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.
“To sleep on the floor in a tent?”
“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.
“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.