Week Twenty-One

My lovely Nana, with Avril and Julia

There was a message left for me this morning from the County Councillor – he got my letter about staffing in Care-Homes this morning and responded immediately. He thanked me for bringing it to his attention and is going to take the matter up with the Strategic Director and ensure that I get a proper response asap.

I phoned Broad Glade to see how Mum was before I went in. Apparently she was compliant this morning. The CPN had been in yesterday (I’m disappointed that I missed her, having asked especially to see her) and she has prescribed a new medication. They were unsure what the new medication is, but I’ll find out later.

I got there just before lunch. She didn’t hug me quite so tight, so was presumably not as distressed. She said she was “All right now!” and seemed settled and happy having lunch. Getting ready to go out, she was in the bathroom, when suddenly she looked up and scowled at her reflection, saying, “Does she always have to come?”

I realised that she was being serious, so I asked, “Do you mean that gorgeous lady in the mirror?”

She grunted, “I don’t like her. She’s always there!”

I had to laugh, but it was so difficult to show her that it was her own reflection that followed her into the bathroom. She understood eventually and laughed with me, but I expect she’ll forget again. Maybe she expects to see a younger, brown-haired lady in the mirror? I know I often get a shock when I happen to see myself in a mirror!

We went off to shake collection boxes at Tesco. She wore a rose hat and we filled our boxes and met a few lovely people. We did a good stretch of walking afterwards and Mum and Conor had the chance to chat and play.

Mum is concerned about her eyesight again. When we got back to Broad Glade, they took her to do her night-stuff and Mum expressed some anxiety about not having much money. I reassured her that she had already paid for it all and then she let us go quite happily.

***

Sometimes I get some very morbid thoughts of life and death, etc. I’m not afraid of death, but of dying; and I anguish for those who live miserable lives because they don’t know the love and peace of God; and I miss people terribly, who have died. I have been having emotionally unsettling dreams about my dad, Pa, Pat, Roger and so many loved ones who have died.

I saw Mum on Monday and we went for a very long walk; taking flowers to Pat and Pa’s graves and enjoying each other’s company. She still seems more settled, but whittled again about needing ‘new eyes’. She even mentioned that she’d like to take up the guitar again, which I’ve not heard her consider for a long time. I agree and go along with it all for now.

I did see some senior staff at Broad Glade, but they all appeared too busy to talk, so I smiled only.

Yesterday I got home to find a message from a new Social Worker, saying that he had ‘been asked to do an assessment update of Avril’s needs, as Broad Glade were having problems providing her care’. I found myself shocked to get such a message from a stranger. Fortunately, he saw fit to inform ‘family’ and to get me involved from the beginning of his ‘new case’. I do not understand why Broad Glade did not tell me. I do understand that they have to be proactive, but they could at least communicate their intentions with me.

I found our new Social Worker’s approach to be professional, supportive but non-committal. Interestingly, he said that he’d gone along to Broad Glade on Monday, but that they were all ‘too busy to see him’, so had left again without meeting Mum or talking with anyone. He said they ‘must have been a bit short-staffed’. Broad Glade had contacted Social Services because, they said, Avril had become ‘verbally and physically aggressive’ and had, at one point, ‘pulled a resident out of her chair’.

When I’d recollected myself, I phoned the unit manager at Broad Glade. I now wanted immediate answers about GP, medication, CPN input and anything else they were considering doing or that I might need to know.

I did get some answers: – Mum is now on Trazodone twice a day and apparently the CPN said that that was ‘all they could do for her’, for now. Mum is also now registered with a GP. The unit manager said that they had contacted Social Services to reassess Mum ‘as backup’, so that they can provide the best care for her. She described Mum as ‘quite threatening, although she hasn’t actually hit anyone’. She also described a situation last night, where they had provided ‘entertainment’ and Mum, although enjoying the music, got distressed in the room, because of the noise volume. They then sat her just outside the door and Mum enjoyed it fully, she said. To me it just shows how a little flexibility and understanding enables Mum to fully participate in something she enjoys. She said that they would involve me when Social Services come in to assess and said I must always go and ask, if I have questions. I think that everyone is doing their best, but that priorities and resources vary.

Trazodone is a serotonin modulator used as a sleep aid and for depression/ anxiety/ schizophrenia.

***

The Social Worker did an assessment of Mum yesterday, but is waiting for the nurse to do an assessment too. He said that Mum was clearly very distressed and that he felt sorry for her. He doesn’t think that Broad Glade is a suitable place for Mum, in that they don’t have the staff, or the time, to give Mum what she needs. His concern is that the sort of environment better suited to Mum’s needs tends to be much more severe in terms of the other residents and their behaviour. It could be quite a scary environment for Mum, if we don’t look carefully.

I had offered to mind Isabelle’s children this morning, but at 10 O’clock, Broad Glade phoned to say that Mammy was very distressed and could I go and calm her down. I was planning to take her out with her sister this afternoon, but…Simon was here and able to fetch her instead. Mammy was in a bad way and cried a lot. What follows are snippets of what she expressed between sobs and tissues. In brackets are some questions or clarifications added by me: –

“Silly, silly man!…He’s gone!…He didn’t have to do that!”

(Do you think he did it on purpose?)

“I know he did!…I’ve said my Goodbyes…He knew he was going…He said so, but I didn’t believe him…He said, ‘I’m going to bed…and he killed himself.”

(How?)

“A knife. I don’t know what sort. Then he threw it away and I couldn’t get it back…Don’t tell the kids will you? …He looked lovely when he went…Don’t tell the boys…Silly, silly man!…He knew that we loved him…I think he was happy…I’d never seen him like that…dying…”

(I thought Daddy died at Jimmy’s house after too much whiskey?)

“Yes, he was there and then he came back…He came in HERE (she was pointing around the table) and he said he was going somewhere…I didn’t know he…YOU STUPID man! …Don’t tell the kids, will you?”

(When did this happen, Mammy?)

“It was round about here…about this time…he said, ‘I’m going now’ and then I found him…Don’t tell the kids…I don’t know what they’ll do…”

(I explained that Josh and Conor, had never met Daddy, that he had died 13 years ago, before Conor was even born. I said that Daddy had never been to this house. Mum frowned for some time, looking very confused.)

“No, he WAS here. I know it sounds silly, but he WAS here.”

I made us all some more tea and came to see her grinning like the proverbial Cheshire cat…

“He’s just come…he’s smiling…he looks lovely…BIG HUG FOR ALL!”

Isabelle collected her children after lunch and Conor took Mum to watch a DVD, whilst we waited for her sister. Today is (their mum’s) Nana’s anniversary – 26 years ago she died. When Julia came, we took some flowers up to the remembrance garden. Julia approves of the remembrance vase. We weren’t there long, then we drove into town to drop her off and I took Mum back to her ‘home’.

She always asks me why I’m going and when I’m coming back. ‘See you soon’, isn’t enough.

***

Today Mum and I came back from the TAB Summer picnic, expecting Debbie any time…

“What are you feeling, Mammy?” I asked, because she was clearly distressed.

“You don’t want to know!” she growled, giving another of her very suspicious, shifty looks.

“I really do want to know what you are feeling, Mammy.”

“Horrible…If you want to know…I want to kill myself…I know it’s wrong, but I can’t go on…I can’t live any more…I’ve felt a long time…I’m sorry. It’s stupid. It’s wrong… I know that I can’t do it though…kill myself…I’m a coward… I’d better clean up. The boys will be coming home…I’m sorry I’m a coward…I can’t.”

“I’m glad you are a coward, Mammy. I don’t want you to kill yourself. Did you think about how you would kill yourself?”

“I can’t even do that!” she sobbed.

“Do you think you should kill yourself because of Daddy?”

“”I can’t though…”

“Good. I’m glad. Do you think Daddy is waiting for you to follow him to death?”

“Probably…” she drifted away…

“If Daddy’s in heaven, I’m convinced he’ll be praying for you to have the grace to live a full life, not to die.”

“I can’t do it. And I don’t want to…I’m sorry…” she reached out for a touch…

“I forgive you, Mammy.”

“Thank you.” she smiled.

I wish I could takeaway her distress and pain.

Eventually Debbie phoned to say that she was visiting a sick relative-in-law and wouldn’t be in till late, so I took Mum home again. As we got near to Broad Glade, she asked, “Where are we going?”

“I’m bringing you home.” I answered. “See you later.”

“Are you going?” she sighed sadly.

“I’ll be back soon and Debbie is coming too. Be good.”

“There’s nothing else.” She added with evident disappointment.

I went home, sad and disappointed that Debbie hadn’t managed to see Mum today. I always feel I have let Mammy down so badly. Still, it was lovely to see Debbie and her son James when they did turn up. They had very good reasons for not being there earlier. They were on a different, but equally important mission with a dying lady. Debbie and James promised to spend the following day with Mum and we were all happy to share the evening together.

Mammy in Stromness, with her beloved Grandchildren – Rachel, James and Olivia.

Tuesday evening we said farewell to Debbie and James, and then it was Conor’s ‘Farewell to Year 6’, an evening of drama, song and tears – lots of them, like a dam bursting and sending a domino wave over the whole line-up of year six children.

Of course Mammy has no idea now that Debbie has been to see her and there’s no point trying to contradict her. In her reality, she is right. She always has been. A strange mixture of the stubborn ‘I’m right and I know it’ and the other ever-present ‘I am useless/I can’t do it/I’ve got it wrong again’. She does speak conflicting messages to herself. I am not dissimilar.

It’s a busy week getting ready for a trip to Germany and then for Faith Camp straight afterwards. So much to look forward to and so many friends to be grateful for. Most importantly, I have asked Isabelle, Julia and Monica to visit Mum and look out for her whilst I am away. I know that Monica will see her as often as she can. I feel much reassured by that.

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 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!