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.”
“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.