TW: Dementia, End of Life Care, Death, Bereavement, Depression, Generalised Anxiety, Separation Anxiety, Panic Attacks, Suicidal Thoughts, OCD, Intrusive Thoughts (violent/sexual), Sectioning under MHA.

It’s a long one!

Recovery from my first long depressive episode came about in 1998, at which point I was discharged from the psychiatrist and CMHT, and was followed up for a period of a further year under the close scrutiny of my GP to reduce my anti-depressants. In October of 1999 I became med-free, for the first time in nearly 6 years.

It wasn’t until the Autumn of 2013 that I conceded defeat (in my mind at least) and admitted that I was depressed again and that I needed to be medicated once more. I can now see that accepting tablets was not a sign of weakness, but an essential step in proactively helping myself. It was my own impossibly high standards that caused me to feel I had failed.

Back in that recovery period of the late nineties, I had vowed I would never let myself get into a depressive state again, and in fact for many of the subsequent years, I did actually believe that I had sufficiently learnt more effective coping strategies and self-care principles that would sustain my mental health come-what-may. And to be fair, my track record, over 14 years had been pretty good. It certainly wasn’t an absence of stress that caused me to remain well, so it did appear that I was coping better. It is only recently when I have meticulously scrutinised that seemingly illness-free period, that a few doubts have began to niggle at me, but that will, I believe, become a whole other blog at some point. On the whole, I coped during that time with parenting, caring, working, volunteering, studying, physical disability and a hugely significant bereavement. However, that ‘bit in between depressions’ will also become another blog in its own right at some point, if not several!

In the Spring of 2013, I was approaching the final semester of my Foundation Degree. I had applied and been accepted for the following year’s BA Top-up course. I had been volunteering in a pre-school for over two years previously, which appeared unlikely ever to evolve into a paid position, so when a fellow-student at uni suggested I apply for a vacancy at her nursery, I decided to give it a go. It would mean working all year round, rather than just term times, but the post was only actually contracted for one day a week, the rest would be made up of casual hours (which I was under no obligation to accept in school holidays unless I wanted to). I had chatted with my son, and he was confident that being home alone one day a week was manageable, so I went ahead and applied, very much impressed my friend and the other manager at interview, and I believe the expression used was, “Blew the other candidates out of the water!”

I was feeling like life was going pretty well for me. My biggest concern was my mother’s health. She had been diagnosed with Dementia, and my dad was caring for her full time at home. I had encouraged him to contact Adult Services to see if they were able to offer him any respite care, at least when he did his shopping each week, as he had been asking me to sit with mum, which was becoming increasingly difficult when I was trying to get my final Fd(A) assignments completed. He seemed to be coping ok though, most of the time, and I helped out when and where I could between parenting, work and uni.

As the summer holidays approached, and my assignments were handed in, life suddenly decided to bowl me a curveball. My son, just turned 13, had an unexpected return of the anxiety symptoms he had suffered from periodically since age 8. There didn’t appear to be an apparent reason, he was happy at school and doing well there, wasn’t being bullied or feeling worried about anything in particular, he was just anxious. Especially where being separated from me was concerned. This didn’t bode too well for the imminent long summer break where I was going to be working one day a week. I determined not to panic, and hoped that once the holidays started and we would be able to spend lots of days together, plus our week’s break away, that things would begin to improve. I even managed to work my one contracted day on the first week of the holidays, and although my son wasn’t too happy about it, the following week we would be together at the seaside, nicely chilled, enjoying some quality mum/son time in the sunshine. Surely a lovely relaxing holiday would put the world to rights?

Well, sadly not, it appeared. Despite it being a very familiar, and safe environment, my boy’s separation anxiety was only getting worse. The more time he spent with me, the less able he seemed to do anything without me. He also appeared to be experiencing a sudden, massive influx of growing-up hormones, which he found unsettling, distressing even, however much I reassured him that it was very normal for a lad his age, and that even finding it daunting was not an unusual response. His anxiety was just spiralling more and more out of control.

We returned from our holiday mid-morning on a Monday. I telephoned my dad, as I always do after a journey to let him know that we were home. He sounded distracted and cross, which is not how my dad usually reacts to hearing from me. He was obviously not in the mood for a chat, so I took the bull by the horns and asked him what was upsetting him. I wasn’t really prepared for the onslaught that followed, which although not directed specifically at me came like a bolt out of the blue. “I’ve got a social worker coming this afternoon. I can’t cope with your mum anymore, she won’t take her tablets, thinks I’m trying to poison her, that I have her imprisoned here, and she is so nasty to me and keeps lashing out!” Somewhat taken aback, and slightly overwhelmed as I surveyed the mountains of luggage, just in from the car, but yet to be unpacked, my reply came without hesitation, “What time is the social worker coming? I’ll be there.”

Even given this conversation the scene that met my eyes that afternoon was worse than I could have imagined. At one point I had to physically put myself between them to stop my mum attacking my dad. In front of the social worker. Every time dad tried to speak to myself or the social worker, my mum would screech over the top of him, “Don’t listen to him, he’s telling the most wicked lies about me!” And she actually believed it. The haunted look in her eyes gave her away. Dad just looked broken, exhausted and so, so sad. He’d been her carer for a good while, but he’d never looked so old and worn out. It was just horrible.
The social worker was vague to say the least. I pointed out to her that my dad needed an emergency respite break, clearly they couldn’t continue as things were. The longer mum went without her medication the more paranoid she was becoming. Yet still the social worker left without giving any firm assurances that dad would get the break he desperately needed. They promised they would be in contact.
Tuesday came and went and dad heard nothing. When he still didn’t hear anything by Wednesday afternoon I called them for him. Still they were fobbing us off, and still mum was getting worse. Come Thursday, I told my son I couldn’t take the day off work, it wasn’t fair on my colleagues and that I had arranged for him to go to the house of a family friend. He wasn’t best pleased, but with a lot of my attention having been directed towards my parents in the previous days, he accepted that the friend, who always stopped what she was doing when my son visited so she could devote her day to him, was at least second-best to having me at home.
I loved my new job. The children I worked with in the pre-school room were truly delightful and I adored their chatter, their imaginings, their honesty, their wonder. It was a magical place to work and the staff had accepted me readily and wholeheartedly. At the end of the day, I drove home to get changed and freshened up before going to collect my boy.
Back home I noticed the phone’s little light was flashing to indicate someone had called, but there was no message. I scrolled up to see the call list – my parents’ number. I rang them immediately, but there was no reply.
My mind was racing, but deep down I had a feeling that my mum had been taken into the dementia ward so she could be assessed and stabilised and my dad could have a rest. I assumed he was still settling her in. When I finally got a call from my dad later, yes, that was the general gist of what had happened, but in the version in my mind I hadn’t really thought through the necessity for an ambulance, paramedics, GP, police officer and social workers because mum had point-blank refused to go to hospital voluntarily and had been sectioned under the Mental Health Act. My dad was clearly traumatised by the whole experience, but I did my best to assure him that it was absolutely in both their best interests in the long run, and that mum would be well looked after in hospital.
When I collected my son, he was distraught to hear about the plight of his beloved grandparents, and once more his anxiety went through the roof. He realised, as I did, that my dad was going to need a huge amount of support from me in dealing with the hospital staff and social workers in the coming days.
Balancing the needs of my elderly parents with those of an anxious teen was never going to be a walk in the park. Already I was beginning to notice how tired and stressed I was becoming. Our holiday felt a lifetime ago. I wasn’t sleeping terribly well and was getting irritable. I knew what I had to do. I made an urgent appointment with my GP and told him I was stressed, exhausted and needed a sick note for the time-being. He didn’t argue. I think at that point he asked whether I thought I was becoming depressed, but I was pretty confident that without having to worry about work for a while, and with mum now safely in hospital, hopefully things would settle down a bit and I would have an opportunity to rest up before the sandwich making and school runs recommenced.
It was a nice thought. My dad found it hard to relinquish his caring responsibilities and it wasn’t long before I was accosted by the ward sister one afternoon when visiting mum. She was very concerned that my dad was still planning to have mum home with support from visiting carers, when their observations on the ward led them to believe she now needed 24 hour residential care. And could I have a chat with him? See if I could get him to see it their way?
In the meantime my son’s anxiety continued, gradually worsening as the beginning of the new school year approached.
I can’t remember the exact point in the Autumn I returned to my GP and said I had tried my self-care measures as best I could under the circumstances, but I was still feeling low and increasingly anxious. The anxiety had come to a head when I had to take a sick note into my managers at the nursery. As soon as I approached the gate I could feel my heart racing, chest tightening and tummy churning, and by the time I reached the front door I was having a full-on panic attack, hyperventilating, shaking and sobbing uncontrollably. It was my lovely manager (not the one I had studied with) who gently suggested perhaps now was the time to accept medication. I knew she was right.
I never went back to work at the nursery. I did manage to complete the first semester of my BA Top-up course, but the events of that Autumn term comprehensively sealed my fate.
My dad was utterly devastated that the ward sister was recommending residential care for mum, but when he asked what my opinion was, and I had to confess that I thought the sister was right, he just trusted me. He concluded, “Well you had better have the final decision on a care home, as you know about that sort of thing.” Thanks.
Actually it was the first care home we looked at that social services suggested may have a vacancy for mum that we were totally sold on. A friend who works in community nursing couldn’t recommend the place highly enough, and several other friends had positive experiences to share too, so we were decided. Except in the meantime mum had started to deteriorate due to the staff finding it increasingly difficult to get her to take her tablets, even covertly, as she wasn’t eating. May have had something to do with her mislaid dentures, but I am saying nothing. I have experienced working in dementia care and property does get misplaced. We also *nearly lost her engagement ring, too. I found that though, eventually, unlike her teeth. They never did surface.
It took a huge amount of time and energy to get my son back to school in the September, often I would have to physically walk him into the school office and wait for a trusted teacher or member of the pastoral team to receive him from me and take him to registration. I always did everything in my power to get him into school, and had a good open line of communication with his head of year. I worked with school and they worked with me to help my son cope with his anxieties. I think by the October half term he was a little less unsettled than previously.
The hospital persisted with mum, but she was very unwell. The place at the lovely care home couldn’t be held for her any longer, and it was suggested that due to her deterioration we would now have to find a nursing home, rather than just residential care. It was my intention to work on this after half term when the boy was back at school.
We spent the first weekend of the school holiday at Center Parcs in Nottingham with many friends old and new from WAY – Widowed and Young. It was the first time we’d participated in their annual pilgrimage to Sherwood Forest, and I was really excited. Sadly my son didn’t share my enthusiasm, at first at least, and not long after arriving I was being consoled by friends while he was given a bit of a talking to! Thankfully it did the trick, and a little longer into the weekend he was begging me to book for the following year!
While we were there, a violent storm was forecast for the Sunday night into Monday. We were due to be driving back to Hampshire on the Monday morning, and I panicked a bit. In fact I was so reluctant to attempt the journey home, that I went online and booked a budget hotel nearby for the Monday night. I called my dad early Monday morning to let him know we’d decided to stay another day, and was surprised when he said, “I was just about to ring you!” Immediately curious I asked why. He went on to tell me that mum had had a fall in the early hours, had broken her hip, been transferred to the general hospital, and was booked for a hip replacement op in a couple of hours. I was stunned. Again my mouth went into autopilot, and the words, “I’ll be home as soon as I can” tumbled out.
It wasn’t a pleasant journey. I was worried sick that mum, being as frail as she was, may not even survive the surgery. And although the worst of the storm appeared to have passed, it was still very wet and windy, the roads were littered with debris, and some were closed completely – including the main A34, the final leg of our trip home. The first alternative the sat nav gave us was also blocked, and we ended up on a not-so-magical mystery tour of the country lanes of Oxfordshire and Berkshire. With a near empty fuel tank!
Eventually we made it safely back to Winchester and caught the tail-end of visiting hours at the hospital. Although obviously sleepy, mum seemed fairly perky for someone who had just had a general anaesthetic. She also recognised us and was pleased to see us (both of which were often hit and miss). I left feeling cautiously encouraged.
My caution, however turned out to be justified. Mum refused her tablets, even pain relief, refused food and drink and definitely refused to attempt her physio. By Wednesday she was attached to a drip when we arrived, and by Thursday morning we got the ‘come to her bedside’ call. I took my son in to see her for the last time. She had rallied a little since the nurse had made the call, and vaguely woke briefly when he spoke to her. There was a flicker of light in her eyes as she registered her grandson. I arranged for our church minister to come and collect my son shortly after that, as dad and I settled ourselves for mum’s final hours.
I had telephoned my brother as soon as we had ‘the call’ and he’d said he would get to the hospital within the hour. As the day progressed, mum was weak, but stable, but still there was no sign of my brother. At about 6pm, having sat by the bedside all day with only the odd warm drink and a couple of biscuits, dad and I spoke to the nurse. It was decided we would go and get a meal, and pop home and pack a bag so we could continue the vigil overnight. Apparently soon after we left my brother appeared, but according to the nurses ‘didn’t stay long’.
We spent most of the night popping mum’s oxygen mask back on, as she repeatedly pulled it off again. When left off, her breathing became so laboured and distressed. A number of times during the night she was peaceful, and I watched as her breathing became more and more shallow, wondering if that was the last time I would see her chest rise. I admit I silently prayed to God to release her at those times. Yet each time, I thought, “This is it” she would suddenly start, as if waking from a nightmare, rip off her oxygen, and so the process would begin all over again.
In the morning the doctor came in to review her. When he saw us struggling to keep her oxygen mask on mum, he told us to leave it off. I protested, but did as he said, and within moments she was noisily gasping for breath. Doctor said he would give her something for her distress. I knew exactly what that meant.
It was at this point my dad decided he needed to go home. I asked the nurse if this was advisable, but she promised to call us if things changed, so I drove dad home. No sooner had I got back to mine, than we got the call to go back. Except dad wasn’t ready and wasn’t going to be rushed. By the time we got back to the hospital mum had gone. It was 1st November 2013. Two weeks before her 80th birthday.
My dad leaned on me heavily to arrange her funeral (“Well, you’ve done it before”) and deal with all the other administration. I would battle the boy into school of a morning, go to dad’s, stay with him during the day sorting paperwork etc until school ended then I would rush back to collect my son, and spend the rest of the day making sure he was feeling as safe and secure as possible. He was really struggling to sleep at night though, which was tiring us both out.
Somehow everything came together in time for the funeral, and I survived in a bubble of disassociation and busyness. I continued the rounds of school runs, admin, late nights settling the boy, oh and going to uni on a Tuesday.
A couple of weeks after the funeral, I had an essay deadline and presentation to give on the Tuesday afternoon. Just as I was getting ready to leave home, I got a call from my son at school on a friend’s mobile. He was really distressed and was desperate for me to go and collect him. I inwardly panicked, yet tried to reassure him as best I could. My mind was racing. Even if I collected him I still needed to get to uni, I couldn’t fail two assignments after all the work I had put in, even in the worst of circumstances. Children were not permitted on the uni campus. I told him to go and see the school nurse, who was very good with him, and to stay with her if necessary, and that I would see him at home after school, the minute I had finished giving my presentation. I am still unsure as to whether I made the right decision, but at that point in time, failing the assignments was unthinkable.
I handed in my essay and tried hard to keep my mind on the job in hand, which was introducing a new way of working, as if in a staff meeting to a group of early years colleagues. Giving presentations was always my least favorite form of assessment, as I struggled with my nerves. But I did my best, gave it my all, and got the heck out of there as quick as humanly possible to get home to my boy.
I was pretty shocked to see the state of him. He was utterly distraught. By all accounts it seemed he had suffered some sort of breakdown in school. I got him the next possible appointment with our GP and just sat soothing and reassuring him for the rest of the day.
I didn’t even attempt to get him back to school in the short term. Our GP concluded my boy was depressed, and had he been an adult he would be writing him a sick note, and that he would be happy to write a letter to school to that effect. He prescribed benzos to reduce his night time anxiety and help him relax and also made him a referral to CAMHS.
I was floored at how I had failed to notice how unwell my darling boy had been getting. I felt like the worst parent ever. I handed in my notice at the nursery, and determined to put his needs first from now on. I didn’t have to work out my notice as I was still signed off with depression myself.
Even without the pressures of school, and with me at home, by son’s health was still continuing to deteriorate. He became unable to sleep in his own room unless I sat in there with him until he was soundly asleep, which was often not before 3 or 4am. I was beyond exhausted myself, and in utter frustration and experiencing such horrendous sleep deprivation I started allowing him to sleep in my room, in the hope we may both get some rest.
All the while I was chasing up the CAMHS referral as well as hounding Children’s Services for support, given we were both suffering with our mental health. It felt a bit like climbing Everest given my own depression. My GP had referred me to italk, but after my first long assessment call, it was concluded I required more support than they could offer.
My son finally got an initial assessment appointment from CAMHS through. In communication with school, as the Autumn term was drawing to a close, it was decided we should forget attempting to get him back before Christmas, but start afresh in January.
Before the appointment with CAMHS, things worsened again though. My son began experiencing distressing thoughts of a violent and sexual nature about people he saw. He was absolutely horrified, as he was such a gentle soul and nowhere near as worldly-wise as his peers. It was highlighted particularly because we had arranged to exchange Christmas presents with family, and his thoughts became focused on his younger girl-cousin.
He was in such a state and I was useless explain to him what was happening. Because the thoughts were causing him to feel suicidal, I was advised to call an ambulance. We were taken to A&E. I remember we knew the nurse who received him from the paramedic. The sheer relief to see a friendly face was overwhelming. She also brought me a mug of tea and biscuits, bless her. After chatting with various A&E personnel, the duty child / adolescent psychiatrist was contacted. She wasn’t able to come to the ED but she spoke at length first with the casualty consultant, then with me. She told me that my son was suffering with OCD Intrusive Thoughts. I was amazed that his distressing symptoms actually had a name and were a recognised ailment. She even reassured me that it seemed to be the case that it affected those least likely to act on the thoughts, and it didn’t mean he would grow up to be a murderer or sex offender. He had already expressed such fears, so I was massively relieved to be able to reassure him. She prescribed Fluoxetine, stating it would help his mood as well as his obsessions.
At the subsequent CAMHS appointment we were seen by the Systemic and Family Psychotherapist. It was agreed he would start sessions with my son after Christmas. Finally, as 2013 was drawing to an end, it seemed he was being heard. Next was to get help for me!