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 28th 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 26th March.

More good news is that the Gynaecology appointment has been rescheduled for Thursday 20th 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 16th 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!

***

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!

Week Eleven

Chapter 8

Happily we now have her EEG appointment, for the 20th of this month (EEG is Electroencephalograph, which is a test to record the electrical impulses that the brain produces whilst sending and receiving messages from the body.) Basically they want to do a ‘sleep deprived EEG’, which means keeping Mammy up all night before the test. In recent weeks, after dinner in the evenings, Mum becomes overwhelmed with tiredness and goes almost immediately to bed. Sometimes she wants a nap in the daytime as well and becomes panicky and tearful if I don’t suggest it. The hospital say I should do my best and I do want to know what is causing the seizures. The Consultant Neurologist called them ‘frontal lobe seizures with a quick recovery’.

I let Mum have a relaxing day and tried to keep her buoyant and gently entertained (good old Conor) and after dinner, I went to get some sleep. Simon offered to stay up with Mum and he let me sleep until 3am. I took over, made coffee, showered us both, had breakfast and listened to some more dancing music. The taxi came at 7.45 and I felt very pleased with our success – a real joint effort for this one.

The nurses in Neurophysiology measured Mum’s head, making little crayon marks on her scalp. They had asked all necessary questions and were good at entertaining Mum, so after watching them sticking the little electrodes to her head I left her, looking like an experimental hedgehog, in their capable hands. When I went back, she was already in the waiting room, looking rather disoriented but free to go. Our doctor should get a report sent to them in 3-4weeks.

***

It’s the 3rd of October today and Mum and I are both miserable and tearful. Since the Summer I have not felt my usual bounce and optimism. I need some more help.

Mum is finding ordinary things harder than ever now. The O.T. says I should encourage Mum’s independence, but more often than not the getting-dressed routine has failed. She won’t ask for help or admit that she needs it when I offer, so I have to take control and take over. She stares at the walls and follows me around, so that to get on I have to constantly say, “Excuse me, Mammy” or physically move her to one side. She doesn’t sit down for long. Her noise sensitivity is becoming more severe – yesterday I put some music on whilst I prepared dinner in the kitchen. She hid in the toilet, but couldn’t say ‘the music is too loud.’ She won’t say if she’s cold or hungry either, just looks at me with a hurt expression whilst I guess. Increasingly the answer to any question is,

I don’t know!”

Do you want tea or coffee?

“I don’t know”

Why are you crying, mammy?

“I don’t know”

Shall we go out?

“I don’t know”

Yesterday Mum had another activity-packed day and again she told her sister that she doesn’t do anything, so I bellowed into the phone that she can’t remember what she has done. Then at prayer time, when invited to say her prayer, she complained, “Not really, I’ve done nothing.”

“Pardon?”

“Well, I don’t do anything all day!”

I wasn’t very nice and said how I spend my days trying to keep her entertained and happy – for what? I might as well not bother. Conor was angry with me:

“It’s not her fault she forgets. She enjoys herself at the time. And she should be here; she entertains me.”

Stress, depression, frustration, ulcers and now ‘guilt’ to boot. I knew I was being cruel. I want her to wake up. Conor is right. My selfishness is my fault.

A couple of days ago she was crying that she just wants to be normal. It hurts her that she can’t do ordinary things. Picking up a cup, using a knife and fork – these things are often just so difficult for her. She perseveres when it’s food, but not for clothes or for anything else.

I get frustrated because I can’t make her better or, worst of all, I can’t even make her feel better.

***

That night I went to my first of a series of eight ‘Carers’ group’ meetings. We all had to introduce ourselves, saying who we were caring for, something about the circumstances and what we found most difficult. I kept mine brief and vaguely humorous, but afterwards a lady told me that of all the stories, she found mine the most touching. She felt that having a young family at home as well was too hard and that she was thankful that her children had not had to witness the misery of dementia. The stories were all very different and represented a whole range of caring for spouse or parent – some at home, some hospitalised; a whole range of ages, but all had a fairly recent diagnosis of dementia. The descriptions of the ways in which the dementia presented itself were unique to each family, but very recognisable. There was a hum of empathy and agreement as the listeners recognised behaviours, symptoms and traits that they too had had had to deal with in some form.

***

Last night was my second ‘Carer’s Group’ meeting. The speaker was good at his job, but I found the content repetitive and unhelpful, as I had already spent the last 10 months battling to come to grips with much of the system. I suppose I was reassured that I had left no stone unturned.

I have tried extra hard again this week to be patient and encourage conversation. The trouble is that she doesn’t seem to enjoy her own company, whilst I love quiet time and reflection. She doesn’t actually know what she wants to do. I know she likes walking, visiting, eating and drinking, music and some occasional TV. If I suggest any one of these activities, she will invariably say “Yes” and, as Conor says, she will enjoy it at the time.

Mums ‘prayers’ have been an interesting reflection of her emotional state over these months. When she first arrived with us, she would say she couldn’t find words to pray and would fluster and stammer. After a couple of months her ‘prayers’ began to express how lucky she felt to be living with us; how she loves us very much. By August the ‘prayer’ had become a self put-down – how she hadn’t done well, had been selfish or mardy and how she would try harder tomorrow. I always feel the need to address these negative comments afterwards and remind her of the good things she has done that day. These last three weeks her ‘prayer’ has been more of an expression of her boredom and frustration of how useless and under-stimulated she feels.

I have inhaled the roses and the chilly warmth of Autumn earth and dancing red leaves.

I am looking at my life to see what would enrich me, make me more alive and fruitful and a better person for us all to live with. I was breaking off the dead geranium flowers, reflecting on how they have flowered fantastically since I planted them out in the spring. I wondered at how difficult it is for me to discard the unfruitful parts of my life, how I try to carry all the dross and still expect to flower. I need to nourish my own soil and do some overdue pruning.

***

I took the boys to ‘Goose Fair’, whilst Simon stayed at home with Mum. The fair was fun and when the boys felt sufficiently dizzy and sick, we began the long walk home. I took them on a trip down my ‘Memory Lane’. I showed them my old College, then we walked through Sherwood, where Debbie and I had tried some of our early financial enterprises, selling stuff from Mum’s shop and setting up an egg-delivery round. From the same era, we explored Woodthorpe Park, which had us occupied for hundreds of hours as kids. We passed the shop where I had done my paper-rounds and Saturday job, past my old house on Porchester Road, smiled fondly at Pa’s, where the boys used to stay when they were little. It took us two and a half-hours to explore and I came home feeling quite disorientated. Such a lot of memories. Part of me is seeking memories, seeking to make sense of, and celebrate, the whole jigsaw of my life.

***

On Sunday I told Debbie how things are for Mum and she was very supportive. She wants to help, but can’t. She may be able to offer us some support before Christmas. She will back me and help me if I choose to put Mum into a home. I hate the thought of doing it, even if I believe that it would be better for Mum. I spoke to the boys about it too, explaining that the carers in Homes have more energy, because they do 8 hours a day for 6 days, not 24/7. Also she would have more company and we could still bring her here to play, but we wouldn’t be tied and she might get less bored. Conor is fabulous with her and I acknowledged that. I thought Conor would be angry with me, but he seemed very understanding. He would miss her. He’s finally got one Nana at last and she might have to go away again. But at least she wouldn’t be a thousand miles away in Orkney.

I’m afraid that Mammy will be angry with me if I make her go.

I’m sure I won’t be the first person to feel they have failed a loved one, when they finally admit to not being able to cope alone any more. I don’t know when I’ll do it. I’m not desperate yet.

***

Today I told my therapist about my relationship with depression and sexuality and about the fire that scarred my mother. I know how terrifying it was to live with my father and how much Mammy must be still emotionally, as well as physically, scarred from those 32 years. Her fear and love of him made her incapable of responding rationally and leaving. She protected him by her lies and secrecy and therefore made external help impossible. She was trapped. She is still trapped.

***

It is a beautiful ‘All Saint’s Day’, with cool sunshine and fiery leaves whirling in the breeze. The last of our apples are lying in the golden grass and the still unripe corncobs are rustling in the wind. Yesterday I had four hours to myself. Nobody in the house but me. I prayed, cried, read, did some correspondence and sanded and waxed another shelf. It was great.

Last week Mum was in ‘Respite’, whilst we all went away. Simon took Mum to the home this time, because Mum doesn’t seem to get as upset with other people as she does with me. But I was glad to come home. Simon and I haven’t been so close since the summer; since the last miscarriage. Whether it is due to his depression, mine or Mum’s, I don’t know. Perhaps it’s a lack of time alone together, but it’s been an uphill struggle. Simon is going off walking with friends for the next 3 days, so I hope it refreshes him.

Mum was very well after her respite. Her ‘prayers’ on Saturday had returned to how wonderful we all were and how much she loved us. By Monday night, however, it was back to how she ‘hadn’t tried hard enough’ and was ‘sorry for being mardy’, and last night we were right back to how she hadn’t ‘done anything at all. Not a thing all day’.

I have spoken to Social Services. They have put Mum’s name on the long waiting-list in ‘Broad Glade’, where she has been staying for ‘respite’. It is also where ‘The Broad Glade Day Centre’ is, so she is well known there already…There is another place, even closer, that I should explore, but haven’t yet.

I know Mammy has every right to have her needs and wishes met, but what should happen when those needs and wishes conflict with the needs and wishes of those around her, or what if they are not good for her? I guess I’m not sure quite how responsible I should be for her every happiness, if it conflicts with our well being. I know that most of my life nowadays is about keeping Mammy happy, but it isn’t her fault. It might be easier if I looked at it all differently, but I can only see things Dawn’s way.