It's the Most Wonderful Time of the Year

Dear Daniel and Olivia,

It was in the early afternoon of Thursday 29th November 2018 that your grandad, my dad, passed away. He had been at the care home for only a week and a half. You won't remember going there to see him, but you visited him in room 14 a couple of days before he went.

A couple of weeks later, and late in the evening of Monday 17th December 2018, the day of his funeral, your nan, my mum, passed away too.


It was a grey day, that Thursday. I had spent the those final days with him in his room, watching him slowly shut down, no longer eating or drinking or responding. I had read up on what happens to people and he was showing all the signs. I don't know if he could hear me at the end but I'm sure he knew I had been there. I knew the time was coming when it did: I held his hand and spoke to him as he took his last breath.

For the first few days after he died, I kept recalling those last moments in my mind. How he looked, how he sounded and felt to the touch. That will never leave me. Some time after it happened, I had to leave dad for a while, and when I returned to him the sun had broken through and shone into the room and on to him, as if God were receiving dad himself. Indeed, if I were a religious person, I would have said it was heavenly.


Mum was very sick herself soon after that, and was admitted to hospital. I remember getting the call again, which would be the last of its kind from the nursing home, about her admission and when I got to A&E, she was a shivering, near-death wreck of a human being. I had never seen her so poorly. The doctors told us that it would be unlikely that she'd return to the nursing home, given how frail she was and the problem she had: lung aspiration. We began to prepare for the worst, my sister and I.

Not long after going to a ward, she had been moved to one of the side rooms, a sign we didn't take well at all. The team had almost written her off but miraculously, after a few days of fluids and antibiotics, she perked up and was well enough to be discharged. She was one tough old girl, my mum.

That spelled the beginning of the end though. In the last days leading up to her death, she stopped eating or taking any fluid, and was unresponsive. All the same signs as my dad, but mum had other underlying problems. Her body simply couldn't recover this time around. My sister, who had been pivotal in keeping mum alive and comfortable, was there with her at the end. By the time I arrived at the nursing home, after having had a call from her around 9.30pm that Monday evening, mum had already gone.

She had no notion of course of what was going on. No idea that dad passed away. I did tell mum though, the day after dad died. We wanted her to attend the service, but when the time came she was too poorly to be able to. We wonder now whether she did actual process and understand what we were saying, and what was going on. Some little moment of clarity and capacity, even so far into her dementia, that triggered the end for her, and she gave up, and her body started shutting down. The certificate might say aspiration pneumonia but the contributing factor, besides dementia, could have been a broken heart.

At least neither of them were alone when it happened. This was perhaps our biggest fear, and one that many people I'm sure experience with relatives or friends in a care or nursing home nearing the end: the real and true worry that a loved one might pass away in the middle of the night, alone, and with the potential for not being checked on or found for what could be several hours. This meant that saying Goodbye to them each time I had to leave was draining.

It's funny though, that this is just life, and life goes on. Even in those darkest moments, there was always the TV or radio playing somewhere, and Mariah Carey or Andy Williams or Wham! or Slade and everyone else playing their merry tunes. It's the most wonderful time of the year, afterall.


What I wonder now is whether I've grieved, or grieved enough, or not at all properly. I dived headlong into the formalities: you have to collect a certificate from the GP, register the death, make plans with the funeral directors, contact firms and authorities... I wanted to keep busy, but perhaps I haven't allowed myself time to process it all and let it sink in. It did catch up with me one evening though, when I was looking through photos on my phone - mostly of the kids of course, but dotted here and there with recent photos of mum and dad...

They are at least together now, somewhere, somehow, at peace, no more pain or suffering.

Dan, you will remember them I'm sure, and how we use to go to grandad's house, where you could run and jump and have fun and do what all kids do without us worrying about disturbing people. We won't be seeing grandad anymore though, or calling him on the phone every evening like we did before. You did enjoy saying Hello and telling him what you'd been up to. We won't be going to nana's house either, the place where nan stayed with other people who used to love seeing you, and where you brought joy and a smile to their faces when you went.

Oli, you are far too young to know any of this, but everyone says you have your grandmother's eyes: the legacy she has left lives on in you, my dear little sweetheart. I have lots of photos of you with your grandparents, and even though nan perhaps couldn't quite express or even understand it in the way your grandad did, they loved you and your brother dearly and perhaps they felt that their lives were fulfilled by having had the chance to be with you both before the end.

Room 14

The resident in the room opposite to dad's has the TV on a lot of the time and at a volume high enough that the whole home could probably here it. His channel of choice is ITV as it's Jeremy Kyle in the morning and then Tipping Point and The Chase in the afternoon, with everything inbetween. He also uses the medium of grunting to get the attention of the carers, and it can be just as loud as the TV.

I don't mind it myself as I'm use to what goes on in mum's nursing home, but it's a good job my dad is half deaf, because it would probably drive him balmy.

It's not a huge room but it's clean. It's a lot different here compared to mum's nursing home, but I guess we are so much familiar with that place and are comfortable with the fact she is looked after and doing well under the circumstances. She doesn't know what's going on with dad of course, even if I tell her.

Unlike the other rooms, dad's doesn't doesn't have his name on the door. We don't really need to put one there. I was in the midst of doing an 'About Me' poster to put on the wall, so that the staff knew a little of dad's history, his daily routine, and what he likes to eat or watch, but there is little point now as he's not eating and no longer watching the TV we brought in.

I took photos of the family from home and placed them up on the shelves here, but he can't see them either. There are a couple of my mum, smiling as she always did, and photos of his grandkids. In the cupboard hangs a few of his clothes: a couple pairs of trousers and a few of his shirts which he won't be wearing anymore. Everything we brought along is too big on him anyway, as he's lost so much weight.

We brought in some nibbles for him too, like packs of Walkers Baked crisps, cheese and onion, his favourite, and a chocolate orange, some fruit to have nearby, but he never got round to having any. I even brought him a Budweiser in the first days, in the hope he might have appetite to enjoy a beer for the last time, but he couldn't manage it. (When I was a kid, I would run to the fridge to get him a can of Bud whenever he came home from work - that's a legacy he's left me, as Budweiser is my lager of choice).

As I type this, he is laying in bed, where he hasn't moved from in the last few days. Since his move to the nursing home, his body has slowly but surely been shutting itself down, and I've been witnessing the things that the palliative care nurse had prepared me for. He doesn't eat anymore and hardly manages a few sips of water or tea, and can't even use a straw to drink his vitamin shake. The pain appears to be under control though. He can hardly speak but when I ask him whether there is any pain he manages to shake his head and whisper a No.

At times like these, you start to read about it all. What happens for the person when the time comes, what you need to do afterwards etc. It's not exactly a pleasant thing but it can be useful. What I found amazing is just how accurate a booklet published by Age UK about the process is. It explains what is happening when a person gets closer to the time:

Your loved one may spend an increasing amount of time sleeping, and appear to be unresponsive and may be difficult to rouse... Their hands, arms and feet might feel cool to the touch ... It is normal for people nearing death to have a decrease in appetite and thirst, wanting little or no food or fluid ... Regular breathing patterns change. They may develop a different breathing pace ... The person may speak or tell you they have to have spoken to friends or family who have already died; they may tell you they have seen places not visible to you. Often the person will feel quite reassured by this.

This is exactly what has been happening with dad.

On the one hand, I read all this with some relief and comfort, because I know that this is real and things are coming to an end and it'll be over for him - what he has, cannot be fixed. But on the other hand, there is no definitive timescale involved and it could happen at any time, within a day or two, or maybe he will hang on another week. The knowing and the waiting is painful.

It's interesting to learn though how the hearing remains until the end, so I've spent time telling him about his grandson being the Star in the upcoming nativity play they are doing, and how his granddaughter is teething and giving her mum grief with feeding, what we did at the weekend, and other silly things. I know this is a good thing, but it is something that is so very, very difficult to actually do.

I find myself listening to the sound of his breathing and watching the motion of his chest. At some point it's going to stop, and to be honest I would be glad if it were to happen while he was sleeping soundly, comfortable, no pain, no fear. It's all we can ask for now.

Autumn Turns to Winter

There is an old family photo that I often think about, of my father and I at what I'm pretty sure must be Windsor Castle. I'm standing behind him on a wall with my arms around his shoulders. I must be only 5 or 6 years of age. We are both smiling at the camera - mum will have taken the shot. I don't actually remember that particular day out but the photo means something important to me.

It is 3 years since my father had a heart-attack, the second in his lifetime, triggering everything that has happened since with mum going into care, her illness taking away everything that made her who she was, and the stress and anxiety that came with it all. I still remember the morning I received that phone call from my wife telling me something was wrong, how panicked she sounded, and how I dashed out the office and made my way to my parent's house as calmly as I could. In the car, I kept saying aloud to myself I'm coming, I'm nearly there, hang in there.

The look on my mum's face when I got there will stay with me forever: one of confusion and fear, not exactly knowing what was going on and what was happening, while dad was being tended to by the paramedics. By that time, he was really struggling with mum's dementia. It was afterall only a few days before she was due a short stay in the residential home so he could get some respite. Of course, she spent 3 months there before being transferred to the nursing home where she is now.

After he left in the ambulance, I remember packing things up for mum, some clothes and toiletries, and checked the place over before taking her to ours until we figured out what happened next. It was the last time I'd see mum sat there in her spot on the sofa, closest to the window where she would look outside and see the world go by. I don't expect I'll ever overcome the pain I still have over leaving her in the residential home after that. It is truly one of the most dreadful things I've experienced.

I face doing that all over again with my dad. The difference is that he still has his marbles, while mum did not. I don't know if that's a good thing or bad.

We are in the midst of arranging a move to a nursing home, where he will see out the rest of his days. I don't really know what I'm suppose to think about that, or whether we should be doing something different, but he accepts it as something that needs to be done, and indeed it's in his best interests.

The palliative care team have really been supportive. I had no idea such services existed until this all came about: they liaise with the local council, district nurses, my dad's GP and local pharmacy, organise visits, and generally help get things done. Truly remarkable.

It's already many months since his diagnosis, and the timescales the medical team advised us of. The radiotherapy he received did help in the short term, but over the last few weeks, things have got worse. He is getting less mobile by the day; indeed I wonder whether he even manages to get out into the garden anymore. He is eating a whole lot less, and finding it increasingly difficult to do normal day to days things like washing and preparing food for himself. His clothes are baggy on his frame. He is haggard and drawn - a very tired and aged look has come over him in such a short space of time. When I speak to him, his voice is strained and he struggles for breath. He's done well to cope on his own like he has, sticking fiercely to his independence, but the time has come for him to get the care he needs in his final days.

Meanwhile, my wife and I still have a young family to raise. Our son is 3.5 years, full of energy and smiles. Our daughter, born early at 37 weeks, is now 5 months old and a healthy baby - no longer the tiny, skinny thing she was back in May. It is hard, but we manage. Having young children is difficult enough, so dealing with everything associated with dementia, cancer, social services, palliative care, power of attorney, end of life arrangements etc does not make for a merry time. But this is life: shit happens. People often tell me that they wonder how we do it, but it's not something we've ever really thought about: we don't know any different, and all you can do is get on with it.

I tell this to mum when I see her. Not that she understands. I tell her that her grandson has started at pre-school, and loves being there. How he can be cheeky and a pain in the backside a lot of the time, but bright and healthy and always singing and playing. How her grandaughter has starting teething and has been agitated, chewing on her hand or tongue and drooling a lot, not sleeping for more than an hour at a time and crying a lot, which is exhausting. But she is beautiful and she has her grandmother's eyes. I tell her about how we recently came back from holiday during our son's half-term break, where we got to spend time with my wife's friends and family back home, and where our daughter was baptised (and screamed the whole way through the service and ceremony) and that the weather was good and travelling with two young kids wasn't as bad as we had feared.

I tell her that she gave us such a scare, too. Because we had just arrived on that holiday, and were on our way out of the airport when a call came in from the nursing home, saying she was in hospital. Not exactly the best start to a holiday. After a spell in hospital and antibiotics for an infection, mum returned to the nursing home and she is doing pretty good at the moment, under the circumstances.

She remains a tough old girl, even after everything she's been through. She is at least safe, comfortable and looked after. This is what my father needs now, but I'm bracing myself for that moment he leaves his home for the last time, just like mum did three years ago.

Olivia

I write this at a point on a Friday evening after another hot day, when the painkillers I've taken have kicked in and I feel a lot settled than I was an hour ago. Our beautiful five-week old baby daughter is in her cot, and she too has finally settled after a marathon (several hours-long) episode of crying and squirming: she had been fed, had burped, had explosive poops, had a bath, had more milk etc but eventually just zonked out. Our 3 year old son, who appears to have grown massively since the baby came along, and who currently cannot walk owing to having sprained his ankle at nursery yesterday (cutting short a much needed and overdue late Spring-clean of the home followed by a trip to hospital for an x-ray), is also settling. I have a pile of paperwork building up to look through: a copy of my mum's latest care needs assessment, paperwork relating to my dad's visits from social services and his care needs, paperwork from our son's nursery to look through in advance of his pre-school placement in September, a blood test appointment that I haven't had to the time to go to yet, an application form for a Blue Badge for my dad... I don't know what to look at first.

I took a tub of Magnum Classic ice-cream out the freezer for my wife and I to share when she comes back to the living room, but suspect she may have fallen asleep herself. She is exhausted.


I'm not sure where to start with trying to process everything that has been happening since I wrote my last blog entry, which incredibly is 6 weeks ago now. So much has happened. Honestly, we have no idea where June has gone and the heat and lack of sleep, among other things, has definitely had its affect.

Our daughter was born on Friday 25th May 2018 at 01.47am in the morning, at the same hospital that our son was born. She weighed 2.63kg (5.8lbs or thereabouts) and was delivered at 37 weeks. The baby wasn't gaining weight as was expected, and given our history and the anxieties that come with it, it was in baby's and mother's best interest to get her out sooner rather than later. It was a decision that was made 4 days before she arrived, when my wife went to triage.

I wasn't sure how to take this decision: should we be worried about induction, should we be glad that we have a date when know things are going to happen, or are we going to have to deal with another episode of pain and grief if things don't go well? Certainly my wife wasn't happy with it - was there something wrong with the measurements, are we doing the right thing, what if it was a mistake? It was a very anxious time leading up to the Thurday she went in. My wife was carrying another child of ours, with the weight of stress and worry over what we have been through in the past.

Earlier on that same day she went to triage, I had called the NHS line to get some advice about my dad, who was very, very poorly (he has aged terribly in the last few months). They got us in to see a local doctor, who in turn advised to take dad straight to A&E. So, off we went to hospital, with the wife going in to triage at the maternity building as planned (and then being told about the induction) while my dad went to A&E, which was very much unplanned. He was admitted that day and spent the next two weeks recovering from an infection and kidney damage, while the teams from two hospitals (as his main hospital was elsewhere) discussed what happens next with his cancer treatment.

(We really could have done without another something-else to worry about regarding circumstances at home during those few days, but I won't go into that here. What we did though was worthwhile, and left us feeling vindicated, but it's an entirely different story and an unwelcome additional stress...)

My father had a second bronchoscopy, and a bone biopsy after being discharged from hospital. He has since received radiotherapy for lesions on his lung and hip (which had been causing problems with his mobility), which has left him exhausted.

There are various service providers to liaise with now: the council's 'floating services' team, visits from their sensory people, support from Hestia, and most recently the involvement of a palliative care nurse who has been assigned to dad, who will organise visits to check on his health and coordinate other care plans going forward.

There is that phrase that has been at the forefront of my mind recently, even with being a parent to a newborn baby: palliative care, and for my father.

That final irony again: that it's my dad that is now worse off that my mum, who, thank goodness, remains settled but oblivious to what's been happening to her husband and the birth of her grandchild. We have visited the nursing home ("Nana's House", as our son calls it of course) with the baby, but again it's a bittersweet moment. Mum doesn't understand or realise what I'm trying to tell her, and she isn't even able to focus on the beautiful small being in front of her that is her granddaughter.

Ten years ago I would never have imagined I'd be married with a family. But it happened. It hasn't actually sank in that I'm a father to two beautiful children. It really hasn't. The routine has been easier this time around: changing nappies, sterilising bottles, even the crazy sleep routine is not as bad. Already having a 3 year old has been the challenge: how to juggle the demands of both. I didn't know how we'd cope with having two kids, especially under the circumstances at home (truly, we need to move home as soon as we possibly can), but we appear to be managing so far. We both agree we should have done this sooner: we're not spring chickens, no matter what people might tell us, and with everything happening all at once - mum's mental health, dad's cancer, a newborn baby - it has been a very challening period for all of us.

But things could be worse, and I count my blessings. Looks like I'll be having that Magnum tub to myself. I'm sure she won't mind.

Nana's House, and The C Word

It has been a long time since I read the first post I made on this blog, back at the beginning of 2015, before our son was born. I mentioned the irony in my father looking after my mother in their later years, rather than the other way around, as might have been expected from their union. I haven't read much of anything else I've written since, as I feel a bit embarrassed about some of it to be honest, and I'm not sure why. Maybe I'm worried what my kids will think when they are old enough to read and understand it all.

The final sad irony now is that it is my father that faces an unknown and perhaps less predicatable future than my mum, and one exacerbated by his living alone. Mum at least is in a managed environment with people nearby keeping an eye on her round the clock, feeding, dressing and cleaning her. Dad has not been feeling well or eating properly recently, and struggling with day to day life. He looks and sounds so much more tired than he did only a few months ago, and I'm sure he's  worried about losing that independence. Besides being partially deaf and blind (the cataract sugery some months ago gave him a new lease of life, but his sight has gone downhill again) and the ongoing heart problems, he now can't get out and about as much due to a bad hip.

The icing on the cake however, is that the doctors found something on his lung. We are waiting to be told officially, but in all likehihood it is cancer.

Cancer, cancer, cancer. They say that 1-in-2 people will get or be affected by cancer, which is a terrifying statistic. And here it finally comes knocking at our family's door.

When I read the copy of the letter sent from the Consultant Respiratory Physician to my father's GP, I pick up on words and phrases like "haemoptysis", "abnormal, "left lung mass", "liver and spinal metastasis", and "a frank conversation"...

And when I look up some of those terms to understand what he's facing, it really doesn't sound very good, and I've no idea what I'm suppose to do or how to react. I can't imagine what he was processing himself when speaking with them on the day.

He has been for a bronchoscopy and soon after that, an MRI. He has been referred to another diagnostic scan unit, and we now have an appointment for a PET-CT scan very soon.

I don't know what to be more anxious about: raising a toddler in a not-completely-comfortable home environment while also expecting another baby (we are a month away from the due date, and I haven't even touched on the emotions we're experiencing over that), or the dementia and having to deal with the council (the recent care needs reviews we've had resulted in mum being deemed not eligible for full continuing care funding, which triggers its own set of problems), or dad's rapidly declining health.

You couldn't make it up.

We recently took dad with us to see mum at the nursing home - "Nana's House", as our son affectionately calls it. I took lots of photos of my parents together, as though I needed to get those final lasting shots of the two of them while I had the chance. I don't know if that's being pessimistic or morbid or giving up on things, but it really hit home just how aged and tired they both are. But this is life, and they are the best part of 80 years old after all. Mum had that usual confused frown on her face, but was comfortable and settled and was as alert as we could hope. Dad was understandably emotional, catching his breath every few minutes from coughing, and straining to hear whether she was saying anything coherent (which she wasn't).

Although mum may not have been fully aware of who he was or the problems he's facing, they looked quite content as they held hands. I was sure that it would be difficult for them to enjoy many more moments like that together, and dad will have realised this, even if mum would not.

Happy Anniversary, mum and dad x

I have this thing about balance or a YingYang but what can perhaps be best described as overthinking the idea of "ups and downs". It's about experiencing good periods and then what might be regarded as bad or challenging times and circumstances. It's a silly belief of mine that if a lot of difficult stuff happens, like what's been happening over the last two months, then something good should come along eventually to balance it out. And I believe it works the other way: that if things appear to be going smoothly or running along nicely, I have this idea that it's too good to be true and something crap is bound to happen to keep us in check. I don't believe it applies to other people, just me and 'us' although my mum hasn't done anything to deserve what she's going through.

Everyone has their trials and tribulations. I do believe our family are far better off in general than a lot of people. We are, in the greater scheme of things, very, very lucky indeed. The stresses and anxieties, when they happen, are however real and do leave their mark. We're only human and you can't take everything in your stride that easily. I guess a lot depends on how people react and deal with those challenges that make the difference.

I have never been very good at handling stressful situations, or being under pressure. I've always been an over-sensitive person and not the most outgoing of people either. I find it hard to react calmly or logically when the shiz hits the fan and I don't often talk about how I feel, so a lot of it is bottled up. I guess it's why I like to write, as I've done that a lot over the years in some form or other. Looking back, my wife and I haven't had much luck with some things, but at the same time we've certainly been very lucky with other things. There is that balance again. Some may consider our dramas trivial but for sure we've had our fair share of difficulties. Time doesn't necessarily heal all wounds either but it does make things easier to deal with and a whole lot stronger in a way too.

I had reservations about writing this particular post but I'm going to put things into perspective, seeing as I might not have the chance to write in the coming months.

It was my father's heart attack and subsequent bypass op and long stay in hospital 2.5 years ago now that resulted in mum being wrenched out of her normal homelife, and triggered the downward spiral that she has been suffering with her dementia. As of today, she's not good. She's not the same anymore. We're into the next phase of her illness.

I remember it all very well, simply because of how difficult it all was. We were raising a 1.5 year old baby, which is difficult enough; I was fumbling through dealing with social services and the residential and care homes for mum; my in-laws had also stayed with us for a few weeks during the whole thing, something planned in advance of my dad's heart attack, so we had to juggle things with them; my wife had jury service while everything was going on; and besides worrying about mum, I was also worried about my father too of course: his op, his poor mental state in hospital (a very depressing time - everytime we left after our visits he thought he might not see us again) and then his recovery and adjusting to living alone. And if that wasn't enough, we were in the midst of trying to sell our home and find a new property, something stressful enough on its own, but that had to be shelved and I guess was a pre-cursor for what's going on now.

I'm a sucker for punishment, someone said to me quite sympathetically at the time. Put all these things that happened at the same time together and for sure it didn't do our health a favour. The only twisted bit of good that came out of that period was that I lost a fair bit of weight, but it's hardly the right way to go about it.

Back to the present day, and the good thing is that we are expecting again. It's fantastic news for us and could be that hugely positive next chapter in our life, but we just can't help feeling how difficult it will be given everything that's happening.

Little too much information perhaps, but the brutal, honest truth is my wife has delivered three of our children, and we have only the one with us. This is why we feel so offended by anyone complaining about what our son might be doing, which I'll give vague hints about but won't go into the detail. She is understandably very anxious about how things will pan out over the next few months with the new bundle of joy in our lives, as am I - not to mention how difficult things might be at home when the time comes, given this other drama that has been stewing in the background since last year. Again, part of not having made the best home-move decision I mentioned last time.

I can't imagine how difficult it is for a mother to be a mother, and the worries and fears involved in having a baby. I feel so deeply sad for what my wife has had to go through in the past, and even more recently as last year, 2017 (and right at the time we could have done without more drama - it's so frustrating to think we had so much upset to go through without worrying about another trivial matter). Looking back over my earlier posts here on this blog I see that I have alluded to some tradegy in what is more distant years now and yes, it was truly a traumatic time for us, but we managed to get through it and it's in the past. The memory of it is still vivid and it's an experience we wouldn't ever want to go through again. It's always lurking in the back of our minds and more so for my wife.

The last 2 months have been pretty crap for our family. But hey, I don't want to make this a sob story: it's not all doom and gloom and we do maintain a positive outlook on things but geez, life really gives you some lemons. Made lemonade they say, but it's not always as easy.

My mum's condition had progressed for the worse: it started with another fall, going back to one night in February. My sister informed me that mum was in hospital again but I didn't have any word from the nursing home about what was happening. I was up early on a Wednesday morning and spoke to the night shift staff who told me that mum had gone into A&E again. My routine kicked in and I got ready with my 'hospital kit' again (charged phone, food, drink, etc).

I arrived at the hospital at 06.30 in the morning to find her completely zonked out. They had to sedate her in order to carry out a scan and take observations; something they can't do with her being resistant (and still strong) and not understanding instructions and why she needs to stay still. The problem that ensued over the rest of what was a very long day was that she didn't get over the sedation. She was neither asleep nor fully awake the whole time. Either her body couldn't get the sedation out of her system or else the fall had affected her in other ways, so it was a very anxios time waiting hour after hour for her to wake up properly.

Eventually she was moved from A&E to a ward and spent the night in hospital. Her first stay since she moved into care. I already knew something wasn't right when I left her in the hands of the ward staff.

She was discharged the next day, but back at the nursing home she was the same. Just not fully awake and simply not the same as before. At the time it was just a matter of allowing a few days for her to recover and get back to normal - this was what we were all hoping for. But this didn't happen. She was less mobile than before and not eating or drinking in the same way.

This is how she is now. She can no longer walk on her own, as well as not being able to eat or drink, wash, change, toilet or anything else.

A week later I come down with a nasty cough and cold. Sod's law, our son was poorly with a cough too, and coupled with the freezing spell of weather we had (all that snow and ice), made for another miserable few days at home, off sick from work and nursery. My wife, as expected, came down with a cough a week later - a mix of being at home with us but also from having a flu jab some days earlier.

A week later, and more drama. Mum is back in hospital, again.

The nursing home staff found her shivering and more confused that normal one morning, so got her to A&E again. When I saw her that particular morning, with my dad in tow (poor fella, I should have left him at home that day), she was indeed just a bag of bones shivering under a blanket, hooked up to a drip and not looking good at all.

She spent an entire week in hospital - a UTI, chest infection and AKI (acute kidney injury) all contributing to a pretty bad spell for her. Every day we waited for the medical team to give her the all clear to go home.

The last thing we wanted during this difficult and anxious time was to arrive home in the evening after visting her and worry about disturbing someone we know locally... I won't go into the detail but I have to say it's a ridiculous situation and not something we deserve to be worrying ourselves over under the circumstances. Sadly it has been another contributing factor (albeit small but frustrating nonetheless) to the amount of stress we've been under, which is especially not good with my wife expecting again.

With all this happeneing, we have social services and funding to be worrying about. Back in Novermber mum had her yearly assesment, and the outcome was that she was considered not highly at risk enough to receive full care funding, and was therefore considered a self-funder. It sounds crazy but this is how the system works. We have requested another assessment in light of what she's been through and the deterioration in her condition, and now just await a date for that to happen. Everything takes time with social services and the NHS but I remain hopeful for some additional help, such as one-to-one care, which ironically was recommended only days before this fall which changed her for the worse.


I started this blog with the intention of diarising my experience as a new dad. Our boy will be 3 years old in a few weeks time. He is a beautiful and clever lad but very much acting like a todler. It's such a shame we do not allow him to do what normal todlers should be doing some of the time, but maybe we worry too much about things we shouldn't be worrying about. I don't know how we're going to do it when the new baby arrives, but we'll do it someway somehow. I hope mum will stay with us long enough for her to see her grandaughter, and I hope my wife and I manage to find a way to move to a new family home so that we can allow our children to flourish and enjoy life without worrying about other people.

Tomorrow is my parent's 40th wedding anniversary. I can't imagine how upsetting it will be for my dad to visit her.

Happy Anniversary, mum and dad x

The Names on the Doors

Out of all the residents that I can remember being there went mum first moved into the nursing home after the horror of the residential home, only one or two of those original people are left.

The lady I remember very clearly going downhill over a period of time, who ended up jusy laying open-mouthed in bed, staring at the doorway with her dark eyes, had passed away. Another old lady, very thin but with a youthful look on her wrinkled face, who used to shuffle up and down the corridor like mum does now, but eventually ended up bedridden herself, had passed away. Most recently, the chap I had mentioned a couple of times on this blog, who would be quite active and walking about and who often said the canniest of things on occasion which made me laugh, had passed away too after having not recovered from an operation.

Their names and photos are removed from their doors and replaced with someone else: them and everyone else that was there before, and only mum, one other lady and another chap remain from those early days just about 2 years ago now when she first 'moved in'. He himself remains mostly in his room now too, tended to by staff and family. I haven't seen him for months, and at some point no doubt I’ll stop seeing his family members too. I've never seen anyone visiting the other lady.

I often wonder how the staff cope with this eventuality. It must be incredibly hard, and surely you can't truly get used to it. The residents may all have varying degrees of dementia and their own challenging behaviour, but they each have their own personality and charm and it’s not difficult for the staff and visitors to get attached.

For the past 6 months or so I too have developed something of a friendship with one very old dear lady, who has the most interesting of pasts. She gives me glimpses into her life many years ago in the Malaya, and her family during the war. She often talks of the troops and people in the house and how she sometimes feels frightened about things. She thinks one of the carers is her older sister (“that tall one there” she tells me, “but she doesn’t know she’s my sister”).

What is remarkable about this lady is that she has an incredible talent for speaking Thai - no doubt part of her history in the Malaya. I was flabbergasted when I first heard her speaking to my mum in Thai (and put me to shame - I had never learnt the language, one of my lifelong regrets). She also manages to recognises me, at least whenever she can actually see, as her eyes aren't very good, and remembers my name, and that I’m there to see my mum. No other resident would remember or be able to communicate like that, not at least among those fellow residents.

I do also know when her birthday is, and she herself knows it too unless her mind is muddled and she gave me a random date, but I will write her a card, so long as she is still around by then.

The last few months have been steady for mum, who continues to manage to survive, day in day out walking to and fro along the corridors, in and out of the rooms, and despite yet another fall and a visit to A&E again she keeps her strength and is able to remain mobile, but is a skeleton of her former self in every aspect. Indeed, at a recent ‘weigh in’ that took place while I was there, she was a mere 42.5 kg.

Christmas was a bittersweet moment. She was sat inbeteen my father and I, not really knowing who either of us were and... well, at least we had our chance to be together.

We are dealing with social services and the local council finance team again for mum’s care funding. She had a review in November and it was deemed that she was not eligible for full NHS continuing care funding. Sounds ridiculous, given her condition but as things have improved with her care – thanks mostly to the stellar efforts of my sister and the staff – she isn’t as aggressive as she was, so the ‘points’ came in just on the cusp and she’ll have to make a contribution to the care costs, until such time as their (my parents') savings drop below a certain threshold. Regardless, the care she receives won't change, and this is a good thing.

It’s been a difficult start to 2018, despite the calm break we had over Christmas and New Year. The usual winter illnesses and stresses came and went; some difficult moments with our son, who is developing in his own typical toddler way. He'll be three years old in April. We are very lucky: he is a bright, beautiful boy, loving and healthy. I've no idea how we managed to do it.

We perhaps didn’t make the best choices long the way where moving home was concerned in the last years, and currently in a situation where we cannot allow him to flourish as we’d like. Part of me feels sad that we might not have done the best for him so far in that respect. Moving home again is not an option right now though, as much as I’d like us to think about it. Finance is a big thing of course, but we have something more important to look forward to later in the year (all being well) which will impact our home life even more so, and in turn could make circumstances even more difficult. But hey, this is the way things are.

For the past month I’ve felt the weight of this growing on me more and more. Perhaps it’s just the time of year – I was so glad to see the back of January, and turning 39 was a non-event – but something is stewing (in more ways than one), and although my wife and I both feel anxious about the coming months, for ourselves and our son and our family unit and circumstnaces, we agree that "what will be will be", and we'll face it together.