“He will always be my husband. It’s the disease that has taken so much away from me,” says Glynis Williams. “Richard,” she continues, “is still Richard.”
Glynis’s husband, Richard Williams – her beloved partner of thirty years – has Frontotemporal Dementia (FTD), and today he is in full-time care at Livewell, a specialised dementia care facility.
Before she explains, “we were a team, always doing things together, we had a strong solid marriage and partnership.” And she continues to live true to that closeness and unity, even though dementia has reduced his function, his memory, ability to communicate and has taken away their dreams of growing old together.
“It is a complicated space to be in, Glynis explains, “I am dealing with grief, aware of my loss of a partner while still loving him.”
A care journey
Before his diagnosis in 2017, Richard was a high achieving individual: group CEO, trail runner, and bird photography enthusiast. “He was always busy,” Glynnis says, “my DIY man, a gentle, kind and loving husband and father.”
When they received the dementia diagnosis, Richard and Glynis banded together, like they always have. “Our immediate reaction,” Glynis says, “was to focus on ‘Bucket List things’. And we did a bit of travelling to see family. We had to adjust to the changes and decline, but took the decision to be in the present, rather than worry about the future.”
By November 2017, Glynis had to be in the ‘driver seat’ both literally and figuratively, she says, as Richard was no longer capable of driving. He lost the ability to handle basic tasks like reading, switching on the TV, ordering a meal at a restaurant. “Richard’s dementia also began causing him to have seizures which escalated the decline.”
She and her adult daughters have had to educate themselves on this lesser-known type of dementia, while also coping with their loss, and providing care to Richard who soon could no longer be left alone.
Glynis cared for Richard at home for as long as she could, believing that no one could take care of her husband better than her, but she says they reached the point where “he didn’t recognise home as home anymore. I had to accept that he needed an environment that is all about his care, and guiding him through his day – rather than him trying to fit into our world.”
“That made him more content,” she says. “It was stressful for him to live in our world!”
A fundamental shift
There are many forms of dementia, and almost all of them are characterised by memory loss. Dementia patients can also experience considerable mood changes and personality shifts. As their symptoms progress, some patients can become quite unlike their old selves, and in advanced stages, they may struggle to speak or connect with the people around them. Even when personality changes are minimal, a person living with advanced dementia is often reliant on carers, and unable to live like they used to.
All of which contributes to a care challenge of immense difficulty for the partners of those living with dementia. Many spouses navigate a minefield of hurt and guilt in grieving the loss of a loved one who is, physically, still present, adjusting to a life they had not expected while mourning the loss of the life they had envisioned, just as Glynis describes.
Lessons learned, and shared
Love isn’t lost with the onset of dementia, just as a shared history doesn’t disappear with memory loss. It can be frustrating and exhausting, but Glynis and her family have found positives in the gloom, through support from a community of friends, doctors, carers, and others. She says: “We have learnt so much about dementia and can truly understand what someone else is going through, particularly with Frontotemporal dementia PPA (progressive primary aphasia). As absurd as it sounds, we are grateful that Richard has largely been unaware of his loss, and remains a gentle, polite person.”
Her advice to anyone facing the same diagnosis or similar would be to “listen to your neurologist, and ask questions. Don’t worry about what other people think. Talk about what you are going through. The more people understand this disease, the better.”
“And,” she says, “get help even if you think you don’t need it. You will.”
Having a spouse with any form of memory loss can be an emotional and challenging journey, so please feel free to join the Livewell private Facebook support group here where you will find like-minded families and care providers to engage with.
Thankfully, Glynis says she has never struggled to keep perspective, to see the person first and the disease second.
Yes, Richard has FTD, which is hard for his loving wife to watch. But “he feels our love and is still such a gentleman. That essence of him is still there,” Glynis says.
And the essence of them as a couple is also ever-present: “I will be there to the end,” she says. “I know my husband is less of a companion and I am facing a future alone. I am grieving this loss and at the same time it is important for me to show him love, give him a hug, squeeze him tight – he deserves it – and I know he does feel it, even though he is no longer capable of responding.”
“All that we love deeply becomes a part of us” – Helen Keller