I’m losing this wonderful man whom I’ve loved and lived with in harmony with for 60 years. Hardest of all, I cannot talk with him about it, when once we talked about everything and could make it right together. This time I’m alone.
Freya’s* heartbreaking description of the haze that dementia was drawing between her husband and her lingered with me long after our conversations. A fiercely independent and capable woman in her 80s, she was relishing retirement years with her husband after successful professional lives and raising children together.
Now, Freya was struggling to understand the debilitating effects of dementia. She was aware that the progression of this illness only moved in one direction and that it was erasing the ways in which she and her husband had been deeply connected. She mourned the loss of their intellectual conversations about politics and world affairs, their shared memories of travelling and living abroad, their conversations in different languages and their joy in hosting visitors and family.
Alongside her grief there were also many practical challenges to navigate.
Freya was balancing the responsibility of caring for both herself and her husband, as he was no longer able to do the things he had always done, like house and garden repairs, keeping on top of bills and insurance matters. The saddest part of it all was that she had to learn to fix her favourite drink herself.
For anyone who has experienced similar tragedy, some of the solutions may appear straightforward – recruiting other family members to help out, or paying for some extra practical help. The emotional ones were much harder. He used to console her when she worried about their adult daughters, reassure her when she felt overwhelmed or like she had let someone down. Freya felt things deeply and she was losing her source of comfort and solace.
Other losses were especially hard. How to respond to his distress when he recognised that he had forgotten something or realised halfway through a task he couldn’t remember what to do next? Not wanting to show her distress, she was “masking” it in front of him. But this only left her feeling even more isolated and anxious.
Wondering how best to support Freya and help her navigate her dilemmas, I turned to psychological research.
The literature is sobering, a rather grim set of data presented in an impersonal tone with little feel for the distress and pain of a person and her husband. Here’s a condensed example:
Dementia is a group of conditions that impact memory, thinking, and social skills. Symptoms include impeded routine functioning and reflect a drastic decline in mental capability. Early diagnosis may help slow the speed at which the condition progresses, but there is no cure for dementia. Treatment and medication may help reduce the intensity of symptoms, but their effect is usually minor.
Many articles highlight the numerous hurdles faced by carers of individuals with dementia – how to care for yourself while continuing to care for the partner, make space to grieve while remaining connected to the partnership, and maintain other interests and social relationships.
Instead, Freya showed the way herself. While validating and acknowledging the very real losses and difficulties that came with caring for her husband with dementia, in our conversations she focused on holding on to the positive memories and moments of joy from their life together. She resolved to find other moments of joy, even as the dementia sapped her husband’s essence.
A two-sided take
We experimented with a two-sided take on this. At times of reflection, I encouraged Freya to acknowledge any and all of the negative feelings she was experiencing, such as rage at the unfairness of it all, guilt that she was able to continue to do things alone that they had previously enjoyed together, and frustration at his slowness and confusion. With people to whom she was close, she was able to share these feelings and receive their reassurance and understanding.
Freya was comforted by the writings of the actor Richard E Grant, who recently published a book called A Pocketful of Happiness, capturing the wish from his wife that he try to find such a thing every day after her death from cancer. The other side, then, was to search for the small pockets of contentment, joy, calm and perhaps a sense of connection. Holding and allowing both of the two sides has been an important coping strategy for Freya.
Freya also leaned into asking for help from her daughters and extended family. This was hard for her, as she and her husband were more often the ones who stepped in when a friend or family member needed support. Using the two-sides metaphor again, I encouraged Freya to think of this time as balancing the acts of asking and receiving. Together, we identified a list of all the practical ways people could help, in particular keeping her husband company so she was able to have time out of their home and do some “pockets of joy” things without worrying about how he was in her absence.
Freya’s bravery in opening up about her experiences helped ease some of the strain and burden of caring for her husband. She shared her two-sided take on things as they were and this allowed her loved ones to understand how they could best support her, by initiating conversations about the tough parts and sharing positive memories and including her in current opportunities for joy.
Freya’s story is a heart-wrenching reminder of the harsh impact dementia has on a relationship. It’s not just the physical and practical challenges carers face but the emotional toll that can weigh heavily on their hearts. As Freya shared with me, the loss of her husband’s ability to communicate and connect with her, as well as their shared experiences, is one of the hardest aspects of this illness.
Despite these difficulties and with the support of her loved ones, she is working to find ways to hold on to the positive memories and moments of joy that they shared. Her two-sided approach to coping with the losses and difficulties, by acknowledging the negatives while also searching for pockets of happiness, is a testament to her strength and resilience.
*Name has been changed to protect privacy
• Gaynor Parkin is a clinical psychologist and founder of Umbrella Wellbeing. Erika Clarry is a research assistant at Umbrella
