Before I get into this post properly, I’ll just say that I’m not writing it so anyone can say anything supportive or reassuring – please don’t; I know the natural response is to say I did my best, but …
Over the past week or so, I’ve had a problem dropping off to sleep … nothing significant, just that I’ve been full of cold, so breathing while lying down has been a challenge. During the wee small hours, when I was reluctantly awake, I remembered my mum’s magic kisses …
When we three were children and had problems sleeping, we would request, and be given, magic kisses. These were gentle, barely a touch with her lips, on each eyelid. The magic was that, once bestowed, we would have to keep our eyes closed till morning. It worked. It really did. My mum had magic powers. (I’ve mentioned those powers in an earlier post, in relation to her cures-all- ills cakes.)
Some of you will know that Mum died two and a bit years ago, after a struggle with dementia. She was ill for quite a while before I was strong enough to recognise that and to stop coming up with ‘normal’ reasons for her behaviour, distress and confusion. In my defence (and that of my two siblings), we did not know much about dementia; in fact we knew next to nothing and what we did know was based purely on hearsay and anecdotal evidence. We thought it was a natural process of ageing (Mum was 87 when she died) and meant increasing absent-mindedness. If only. We put her symptoms down to that and her profound deafness – another problem which we didn’t properly address due to differences of opinion with our father. It was more comfortable for us all to do that. Once a child always a child maybe, but that’s no excuse.
There were also several major family issues and history which confused us and meant that we were unable to detach ourselves enough from those and our memories to deal with Mum’s increasing distress. I wish that I (I won’t speak for my siblings) had behaved like the grown woman I was, but old feelings were never far below the surface. I allowed mine to affect how I dealt with a very adult and even frightening situation, in which the balance of power had, or should have, been reversed. I wish I hadn’t. I wish I had been stronger. I would now be able to advise others to do just that, to accept the dramatic changes in family dynamics, but I couldn’t do it myself. I should have.
I now know that a great deal of Mum’s distress, and the horrific events surrounding her being sectioned could have been avoided. That long 7 months while she was incarcerated in a secure unit, where she was distraught, hallucinating and clearly extremely frightened, alternating with being seemingly catatonic due to the drugs she needed to keep her safe, might have been avoided. I, as the so-called ‘sensible one’ of the three, (the mysterious ‘everyone’ said so; therefore it must have been true) should have taken responsibility and done something before her illness manifested itself so that there was no safe alternative to her being sectioned with all the horrors that entailed for everyone involved.
My brother had been the ‘naughty one’ while we were growing up; my sister was very much our baby sister, so I should have been able to take charge. They have both since fervently denied that I should feel any more responsible than they do, but I do. In fact my brother is seemingly philosophical about Mum’s illness: it’s happened; it’s past and no point dwelling on the circumstances. All we can do is learn, realise we did our best and move on. I wish I could be like that.
Once events had taken their catastrophic turn, we were all equally involved and played to our strengths; my brother dealt with the administrative side (there is a great deal of that); I mostly did hospital visits. He visited too, but some of Mum’s symptoms and the ways in which her distress manifested itself were extremely difficult for a son to witness. He did more than his fair share by visiting my father who, by this time, was thoroughly confused, understandably, by the turn events had taken and whose behaviour was consequently difficult to deal with. I couldn’t; my brother did. Family dynamics and history prevented me. My sister supported us all especially when we called for help, even though she lives in a different part of the country.
Thankfully, and largely due to help from a wonderful Community Psychiatric Nurse, Mum’s final few months were spent in a lovely, caring and understanding environment. Vicky (the CPN) supported us through the process of finding a Nursing Home, where Mum was given the love and respect she deserved, even though she was probably, by then, sadly unaware. I eavesdropped shamelessly when the staff were carrying out personal care for Mum and their attitude was always one of complete respect; they maintained her dignity; they showed tenderness and understanding. They were incredible people.
On my part, however, no amount of visiting Mum, caring, feeding her, comforting her while she was sectioned and after, explaining her needs to those caring for her, attempting, and mostly failing, to deal with her distress will make up for not being there when she really needed help. I still feel responsible for how my mother experienced the last few years of her life. I always will. Yes, I did what I could at the time, but her extreme distress could and should have been avoided. Things did not need to get to that point. If only I had been able to detach myself enough to do what I would now advise anyone else to do. Recognise there is a problem; disregard family dynamics; ask for help; make a fuss until someone professional listens and that help is given. There is no cure; there is no treatment, but events don’t have to follow the path they did for my Mum. There is, however, I have since learned, ways of mediating the dreadful effects of dementia, so that the extreme distress and fear experienced by my Mum can be avoided to some extent at least. Mum could have been one of the old ladies enjoying being in the sunny garden at the Nursing Home, laughing at the antics of staff playing rounders, as others were one day when we visited. Mum was in bed, unable to speak or respond at all. Again … if only.
Just to compound that feeling of not doing what I should have done, and arguably far, far worse, I made the wrong decision about my priorities, not quite realising, after a conversation with her Nursing Home, that the 7th January 2014, two days before her 88th birthday, would be the day she died. I visited the day before with flowers and cards. It was convenient; it was a Sunday and after all, I reasoned, Mum wouldn’t know the difference. Monday 7th was the first day back at work after Christmas and I didn’t really want to go back; I also didn’t want to ‘use’ my Mum as an excuse for not going back on that first day.
Consequently, I was not there, even though I’d said I definitely would be. I didn’t read between the lines of the telephone call before I left for work. I questioned my motives and priorities instead and I shouldn’t have. I should have gone with my gut reaction and been with my Mum when she needed me. She had been with me, but when she needed magic kisses there were none. She wasn’t alone; a wonderful Care Assistant was with her and she described how Mum had been when she died when I went to be with her having had the worst phone call of my life, while I was at work getting my priorities wrong. She stayed after her shift ended to ask me how I wanted her to be dressed and took the trouble to phone me that evening to say how beautiful Mum had looked when she was taken to the Chapel of Rest. She didn’t; I know she didn’t; she hadn’t for quite a while which is the harsh reality of dementia, but it was still lovely of the Care Assistant to reassure me that all was as well as it could be.
Despite all the efforts of that kind, caring person, I will never get that day back. No amount of visiting during the time leading up to that day, or too late chats with someone else, will ever make up for that omission and faulty decision-making. Hindsight … if only again.
However, despite all that, it struck me while I was struggling to sleep, that it has recently become possible, sometimes even effortless, to remember happy times, times when having my Mum made me feel safe, warm, comforted and able to experience her magic powers. Those moments happen without trying and usually when my defences are down, as they were in the early hours. It’s taken a while, but that initial rawness and ongoing guilt is beginning to take a back seat. I know it won’t always be a straightforward process, but, at last, there is hope. I will always have regrets, of course I will, but they won’t change anything. The only thing which can change is how I deal with them. They are beginning, just beginning, to take their place in the recesses of my mind, while other feelings, memories and gratefulness to the staff at that Nursing Home float to the surface.
xx
Retroladyretires 