Given what I know of the UK system via other carers on online forums, I am totally amazed at how you've done most, if not all, of this on your own - AND with long Covid!, especially the bureaucracy. NHS Continuing Care, social care, rehab availabilities, together with the maze of funding and paperwork, sometimes looks like trying to grab a stream of water to me!
I've shared the Discharge to Assess Model so many times I've lost count - it's not common knowledge.
I really feel for you, and I know there are volumes and volumes of time, energy and emotional rollercoastering between these lines. FYI Carers UK have trained experts on their helpline and have teamed up to offer free social care, legal advice. I'm sure you've identified your own key contacts now.
Sending over some warm hugs, and sitting alongside for a while with my big mug of tea and some custard creams xoxo
Thanks for the hugs. Thankfully I’m pretty good at form filling but there have been many times when sorting stuff out for my husband has been like a part-time job. The NHS Continuing Care is the worst and I have hired a solicitor for that as the whole things just makes me glaze over. It all takes so long to sort out. It rumbles slowly onwards! Most other things are settled now which is a relief.
My father, a gentle man, at times had terrible aggression and irritability with his brain injury... these things truly are tragic. Wishing you love as you both heal in your own journeys.
Thank you for sharing this story with us here on Substack. I know it must have been painful and scary to write out and share but I hope there was also something meaningful and cathartic through the process of sharing. I’m so sorry that this happened to Graham and to you and to the life that you shared. Sending you love and care.
What a strange and tragic thing to happen. Life is so uncertain. None of us can be prepared for the suffering and pain of this life. What a beautiful way you are going about sharing your struggles and courage. Every brave story I read like yours, makes me determined to continue being strong because there are people like you who decided it’s possible.
You are constantly in my thoughts and prayers. Despite these challenges you have continued to be supportive to those who others. As they say in Buddhism, this is a ‘treasure of the heart’ that you are rich in. It will work for you when you need it. Lots of love
🩷 Hi Cali, Thank you for sharing your and Graham's story. It's not easy, I know. You mentioned the two Christmases since his fall and how incredibly hard they were. Today is Valentine's Day—the fourth on my own. It was another one of those painful days. Hang in there; this is not an easy path.
It takes so much bravery to write about your own struggles, your loss, and your husband. Thank you for being candid about your grief and about your situation. When I was a teenager, I "lost" my brother to mental illness and watched him struggle for years. He still struggles to this day. It is so incredibly difficult to put into words the feelings felt when you witness a loved suffer with their physical & mental health. But you did that, and by doing so I hope it helps you. And I hope it helps others. And I'm truly, genuinely sending you so much love ❤️ !
Thank you for your love. I’m sorry that you have experienced pain as you have witnessed your brother’s struggles. But how wonderful that he has you as his support. Thank you for your encouragement about me writing this. It felt like something that I needed to do, even though it isn’t the most pleasant thing to read.
Darling Lola. Thank you. Yes, the gohonzon is firmly in the middle of my life. I met up with a member last night that I hadn't seen in years and she said I looked radiant. I replied that this was the power of Nam Myoho Renge Kyo. Thank you for your continued support xxx
What a heart breaking story! I am so sorry to hear about the struggles you've been through. Thank you for sharing so vulnerably.
Given what I know of the UK system via other carers on online forums, I am totally amazed at how you've done most, if not all, of this on your own - AND with long Covid!, especially the bureaucracy. NHS Continuing Care, social care, rehab availabilities, together with the maze of funding and paperwork, sometimes looks like trying to grab a stream of water to me!
I've shared the Discharge to Assess Model so many times I've lost count - it's not common knowledge.
I really feel for you, and I know there are volumes and volumes of time, energy and emotional rollercoastering between these lines. FYI Carers UK have trained experts on their helpline and have teamed up to offer free social care, legal advice. I'm sure you've identified your own key contacts now.
Sending over some warm hugs, and sitting alongside for a while with my big mug of tea and some custard creams xoxo
Thanks for the hugs. Thankfully I’m pretty good at form filling but there have been many times when sorting stuff out for my husband has been like a part-time job. The NHS Continuing Care is the worst and I have hired a solicitor for that as the whole things just makes me glaze over. It all takes so long to sort out. It rumbles slowly onwards! Most other things are settled now which is a relief.
Phew!!!
I don't think I understood the extent of your experience in this. My heart is sad.
I am glad you wrote this, to share your grief with us all to carry.
My father, a gentle man, at times had terrible aggression and irritability with his brain injury... these things truly are tragic. Wishing you love as you both heal in your own journeys.
Thank you. And I’m sorry that you too have had to witness the effect of a brain injury. Lots of love ❤
Thank you for sharing this story with us here on Substack. I know it must have been painful and scary to write out and share but I hope there was also something meaningful and cathartic through the process of sharing. I’m so sorry that this happened to Graham and to you and to the life that you shared. Sending you love and care.
Thank you for your love. Yes, it has been cathartic. In time I will write a memoir about this, but we’re still very much “in it” at the moment!
What a strange and tragic thing to happen. Life is so uncertain. None of us can be prepared for the suffering and pain of this life. What a beautiful way you are going about sharing your struggles and courage. Every brave story I read like yours, makes me determined to continue being strong because there are people like you who decided it’s possible.
You are constantly in my thoughts and prayers. Despite these challenges you have continued to be supportive to those who others. As they say in Buddhism, this is a ‘treasure of the heart’ that you are rich in. It will work for you when you need it. Lots of love
Thank you 💕
🩷 Hi Cali, Thank you for sharing your and Graham's story. It's not easy, I know. You mentioned the two Christmases since his fall and how incredibly hard they were. Today is Valentine's Day—the fourth on my own. It was another one of those painful days. Hang in there; this is not an easy path.
Ah bless you Janet. It's after Valentine's now but here is a huge hug from me xx
Wow. Cali. What a story. It breaks my heart. Sending so much love and courage. It’s incredible how so much can change in an instant. ❤️ Hal
Thank you ❤
Wow.
It takes so much bravery to write about your own struggles, your loss, and your husband. Thank you for being candid about your grief and about your situation. When I was a teenager, I "lost" my brother to mental illness and watched him struggle for years. He still struggles to this day. It is so incredibly difficult to put into words the feelings felt when you witness a loved suffer with their physical & mental health. But you did that, and by doing so I hope it helps you. And I hope it helps others. And I'm truly, genuinely sending you so much love ❤️ !
Thank you for your love. I’m sorry that you have experienced pain as you have witnessed your brother’s struggles. But how wonderful that he has you as his support. Thank you for your encouragement about me writing this. It felt like something that I needed to do, even though it isn’t the most pleasant thing to read.
Darling Lola. Thank you. Yes, the gohonzon is firmly in the middle of my life. I met up with a member last night that I hadn't seen in years and she said I looked radiant. I replied that this was the power of Nam Myoho Renge Kyo. Thank you for your continued support xxx