Hi Everyone,
It's been a while since I've been on the forum; partly due to avoidance and partly due to having had another death in the family (not MND-related, but it's come very close after losing my Gran and it kind of 're-awakened' the pain for me).
I don't particularly want to trouble you all by 'talking bereavement' on here because I know it must feel horrible to you all, in the face of this horrid disease. However, I know that you guys are the only ones who will truly understand where I'm coming from. Sadly, due to covid, I've been unable to see my MND counsellor since my Gran passed away in February, so I've not yet had the chance to talk it through with anyone, really.
For a few months, I felt very 'stuck in time' (not helped by lockdown, of course). I couldn't grieve properly. Tears wouldn't come, any feeling at all seemed to evade me, despite my trying to 'bring it out'. I know that the best way to get through grief is to actually go through it, rather than push it away, but it seemed to be doing that all by itself.
When the cemetaries finally allowed visitors again, I was able to scatter my Gran's ashes. I visited a few weeks later, as it was the anniverasary of my Mum's passing and the strangest thing happened. I stood to lay flowers for my Mum and found a rush of emotion- tears flowed like never before. I then went over to lay flowers for Gran- my emotions immediately switched off. I felt nothing. Why did this happen when I was closer to Gran than anyone else in my life? I found it very strange and could not explain it.
Today, though, it finally seemed to start showing itself. Tomorrow is 3 years since my Mum's funeral and so, I was looking through old photos and there I saw my Gran's photos in amongst my Mum's. Finally, some emotion. Finally, some tears. I felt the sorrow I'd been longing to find (I know that sounds kind of strange, to seek out sadness, but to feel numb is so much worse).
I am replaying those horrid months- all the way back when Gran first slipped on black ice in Feb/March 2018 and could not shake the pain just to the side of her spine and then the weeks that followed when she could no longer wiggle her toes and told me she felt pins and needles. The months of doctors visits, to be told that she had vitamin D deficiency or a water infection (really!). The ambulance calls when she fell and I could not lift her up off the floor and the day when we finally said enough was enough and took her to A&E because the neurologist had dismissed her, following an inaccurately-performed EMG which gave false results saying everything was normal, when it clearly wasn't. That night, we stayed in the A&E waiting area from 6pm together until 4am in the morning- she was in agony from sitting in the wheelchair for so long, unable to relieve the pressure on her peroneal nerve. I had work the following morning, so I finally convinced the nurse to get her a trolley bed to lie on until she was finally admitted to the neurology ward. 2 agonising weeks later and she got the diagnosis that I'd already researched and found for myself only 3 weeks earlier (I did not tell her until it was confirmed and still hoped I was wrong).
She was sent home after diagnosis, with a generic NHS carer package (1 carer, 3 times per day for half an hour each time). None of them had a clue what MND was and kept telling my Gran 'yes, you can get up, you're supposed to be recovering from your time in hospital'- frustration wasn't the word. We eventually got a permanent agency after 6 weeks and they were ten times worse (bar one carer, but she often took time off due to being the most overworked of them all, as she was the most sought-after)- 18 and 19 year olds, with no experience of MND or anything like it; leaving commode brakes off when they left or taking the key from the key safe to their next appointment in error and one carer who we found relieving herself in my Gran's back garden before entering the house! All of the complaints were met with 'we can only apologise' and nothing more. Due to these errors, I could not have a night off and was still working full-time, often leaving my house at 7:30am and not getting home until 10 or 11pm every night because the night carers came late (or not at all). I was broken and the problems MND brings were getting worse- I could no longer help Gran to the toilet because her legs simply gave way beneath her and we had no hoist. She was finally so done with the carers and so terrified of the next agency being worse that she gave up her home of 50 years and elected to go into our local Nursing Home, where they'd supposedly had experience of MND before. The house was council-owned; having to try and get Gran settled in her new surroundings (put on a happy face and say everything's fine), whilst also still working and clearing 50 years' worth of belongings from a house in the space of 2 weeks nearly killed me.
These carers were only mildly better than the ones that had come to the house, in that they were on-site 24/7. Gran no longer had to wait up to 15 hours(on one notable occasion) to go to the toilet, but the home was short-staffed and Gran's needs were becoming a 2-man job. It meant she waited longer than most patients to be tended to and, with her voice betraying her, she could no longer call for help or speak for herself. I became the 'from 4:30pm onwards carer'. The 8 months she spent in that Nursing Home felt the hardest.
Towards the end of her life, we finally got what seemed to be the only bit of 'good luck' we'd had since diagnosis- Gran was allocated a spot at the local hospice (she'd wanted to go there instead of the Nursing Home, but was told that in-patient stay was only for people who had a very short time left and they thought she'd have quite some time). So, I packed her room up and she moved. The care was, to her, worse than the Nursing Home. The room was lovely as she finally had a window she could see out of and she finally had a catheter (something I'd been pushing for for a number of weeks to try and alleviate her stress at being hoisted). However, they also treated her like she 'wasn't all there' due to her speech issue and ignored her pleas that she was uncomfortable. She was put on a syringe driver and we thought 'this is it'- she dipped in and out of consciousness from the morphine for a week. They finally lowered the dosage and she was back with us and said she wanted to go back to the Nursing Home. So, I packed up the room again and moved her back (luckily her room was still available). The Nursing Home (thankfully) finally listened to us- they kept the syringe driver in and kept the catheter in. But, Gran had not eaten anything or drank much for 3 weeks at this point- her swallow was all but gone and she'd only said she was interested in the PEG when it was too late for her to have it (we'd pushed for months to tell her to think of the future, not the now, but she'd outright refused). I monitored her urine output (sorry to be a little graphic here) and saw that it hadn't been a normal colour since she'd had it inserted and there was barely anything in the bag. I knew we didn't have long left. But I was so tired, at this point. She'd had enough of having to write things down and constantly struggle to get comfortable (I'm sure most of you get the struggle of having the pillows exactly right!) We were each others' closest ally and we had only each other to let our frustration out on- she'd snap at me (wordlessly, of course) and I'd rush to get things done for her so I could stop watching her suffer. The final night I saw her, I left earlier than normal. Just before I left, she wrote 'I'm lonely' (she could no longer see her TV- her eyes seemed to blur a lot toward the end) and she'd just lie in her room, doing nothing, when nobody was there. I couldn't watch it anymore and I couldn't think of any way to alleviate this part of the suffering. I will never forgive myself for leaving early that day, but what's done is done.
The following day, it was 3:40pm and the Home phoned to say Gran's breathing had become strained. I have never driven so dangerously to get somewhere so fast (I remember holding back tears whilst driving, saying out loud 'please don't die' over and over again). The Home was only 10 minutes away, but I was too late. She'd died 5 minutes before I got there (thankfully, she wasn't alone- her sister, brother and Mother (yes, Mother, at 102 years old!) were with her and I'm told it was extremely peaceful. Thinking on it, it was the only peaceful part of her whole MND experience.
These are just the 'main' memories that I am sharing with you, to take you through the journey we went on together. There were many arguments, tears, things going wrong and some laughs along the way. I really just wanted to 'get this out there'. I think Gran's story is one of the more traumatic (not helped by her horrendously stubborn nature!
) - we didn't have much support and we weren't given a lot of information- most of it I learned from all of you on this forum, so thank you!
I want to tell you all that you are absolute warriors- you are the strongest of humanity and I will never forget the MND journey (as much as I might want to, sometimes!)
Thank you all for taking the time to read this and I'm incredibly apologetic at the length of my post- everything just spilled out all at once.
Love to you all and thank you again for being the only ones who were there for me during my darkest days as an MND Carer. You have no idea how many times you saved me from the brink of destruction xxxx
It's been a while since I've been on the forum; partly due to avoidance and partly due to having had another death in the family (not MND-related, but it's come very close after losing my Gran and it kind of 're-awakened' the pain for me).
I don't particularly want to trouble you all by 'talking bereavement' on here because I know it must feel horrible to you all, in the face of this horrid disease. However, I know that you guys are the only ones who will truly understand where I'm coming from. Sadly, due to covid, I've been unable to see my MND counsellor since my Gran passed away in February, so I've not yet had the chance to talk it through with anyone, really.
For a few months, I felt very 'stuck in time' (not helped by lockdown, of course). I couldn't grieve properly. Tears wouldn't come, any feeling at all seemed to evade me, despite my trying to 'bring it out'. I know that the best way to get through grief is to actually go through it, rather than push it away, but it seemed to be doing that all by itself.
When the cemetaries finally allowed visitors again, I was able to scatter my Gran's ashes. I visited a few weeks later, as it was the anniverasary of my Mum's passing and the strangest thing happened. I stood to lay flowers for my Mum and found a rush of emotion- tears flowed like never before. I then went over to lay flowers for Gran- my emotions immediately switched off. I felt nothing. Why did this happen when I was closer to Gran than anyone else in my life? I found it very strange and could not explain it.
Today, though, it finally seemed to start showing itself. Tomorrow is 3 years since my Mum's funeral and so, I was looking through old photos and there I saw my Gran's photos in amongst my Mum's. Finally, some emotion. Finally, some tears. I felt the sorrow I'd been longing to find (I know that sounds kind of strange, to seek out sadness, but to feel numb is so much worse).
I am replaying those horrid months- all the way back when Gran first slipped on black ice in Feb/March 2018 and could not shake the pain just to the side of her spine and then the weeks that followed when she could no longer wiggle her toes and told me she felt pins and needles. The months of doctors visits, to be told that she had vitamin D deficiency or a water infection (really!). The ambulance calls when she fell and I could not lift her up off the floor and the day when we finally said enough was enough and took her to A&E because the neurologist had dismissed her, following an inaccurately-performed EMG which gave false results saying everything was normal, when it clearly wasn't. That night, we stayed in the A&E waiting area from 6pm together until 4am in the morning- she was in agony from sitting in the wheelchair for so long, unable to relieve the pressure on her peroneal nerve. I had work the following morning, so I finally convinced the nurse to get her a trolley bed to lie on until she was finally admitted to the neurology ward. 2 agonising weeks later and she got the diagnosis that I'd already researched and found for myself only 3 weeks earlier (I did not tell her until it was confirmed and still hoped I was wrong).
She was sent home after diagnosis, with a generic NHS carer package (1 carer, 3 times per day for half an hour each time). None of them had a clue what MND was and kept telling my Gran 'yes, you can get up, you're supposed to be recovering from your time in hospital'- frustration wasn't the word. We eventually got a permanent agency after 6 weeks and they were ten times worse (bar one carer, but she often took time off due to being the most overworked of them all, as she was the most sought-after)- 18 and 19 year olds, with no experience of MND or anything like it; leaving commode brakes off when they left or taking the key from the key safe to their next appointment in error and one carer who we found relieving herself in my Gran's back garden before entering the house! All of the complaints were met with 'we can only apologise' and nothing more. Due to these errors, I could not have a night off and was still working full-time, often leaving my house at 7:30am and not getting home until 10 or 11pm every night because the night carers came late (or not at all). I was broken and the problems MND brings were getting worse- I could no longer help Gran to the toilet because her legs simply gave way beneath her and we had no hoist. She was finally so done with the carers and so terrified of the next agency being worse that she gave up her home of 50 years and elected to go into our local Nursing Home, where they'd supposedly had experience of MND before. The house was council-owned; having to try and get Gran settled in her new surroundings (put on a happy face and say everything's fine), whilst also still working and clearing 50 years' worth of belongings from a house in the space of 2 weeks nearly killed me.
These carers were only mildly better than the ones that had come to the house, in that they were on-site 24/7. Gran no longer had to wait up to 15 hours(on one notable occasion) to go to the toilet, but the home was short-staffed and Gran's needs were becoming a 2-man job. It meant she waited longer than most patients to be tended to and, with her voice betraying her, she could no longer call for help or speak for herself. I became the 'from 4:30pm onwards carer'. The 8 months she spent in that Nursing Home felt the hardest.
Towards the end of her life, we finally got what seemed to be the only bit of 'good luck' we'd had since diagnosis- Gran was allocated a spot at the local hospice (she'd wanted to go there instead of the Nursing Home, but was told that in-patient stay was only for people who had a very short time left and they thought she'd have quite some time). So, I packed her room up and she moved. The care was, to her, worse than the Nursing Home. The room was lovely as she finally had a window she could see out of and she finally had a catheter (something I'd been pushing for for a number of weeks to try and alleviate her stress at being hoisted). However, they also treated her like she 'wasn't all there' due to her speech issue and ignored her pleas that she was uncomfortable. She was put on a syringe driver and we thought 'this is it'- she dipped in and out of consciousness from the morphine for a week. They finally lowered the dosage and she was back with us and said she wanted to go back to the Nursing Home. So, I packed up the room again and moved her back (luckily her room was still available). The Nursing Home (thankfully) finally listened to us- they kept the syringe driver in and kept the catheter in. But, Gran had not eaten anything or drank much for 3 weeks at this point- her swallow was all but gone and she'd only said she was interested in the PEG when it was too late for her to have it (we'd pushed for months to tell her to think of the future, not the now, but she'd outright refused). I monitored her urine output (sorry to be a little graphic here) and saw that it hadn't been a normal colour since she'd had it inserted and there was barely anything in the bag. I knew we didn't have long left. But I was so tired, at this point. She'd had enough of having to write things down and constantly struggle to get comfortable (I'm sure most of you get the struggle of having the pillows exactly right!) We were each others' closest ally and we had only each other to let our frustration out on- she'd snap at me (wordlessly, of course) and I'd rush to get things done for her so I could stop watching her suffer. The final night I saw her, I left earlier than normal. Just before I left, she wrote 'I'm lonely' (she could no longer see her TV- her eyes seemed to blur a lot toward the end) and she'd just lie in her room, doing nothing, when nobody was there. I couldn't watch it anymore and I couldn't think of any way to alleviate this part of the suffering. I will never forgive myself for leaving early that day, but what's done is done.
The following day, it was 3:40pm and the Home phoned to say Gran's breathing had become strained. I have never driven so dangerously to get somewhere so fast (I remember holding back tears whilst driving, saying out loud 'please don't die' over and over again). The Home was only 10 minutes away, but I was too late. She'd died 5 minutes before I got there (thankfully, she wasn't alone- her sister, brother and Mother (yes, Mother, at 102 years old!) were with her and I'm told it was extremely peaceful. Thinking on it, it was the only peaceful part of her whole MND experience.
These are just the 'main' memories that I am sharing with you, to take you through the journey we went on together. There were many arguments, tears, things going wrong and some laughs along the way. I really just wanted to 'get this out there'. I think Gran's story is one of the more traumatic (not helped by her horrendously stubborn nature!
) - we didn't have much support and we weren't given a lot of information- most of it I learned from all of you on this forum, so thank you!I want to tell you all that you are absolute warriors- you are the strongest of humanity and I will never forget the MND journey (as much as I might want to, sometimes!)
Thank you all for taking the time to read this and I'm incredibly apologetic at the length of my post- everything just spilled out all at once.
Love to you all and thank you again for being the only ones who were there for me during my darkest days as an MND Carer. You have no idea how many times you saved me from the brink of destruction xxxx
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