This week’s is a little longer, but you won’t get one next Friday, so it’s a chance for some of you to catch up...
It’s now nearly two months later. Christmas has been and gone and yesterday we celebrated the ‘Epiphany’. So much has happened emotionally and events-wise over this interval.
Debbie came for a few days at the beginning of December, but as she was largely concerned with shopping, I didn’t get a break. I did communicate some of my concerns about me coming to the end of my ability to look after Mum at home. She says she will support me in any way she can and does understand that it has been very difficult for me.
We saw Monica briefly, but apart from that we have had few visitors. It is like that now.
On Christmas Eve, Joshua had a burning fever and spent most of the day in bed. After mid-night Mass, Simon was also burning up and the two of them spent the next few days with an appetite only for Paracetamol and water. Most of Christmas dinner went into the freezer.
Joshua, Simon and Mum are all still coughing badly. They had a virus, apparently, but Mum had a chest infection too and is now on her second prescription of antibiotics. Unfortunately Mum’s coughing has caused ‘stress incontinence’, which has given me wet chairs, wet mattress and a whole heap of extra washing to do.
Sitting in the waiting room at the surgery, with the whole family, was a rather comical experience. Other service users were quite clearly avoiding sitting anywhere near us. Mammy was distressed, coughing and wheezing severely. Joshua looked mentally disabled with his ashen face poking out from under his long woolen hat, exploding into coughing fits; the doctor even asked me if he attends ‘regular school’. Simon was looking like a vacant, zany zombie and Conor, wearing gloves and a T-shirt with ‘Heavily Medicated for Your Safety’ printed across the front, was acting the part, twitching and groaning, for fun.
I saw the doctor alone last and, not surprisingly, she recommended anti-depressants for me (which I refused) and prescribed the pill, which Simon had suggested that I now take. I had hoped that we would have a baby, but perhaps I am too old. To take the pill would be to give up hope. I could carry on with the uncertainty, expectation and the disappointment and agony each month? It is another difficult dilemma.
Mum went into respite over New Year and we set off to see the New Year in with Simon’s family.
The prospect of putting Mammy, against her wishes, into a home; the thought of there being no hope of a baby; the house full of sickness; and Simon’s increased anxiety are all pulling me down very low. Lord, give us wisdom.
Today is back to school, but it’s Conor’s turn to be sick, so I’m tied to the house again. At least I went out into the garden for a tidy-up and felt a bit more enthusiasm creeping back into my spirit out there.
Tuesday today and finally an hour’s solitude. I managed to have a chat with the garden, but I missed the phone – it was Mum’s dementia doctor and I now feel really agitated because we have waited 6 months for this and I missed it. January 8th was firmly printed on my mind, calendar and diary – but all I had remembered was that Mum’s Befriender was coming this morning and the district nurse this afternoon. She left a message that she would send another appointment, I just hope it won’t be another 6 month wait.
Out in the garden I was delighted to see deep-red wallflowers, emerging pink stocks and little proud fresh-green shoots from last year’s bulbs. I was feeling a sense of awe in the hardiness of Nature. Only the second week in January and the flora is waking up again to dazzle us for another year. The mini-roses are still in bloom and the Sweet William has not stopped flowering since last March.
When I woke Mum she was lying curled up on top of the duvet. Being slow to learn, I asked her why she doesn’t get back under the quilt, after she’s been to the toilet. It was a stupid question that she obviously couldn’t answer and made her feel distressed and grumpy.
I have to dress Mum every morning now. The socks she can usually manage if I present them one at a time. This morning she put the left sock on and then sat looking quizzically from the sock in her hand to the socked foot and to the bare foot, for what seemed like 5 minutes, so I took the sock and put it on for her – to put us both out of our misery.
The inhalers are now used at least twice a day and she still does her happy piggy impression and asks, “What does it do?”
When Mum was last in Broad Glade, they suggested that we request incontinence pads from the NHS, as they are both free and effective. She came home wearing one more like a nappy that day. A nurse bought some pads with her last week and, after filling in copious forms, she left me with a ‘urine chart’, to fill in during the week, and a sample bottle, ready for her next visit. Apparently all is well – the sample was good and the scan to see how well she empties her bladder is fine too. She’s going to keep us supplied with big and small ‘nappies’, so that should really help my washing load. They are all valuable improvements and a blessing.
Yesterday I went in to Mum’s room to find the commode upside down on the carpet. There was nothing I could do, but get on with it – it really makes me heave! Of course the urine soaks through the carpet and the poo gets flattened by the seat and various components of the commode. To have to reassure Mum and get her ready, with a nostril full of it, is quite unbearable for me. Mum holds on to those negative experiences for so much longer than she does the positive ones. Throughout the morning she was downcast and sniveling, despite my hugs and reassuring words.
We had an interesting discussion on Tuesday morning. We had been out walking a couple of times already and we were having a cuppa and listening to an inspirational piece of music, when she began to cry gently.
She said, ‘Daddy is here!’
During the course of the conversation I learned that she couldn’t see him with her eyes, but that he was smiling and at peace. She was questioning why this happens to her, remembering that it used to happen a lot more, but that she didn’t think he would still be coming to see her. I asked whether she believed in an afterlife and whether they would meet each other again. She didn’t know quite what she believed, but added that if they did meet again, ‘I hope he doesn’t hurt me’.
Poor thing. I shared my hope that, if we do meet again in the afterlife, then ‘Every tear will be washed away’, (*Bible: Rev 7: v.17) That there will be no more pain and that we will know truth.
I received a new appointment to see the dementia doctor on April 22nd.
The ‘epilepsy specialist’ in Neurology has written to the GP, saying “These features [on the EEG] are suggestive of an increased disposition to epilepsy. Please let me know if I need to see her again.”
The GP doesn’t know what to do and has passed it back to the specialist to ask what, if any, medication she recommends. The dementia doctor didn’t want to ‘step on the toes’ of the Neurology specialist, so, thus far, nothing has happened. And I missed both appointments.
Well, she’s still coughing and it’s causing her so much distress. We went again to the doctor, but the chest infection seems to have gone, so a new investigation – ‘reflux’- is being tried with the intervention of an stomach-acid reducer, ‘Lansoprazole’. I also enquired of the GP about communication from Neurology and ‘Hey, Presto’, there was a letter on the system saying that Mum should start taking drugs to treat her ‘epilepsy’. So, now she has to chew some ‘Tegretol’ after supper too.
Another Monday and we are back to the doctors. This doctor wants to try oral steroids again, to see if the cough clears with them. If it does, he will deduce that it is definitely asthma-related and then we might be able to move forward with that approach.
Today we had to stop halfway to school, because Mum was distressed and refusing to walk properly, but wouldn’t say what the matter was. I sent Conor on ahead and Mum told me that she ‘keeps peeing’ and ‘can’t stop’. She said that her clothes weren’t wet though and that she wasn’t doing it at that moment, so we changed direction and went home. She isn’t making much sense at all recently and is often wet. I’m so glad we got the pads.
I wonder if the Tegretol isn’t making Mammy more dopey and confused than ever, but it’s hard to tell, as she has good and bad moments anyway.
I am so grateful for my garden. Several times a day I wander around that beautiful space, marveling at the new growth and constant miracles and change. I watch the birds – still flocking and flying in fabulous formations. I speak to the garden too. Mum talks to the plants as well and hugs the trees – so we must both be potty! I have two lovely, orange crocuses in the front garden and bunches of bulbs waiting to flower all over the place. We are eating lots of brussels now, so that I can get the vegetable patch prepared – to plant beetroot, red-onions, blueberry and blackcurrant. I’ll do rocket, courgettes and beans again later too.
I finished an email and went through to Mum and to make some tea. She was sitting hugging herself tightly, which looked to me like she was cold, but
“No, it’s Roger” she sighed shakily, “He’s dead!” Pause.
“He died last year, Mammy. We went to his funeral.”
“No, he was here, we were talking…and then he had to go…he was there (points to the window) and a car came…it knocked him down…he’s dead! …We were talking here, just now… That lady was here too…I’m going mad! …He came up here and I spoke to him…Is he alive? … I’m going crazy…”
“You are not going crazy, Mammy, you are just mixing up your memories. Roger used to come to see you a lot on Orkney and he came here too, to see us last Christmas, so you have seen him in this room. He did die in a car though; it was tragic, as he mistakenly reversed his car off the pier on Graemsay, after picking up his groceries.”
I wonder whether the ‘visits’ from Daddy weren’t also part of a confused thought and memory process?
Mammy has now seemingly forgotten how to swallow tablets – but not food. Yesterday she had to take her first dose of 8 tiny, red, steroid tablets. She just couldn’t do it. The tablets kept lodging between tongue and teeth, as she gulped down several glasses of water. An hour and a half later they were finally gone. We had the same problem then at bedtime with the ordinary tablets – even the capsule she tried to chew and splutter out all the gritty contents.
This morning’s 8 steroids got to me. After spending half an hour on the first two, I abandoned the job and we took Conor to school. We had to come back and take the rest, before I could take her to the Day Centre. It was another hour before, with one still in her mouth, I took her out.
On the way back I spoke to the Pharmacist who said that there are soluble steroids, but the doctor would have to prescribe them. I spoke to the doctor’s secretary and she wrote it all down. She was very empathetic and I felt myself beginning to cry, so I thanked her and left.
What a difference soluble tablets make. And she likes the taste of them. She still can’t do the bedtime ones though.