As human beings, grief is how we respond to a significant loss in our lives. It is a deeply painful experience to go through, and the agonizing feelings grief rouses in us are often felt much more profoundly during seasons that bring heightened emotions to the surface, such as Christmas, a season that is supposed to bring family and loved ones together.
But you do not have to suffer alone. With it being Grief Awareness Week, we want to discuss the complex role that grief plays in Dementia caregiving and the emotional journey we embark on when coming to terms with gradually losing the pieces of a person we love.
Riding the First Wave – Diagnosis
When a loved one is diagnosed with a Dementia, accepting what this means for the future and adjusting to the drastic changes a diagnosis like this brings, like any traumatic news, is a process. It is natural to become overwhelmed, experience surges of despair, and feel intense anger at how unfair things are. These are all completely reasonable feelings to have and we want to normalise talking about them.
There are two key themes of grief connected to Dementia that people experience: anticipatory and ambiguous. It’s important that we recognise these grieving symptoms in ourselves and those around us when they arise. Identifying what we are feeling is the only way to understand how to cope with them.
Anticipatory Grief & Dementia
Anticipatory grief is experiencing grief for losses that haven’t yet happened but we anticipate them happening in the future. After a Dementia diagnosis, both the person diagnosed and their loved ones are likely to experience feelings of dread. For example, many children of parents diagnosed with a Dementia dread their mum/dad not being able to recognise them as their daughter/son anymore and vice versa.
In addition, there is the fear of the unknown. Anxieties are fuelled by thoughts of what parts of us will be lost, and how quickly or severely this might happen.
Ambiguous Grief & Dementia
Dr. Pauline Boss pioneered the term ‘Ambiguous Loss.’ Ambiguous loss causes trauma and “frozen grief” or “grief limbo.” We experience ambiguous grief when someone we love is physically present but psychologically, parts of their former self are absent. For example, when the person living with a Dementia is physically here but no longer able to connect during conversations in the same way they used to before their diagnosis.
How to Live with Grief
Evolve Care Group’s Clinical Lead, Karen Tidy, movingly described the impact grief has on relatives and caregivers. She told me a story about the wife of a family member who is supported to live with their Dementia in one of our homes. Recently, the effects of her husband living in a care home had taken its toll. “Although her husband is still physically here, the grief caused by his Dementia and the loss of her role as his wife, carer, and friend is massive.” This supports what Dr. Boss writes about ambiguous grief feeling like an ongoing trauma because there is no answer. As human beings we need closure, so it makes our grief confusing.
While supporting our family members will always be our team’s priority, we want to support their loved one’s needs too. “We underestimate the effects separation has on relatives from their family members”, Karen continues. “And how the effects of loss of control and feelings of guilt have on those who love them most.”
From experience, Karen was able to recognise the symptoms the grieving wife was expressing and knew how to support her. “A little time and compassion from the team can make a whole difference. If they feel listened to, supported, and embraced within the new home where their loved one resides, then it may just ease the grief, enable them to mend, and give them a sense of belonging, home, and love, rather than the intense feeling of separation.”
When your loved one moves into Thistle Court Care Home, you become a part of our family just as much as they do. Thistle’s inclusive culture has created a community that gives everyone who is part of it a place to come and be supported.
You Are Not Alone
Everyone’s story is different, but the emotions we feel are mirrored in many. It’s easy to feel like you are completely alone in your grief journey when constantly having to make brave decisions for someone you love and miss. It can feel like a never-ending cycle of loss. Even if you feel they are irrational or unjustified, your feelings are valid and help is out there. There are people ready to listen and support you to come to terms with what you are experiencing. As well as speaking with our team, we have provided other resources below that offer support for Dementia grief.
Dementia UK: Call 0800 888 66 78 or email direct@dementiauk.org
Support line: https://www.alzheimers.org.uk/dementia-connect-support-line
Written by Evolve Care Group Writer, Beth Tingle.