved again. The staff seem great though and I’m glad I’ve got time to do plans, meet the children and get to know the ropes in relative ease before the summer holidays.

***

Today I went to meet the manager at Broad Glade, mainly to discuss finance. She made a suggestion:- that I change Mum’s doctor to a city council GP and then she can have access to some new dementia support, which looks rather good. I’m sure the county council will catch on to it in time, but, as she said, much of the provision can depend on a post-code lottery. I’ll definitely look into it, because my doctors here are great for us, but they don’t like doing visits to Mum.

I went in to see Mum too. I took the lid off her beaker and let her enjoy her coffee properly (she still hates the toddler-beaker) and then we put on raincoats and went walking. She was so happy to be out and was squeezing my hand to say thank you. She walked well today, with power and good balance and pace. Her face registers immense pleasure as the wind blows over her and wipes the cobwebs and cares away. She repeatedly asked after the boys and we were able to converse. I hadn’t learned my lesson from Tuesday though and took Mum down two unfamiliar alleyways, simply out of curiosity. I thought Mum was going to get into a strop again, but she was happy to touch the plants, say that she knew them and that this is the way that she usually comes.

I am thankful that she was more lucid and aware today. She didn’t like me leaving. I know she loves the visits, but I still don’t know whether it makes her worse when I go away again.

The garden is looking fantastic. The climbing angel-rose is so full and heavy and the two cuttings I took of it have flowered beautifully. My grapes, blueberry and blackcurrant are in place to start their ‘year three’ fruiting next year, but they are looking good. The raspberry is ahead of itself and has four raspberries coming already. Keep off birds, there’s one for each of us – Yummy! Strawberries and rhubarb are making progress finally, and the tree is full of tiny apples. My ‘Turkish delight’ scented roses are out in full splendour and the ornamental poppies’ short and delicate lives are being enjoyed daily. Even the ‘Agapanthus’ that I brought back from Jersey is getting ready to flower. I’m very excited about the Physalis too, as I’d only seen it in its autumn glory as ‘Chinese lanterns’, but it now has gorgeous white fairy dress flowers and the foliage is exquisite. And I have a new lot of veggies too. Onions, beetroot, carrots, parsnips, sugar-snap peas and spuds.

***

I did phone the proposed new surgery, but they were all a step ahead of me. They had already received an application form and I was not needed, so I bowed out gratefully and went to get Mum. I found her in her room today, which is unusual. Her music was on and she was sitting in the chair sobbing. I watched her for a moment and then said, “I thought the music made you happy?”

“NO!” she grunted, “Not now!” She grumbled some words about, ‘nasty… no nice people any more… always following…’

I went over to her and squat down smiling, but she didn’t recognise me.

“Go away and just leave me alone.” she snapped.

I looked for the staff, to see if anything had happened. The member of staff was clearly baffled and a bit irritated by Mum’s behaviour. Apparently Mum had woken up crying and had been telling everyone to leave her alone all morning. Then a male care-worker came on duty and he had Mum out of her room and smiling. He told her that I was there, so then I got the big squeeze hugs and the tearful ‘where have you been?’

She admitted that she had ‘just been mardy’, and she laughed, amused and scandalised, when I told her how she had behaved.

We had a lovely, event free afternoon and Conor helped me escort her home again at 7 O’clock.

But something is happening.

our garden and a place of sanity

Week Eighteen

Mum’s house and gardens with cultivated shrubs and small trees…

It is a real treat to enjoy the garden in hazy Spring sunshine. There are shoots coming through from plants I thought had gone – the Agapanthus, the garden mint and orange lilies. I now have Scarborough Fair – parsley, sage, rosemary and thyme – among Bleeding Hearts, Wallflowers and diverse varieties of tulips and daffodils. The rhubarb and strawberry plants are growing already, and I’ve just put some trailing Fuchsias into baskets. Even the well-pruned apple-tree has green, pink and white buds all over it. I am beginning to breathe again.

The hospital just rang to say I have to take Mum for a pre-operation assessment on Wednesday morning and then in for the operation at 7.30am on Friday.

Debbie has already booked her ticket to come on Monday 14^th April, the day after Mum’s birthday. I shall organise a party of Mum’s friends for the following day, so that Debbie can take part. Someone said today that it wasn’t fair that I’ve been left to do all the work for Mum. In a sense that is true, but had it all happened to Mum whilst I was teaching in London, I wouldn’t have been able to do anything for her either. I have had to take a career break, it’s true, but I was in the fortunate position of being able to do so and, as a result, I have got to know and love my mum again. I have been able to care for and tend her in a way not possible before. I consider it now such a privilege and a very special blessing.

***

Getting up at 5.45am didn’t feel like such a special blessing this morning, but it was so beautiful outside – there was a strong, fresh, thin-misty smell and the sun was behind an ivory veil, but very much awake and smiling. The birds were loud and clear and the roads all but empty. Mum was ready when I arrived, so we set off and sailed through a dozy Nottingham and arrived half-an-hour early at the Hospital. As we sat at the Reception desk, a man kissed his wife goodbye, having been told that she could keep her mobile on and phone him when she was ready to go home again. He went slipping out of the Unit, laughing, “I thought I’d have to stay all day in this place!”

I knew they would need me to stay with Mum.

I recognised the place and the ward sister, and I realised that Mum was going into the room next to the one where I had had my ‘Surgical Evacuation’ of the first miscarriage, a couple of weeks before Mum ‘came down for Christmas’. That gave me a strong flash-back, as did all the repeated questioning:-

“Any caps, crowns or loose teeth?”

“Any known allergies?”

“Name and date of birth?”

As I answered the questions for Mum, she had her lines to say too:

“I’m a pest, aren’t I?”

“Will it go away now?”

I told her that I do believe in miracles and that she may well wake up normal again – the Lord does work in mysterious ways and I like to expect the unexpected.

I got Mum into her gown and the stream of form fillers gave way to the porter. I went down with her to the theatre, to answer any remaining questions and go through the consent form again. The doctor let Mum sign her consent, because she seems to understand the explanation as it is given. She squiggled her signature and said

“I hope we get it sorted this time!”

“What do you hope they do, Mammy?”

“I don’t know, whatever it is they’re doing!”

The doctor explained to me that there is a slight risk of the camera puncturing the womb, in which case they would have to look in through the navel, to check it hadn’t punctured other organs as well. This is unlikely, but I then had to give my consent in case of that too. Big responsibility for little me.

There are so many men in this part of the hospital, all hiding in green tunics. They cause Mum to behave in a very animated manner.

“All these young men around”. I commented.

“Not for long though” she sighed.

“No, no staying power, eh?”

Mum laughed. The men found me some fetching shoes, gown and a lovely mop-cap, so that I could go to the anaesthetists’ room and watch her go. It was a very psychedelic room, meant for the kids I think, but I enjoyed it. It wasn’t as bad as watching my little boy go under, but it was still a strange experience.

I hardly got into my book when in half-an-hour I was called back into the recovery room. The nurses there were discussing their bets for the Grand National the following day. I began to think about Dad and the 13 years of Mum’s life since he died… I thought of all of our lives since his death and of that day when Mum phoned to tell me the shocking news. We had friends at our house to watch the Grand National that day. As soon as I got the call, the party was abandoned and baby Josh, his dad and I, set off to Orkney.

When Debbie heard that Dad had died, she went into labour and gave birth to her third child, Olivia…

Back in the ward, we were brought more tea and Mum was amazingly alert. I wanted to sleep, but she was rearing to go.

“Has it worked?” she mumbled to herself under the oxygen mask.

She wasn’t aware of me at her side. She lay quite still, humming and dozing and whispering her thoughts:

“I’ve just realised…I’m not coughing!” she smiled benignly, almost smug. “I can sing again!”

I realised that she thought that this operation was to solve the problem of the residual cough. We ordered some breakfast and she continued with an expansive look of glee and gratitude:

“Yes, it’s better… I can dance and sing again… I can try anyway…Nobody knows though…” she laughed gently and closed her eyes to hum, ‘Walking in the winter wonderland.’

“Nobody knows, but I do…I can do them, I think…I can sing again…but they don’t know…but it doesn’t matter…BUT, will I do it?”

She put her hands together, rapt and whispering her thanksgiving and petitions over again. I joined her in prayer and in thanksgiving that the doctors had found nothing at all wrong with her womb.

The tea is cool enough now, so I take off her oxygen mask and feed her jam on toast and tea. Mum is smiling and dancing a tune to herself. The lady comes back to collect the plates and asks Mum what she has had done.

“Nothing much.” She replies, then coughs.

“It’s come back again” she whispers with an air of desperation, “Oh, no, it hasn’t worked! Please no! What do I do now? Please let it be right… It’s still there, isn’t it?”

I intervened to say that the cough may still be there, but that she was in hospital to check her womb and that the doctors say her womb is fine.

I fed her lunch, saw that she’d been to the loo, dressed her and she was discharged. It would have been very different for her and the doctors if I had not been there today.

***

Only 4 days later, but a lifetime has passed since then. I feel like my head is on fire and like the inside of me is opening up into a giant chasm, that at any moment will have to explode or implode – it cannot keep getting hotter and more vast and intense.

Today is April 8^th. It would be Pa’s birthday today. Pa died 2 years ago in February, and I really miss him. Thirteen years ago, on the night of Pa’s birthday, my father died. On Friday night, the day Mum and I were in the hospital for Mum’s operation, Pat also passed away. Isabelle loses her mum on the eve of the Grand National – as I lost my Dad – suddenly and painlessly. I can’t believe she has gone. I was drinking tea with her last Monday morning. Her tummy was recovering from what we thought was a tummy bug. The following day she was taken into hospital and I haven’t seen her again.

Dad, Pa and Pat – all linked in dates as much as in my heart and life. My poor Isabelle, Bruno and Violet – they have lost Grandpa and Gran-Gran in two short years. It’s times like this that the strengths and weaknesses of all the family and friends come to surface. And there’s a flood of memories to enjoy and to deal with through the tears.

I am grateful that I still have my mum. I will take her up to the remembrance garden today and then to Pa’s grave and remember Pa on his birthday and Dad on his anniversary. I’ve told her about Pat, because Mammy was fascinated by her and loved her weekly visits to her, but she has already forgotten who it was.

Mum and Dad’s beach land and boat house

Week Seventeen

The Rock n Roll Dancing Queen

Yesterday Mum’s Gynaecology appointment was for 1.45pm and I had to be back at Conor’s school for a show at 3.30pm, followed by a performance at Joshua’s school at 7.30pm.

I was thinking that the Gynaecology appointment might be a waste of time as the problem came and went about a month ago. The waiting room was packed when we arrived, and filled to overcrowded whilst we waited. Thankfully, she was called first and sent straight for an ultrasound scan. They had to do the scan internally and she didn’t like that at all, but was very patient.

The waiting room by now was standing-room only. Again Mum’s name was called immediately and we were seen by the doctor. The process that followed was lengthy and confusing. The doctor thought that Mum did have a problem, but she was more concerned that the scan had shown her womb lining to be much thicker than it should be. She tried to take a sample of the womb lining with a very long and very sharp looking instrument, but to no avail. After consulting a higher power, she returned to say that it is very important that Mum has this sample taken on 28^th March, that it must not be delayed and that she will need a local anaesthetic and will feel very uncomfortable afterwards.

Unfortunately, I am supposed to be in Newcastle that day, but the doctor stressed that this is more important. Mammy was very jolly and compliant, but had no idea what was happening.

Disappointingly, and despite our relative swiftness, we got to the school just after Conor’s show had finished, but he was so pleased to see his Nana and insisted that we brought her back home for a cuppa. It worked out perfectly as I was able to take her home, have dinner and then out on time for a brilliantly staged performance of ‘The Wizard Of Oz’ at Josh’s School. I felt grateful.

I was left feeling very strange about Mum. I suppose the awareness of her mortality and other health problems hadn’t occurred to me. I was looking only at her dementia, as she is so strong physically.

***

We now have a date for the ‘Broad Glade Review’ – her six weeks’ assessment. It is a fortnight today – Wednesday 26^th March.

More good news is that the Gynaecology appointment has been rescheduled for Thursday 20^th March; so I can still go to Newcastle.

Monday night I had an unpleasant dream – all my family and friends were looking down and shaking their heads at me, as Mum sat depressed in the corner. They were blaming me for Mum’s misery and trying to guilt-trip me into taking Mum out of Broad Glade. But I knew that to bring her back to my house was not the answer and so felt confused and upset in the dream.

I spent the morning sewing in name labels and beginning some spring-cleaning. There is much sorting and reorganising to do, especially in what was Mum’s room. It felt very strange to finally remove the room labels.

I have been pondering something different to do with Mum this week. The forecast is not for pleasant walking weather, so I opt for another trip into town, where there are more diversions and shelter. I picked Mum up after lunch and she was argumentative – about putting shoes on, going to the loo, etc.

We had fun in the lifts in town, looked at some sewing machines and went to ‘Waterstones’s’ irresistibly aromatic coffee shop.

Earlier Mum asked me “How are the boys?” and I was struck by how fully cognisant she seemed, about who I am.

As she laughed and we conversed, I thought how I really do love this lady now.

Later, Mum said “I’ve missed you, Dawn!” – as clear as that. I asked her why and she replied ‘all the things we did’ – and that it ‘seems a long time ago’, although she knew ‘it wasn’t’…

I asked if she liked it where she lives and she affirmed that she did, but…there was a but…

“Should I try to come more often, Mammy?”

“It would be very nice, but you are too busy. I only have me to think about.”

I don’t know what the future holds, but I do know that the past has gone and it is today that matters. I want to make today count for something. If I can add value to her life, show me how.

Chapter 12

Mum’s appointment last week was for the Hysteroscopy (sample of womb lining) under a local anaesthetic, but now they say they will need to give her a general anaesthetic to do it, as it turned out to be far too tricky. So we await appointment number three.

We came back from hospital via Isabelle’s. Mum made a comment about how nice it was to be around ordinary life, because otherwise it’s just her alone. I think she is bored and lonely at Broad Glade, but then she was bored at my house.

Yesterday I took the boys, Mum and Monica out to Newstead Abbey. It was very cold again but Mum appreciated the arrays of daffodils and the entertainment from Conor and Monica.

Monica had picked out lots of photographs. It was good to see them – especially the older ones of my Dad’s family. Granddad looked so old at 43 and my Dad was not even born then.

Monica remarked how neglected Mum appeared. Her hair did look terribly greasy and her white beard has grown long again.

We got back to Broad Glade about 5.30pm and had missed tea, but the lady kindly said she’d get her something; meanwhile Mum was grumbling, unaware of my attention on her. She said it was ‘not a good idea to make a fuss’, that ‘it would only make it worse’, that ‘some people are just not very nice’…

I’m wondering what is going on, or is it all in her head?

***

Mum’s review at Broad Glade this afternoon went well enough. Although they acknowledge that Mum has deteriorated substantially, they do think that they have the resources to care for her. The two senior representatives from Mum’s unit were honest and positive. I was taken aback when one said that she loved Elvis too, that they were of the same era. I looked at her, fit and working and again felt sad for my Mum, so old before her time.

The constant coughing has been bothering them all. Apparently the GP has given Mum a prescription for more steroids, but did so over the phone without even seeing her. I shall take her to the GP next week myself and the staff also want me to insist that she has another X Ray.

Monica said that when she was living in Orkney, in 1995, that Mum had had to go to Aberdeen for a Bronchoscopy, because they were investigating the cough then – that was 13 years ago. Apparently they wondered then whether it was a nervous condition/habit?

Whatever it is, it sounds like she smokes 40 a day, according to the care-workers at Broad Glade. They also said that there had been an incident last week, whereby Mum was found standing facing another resident; she was apparently wringing her hands and saying that she wanted to strangle the lady. They did say that whilst this lady could be extremely irritating, it was totally out of character for Mum to behave like this and that they had to write an incident report.

I felt overwhelmed by it all and looked at my list of dry, academic questions as I tried to engage. I didn’t ask what kind of ‘dementia training’ the staff undergoes, nor about ‘contracts’ and ‘financial agreements/payments/petty-cash’ and asked instead about the activities that are provided and whether Mum joins in with anything.

They talked of coffee mornings, bar evenings, music and reminiscing. They said how they put her CDs on in her room, whilst she gets ready for bed. They said they have a new TV channel that has black and white films every afternoon and spoke of bingo and giant tennis. But I know that Mum doesn’t enjoy TV anymore, that she never liked bingo and, as for tennis…

I know she likes her music, food and lots of attention.

I asked if they keep note of her visitors – there was only one (her sister), who came during the first week. I suppose people think that if Mum is going to forget that she’s had a visitor, it isn’t worth making the effort? Personally I think, as Conor put it to me once, ‘at least she enjoys it at the time!’

I did mention the hair washing. It seems that the ladies do not get their hair washed as part of the daily or weekly wash routine, but only by the hairdresser on a Wednesday, which means they have to pay for it. I emphasised that Mum needs her hair washing more often than that, because it gets greasy and itchy, but that she is not used to having rollers, curlers or a fuss made. I don’t know as she ever went to the hairdressers in her life. It seems that the carers have a problem with this. I’ll have to work out how I can do it for her myself.

Anyway, she apparently became a permanent resident on 16^th February 2008, so I now have to inform the DWP, DLA and various others about her new change of address.

After the meeting, the Social Worker and I went in to see my little Mum. The Social Worker will email Debbie with the update and hopefully she will respond.

I took Mum into her room and plucked her beard, which someone must have trimmed this morning. She had also been to the hairdresser and smelled lovely. We danced to some Elvis songs and talked about his life. She is very resentful of Elvis’s manager and has blamed him for everything that ever went wrong for Elvis. I suggested that perhaps fame itself was a challenge and she looked knowingly, with a coquettish grin and said,

“Fame has it’s good side and not so good. I should know.”

“What were you famous for?” I enquired.

“For my dancing… It was wonderful” she reminisced dreamily.

“And the bad side to fame?” I dared

“It’s all over so soon!” she sighed.

She has always loved dancing, but has never been famous as far as I know. I dare say she created a bit of a stir on the dance floor though.

Week Sixteen

Sunday now feels strange. I have a new era to begin and a new path to determine. There is a lot to tidy up: Family to inform; name-tags to sew in and more stuff to take to Mum; financial assessments to undergo again; change of addresses to notify various institutions of; visiting routines to establish; my doubts and guilt to allay; my path to find…

We start with name-tags, delivery of pads and clothes, and repeat prescriptions to order and deliver. I also have to take Mum for her routine 6 monthly check-up at the dentist.

She was not so positive today. I was greeted with a peeved, “There you are!”

In the car and in the waiting room she asked me repeatedly what we were doing. She only had to have her teeth cleaned. It’s amazing how her teeth have survived so well. She enjoyed the walk around and chat and was happy when I mentioned getting back for lunch, but when she was seated at the table at Broad Glade and I said I’d see her ‘tomorrow or Wednesday’, she looked surprised and disappointed. I kissed her and left, but felt like I’d given the betrayer’s kiss.

I doubt myself again. Am I doing the right thing? Everyone I’ve told thinks it is the best thing and many say how well I’ve done to look after her so well for so long, but… I couldn’t sleep last night. I just sobbed. The phone keeps ringing today and I won’t answer it. I feel very low and lost.

***

The Social Worker phoned yesterday and said that Broad Glade would be doing an assessment over these six weeks, before the permanent place becomes official. Apparently they have said that Mum has deteriorated more than they had thought, since Christmas. The Social Worker expressed concern that we may have to find somewhere else for Mum.

I took Conor to see Nana on Wednesday after school. Conor did his bit admirably and knew it. He made Nana laugh so much, making the same jokes, over and over, about her looking like a pink marshmallow in her pink coat and soft pink hat. We walked and went for some hot chocolate. I noticed that Mum has special cutlery at her place in the dining hall and a special large bib/apron for mealtimes. She was in good form before we left and so were we. I took her CD player and a selection of her favourite Rock and Roll and Country music. Conor and Mum had a jive before we left. I was very grateful for his support.

I do wonder how she is when we’ve left and whether she gets more confused and anxious afterwards. I don’t really know how often I should visit her at the moment, for Mum or for me.

***

On Saturday I phoned Broad Glade and they were very supportive. They said they will monitor Mum’s mood after we’ve been, to see whether there is any detrimental (or positive) impact from our visits. I felt much better and arranged to pick her up and walk over to Mass for 6.30pm. It was a special Mass where Joshua made his initial vows as part of his Confirmation preparation. Mammy seemed very content and independently asked if she could come to Joshua’s Confirmation day. Back at Broad Glade, they brought Mum a drink of tea and a sandwich for her supper. The tea was in a two-handled, toddler style beaker to avoid spillage. I wondered if she minded.

This is a waiting period. My moods are all over the place. After only 14months in our home, I feel like a part of me is missing. Like I have lost or forgotten something. If only I was confident that Mammy was happy there…

There is so much happening for us as a family, which I can at least attend to with greater freedom.

What is my purpose, my role now?

After this 6-week assessment period, what will happen?

If she can stay permanently in Broad Glade, what should I do next? They have already stopped my ‘Carer’s Allowance’,such as it was, and as soon as she’s offered a permanent place, there will be a financial assessment and the DLA will stop. Apparently, I will have to pay for these 6 weeks in Broad Glade as well.

It also seems that I have to find some means of contributing to the finances, to balance the books and to get me back into the world of employment. I know that I have much to offer, but I don’t have much strength or confidence at the moment.

***

Julia went to see Mum on Monday. She seemed shocked at Mum’s deterioration, but she likes the home. She said that Mammy didn’t recognise her, but guessed that Julia might be her ‘daughter’. She hasn’t seen her since last August, so that may explain some of it. Apparently Mum kept saying that she was ‘so bored’.

She repeated that “Dawn’s not been to see me…not since she’s been looking after that old lady”. How interesting. I wonder whether the ‘old lady’ is herself or Pat?

I also phoned the home (Julia is the only other person to have visited Mum apparently) and they said that Mum had been crying in frustration at not being able to do anything.

I took Mum out into town, past her old shop and recalled her Tuesday ‘wholesalers’ days’ when we would traipse through town with Mum’s big red suitcase and Mum would purchase things for the shop. We headed for ‘Ye Olde Trip to Jerusalem’ and had refreshments there, then explored the castle grounds. Spring is delicately announcing her arrival up there, with discreet displays of snowdrops and crocuses. We took the opportunity to hug a few trees and Mum and I had to link arms to give a huge trunk a proper hug. She was impressed by the panoramic skyline and wonderful view of the city, but was afraid of the height at which we stood and panicked about falling off. It was beautiful up there with her. She enjoyed the atmosphere in ‘Starbucks’ too and didn’t mind that I had to feed her with the ciabatta and coffee. She seemed very alert today, but getting back into the car she seemed confused as to what we were doing and why. I felt guilty again.

***

Sunday was my birthday and, double whammy, Mothering Sunday. After a lie-in, I opened my cards and then picked up Mum to go out for the day. It has been 30 years since I was last at Wollaton Park. It is a beautiful place. Mammy found the stairs difficult and didn’t really see a lot in the Hall; she was flustered, although she did make the right noises when I pointed out the stuffed birds and animals. Again, outside she appreciated the full-scale panoramas, the trees, the lake and the deer. And the chocolate cake, of course.

***

Today I phoned Aunty Monica. I knew she was sad that the time had come to put Mum into a home. She said that I had to put my “husband and children first”, but I feel she was disappointed. In her opinion, the carers at Broad Glade don’t speak much to the residents and the “other residents all doze off”. I know she will visit her though. I also wrote to inform Mum’s friend, Tony. I know he will be sad too. It is difficult to disappoint others who love Mammy. Disappointment hangs over me!

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How has my life at home has been impacted now that I’m not caring for Mum at home 24/7? I still have lists of things that I don’t get done and so many extra tasks for Mum (that may be just temporary). Apart from that, I feel like I am in a no-man’s land. My mornings and evenings are much easier, without doubt, and my day-to-day need to keep a constant watch on her has obviously diminished, although my concern for her welfare has not. The burdens have completely changed, but are no less weighty – the concern for her welfare and the doubt and guilt are almost more debilitating. Hopefully when she has been offered a permanent place I may be able to focus on my own way forward. That she is close by is of great consolation and I want to continue enjoying as many days out with her as possible.

The boys have needed more input as well and I have been much more available to support them, which is great. They are both going through important transitional phases in their lives and are needing guidance and supervision. Conor also needs a lot of extra home attention, now that he doesn’t have his Nana to entertain. Everyone “says” I’m doing the right thing!