Mum can no longer swallow even liquid meds or water. We can only moisten her mouth and lips with a damp toothbrush/lip balm.
She was able to hold a coherent conversation last night. Yesterday I'd finally rushed out to buy some xmas presents on her behalf for my brother, the pets, some stocking filler comfort items for her.
She slept pretty peacefully most of last night. I was sobbing and grieving in my room after the nights respite care we were meant to have fell through, finally fell asleep sometime after 1:30am myself. 5 am mum woke, shaking badly, babbling incoherently, unable to even sip water through a straw. I gave 1ml of the liquid morphine, which eventually reduced the shaking slightly, but got my brother to call the district nurse team while I tried to comfort her and think what to do.
Two district nurses came this morning, agreed she's much worse, but the exact cause doesn't need to be found since she's palliative, and wants to be hospice at home, and pass away as peacefully and painlessly as possible at home. That they'd contact the right people for me, to make sure mum is as painfree and comfortable as possible. Also saw I was breaking down emotionally and physically- I was sick when they were here, because I'd taken my meds on an empty stomach again, plus anxiety.
St Peter's hospice nurse also came, tried to give mum 2ml of the liquid morphine since we hadn't been able to give her any of her usual pain meds, agreed mum couldn't swallow, she dribbled most of it out, so she arranged for district nurse team to come out and give mum morphine and other meds via a pump, and managed to find two st peters hospice volunteers who are kindly going to sit with mum as she sleeps, make sure she's safe and comfortable, so brother and I can hopefully get some sleep as mum does, and then spend whatever quality time she has left with her.
This is the last agonising blow I can handle. I've run myself into the ground for months now, trying to get on top of things, but any real outside help has barely begun clicking into place, NHS already overstretched, and government bodies that can authorise funding for additional specialised care/respite workers are closed over the holiday season, of course.
The one agency worker(s) they gave us have been useless, more a hassle than a real help, and mum will have passed away by the time anything re-opens.
I can't call friends to lean on o Christmas Eve just to trauma dump of them. I'm sure they'd listen, but it wouldn't help, and only drag them down. I have so many regrets.
I'm drawing on on reserves of strength and sheer blood-mindedness (I inherited the latter from dad, although he was far stronger than I am) to get through this without falling apart yet. With a little chemical assist from some diazepam - St Peter's Community nurse who came today between district nurse visits could see I was physically and mentally falling apart and exhausted, asked what support I had. I said my GP was great, that I've only been holding on so far because he put me on diazepam and upped my antidepressant, but that mum's decline has been so, so fast, of course at the worst time of year, that we've all been struggling from crisis to crisis, and the lack of proper sleep, let alone forcing down half a meal a day for the last week, and then the care for last night falling through so I lost it, snapped at my bro, broke down crying over my uncle who had shown up unannounced despite not hearing from him since I called and told him her diagnosis, and we expected on Christmas day, then wound up sobbing and agonising to myself until 1:30am, then woken at 5am because bro had sat in a chair in her room to keep a tired eye on her, but when she woke at 5am she was shaking badly, and babbling incoherently, had taken a massive downturn.
Could be a number of complications - ultimately have had two visits from district nurses today, plus the nurse from St Peters who was great, and got two St Peters care workers to give us two hours respite this afternoon, made sure mum was clean and comfortable, sat with her, and woke me as agreed when she woke. Mum was a bit more oriented and able to at least answer yes or no, weakly, and respond when I told her I loved her.
She is dying, and they fitted a pump for her meds because she cannot take them orally anymore.
I'm focusing exclusively on making her as comfortable as possible, sitting with her, comforting her anyway I can, and reassuring her how much we all love and appreciate her, and that dad will be waiting for her when she's ready to join him.
It's all I can do now.
I sincerely hope everyone has as good a christmas/holiday season as possible. treasure the time with your loved ones while you can.
Try to remember that death is not the end of existence. When I was in the Navy I had a near death experience and KNOW there is more for us than just this body of flesh. I don't know what comes next but DO know there is something. I was asked if I had done what I was supposed to do and I answered no... As soon as I answered I started breathing again and was out of the hospital 2-3 days later. If there is nothing else then what asked me the question?
So sorry AdoraBelle, I hope she is comfortable and that you can spend some time by her side. You mentioned doing her nails/pamper routine- I really like that idea.
Thinking of you x
Hey AdoraBelle, I'm so sorry to what you're going through especially at this time. I can't even imagine how difficult it is.
If it's any consolation, I am a nurse who have been with a lot of my patients during their final moments. Sometimes there's family there, sometimes there isn't and I'm the last person with them before they move on. It hurts every single time.
I can tell you, confidently, that you are doing everything absolutely right. This stage of life, the final ones, is something that everyone will have to go through eventually. And all that you can hope for is that one day, someone will treat you as well as you're treating mum. Caring for her the way that you are and showing you the unconditional love that you show her.
Remember that the pain you're feeling has a purpose - it proves that you care, so much. In times like these it may feel like you are alone but remember that although you may not feel like you can lean on your friends as much because of Christmas, that that is exactly what friends are for.
I wish you the best of luck with everything. I'm always here to hear you out.
I'm so sorry to hear this. You'll be in my prayers.
I'd urge your to reconsider talking to someone. I think your friends would want to be there for you. If not one of them, there are crisis lines to help people in times like these. You'd be surprised how much a good talk can help. It won't fix things. But it gets a little out and releases some of the pressure. It's up to you what you do. But I think it could help.
Thank you all so much - from the bottom of my heart.
Mum passed away peacefully and appeared to be painlessly at noon on Christmas Day.
Have sent prayers and thanks that she was at least able to pass peacefully at home, with my brother and I both there throughout, even in the times we weren't physically in the room with her - we were doing things to get more care for her, or the minimal self care we all have to do in order to keep going. I told her that in recent days, especially because each change meant another round of having to leave her room to phone the necessary people, answer the calls from the various departments, or when either of us managed to get any sleep. That even the times we weren't right there, we were here, here for her, and we were both there on either side of her, holding her hands and talking to her as she left us and rejoined dad.
I'm still in the shock/numbness/hasn't set in yet phase, fortunately. The prescription from my doc has helped a lot with that. Just with helping calm my emotions just enough to be able to focus and prioritise better than I could when I was breaking down and had lost all faith and confidence in myself or my ability to do anything.
The last few months have been increasingly intense, each step downwards so painful, and needing the professionals from each department/agency involved to assess and re-assess, and authorise etc. It was only once she'd slipped much further down, immediately after losing dad, that more alarming problems were noticed. Once the diagnosis finally happened, it was a whirlwind of professionals of all kinds calling, visiting, and needing to be updated as the decline became much steeper.
The NHS is wonderful, and I have nothing but good things to say about almost every professional we've met and interacted with, both with dad's care and mum's. Always a couple of bad apples, but many professionals who didn't know us at all went above and beyond at a very difficult time of year to get any wheels in motion higher in the systems to allow them to give the kind of help they could see we needed.
St Peter's Hospice have been amazing - I just wish we'd been able to access their help sooner, then the wheels would have been further in motion, and we may not have had to struggle and burn out so hard towards the end. Not a fault on St Peter's at all - they were all wonderful, competent, thorough, and compassionate, in a very difficult line of work, and gave us more real help and advice, support, and will continue to do so, I'm sure. Will definitely be actively engaging with their emotional support and bereavement services, and hopefully fundraising down the line.
Christmas Eve - throughout the night into Christmas morning, we had to call for district nurses to come out five or six times I think it was. My mind is blurry now on numbers, but it was a lot, and only they could administer the meds that would make mum comfortable and pain free. It was a heart breaking night, it was clear the end was very near.
I'd accidentally made myself sick by taking my own meds on an empty stomach at some point, then later I skipped my meds, but tried to eat some ramen noodles - could only get a couple of bites down, but threw those up. Just from exhaustion, not eating enough or well enough for too long, and going from mum's very warm room, to cold rooms, running back and forth - those temperature fluctuations can really do a number on you when you're in a weakened state physically and emotionally. I did manage some soup and bread, slowly, soon after 5am though.
Christmas morning I'd fallen asleep around 6am. The latest district nurse team I'd called at 3am arrived around 4, we'd been doing our best to make her comfortable and assure her that the nurses were on their way, and she appeared settled and comfortable when they left at 5am, and they said she should be fine for a few hours, so Sam and I were both going to try to get some sleep. Since it was 6am, cats outside were having a long low moaning argument about territory, and poor Pixie has also been through a lot, with my being so busy and clearly upset many times, which means she wants to comfort me, not able to take her for walks many times at all, lots of strangers coming in and out of the house at all hours of the day and night - we're both stuck on being hypervigilant; listening out for knocks on the door, the phone, the call button alarm, anyone calling out for help. So I tried to make the room as quiet and dark as possible, and we both zonked out.
The phone jolted me out of sleep at 9:30am - St Peter's Hospice saying they could send another two Hospice at Home trained care staff for a couple of hours soon after ten if we'd like, and both they, and another two they'd sent the day before, were an amazing help, and I learned as much as I could from them while they were there. All of them, and their St Peter's community nurse, the clinical advice line, the community nurses who assessed mum, fast tracked her care package, and checked in on us, finding us whatever respite care they could - they were all brilliant, and went above and beyond.
I'd been doing all of mum's personal care for a while, at the point when she was still able to transfer to the shower, to a chair or commode in her room, and once she was bedbound. The agency CHC finding had given the contact to, to help us? Not so good. But I don't want to focus on that part right now. Lets just say that even though my nursing home care assistant days are now decades out of date, and my years of work as a support worker for adults with profound learning difficulties and challenging behaviour is also a while in the past - I had to teach them anything that needed doing. Yes, over protective and exhausted daughter I'm sure plays a factor, but they clearly hadn't been given the training needed to truly be a help, and were definitely not able to handle a patient who has reached the hospice level rapid decline.
I've witnessed, sat with, cared for patients who are in their last days more times than I care to count... but then I always had coworkers to help, nurses always on hand when needed, and hospice level care at home when you're alone with a bedbound patient is not easy... at all. While I and my coworkers always treated patients the way we'd want our own family to be treated, it's still different when it's your own loved one, and personal grief is tied into it. I was terrified she'd have to go into the hospice itself, and doing everything I could to prevent that from having it happen. Having those well trained, competent pair of workers meant the world, on both occasions.
They arrived at 10am, straight to mum's room and began to give her gentle, skilled and dignified personal care. Soon after they arrived, the "healthcare agency" care assistance workers arrived, they had been arriving roughly around 10 most mornings, but tended to just change her pad with a quick wash, then leave early, and while they were kind and sympathetic, I said they could go, that the St Peter's team were here now, and I needed to get help from them, but I may still need the 30 minutes at 6pm the care package was currently set for. Nothing against the care assistants themselves really - although showing up late, leaving early, and not being very helpful were also factors, not just the lack of training. But I knew mum was in better hands this morning, and it meant I could hand them whatever they needed, while also learning more about the best ways to position her to keep her as comfortable as possible.
They did warn me, although I was aware, that moving her in order to clean her could mean she'd pass away in the process. I'm aware of that fact on a logical level, but we really didn't have a choice but to try. Better to do it then when the three of us were there, and Sam only down the hall, so mum could be clean and comfortable, and be in the best position to help her be comfortable, and to feel fresh and clean, than me having to do it alone or with a less trained agency care worker who wants to get done and leave early.
I'd already been cleaning her face, providing oral care for a patient who can't swallow anymore, and had shown Sam how to help me use the sheet to move her higher up the bed and prop her up, when we were waiting for district nurses to arrive between 3-4am, and done all I could do to make as comfortable as possible over a very difficult day and night for us all, but I know they did a much better job than I could have done alone, and mum did settle into a calm sleep once they were done, I'd been talking to her while the St Peter's nurses wrote up their notes, and asking them the odd question so I could continue to try to provide the best care I could once they'd left. It's so hard to judge when it'll be. Even once someone stops taking in food or much water orally, besides some dribbles given via syringe inside the cheek, they can linger like that for a week, but we could all see that she was very close to the end. But at least clean, comfortable, comforted, and visibly more relaxed and comfortable than before. Sleeping.
The workers said they were happy to sit with her if I wanted to go grab coffee, or a bath (I was desperate for a bath, I hadn't even had time to take a shower for two, maybe three days, felt disgusting, but mum's care came first). Grabbed a coffee and let Pixie out to pee, went to brush my teeth, gave the bathtub a good bleach clean, and was about to turn the water on to fill the tub when there was a gentle tap at the bathroom door, and Sam's. I just knew, then. She asked if I was in the bath, I almost rushed into her coming out of the bathroom, said thankfully no, I'd only cleaned it and begun to prep, came into mum's room, and saw/heard why they'd tapped on the door, she was still with us, but her breathing had changed just in the 15 minutes or so since I'd left the room. The hospice workers stayed late, one stepped into the hallway to call the district nurses for us, the other sat quietly with us, and Sam and I could be on either side, holding her hands, I kissed and stroked her cheek and head, and she slipped away at noon.
The Hospice carers were angels there right when we all needed them the most. I think my mum, or divine intervention, played a part in the timing. Uncle was aiming to be here for midday, he arrived a little after one. She well knew his tendency to be late, and he said he was only late because he'd forgotten his bag with phone, meds etc, and had had to turn around. But they'd already said their goodbyes on the 23rd when she was still able to have a conversation, even though weaker, but she knew him being there for Sam and I would mean a lot to us and keep us going through today, and it did.
Immediately after mum passed, I was sinking to my knees and trying to hold back sobbing, the hospice workers got me sat in a chair and breathing deep but slow. They asked if we had a funeral company/director chosen, I said no, briefly that we hadn't yet finished paying for dad's funeral, that he'd passed without a will, mum didn't have a will either, and until we've found some guidance about making sure it's all sorted legally before touching her accounts/their joint account, or dad's own account. That I'm on disability benefits, but not the max amount I used to get, and Sam only on jobseekers since covid closed his hotel and he was out of work, then shielding mum and dad while I travelled back and forth from the other side of the city when I could, spending a week or two here, then back to my flat for a while, which became untenable, especially how difficult it was to get to them often, and while I loved my flat and being so near to the countryside, it's not a side of our city I know well, didn't have friends or family close by, and wasn't doing well mentally after a lot of trauma and isolation. So gave up my flat and moved back in here officially after dad broke his hip and they needed a lot more day to day help.
While mum and dad paid off the mortgage and own the house, and I assume Sam and I would inherit equally, I didn't think we could afford the utilities between us, so may have to sell the house for below market value to a flipper since it needs far more work than we could afford to do to make it sell for a good price, and we'd have to sell it anyway down the line since it's the only thing of real value we're inheriting - and I've no idea what impact inheriting half a house has on the benefits we each get right now. Sam does want to return to work, as do I, but neither of us are ready yet, and I'm definitely not ready yet to let go of my childhood home, with touches of my parents everywhere, and all their belongings to sort through, let alone the financial and legal mess to sort. There's just enough between their accounts and savings to cover both of their simple cremations, but it won't leave much left over to even redecorate the house, let alone fix underlying damp/mould and other problems that come with a house built in the 1920s, and is ex-council housing, with so much stuff to sort out, and no car.
Let alone potentially have to give up some of the pets, since rules around renting often disallow even a single dog, let alone doing dog fostering and rehab, the way I'd been daydreaming about. Longer term, I've had a long held daydream about training a dog to do search and rescue. Pixie would have excelled at it had I trained her for it when she was young. She didn't have the personality to enjoy being a PAT therapy dog as I'd hoped to do with her, but that's just a personality thing, and she taught me so much with her bright, busy, high energy and intense connection that her Springer/Border Collie mix produced.
She's 11 now, but doesn't look or act it beyond still fairly mild arthritis, and I'd never get a second dog while I have her, I think it would break her heart to share me in that way, but she's been very accepting of other dogs she knows even in her territory, like when my bestie bought his Greyhound for the weekend earlier in December. She'd be a great stabilising and confidence building mature female to put another dog in line when needed, but without going overboard - dog walking friends often ask me to meet them for walks, training and socialising when they have a new pup, because they know she'll be polite, even friendly to other dogs that are polite when they greet her and don't jump all over her, and that when she does correct an over-enthusiastic/undersocialised dog that is too in her face or crosses a line, she'll give them plenty of warning via body language, and only tell them off as much as needed without going overboard, and immediately let it go if the pup learns from it and happily greet them again if they're more respectful!
Helps that she has a 100% recall, can run off lead and explore, play, do her own thing being a sniffer dog and thoroughly checking the hedgerows for game (hasn't sent any pheasants flying yet though - one day), knows cues like "drop" "leave" "gentle", and a few tricks! An older, calm dog can be really reassuring and lead by example for a rescue. Plus then the rescue would cover vet costs etc for the foster dog, I'm a pretty decent dog trainer who uses positive only training methods, and having a decent sized fenced/hedged garden and no landlord to worry about would help too.
I didn't share all the dog fostering stuff with the hospice staff, just that it was a legal/financial mess that we hadn't had chance to even begin wading through.
They said try not to worry about that for now, that St Peter's have a social work team that specialise in helping in this kind of thing, and can help us begin sorting it, including claiming the benefits we would have been entitled to long ago, especially since dad broke his hip; and ways to help us cover the cost of utilities and white goods, especially with the current cost of living, that because mum was in hospice at home care, there are also advocates and the like that work with family who are left with the financial and legal matters once the hospice patient has passed away. It may be possible to do it, at least to buy us some time to sort through things, get rid of junk while saving the meaningful and sentimental things, and give us time to grieve, and recover our own mental health.
She said the next step is the district nurses come out to officially confirm mum's passing, then a funeral home could come and collect mum. We went and had a cup of tea (this is the British way), and they said funeral homes will work out a payment plan, knowing how these things often are with settling an estate, then left once they knew we were okay, saying to call on any of the St Peter's Hospice services, that they're for the bereaved family too, including emotional support, counselling, and that social work/finance team, and that they'd contacted the district nurse team for us before leaving us, each giving me a hug as I blubbered my thank yous, that they're angels, and how grateful we are.
I dug out the notebook I'd used when planning dad's funeral, and rang them. The lady who answered was so kind and understanding, I started to explain that my mum had just passed, no funeral arrangements or will in place, and that we still owed them money from dad's funeral. She introduced herself and said she was one of the funeral directors, and I said wait, [her name], I think it was you who helped arrange my dad's funeral. When I told her dad's name, she said "Oh yes! I remember, I came to your house for the planning (usually people go to the funeral home, but given mum's health even then, plus my agoraphobia, we asked if they could come to us, and they did) and met your mum then, I'm so sorry you're going through this second loss, and on Christmas day too. But don't worry about the finances right now, we can take care of mum. Once the district nurses have been, we can came and take care of mum whenever you're ready."
We had a little grieving time when breaking the news to Uncle Mike that mum had just passed a little more than a hour ago. It's hard. He's not technically an Uncle, but he's been my parents lifelong closest friend, since he was 19, and he's now 78, although fairly healthy and robust for a 78 year old. But has had some serious losses himself too. Went a bit on autopilot, getting Uncle Mike settled in a chair with a coffee and mince pie, got some hugs and let me weep a bit, but I still have that "get tasks done, process the emotions later" autopilot kicked in for a while.
Took some short breaks to stand in the garden and breathe - strongly felt as though mum and dad were present with us, which was comforting, and Uncle Mike or Sam would come stand in the kitchen doorway or join me in the garden to talk, see if I was okay or needed anything. Sam had called our cousin, one of mum's sister's daughters, to let them know mum had passed. They had called that morning while with mum's sister, who has altzeimers and has been bedbound for two years, but has a lot of outside care now, along with their support and their families all living near each other, but still only about an hour away from us by train. They're a huge comfort and support, have left it to their judgement whether to tell Auntie Pat, or when/how, but she reminded me that we're family, they're there for us, they will come see us, and that we're welcome there any time, can stay with them, see Auntie Pat, and see my second cousins, who have kids of their own now. I'd love to go spend a weekend with them sometime soon, haven't seen Auntie Pat in so long since mum couldn't manage a car ride that long anymore even if we had a car.
Uncle Mike did want to see mum, and also reminded me to let Pixie come up and see/scent mum, so she'd be aware she'd passed away. Mike knows dogs too. So I left Mike and Sam talking and went in to tidy things and move all the hospital/care/paperwork type stuff away, straighten the room up a bit, gather the laundry, air the room and spray some febreeze around etc. Once all four of us (including Pixie) had said our goodbyes, I made sure window was open and radiators turned off, and shut the door.
Prayers are answered, I'm glad your mum passed peacefully, & that you and your brother could be there with her... some comfort in knowing she's in a better place, & without pain... I know that doesn't make you miss her any less, but it sounds like you always wanted what was best for her... sorry about your loss, & I'm praying for peace & strength, for you & your brother, after your mum's passing...
Thank you all so much - from the bottom of my heart.
Mum passed away peacefully and appeared to be painlessly at noon on Christmas Day.
Have sent prayers and thanks that she was at least able to pass peacefully at home, with my brother and I both there throughout, even in the times we weren't physically in the room with her - we were doing things to get more care for her, or the minimal self care we all have to do in order to keep going. I told her that in recent days, especially because each change meant another round of having to leave her room to phone the necessary people, answer the calls from the various departments, or when either of us managed to get any sleep. That even the times we weren't right there, we were here, here for her, and we were both there on either side of her, holding her hands and talking to her as she left us and rejoined dad.
I'm still in the shock/numbness/hasn't set in yet phase, fortunately. The prescription from my doc has helped a lot with that. Just with helping calm my emotions just enough to be able to focus and prioritise better than I could when I was breaking down and had lost all faith and confidence in myself or my ability to do anything.
The last few months have been increasingly intense, each step downwards so painful, and needing the professionals from each department/agency involved to assess and re-assess, and authorise etc. It was only once she'd slipped much further down, immediately after losing dad, that more alarming problems were noticed. Once the diagnosis finally happened, it was a whirlwind of professionals of all kinds calling, visiting, and needing to be updated as the decline became much steeper.
The NHS is wonderful, and I have nothing but good things to say about almost every professional we've met and interacted with, both with dad's care and mum's. Always a couple of bad apples, but many professionals who didn't know us at all went above and beyond at a very difficult time of year to get any wheels in motion higher in the systems to allow them to give the kind of help they could see we needed.
St Peter's Hospice have been amazing - I just wish we'd been able to access their help sooner, then the wheels would have been further in motion, and we may not have had to struggle and burn out so hard towards the end. Not a fault on St Peter's at all - they were all wonderful, competent, thorough, and compassionate, in a very difficult line of work, and gave us more real help and advice, support, and will continue to do so, I'm sure. Will definitely be actively engaging with their emotional support and bereavement services, and hopefully fundraising down the line.
Christmas Eve - throughout the night into Christmas morning, we had to call for district nurses to come out five or six times I think it was. My mind is blurry now on numbers, but it was a lot, and only they could administer the meds that would make mum comfortable and pain free. It was a heart breaking night, it was clear the end was very near.
I'd accidentally made myself sick by taking my own meds on an empty stomach at some point, then later I skipped my meds, but tried to eat some ramen noodles - could only get a couple of bites down, but threw those up. Just from exhaustion, not eating enough or well enough for too long, and going from mum's very warm room, to cold rooms, running back and forth - those temperature fluctuations can really do a number on you when you're in a weakened state physically and emotionally. I did manage some soup and bread, slowly, soon after 5am though.
Christmas morning I'd fallen asleep around 6am. The latest district nurse team I'd called at 3am arrived around 4, we'd been doing our best to make her comfortable and assure her that the nurses were on their way, and she appeared settled and comfortable when they left at 5am, and they said she should be fine for a few hours, so Sam and I were both going to try to get some sleep. Since it was 6am, cats outside were having a long low moaning argument about territory, and poor Pixie has also been through a lot, with my being so busy and clearly upset many times, which means she wants to comfort me, not able to take her for walks many times at all, lots of strangers coming in and out of the house at all hours of the day and night - we're both stuck on being hypervigilant; listening out for knocks on the door, the phone, the call button alarm, anyone calling out for help. So I tried to make the room as quiet and dark as possible, and we both zonked out.
The phone jolted me out of sleep at 9:30am - St Peter's Hospice saying they could send another two Hospice at Home trained care staff for a couple of hours soon after ten if we'd like, and both they, and another two they'd sent the day before, were an amazing help, and I learned as much as I could from them while they were there. All of them, and their St Peter's community nurse, the clinical advice line, the community nurses who assessed mum, fast tracked her care package, and checked in on us, finding us whatever respite care they could - they were all brilliant, and went above and beyond.
I'd been doing all of mum's personal care for a while, at the point when she was still able to transfer to the shower, to a chair or commode in her room, and once she was bedbound. The agency CHC finding had given the contact to, to help us? Not so good. But I don't want to focus on that part right now. Lets just say that even though my nursing home care assistant days are now decades out of date, and my years of work as a support worker for adults with profound learning difficulties and challenging behaviour is also a while in the past - I had to teach them anything that needed doing. Yes, over protective and exhausted daughter I'm sure plays a factor, but they clearly hadn't been given the training needed to truly be a help, and were definitely not able to handle a patient who has reached the hospice level rapid decline.
I've witnessed, sat with, cared for patients who are in their last days more times than I care to count... but then I always had coworkers to help, nurses always on hand when needed, and hospice level care at home when you're alone with a bedbound patient is not easy... at all. While I and my coworkers always treated patients the way we'd want our own family to be treated, it's still different when it's your own loved one, and personal grief is tied into it. I was terrified she'd have to go into the hospice itself, and doing everything I could to prevent that from having it happen. Having those well trained, competent pair of workers meant the world, on both occasions.
They arrived at 10am, straight to mum's room and began to give her gentle, skilled and dignified personal care. Soon after they arrived, the "healthcare agency" care assistance workers arrived, they had been arriving roughly around 10 most mornings, but tended to just change her pad with a quick wash, then leave early, and while they were kind and sympathetic, I said they could go, that the St Peter's team were here now, and I needed to get help from them, but I may still need the 30 minutes at 6pm the care package was currently set for. Nothing against the care assistants themselves really - although showing up late, leaving early, and not being very helpful were also factors, not just the lack of training. But I knew mum was in better hands this morning, and it meant I could hand them whatever they needed, while also learning more about the best ways to position her to keep her as comfortable as possible.
They did warn me, although I was aware, that moving her in order to clean her could mean she'd pass away in the process. I'm aware of that fact on a logical level, but we really didn't have a choice but to try. Better to do it then when the three of us were there, and Sam only down the hall, so mum could be clean and comfortable, and be in the best position to help her be comfortable, and to feel fresh and clean, than me having to do it alone or with a less trained agency care worker who wants to get done and leave early.
I'd already been cleaning her face, providing oral care for a patient who can't swallow anymore, and had shown Sam how to help me use the sheet to move her higher up the bed and prop her up, when we were waiting for district nurses to arrive between 3-4am, and done all I could do to make as comfortable as possible over a very difficult day and night for us all, but I know they did a much better job than I could have done alone, and mum did settle into a calm sleep once they were done, I'd been talking to her while the St Peter's nurses wrote up their notes, and asking them the odd question so I could continue to try to provide the best care I could once they'd left. It's so hard to judge when it'll be. Even once someone stops taking in food or much water orally, besides some dribbles given via syringe inside the cheek, they can linger like that for a week, but we could all see that she was very close to the end. But at least clean, comfortable, comforted, and visibly more relaxed and comfortable than before. Sleeping.
The workers said they were happy to sit with her if I wanted to go grab coffee, or a bath (I was desperate for a bath, I hadn't even had time to take a shower for two, maybe three days, felt disgusting, but mum's care came first). Grabbed a coffee and let Pixie out to pee, went to brush my teeth, gave the bathtub a good bleach clean, and was about to turn the water on to fill the tub when there was a gentle tap at the bathroom door, and Sam's. I just knew, then. She asked if I was in the bath, I almost rushed into her coming out of the bathroom, said thankfully no, I'd only cleaned it and begun to prep, came into mum's room, and saw/heard why they'd tapped on the door, she was still with us, but her breathing had changed just in the 15 minutes or so since I'd left the room. The hospice workers stayed late, one stepped into the hallway to call the district nurses for us, the other sat quietly with us, and Sam and I could be on either side, holding her hands, I kissed and stroked her cheek and head, and she slipped away at noon.
The Hospice carers were angels there right when we all needed them the most. I think my mum, or divine intervention, played a part in the timing. Uncle was aiming to be here for midday, he arrived a little after one. She well knew his tendency to be late, and he said he was only late because he'd forgotten his bag with phone, meds etc, and had had to turn around. But they'd already said their goodbyes on the 23rd when she was still able to have a conversation, even though weaker, but she knew him being there for Sam and I would mean a lot to us and keep us going through today, and it did.
Immediately after mum passed, I was sinking to my knees and trying to hold back sobbing, the hospice workers got me sat in a chair and breathing deep but slow. They asked if we had a funeral company/director chosen, I said no, briefly that we hadn't yet finished paying for dad's funeral, that he'd passed without a will, mum didn't have a will either, and until we've found some guidance about making sure it's all sorted legally before touching her accounts/their joint account, or dad's own account. That I'm on disability benefits, but not the max amount I used to get, and Sam only on jobseekers since covid closed his hotel and he was out of work, then shielding mum and dad while I travelled back and forth from the other side of the city when I could, spending a week or two here, then back to my flat for a while, which became untenable, especially how difficult it was to get to them often, and while I loved my flat and being so near to the countryside, it's not a side of our city I know well, didn't have friends or family close by, and wasn't doing well mentally after a lot of trauma and isolation. So gave up my flat and moved back in here officially after dad broke his hip and they needed a lot more day to day help.
While mum and dad paid off the mortgage and own the house, and I assume Sam and I would inherit equally, I didn't think we could afford the utilities between us, so may have to sell the house for below market value to a flipper since it needs far more work than we could afford to do to make it sell for a good price, and we'd have to sell it anyway down the line since it's the only thing of real value we're inheriting - and I've no idea what impact inheriting half a house has on the benefits we each get right now. Sam does want to return to work, as do I, but neither of us are ready yet, and I'm definitely not ready yet to let go of my childhood home, with touches of my parents everywhere, and all their belongings to sort through, let alone the financial and legal mess to sort. There's just enough between their accounts and savings to cover both of their simple cremations, but it won't leave much left over to even redecorate the house, let alone fix underlying damp/mould and other problems that come with a house built in the 1920s, and is ex-council housing, with so much stuff to sort out, and no car.
Let alone potentially have to give up some of the pets, since rules around renting often disallow even a single dog, let alone doing dog fostering and rehab, the way I'd been daydreaming about. Longer term, I've had a long held daydream about training a dog to do search and rescue. Pixie would have excelled at it had I trained her for it when she was young. She didn't have the personality to enjoy being a PAT therapy dog as I'd hoped to do with her, but that's just a personality thing, and she taught me so much with her bright, busy, high energy and intense connection that her Springer/Border Collie mix produced.
She's 11 now, but doesn't look or act it beyond still fairly mild arthritis, and I'd never get a second dog while I have her, I think it would break her heart to share me in that way, but she's been very accepting of other dogs she knows even in her territory, like when my bestie bought his Greyhound for the weekend earlier in December. She'd be a great stabilising and confidence building mature female to put another dog in line when needed, but without going overboard - dog walking friends often ask me to meet them for walks, training and socialising when they have a new pup, because they know she'll be polite, even friendly to other dogs that are polite when they greet her and don't jump all over her, and that when she does correct an over-enthusiastic/undersocialised dog that is too in her face or crosses a line, she'll give them plenty of warning via body language, and only tell them off as much as needed without going overboard, and immediately let it go if the pup learns from it and happily greet them again if they're more respectful!
Helps that she has a 100% recall, can run off lead and explore, play, do her own thing being a sniffer dog and thoroughly checking the hedgerows for game (hasn't sent any pheasants flying yet though - one day), knows cues like "drop" "leave" "gentle", and a few tricks! An older, calm dog can be really reassuring and lead by example for a rescue. Plus then the rescue would cover vet costs etc for the foster dog, I'm a pretty decent dog trainer who uses positive only training methods, and having a decent sized fenced/hedged garden and no landlord to worry about would help too.
I didn't share all the dog fostering stuff with the hospice staff, just that it was a legal/financial mess that we hadn't had chance to even begin wading through.
They said try not to worry about that for now, that St Peter's have a social work team that specialise in helping in this kind of thing, and can help us begin sorting it, including claiming the benefits we would have been entitled to long ago, especially since dad broke his hip; and ways to help us cover the cost of utilities and white goods, especially with the current cost of living, that because mum was in hospice at home care, there are also advocates and the like that work with family who are left with the financial and legal matters once the hospice patient has passed away. It may be possible to do it, at least to buy us some time to sort through things, get rid of junk while saving the meaningful and sentimental things, and give us time to grieve, and recover our own mental health.
She said the next step is the district nurses come out to officially confirm mum's passing, then a funeral home could come and collect mum. We went and had a cup of tea (this is the British way), and they said funeral homes will work out a payment plan, knowing how these things often are with settling an estate, then left once they knew we were okay, saying to call on any of the St Peter's Hospice services, that they're for the bereaved family too, including emotional support, counselling, and that social work/finance team, and that they'd contacted the district nurse team for us before leaving us, each giving me a hug as I blubbered my thank yous, that they're angels, and how grateful we are.
I dug out the notebook I'd used when planning dad's funeral, and rang them. The lady who answered was so kind and understanding, I started to explain that my mum had just passed, no funeral arrangements or will in place, and that we still owed them money from dad's funeral. She introduced herself and said she was one of the funeral directors, and I said wait, [her name], I think it was you who helped arrange my dad's funeral. When I told her dad's name, she said "Oh yes! I remember, I came to your house for the planning (usually people go to the funeral home, but given mum's health even then, plus my agoraphobia, we asked if they could come to us, and they did) and met your mum then, I'm so sorry you're going through this second loss, and on Christmas day too. But don't worry about the finances right now, we can take care of mum. Once the district nurses have been, we can came and take care of mum whenever you're ready."
We had a little grieving time when breaking the news to Uncle Mike that mum had just passed a little more than a hour ago. It's hard. He's not technically an Uncle, but he's been my parents lifelong closest friend, since he was 19, and he's now 78, although fairly healthy and robust for a 78 year old. But has had some serious losses himself too. Went a bit on autopilot, getting Uncle Mike settled in a chair with a coffee and mince pie, got some hugs and let me weep a bit, but I still have that "get tasks done, process the emotions later" autopilot kicked in for a while.
Took some short breaks to stand in the garden and breathe - strongly felt as though mum and dad were present with us, which was comforting, and Uncle Mike or Sam would come stand in the kitchen doorway or join me in the garden to talk, see if I was okay or needed anything. Sam had called our cousin, one of mum's sister's daughters, to let them know mum had passed. They had called that morning while with mum's sister, who has altzeimers and has been bedbound for two years, but has a lot of outside care now, along with their support and their families all living near each other, but still only about an hour away from us by train. They're a huge comfort and support, have left it to their judgement whether to tell Auntie Pat, or when/how, but she reminded me that we're family, they're there for us, they will come see us, and that we're welcome there any time, can stay with them, see Auntie Pat, and see my second cousins, who have kids of their own now. I'd love to go spend a weekend with them sometime soon, haven't seen Auntie Pat in so long since mum couldn't manage a car ride that long anymore even if we had a car.
Uncle Mike did want to see mum, and also reminded me to let Pixie come up and see/scent mum, so she'd be aware she'd passed away. Mike knows dogs too. So I left Mike and Sam talking and went in to tidy things and move all the hospital/care/paperwork type stuff away, straighten the room up a bit, gather the laundry, air the room and spray some febreeze around etc. Once all four of us (including Pixie) had said our goodbyes, I made sure window was open and radiators turned off, and shut the door.
You gave her everything you could have in her last days here on earth. She was wholly loved, and all of us here can see that. I hope your community surrounds you and lifts you up in this, but know you also have all of us to fall back on
