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.
Friday, 21 December 2018
Tuesday, 27 November 2018
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.
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.
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.
Wednesday, 7 November 2018
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.
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.
Friday, 29 June 2018
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.
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.
Tuesday, 15 May 2018
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.
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.
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