...... dancing in the fallen autumn leaves ......
This was Lily on her way home from playgroup on Monday. I do love the phone for catching moments like these - kids know how to do that “I love life!” thing better than anybody.
When I was looking through the old photos for Mum I came across a couple of me around the same age as Lily is now in very similar mode.
Where did that happy wee girl go I wonder?
Mum’s had a dreadful time of it lately. She had a fairly good run of 9 days then became very distressed again, moaning, upset, asking to die, refusing to eat, drink or take medication and also seemed to be in a lot of pain. Her steroids had been reduced to one a day and we were all convinced this had something to do with the upset (Lorna had made a chart which showed the correlation between medications being changed and her being distressed) so they were put back up to 2 a day - one in the morning and one at lunchtime. This appeared to alleviate the situation somewhat although she still seemed to be in pain. Last Tuesday she had the worst day ever and eventually - after a great struggle - Lorna finally managed to persuade the doctor to put a morphine pain patch on her which lasted 72 hours.
This appeared to work well although obviously made her a bit drowsy. The following day we had a review meeting which Lorna & I attended. To be fair we couldn’t really decide much because we could only guess what was causing all the distress mainly because we can’t track the progress of the tumour as it would be too distressing for Mum to go through a CAT scan. However it was quite clear the home were not happy with the amount of nursing care required for Mum and mentioned that it might be better if she was moved to a nursing home at this point rather than later when she would be more ill.
I had no idea there were actually two types of homes until all this happened. Residential homes and nursing homes are quite different and the home which Mum was in was a residential home, not equipped to give large amounts of nursing to residents. But then what doesn’t make sense to me is why did they accept her in the first place in that case?
The situation hasn’t been helped by the arrival of a new manager about a month ago who has rubbed us up the wrong way right from the start. She also didn’t attend the review meeting which seemed rather bizarre to me. Although I can understand you would be snowed under starting a new job but surely attending a review meeting for one of your residents whose circumstances has changed drastically in the last week or so would be a good way of getting to know that situation and also getting to know the family?
Apparently not.
The review meeting was supposed to take place at 3 but just before it, the doctor arrived to check on Mum to see how she was doing with the pain patch. There was nowhere private to do this (apart from her own room) so we all crowded into the office and I felt so sorry for poor Mum, woken up from a deep sleep, sat in a wheelchair, hardly able to understand who was asking her questions far less be able to understand them - and everyone towering over her. I hunkered down on my haunches and held her hand but I don’t think it made much difference.
Finally she was allowed to be wheeled back into the Sun Lounge and the doctor, Lorna & I continued to discuss what would happen if she got worse. The doctor wasn’t one who had seen Mum before and didn’t know her and he seemed to think the situation was manageable with the support of MacMillan or Marie Curie nurses if needed as well as guidance from specialist staff. Kirsty, the new manager, came into the room and sat at her desk in the middle of this and it was quite plain she didn’t share his sentiments.
The next day I went in at around 11.30 a.m. and found Mum sleeping soundly in a recliner in the sun lounge. I knew she would be drowsy because of the morphine in the pain patch so I just let her sleep. Caroline, my niece, came in and we chatted, deciding to let Mum carry on sleeping through lunchtime as she obviously needed it. At one o’clock she woke up naturally and was quite alert and hungry so I went through to the dining room to ask for some food for her and she polished off a good plate of mashed chicken and potato. This was good as she had hardly eaten anything in the previous few days.
Caroline suddenly remembered her lunchtime dose of steroids which should have been given at half past 12. She went through to the office to ask whoever was on duty for it and returned saying she had been told Mam had had it! I said well it must have been through divine intervention then because she’s been soundo since I came in and no-one’s come anywhere near us. Just then the nurse on duty appeared and came over to us, still maintaining the drug had been given, and suddenly deciding “she was given it before lunchtime” so, rather than say “I’ve been here since 11.30 etc. .....” I asked “oh right - what time did she get it then?” Flustered she went off back to the office muttering. Then appeared back with the tablet!
With no explanation to Mum she poked it into her mouth and as I was feeding Mum ice cream at the time, she calmly took it back out of her mouth asking me “Is this a piece of chocolate?” It was quite funny! Anyway I managed to get it on her tongue and give her some apple juice and finally it went down the hatch but the nurse had vanished by then - if it had been up to her she would have recorded that she’d got the tablet when, in reality, it would have been down the side of the recliner with no-one any the wiser!
I was furious. I can’t see how they can get this wrong - either a drug is given and written up or not given - there should be no confusion. And it’s not the first time it’s happened either.
Anyway it’s now a moot point because in the days following that she got much worse to the extent that the doctor had to sedate her then decided to have her transferred to the nearest hospice which, unfortunately, is 40 minutes north of Inverness. This doesn’t mean she’s near the end - it’s purely a measure to try and get her pain under control and to do blood tests and so on to try and determine what her body’s doing and see if there’s anything else which needs managed.
She’s been pretty sleepy since she went in and at the moment they’re trying to find a balance between managing the pain and keeping her alert. Lorna has been with her every day for hours and Ian, my oldest brother, went up yesterday as well and although Mum was awake for 3 hours in the afternoon, there wasn’t very much in the way of conversation.
She’s definitely not going back to the home though thank goodness. If she doesn’t stay at the hospice she’ll be transferred to a nursing home - however there are no places in any in Inverness so it’s a bit of a worry where she’ll end up. I’m hoping she’ll be able to stay there for a while but I think that’ll depend how she is in the next week or two - if there’s nothing to say that there’s not much time left then I don’t think they’ll be able to justify keeping her there but I really don’t want her shifted to somewhere miles away from any of us. I suppose there’s no point in worrying about that though until it happens.
The main thing is she’s getting good nursing care now - the staff as I understand it are lovely and are all working together to get on top of her pain and distress - Ian said it feels more like a family home than a hospital and everyone is so nice.
I’m going up on Saturday for the night and am keeping my fingers crossed a storm which is apparently coming our way tonight will have blown over by then so that I’ll be able to get there. After leaving Inverness I have to cross a bridge over the Firth of Forth to what’s known as the Black Isle and then over a causeway to the small village of Invergordon where the hospice is so high winds and a storm is not what I need.
Each time I see her there’s a little bit more deterioration. When I would go into the home to see her and she was having a good day her eyes would light up when she saw me but I’m pretty sure she couldn’t have said exactly who I was - it was almost like she knew I was family but wasn’t sure which part of the family I was. The last twice though she’s thought I was a member of staff. However I seem to be okay with this - perhaps because it’s happened gradually and because I knew there was something wrong a good while before she went into hospital.
Lorna has had more luck because she’s seen her pretty much every day - Mum recognises her as someone familiar. And as long as that continues then we’ll know that she hopefully won’t be frightened and know that she has someone there for her.
In a way I’m glad I don’t have any kind of strong faith because I have a feeling it would have been severely challenged these last few weeks.
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