Hello
Some members of this site might remember me having swapped advice and support in recent years. After six years of caring for mum she died in February 2021. I lost the person I most loved, the full time caring role and COVID restrictions meant I remained all alone. I got to a very dark place and stopped coming to this site. Relieved my caring role was over, mum could no longer be hurt by Dementia, I had managed to keep her out of a care home, etc. But on the other hand racked with guilt, terrible memories of mum’s final two days on Earth given inadequate palliative care in a hospital torn a part by record COVID cases. No one to blame but I think that experience and others on the caring journey left me with some type of PTSD.
Any way in recent months I have become a lurker reading this particular part of the forum. It seems to me ex carers get forgotten and are largely left on their own. In two weeks time I will visit the local crematorium gardens and see the entry in the book of remembrance. A year on in my worse moments I still feel like I did the night I came home from the hospital after mum died. I want to try and tell a fictional narrative of a speeded up caring journey. It is not altogether my own story as I have tried to incorporate points mentioned by others. I just think it might help to give a mental image to others, to hold onto, when words fail to describe what they feel. Here goes.
You put your loved one in the car after receiving a Dementia diagnosis at the Memory Clinic. You have a few leaflets on the back seat, but already you sense a closing in feeling of being isolated and on your own. You join in the traffic and the world looks the same, but it feels different. Other cars have happy smiling families, young couples, etc, normal humanity. Driving along a traffic Police man stops you and directs you down a side road called Long Journey Avenue. His badge cap identified him as PC Fate. You notice once you have turned down it he allows the rest of the traffic to proceed on the other road.
The road you are now on goes down hill at an increasing rate. There are side roads off it. Despair Close, Lost Friends Avenue, Sacrifice Road, Family Appreciates From A Far Drive, etc. Soon you are in the countryside, no street lights, fog starts to develop and thickens, still the road goes downhill. The fog forces you to slow down, focus on just the task in hand, you have lost all sense of contact with the outside world. Crawling along you realise the road has flattened out and a brick wall appears across the road. You get out and to left and right and above you can see no edge to the wall. You turn and find your loved one standing by you. During the journey they became increasingly silent, now even the eyes are blank. Before you can do anything else they walk through the wall. You try to follow but to you it is solid. Not your time yet.
Instinctively you feel desolate, sad, lonely, isolated and grief stricken. Your caring journey is over but you are physically and mentally isolated. From here on the road to recovery varies. You have to get back up the hill and rejoin society. For some the journey is relatively easy. Get into the car turn around and drive back the way you came. For others they find the only gear working in the car is reverse. A slow drive backwards in thick fog makes the journey all the harder. For others the car just will not work. A long foot slog up hill all the way with the fog whirling around. Some moments you can see clearly then the fog closes in again. A slow journey indeed. Lastly a few cannot immediately start any journey. They feel compelled to stay by the wall, trying to get through, calling out the name of a loved one. After much time they to start whatever journey they can back up the hill.
Reading this only you can decide how much it relates to you. For me six years of caring crammed into a few paragraphs. I am definitely one who stayed at the wall stunned by what had happened. My car refused to start and I am on foot. The fog partially clears some days but thickens on others. Two things keep me going. Firstly the journey was hard, very hard in places. But it was worth while. I learnt a lot about myself, life, society, what matters and what is valueless. Secondly I know my mum would want me to climb that hill. A few days before she died I had helped her to bed, applied various creams and medications and sat in a chair by her bedside exhausted. Mum touched my hand and said “I want you to know I love you and really appreciate everything you do for me”. The fog of Dementia briefly parted and mum gave me a really powerful message. It made six years of caring totally worthwhile. Oh mum I still love you so much it hurts.
I hope the above helps. Ex carers are all in that fog to varying degrees. Even when you get to the top of the hill we will never fully fit back into ”civilised society”;because we have seen and done things it never will. We will never fully “get over it” or “move on” despite what others say. We all recover at varying speeds. But we all stay partly in the fog for ever and some days it thickens. Best way I can describe the journey of ex carers. We are a club whose members would rather not wish to be in, but fate dealt us that card. On a bad day remember it is okay to feel bad in the fog. It is disorientating, deeply unpleasant, gut wrenching at times. But that is the price we pay because we did care.
Some members of this site might remember me having swapped advice and support in recent years. After six years of caring for mum she died in February 2021. I lost the person I most loved, the full time caring role and COVID restrictions meant I remained all alone. I got to a very dark place and stopped coming to this site. Relieved my caring role was over, mum could no longer be hurt by Dementia, I had managed to keep her out of a care home, etc. But on the other hand racked with guilt, terrible memories of mum’s final two days on Earth given inadequate palliative care in a hospital torn a part by record COVID cases. No one to blame but I think that experience and others on the caring journey left me with some type of PTSD.
Any way in recent months I have become a lurker reading this particular part of the forum. It seems to me ex carers get forgotten and are largely left on their own. In two weeks time I will visit the local crematorium gardens and see the entry in the book of remembrance. A year on in my worse moments I still feel like I did the night I came home from the hospital after mum died. I want to try and tell a fictional narrative of a speeded up caring journey. It is not altogether my own story as I have tried to incorporate points mentioned by others. I just think it might help to give a mental image to others, to hold onto, when words fail to describe what they feel. Here goes.
You put your loved one in the car after receiving a Dementia diagnosis at the Memory Clinic. You have a few leaflets on the back seat, but already you sense a closing in feeling of being isolated and on your own. You join in the traffic and the world looks the same, but it feels different. Other cars have happy smiling families, young couples, etc, normal humanity. Driving along a traffic Police man stops you and directs you down a side road called Long Journey Avenue. His badge cap identified him as PC Fate. You notice once you have turned down it he allows the rest of the traffic to proceed on the other road.
The road you are now on goes down hill at an increasing rate. There are side roads off it. Despair Close, Lost Friends Avenue, Sacrifice Road, Family Appreciates From A Far Drive, etc. Soon you are in the countryside, no street lights, fog starts to develop and thickens, still the road goes downhill. The fog forces you to slow down, focus on just the task in hand, you have lost all sense of contact with the outside world. Crawling along you realise the road has flattened out and a brick wall appears across the road. You get out and to left and right and above you can see no edge to the wall. You turn and find your loved one standing by you. During the journey they became increasingly silent, now even the eyes are blank. Before you can do anything else they walk through the wall. You try to follow but to you it is solid. Not your time yet.
Instinctively you feel desolate, sad, lonely, isolated and grief stricken. Your caring journey is over but you are physically and mentally isolated. From here on the road to recovery varies. You have to get back up the hill and rejoin society. For some the journey is relatively easy. Get into the car turn around and drive back the way you came. For others they find the only gear working in the car is reverse. A slow drive backwards in thick fog makes the journey all the harder. For others the car just will not work. A long foot slog up hill all the way with the fog whirling around. Some moments you can see clearly then the fog closes in again. A slow journey indeed. Lastly a few cannot immediately start any journey. They feel compelled to stay by the wall, trying to get through, calling out the name of a loved one. After much time they to start whatever journey they can back up the hill.
Reading this only you can decide how much it relates to you. For me six years of caring crammed into a few paragraphs. I am definitely one who stayed at the wall stunned by what had happened. My car refused to start and I am on foot. The fog partially clears some days but thickens on others. Two things keep me going. Firstly the journey was hard, very hard in places. But it was worth while. I learnt a lot about myself, life, society, what matters and what is valueless. Secondly I know my mum would want me to climb that hill. A few days before she died I had helped her to bed, applied various creams and medications and sat in a chair by her bedside exhausted. Mum touched my hand and said “I want you to know I love you and really appreciate everything you do for me”. The fog of Dementia briefly parted and mum gave me a really powerful message. It made six years of caring totally worthwhile. Oh mum I still love you so much it hurts.
I hope the above helps. Ex carers are all in that fog to varying degrees. Even when you get to the top of the hill we will never fully fit back into ”civilised society”;because we have seen and done things it never will. We will never fully “get over it” or “move on” despite what others say. We all recover at varying speeds. But we all stay partly in the fog for ever and some days it thickens. Best way I can describe the journey of ex carers. We are a club whose members would rather not wish to be in, but fate dealt us that card. On a bad day remember it is okay to feel bad in the fog. It is disorientating, deeply unpleasant, gut wrenching at times. But that is the price we pay because we did care.
Last edited: