Dear
@MowgliGirl02
I read your words and I just could not walk on by without replying. I cared for my mum through nearly seven years of Dementia, before she died in 2021 in distressing circumstances during the second COVID lockdown. What I am about to say is aimed at your best interests, it is a kindly warning based on my own experience.
At the end of my caring role I was reduced to holding my mum up to help her breath, praying for the ambulance to arrive. In her confused state I was her dad and I pretended to be him, using his affectionate nick name for my mum. That was my last “meaningful” action as a carer. It really hurt lying to my mum who had always taught me to tell the truth. Totally illogical as my white lie helped her, but such is the baffling nature of strained emotions. She was taken into hospital where I sat with her alone in a side room, fighting periodically to get her end of life treatment injection done every few hours. Eventually she was attached to a driver and died later the same day. No criticism of hospital staff who were exhausted by covid. Mum deserved a better death but those were the cards dealt. I am not seeking sympathy or anything else, the events were grim and still haunt me. The point is despite seven years of mounting care demands, the horrors of her last few days, my best efforts to help her, following her death I still experienced intense carer guilt.
Please read the following points with an open mind and possibly your healing can start in a small way.
1) I have come to believe the carers guilt is some type of built in reaction to the death of a loved one, particularly after a lengthy period of demanding direct care. Carers form a unique bond with those they care for, they become a team, even in Dementia care. The caring role becomes the life purpose of the carer. When one dies the immediate reaction is guilt I am still here and they are gone. That in turn gets reinforced by the start of the what ifs, maybes, if onlys, etc, all defying a logical study of the facts. As the GP said “so let me get this right you gave up work to care for your mum, lost your social life and friends, embarked on 12 months of social isolation to protect her from COVID, yet you blame yourself in some way for her death.” It makes no sense but nearly all carers experience it to some degree. It needs some research to understand why this happens but that will be another day and no use to current carers.
2) Grief is the price we pay for loving someone dearly and then they have died. That pain is bad enough, please do not compound it with misplaced feelings of guilt. Emotions do not do logic very well but try doing this exercise as it might help. You could list out everything you did for your mum, but such a positive list might not work on illogical guilt feelings. So tackle the guilt monster head on. List out in writing all the things you did (or perceive you did) wrong whilst caring for your mum. I suggest it will be quite a short list, nothing of any real consequence. The reason why is because you did your very best for your lovely mum. Any mistakes you did make set into context. We are thrown into Dementia care, there are no training courses, guidance manuals, ready made support mechanisms. Please be kinder to yourself. In reality that inner voice is the only critic you face. Time to tone it down and ask it to leave your life.
You have said it yourself your feelings of guilt is part of the grief process. I have experienced those feelings myself and as they are not logical they are hard to deal with. One way is to look at matters slightly differently. Who was your mums best friend? Who cared for her when things really got tough? Who stayed the course when your mum really needed help? If your mum could speak to you now would her words be ones of criticism or thanks for all that you did and the love you showed? I think deep down in your heart you know what words she would use and who filled those roles in her years of need. I gently and respectfully suggest you now need to show yourself some of the love, empathy and patience that you showed to your mum.
Finally you ask will the hell of grief ever pass. That is a hard question to answer without sounding glib but I will try. Over three years after mum’s death I am over the intense phase of grief you are currently experiencing. Sometimes a memory, a piece of music, a saying, etc, can fling me back to the intensity of my grief driving home from the hospital the night mum died. However my resilience has gradually increased, I now respect what I did for mum, I volunteer with a local Dementia care group, I treat each day as a bonus in this incredible world to be valued. I now hear the bird song, feel the warmth of the sun, see wonder in the eyes of small children for what we adults treat as the mundane. The caring role can be very demanding, it changes us forever not in always good ways. We lose it the same moment our loved one dies. We feel awful and are given extra time to do so.
Grief is the price we pay for loving deeply. We lose someone who was important in so many aspects of life. That is going to create very unpleasant and illogical emotions. It is the human condition. I cared for mum for years when she no longer had the capacity to deal with life. As my sister said I was her rock. But when she died I felt as if I had lost my own rock, source of strength, etc. In reality that mum had left me several years before physical death. Emotions do not do logic very well. They need talking to at times, sometimes with a firm voice.
Please accept your grief will ease but it will never fully leave you. One final point which might help. I try each day to think of a few things I am grateful for. Birdsong, varied weather, food, the sense of meeting the unknown round the corner whether good or bad, friendships, a world of colours and diverse life, etc. life moves on despite our grief. After a mourning period we need to slowly reconnect to it. Some parts hold no ongoing interest after the caring role. That reflects the fact that role changed us. You need to slowly appreciate what does interest you now. AND DO NOT FEEL ANY GUILT about doing so. You have a right to a future, your mum would want that more than anyone. Please accept that as grief reduces you do not forget your loved one, but instead get a more balanced view. Your memories most likely are all Dementia ones presently like my own were. Now I sometimes remember funny things mum did or said and I can burst out laughing. I would not have believed that three years ago. Give yourself time to heal.
Hope you are still reading and my words have helped. My very best wishes to you. I just could not stay a lurker on this site and disregard your pain. One of the promises I made to myself whilst rebuilding my life. Whether it is helping run a Dominos game at the local carers group, or making a few posts here that might help I will try to do my best as I did in the caring role. Please be gentle with yourself. Think on your caring role. How many would have gone the distance. You did well.
