From spouse to carer

When Kay, whose husband Richard is living with dementia, began to develop a deeper connection with a long-time friend, she faced a dilemma. Read Kay’s story, in her own words below.

She grieved deeply for the man who challenged her to experience life differently through kindness and openness to the moment. She grieved for their marriage - once full of interesting conversation, deep eye-watering laughter at curiously unusual concepts, delighting in shared adventures with friends and family and much more.

Dementia didn’t just wipe out Richard’s memory. It wasn’t that simple. He could still converse, but it was superficial and highly repetitive. He sometimes tried to help – like the time he got the clothes out of the dryer and spread them carefully out on her bed to finish drying off (not realising he had actually removed them from the washing machine, and they hadn’t been washed yet, and they were still very muddy from that day’s heavy garden work).

Something like this happened every day; hours of re-doing, cleaning, or looking for valuables he had carefully (but forgetfully) put out of sight. She attended all of his appointments with him, as well as managing his accommodation, transport, health, travel, personal care, social connections, finances, scheduling – everything. Now their relationship was full of reminders, prompts, repetitive questions, uncharacteristic swearing, unusual vocalisations, loud whistles, the news channel, difficult-to-manage-quirks, social clumsiness and his continual need for supervision.

When an invitation came to visit friends or family, her immediate thought was, “how much mischief could he get up to there?”, then mentally projecting a balance between the benefit-for-all of the visit against the inevitable exhaustion that goes with the hyperviligance-associated-with-Richard’s-dementia-driven-quirks.Visits and invitations from friends and family had mostly dropped away, providing another unforeseen situation; social isolation.

She gradually accepted that the marriage was no longer a partnership to which they both contributed; it had become purely a care-style arrangement. It was clear that love – in a pure form –was still there. Through dementia, he was challenging her to experience the deeper aspects of life more fully.

The Groundhog Day style existence gave her opportunities to practice better responses each time some interaction was repeated. She learned to see and acknowledge deeper intent and developed a mindset that “everyone does their best, given their level of maturity”, which enabled her to be gentler on him, on others and on herself.

She was incredibly grateful to have made a gradual shift towards bringing her fulfillment to every situation and was now able to see beauty wherever she happened to be; he reaped a benefit through experiencing the positive impact of progressive changes in her.

But another part of her was aware that the ever-repeating daily reality was an early sign of stagnation. Around this time, someone she had known almost all of her life, with whom she had platonically shared many of life’s depths and joys, became more present in her life; Adam. They had been friends in kindergarten, attended each other’s weddings, and had kept in touch all these years.

His father had recently died, and Adam needed emotional support. It wasn’t until she spoke with Adam in his raw grief for his father that she realised how much she missed emotional intimacy. During this time, Kay and Adam realised there was potential for a deeper relationship, but both agreed it could not even be considered until well into the future as she was married to, and deeply loved Richard. She wanted to be involved in Richard’s care for the rest of his days – supporting him to have a good life at home, and not have to go to a nursing home.

Adam said he would wait for however long she needed. “It could be 5,10 or even more years away”, she said, “and even then it might not work out; go and enjoy yourself and we can revisit the idea down the track”.Kay wondered how Richard saw their marriage, and asked him, “how long does it feel to you since we made love? ”She knew it had been several years ago, and was surprised to hear Richard say, “ooooh, it was just last week, wasn’t it?”. Then she tested a few more of Richard’s perceptions.

Kay: “When did we last do a beach walk?” Richard: “This morning” (it had been 6-months)

Kay: “When did we get back from Canada?” Richard: “a week or 2 ago” (it had been 8-months)

Kay: “How long have I been away?” Richard: “5 or 10 minutes” (it had been 3-days)

Richard’s recollection was that she was away for only short periods, even though it was longer. Then an unusual idea emerged; Kay wondered if she could continue to express her love, support and care for Richard while (perhaps) exploring a closer relationship with Adam. The way she interacted with Richard would not change; she was willing to continue to be perceived by Richard as his “wife” in order to support his contentment.

They could try a reduction in the amount of time they spent together, which was already being planned, as her own wellbeing (and capacity to care for Richard over the long term) depended on her having less time in the direct-caring role. But something still felt very wrong.

It was highly foreseeable that Richard’s daughters might feel betrayed if they found out –in the years to come -that all this time she was exploring a relationship with Adam while appearing to be “Richard’s wife”. She had grown to love Richard’s daughters and realised that if there was any chance of continuing an authentic relationship with them over the coming years, it was essential that she be transparent with them. Kay needed to let them know that this was her intention before exploring a relationship with Adam. So she wrote to them.

As their replies came in, one by one, she wept. Understanding and support were expressed to a degree that was beyond anything she had hoped. “You have all our support and our full blessing; we want you to be happy; we can only imagine how hard that was to write and applaud you for your honesty and openness” she read, feeling the lightness that comes with relief. They understood her, “we know that you are doing your very best to make sure Dad is happy and well... thank you, you are truly appreciated”. The seeds of hope and new possibility started to grow. Kay would continue to love and support Richard while openly exploring an emotionally intimate relationship with Adam.

We thank Kay for sharing her story. If you are a carer for a loved one with dementia, we are here to help. Call us any time on 1800 100 500.