Grieving Is Good….Guilt is Bad

by Jacquie Pond

“Grieving Is Good” may seem an odd start to a piece about the pain and heartache people experience after a partner, family member or friend dies.  I am a Wayfinder at Sage House and one of the most common emotions my customers talk to me about after someone close has died is feeling guilty, but often guilt has been part of a families dementia journey for longer than they realise.

The dictionary definition of guilt is “The fact of having committed a specified offence or crime “.  However, for our carers they are kind, compassionate, loving people who at times feel guilt for not being able to do enough for their loved one.  Caring for a person with dementia is one of the toughest acts one person can do for another, it’s mentally and physically draining……this is not an offence.

One day, one hour, one evening, one night can be very different to the next for a person living with dementia and certainly their carer experiences the same……. definitely never a crime.

“I made the wrong decision”

So why do people feel guilty after a person has died? It is very often because they think if they had done something different for their loved one they could have changed the outcome, it’s what I would say is the “shoulda, woulda, coulda “ syndrome.  The brutal fact is that it is rarely the case, dementia is a complex brain disease and the family and friends are often caught behind the curve of how the person living with dementia will progress with the illness and at what pace.

I speak regularly with a lady whose husband has recently died after a number of years living with dementia. The gentlemen lived at home with his wife prior to lockdown receiving the best of care from his wife plus regular visits from professional carers and the gentlemen joined us at Sage House for our Daybreaks. At the point of lockdown there was uncertainty if professional home carers would be able to maintain continuity with their service.  Dementia Support also took the difficult decision to close Sage House as part of government Covid-19 rules.  So, his wife took the hardest decision she will ever make to keep her husband safe by carefully choosing a care home that could take care of him medically, mentally and physically during the lockdown period. Sadly the gentlemen died in hospital with complex health issues, there is no suggestion that his health decline would not of happened if he hadn’t been living in a care home for the last 7 months but his grieving widow is locked in a punishing guilt battle with herself convinced she “made the wrong decision” and her lovely husband would be alive today had she not done so.

“I Didn’t Say Or Do Enough”

Another scenario that is steeped in guilt is the story of a widow and her daughter. The daughter was her primary carer, the lady had been diagnosed with dementia and was living at home with care from her daughter and professional carers. The lady took a very big dip in her general health and declined very fast in the last 5 months of her life, resulting in three short stays in hospital with bladder issues and finally a long stay in hospital where she eventually died from pneumonia.  At the time the daughter had real concerns about the treatment her mother was receiving in hospital, in a two week period she had been moved to 4 different wards and on each occasion her medical notes did not go with her so the medical team were not aware of her level of dementia, the daughter attempted to communicate with the ward staff about her mum’s dementia and what she liked and would respond well to.  She even made an official complaint about her mum’s treatment at the hospital but sadly after 4 weeks her mother died in hospital.

The daughter fought hard for her mum and spent every day by her mum’s side trying to deal with the frustration that she felt that no one on her mum’s ward was listening to her, and although the daughter was under no illusions that her mum was close to death the outcome could have been so different in terms of a peaceful passing with love and not the distressed and fearful passing that her mum experienced. The daughter felt guilty and angry that she should have done more to protect her mum, that she didn’t fight hard enough or was verbal enough, her guilt and continual self-blame stopped her from seeing the reality that she had done the very best for her mum and the actions taken were more than enough, it was the inaction by the hospital that was the issue.

“I’m a Terrible Person”

We all get that feeling at times we are not perfect, however that caring role can create guilt for people looking after their loved ones living with dementia.  For one carer who I have been a Wayfinder for since May 2018 his feelings of guilt have been evident throughout his wife’s dementia journey.  James and Penny had been married for over 50 years and had a strong loving family network, after Penny was diagnosed with dementia her husband immediately took on the role as her carer and protector. Penny was very anxious and only felt calm when she was being driven in the car. So, James drove Penny up to 100 miles a day to wherever she needed to be to feel happy, even on days when he was sleep deprived and exhausted from his caring role. Penny’s distress and anxiety exacerbated her dementia symptoms and her memory and cognitive ability declined which impacted on her speech. James confessed to me that he wasn’t always “patient” with Penny and he struggled to understand how she was feeling or what prompted her to always be on the move.  This would later manifest into guilt for not being caring and understanding, and yet, I could see the love this man had for his wife and doing his level best for her.

During lockdown Penny fell over at home and sustained a serious leg injury which culminated in a long recovery in hospital.  During this time James told me that he felt guilty that he was having a break from his caring role and had time to do some of the things he wanted to do for himself.  This reaction is something that Wayfinders experience all the time, the carers guilt of having time to themselves.  Penny became more ill and a decision was made that Penny needed end of life care, she passed away with her family around her.

Now, James tells me that he desperately misses Penny but as he has told me his overriding thoughts are that he is “a terrible person” because he didn’t turn around quickly enough to catch Penny when she fell over and that had he done so she would still be alive today.

Stop The Guilt…..Feel the Love

Guilt is an insidious predator and this kind of self- critical thinking is hugely damaging to the wellbeing of the bereaved. I always ask my customers to stop thinking about what they didn’t do or say and focus on all the things they did for their loved one, the list is endless and often leads to a conversation full of laughter and tears when we reminisce together positively about the person.

My advice as a Wayfinder and as someone that has had loss is don’t be so hard on yourself, regret and guilt are negative emotions and if they become out of control could lead to self -loathing and that will then completely road block the grieving  process that is essential to healing the inevitable pain……

I should know because I am the daughter that felt she didn’t say or do enough for her mum.

Part of the healing is talking and the Wayfinder team at Dementia Support is here to listen.  01243 888691

Please look out for part 2 of my guilt blog which will address carer guilt when family are in denial and when carers have to out their loved ones in a care home.