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.

Week Ten

Chapter 7

Today Mum had the ‘Spirometry’, a breathing test to measure the force and amount of available breath. Mum does fine breathing, but it is so difficult for her to follow instructions other than the most basic. Like last night when she had pulled off a sock with the trousers and I gave it to her and asked her to put it back on. I came back with some fresh drinking water to find her with the sock on her knee and her foot in the sleeve of the nightie. She couldn’t see what was wrong, but when I explained that she had her foot in the sleeve of her nightie, she thought it was hilarious.

As far as the breathing goes, we are going to try a steroid inhaler for 6 weeks, to see if the cough disappears. Unfortunately, the inhaler they’ve given doesn’t fit into the ‘spacer’ device that she is used to, so we are having to try learn a whole new trick.

***

The ‘School holidays’ have begun. Today I managed to get Josh on an important mission, so that Conor and I could pick up his birthday cake, whilst Mum was out with her ‘Befriender’. It looks fabulous – designed by Conor and made by the wonderful people in the cake shop. The cake is a ‘stage’ with a singer, guitarist and drummer, with ‘Ubaphobia’ (the name of Josh’s ‘band’) written across it, with his name and age – 13. The next task had to be carefully planned, so that neither Josh nor Conor would know about it. I had to go to pick up Josh’s present from town. I left the boys in charge of assisting with Mum’s artwork, took the car and managed the wood shop and the drum shop in town, without arousing any suspicion. There is now one ‘Repenique’ (a ‘Samba’ drum) in the back of the car, complete with strap, case and beaters. I’m very excited.

The boys have been talking lots about ‘Faith Camp’ recently and I’m sure Mum must have been wondering what was going to happen for her. She finally pleaded, when the Sitting Service arrived, “Am I coming?”

“What, are you coming camping?” I asked.

“Yes.”

“To sleep on the floor in a tent?”

“Yes.”

“No, mammy, you won’t be able to come with us.” I said.

I imagined with a shudder how absolutely unsuitable it would be. She would hate the noise in the main meeting tent and would need escorting to the toilets every few minutes across the campsite. I would have to watch her 24 hours a day. She knows she’s not coming and she is letting me know that she resents this. I bet she’ll remember that now for the rest of the week.

I got a phone call earlier today from the ‘Evening Post’, to talk about the needs of carers in the light of some new money being ‘poured in’ to help support carers. I reported that everyone in the support services had been great, but that the process was too long and disjointed. The people have been helpful, but the services are spread thinly, are rather inflexible and they don’t interrelate enough. They want to take a photo of me later, to put with the article in tomorrow’s paper. I hope they do put in some extra support. It’s hard to believe that there are ‘more than 80,000 carers in Nottinghamshire – about 10% of the population.’

***

I had a good heart-to-heart with Mum this morning, so I hope it will have helped. She had had a grumpy, silent breakfast as I sat with her. Then she went into the kitchen and started chatting away. She does this a lot – talks lucidly away to herself and says nothing in company. Admittedly, a lot of it is moaning and grumbling that she dare not say outright, but sometimes I’d rather hear it than just feel it.

“Are you talking to me, Mammy?” I called in.

“No.”

“Is it easier talking to yourself? I wish you would talk to me.”

“Don’t I talk to you?” she sounded concerned.

“Not nearly as much as you talk to yourself.”

“I’m sorry. I don’t help you very much, do I?”

“Mammy, you do. You know that the only thing that ever bothers me is when you are mardy and grumpy. Doing stuff for you and with you is good, but I can’t handle the bad moods. We’ve found two day-centres, so that I can do what I need to do and you can meet people and have some fun. After all, it’s much better than following me around the house, looking for something to do.”

“I know, I’m sorry. Sometimes I look at you and I know I’ve hurt you.”

We had a good hug and she went off arm in arm with the driver. I just hope she takes some of that sunshine to the other folk at ‘The Broad Glade Day Centre’ this morning.

***

I knew she would remember that I was going away. She didn’t even break a smile when I put a Willie Nelson tape on. I know she was feeling rotten, but I’m feeling anxious enough about packing, camping and the baby inside; and Mammy is just crying for all my attention. I could hardly stay awake any longer and had to lie down. Simon and I will at least get some time together this week though. I bought a double sleeping bag today.

To wash Mum’s hair now, I climb onto a chair at the open shower door; otherwise the shampoo runs down to my armpits and soaks me. Sometimes I just strip off and wrap a towel around me, but this works too; except today I leaned a bit too far and the chair tipped. Mum couldn’t have stopped my fall, so I grabbed the tiles and all was well, but it shook me. She said she was jealous of anybody who can do things for themselves. I think she is also jealous of me going away without her. Once she was dry, the tears began to fall silently. I kept telling her it was only for a week, Monica was going to visit, camping is completely unsuitable, no toilets nearby, etc…but she kept crying – all the way to the care-home. Conor told her she was snotty and should blow her nose, but she was too far-gone today. I don’t know what the care-workers thought, (there were lots of them around this morning) but I’m sure they’ll cheer her up and she’ll have forgotten it all when we come to pick her up again.

I guess I can turn my mind to camp now. When I come back, it will be August and I’ll have my scan on the Monday. (9weeks).

***

Camp was fabulous. This year is our 7th Camp together. To have a whole week in the presence of God and His children is such a blessing. The boys are so much more independent now, that I actually had a good rest as well the opportunity to pray and worship. According to Josh it was ‘the best camp ever’. In many ways it was my best too. I love being able to introduce ‘my husband’ to people at last. We had lots of afternoons to ourselves, to chat and laze around in the sunshine. Unfortunately I had a bad last night and in the morning I had such pain in my abdomen and back. It took some hours before I realised that I was having contractions. We managed to pack up quite efficiently as the pain intensified, but it was very distressing. The journey was a blur through a pain screen and when I got home I was bleeding heavily and got an ambulance to the West Hospital. Eventually the morphine calmed me down, but it still hurt – I just couldn’t keep my eyelids open. I had miscarried before getting to hospital, but the rest still had to be ejected, so they kept me in there until Monday evening. Two beautiful babies now that were not meant to be. They are in God’s hands, but I don’t have the space to grieve.

Meanwhile Mum was supposed to come home on the Sunday, but Simon was able to explain the situation and they were prepared to keep her one more day. Simon fetched her on Monday but I wish I could have had a day or two at home alone to rest and grieve. I think Mum had a good time. Pat, Monica and Alf had all been to see her and said she seemed to be well looked after.

I’m beginning to wonder whether she is perhaps happier with the routines and life in the home, than she is here. She rarely seems to be happy here, no matter how much we lay on for her. At least, she’s happy during the activities, but as soon as she is left just one moment she gets restless and starts to flap with that ‘hanging about’ expression. Last Tuesday was a good example: Pat came to visit, then her Befriender came and they went out for a long walk and ‘put-the-world-to-rights’. They stopped for coffee and cakes and then Mum and I toured the garden and sat out for a chat. At 2pm the O.T.’s artist came and Mum painted her papier-mâché plate; then, after tea, cakes and more friends visiting, the Sitting Service arrived and they had a good laugh, listened to music, had another long walk and drink in the pub… At 7.30pm, Mum’s sister phoned and spoke to her and I heard Mum complaining:

“Nothing much at all! I don’t do anything. I’ve just been hanging about!”

I made sure I spoke to Julia myself and used that day as an example of what ‘just hanging about’ often is in reality.

She’s out walking with her Befriender again now. I often wonder what Mum talks about to other people. I’d love to be a fly on the wall. I want to try doing some alphabet and words later, because whenever we’ve done it in the past, she has improved with the reminder and we’ve vowed to do it regularly – like so many good habits and intentions.

***

It wasn’t a good idea. Not today anyway. She knows how to read the letters of the alphabet still, and can read individual names, but cannot write anything today. She was shrinking her neck backward into her shell and when I encouraged her she would say, “I don’t know what I’m supposed to be doing!”

“It doesn’t matter if you don’t want to write anything today. Your reading is still good.” I tried to reassure.

Then I got out some old photographs, because she usually enjoys looking at them and comments, “I haven’t seen that one before” and smiles longingly as she recognises past times. But not today. The only picture she recognised today was of me, taken when I was about 6 years old. She identified a photograph of her Mum – but she didn’t recognise herself or her sister smiling proudly on either side of her mum. Now she feels inadequate again and I am exhausted.

***

Mum is seeming to deteriorate these past weeks. This morning I woke her, gave her her clothes and came down to make breakfast. After 25 minutes she had done her top, but was rolling the trousers round and round her hands. Taking the trousers from her, she screwed up her face, saying there was such a ‘nasty smell in here’. I said it was probably the commode, as she had used it in the night.

“No I didn’t!” she suddenly growled at me.

“Yes you did!” I retorted. “Do you want to see it?”

I didn’t use it at all. It wasn’t me. I haven’t been today.”

“Maybe you haven’t been since you woke up, but you used it in the night. No one else comes in to use it, Mammy.”

“They did. I didn’t.”

“Whatever! Please don’t argue with me, Mammy. You don’t remember what you’ve done 10 minutes ago sometimes, so you probably don’t remember what you did during the night!”

“I do know…”

Nauseous, rattled and wanting to stick the commode in front of her nose, I dressed her and led the way downstairs. Conor tried speaking and playing with her, but to no avail. I’d successfully spoiled her mood for the morning. Despite a few meagre attempts to converse, we did the school walk in near silence, holding each other’s sweaty mitts.

One aspect that has noticeably deteriorated is her proprioception. When she wants to touch a part of her body, for example, she reaches her hand outwards to external things. In the shower if I give her the soap and ask her to wash ‘down below’ she reaches out, touching all the sides of the shower-cubicle trying to find the bits to wash.

I now have to wash her bottom for her, she doesn’t even wipe it now; she gets the toilet-paper, screws it up and shoves it into her pockets. At the undressing end of every day, when she gives me her rolled up trousers, I tip several hands-full of tissue into the bin. There is no point arguing or showing her the evidence, because she believes she is doing it properly and gets upset if I challenge her. Sometimes, like this last week, I feel the need to challenge her; but I regret it later.

It isn’t her fault, I have to remind myself – frequently.

Two weeks ago she had another fainting fit. Conor was with Nana in the dining room when she suddenly slumped off the chair and hit her face on the floorboards. Conor was freaked, but Nana did her usual jerks and had a nosebleed. She was a bit fazed by the blood and by finding herself on the floor, but we got her into a comfy chair in the sitting room and attended to her nose. She was complaining about her teeth, which she kept dabbing with her fingers. Suddenly she pointed in front of her to the left and exclaimed, “What’s that?” I looked over towards the TV, which was switched off, and asked what she meant, but she kept pointing and saying “It hurts!”

“Touch what hurts, Mammy” I suggested and gradually her hand closed in towards her face and I realised that underneath her fringe a huge swelling had appeared over her right eye. We got an ice pack and phoned NHS Direct, who sent a couple of paramedics. They did a thorough check of Mum’s blood sugar, oxygen, blood-pressure, heart, pulse, breathing and felt around to check that nothing was broken, cracked, or out-of-place in any way. They recommended Paracetamol and sleep. Poor Mum. The next morning she slept in, but had such a whopper of a black eye. The following day was our planned ‘boat trip day’, with the ‘Take-a-Break’ group. Mammy awoke with two purple eyes, but was feeling much better in herself, so we went to the river. Mum became tired very quickly and I had to answer lots of questions about Mum’s ‘panda’ face. I almost began to feel guilty – like I had given her the black eyes.