Dementia and palliative care services and staff are only beginning to come to an understanding of what each can offer. So it’s not surprising that families and loved ones of people with dementia may not know about, or have offered to them, palliative care at the time of diagnosis or during its trajectory.
Rosemary, who lives at New Gisborne, outside Melbourne, has been caring for her husband Don who 6 years ago was diagnosed with Lewy Body dementia. He had symptoms for just over 10 years, so even before the diagnosis his dementia symptoms of challenging behaviors, including anxiety, hallucinations, paranoia, and aggression, made his care and life within their home difficult to manage. In recent years this culminated in an acute emergency admission from home, and 11 months in the psychiatric ward, before a residential aged care placement could be found.
Many facilities refused outright to admit him, once told of his Lewy Body diagnosis. “Despite most aged care residents having some form of cognitive decline, they knew, I guess correctly, that they couldn’t cope with the aggressive behavior or violence that is part of Lewy Body“, Rosemary says.
Don is now living in a facility specialising in psychiatric disorders and behaviours, and while it’s ‘pretty ordinary ‘in terms of décor and facilities, staff provide understanding and management of his behavioural symptoms.
Rosemary travels an hour each way, four days a week, to provide three or four hours personal and loving care to an often unresponsive husband. Two of her children visit him to do the same on other days.
It’s not care that only she can provide, but she and her family are the ones who understand the man that Don is, and how to maintain his past and dignity. Apart from attending to his personal hygiene, feeding him his lunch and doing his washing (“the facility could do it, but clothes often go missing and when you see what goes in with clothes in the wash in some facilities, you want to do it yourself”), she takes in mementoes of his life and their life together, plays music, sings, dances with him and tells him stories each day of their life in past times. “It’s four hours a day to take him away from sitting in a chair doing nothing.”
She also provides a human touch – literally and emotionally. “Everyone needs to be touched or cuddled in a friendly or loving way,” she believes.
“I also watch and observe him, and see the little changes which can affect his health and behavior”.
Several times she’s observed physical changes which have presaged major illnesses which staff “just didn’t pick up on, or even acknowledge and act on when I pointed them out.”
One such event led to a major kidney infection and a now permanent catheter that Rosemary thinks was avoidable had she been listened to.
“At least I’m there for him. In his residential unit of 10 people, there are some who’ve never had a visitor, and some follow me around, as I also talk to them and give some a hug as well. They often sit in his room with us to enjoy the music.”
Finding this facility for her husband has improved the quality of Rosemary’s life, giving her a small amount of time to find balance in life. She uses much of this ‘spare’ time with a local Dementia carers’ group in Woodend (servicing the surrounding areas), that helps in accessing specialist help and information from dementia, carer and palliative care organisations.
She is helped by knowing there are others with similar challenges, and has forged some wonderful friendships within the group.
“Other members of the carers’ group are experiencing issues with access to palliative care in the community, and people with dementia appear to not be entitled to services other people can receive”, says Rosemary.
“There is also inadequate access to respite for carers in the region and we’re busy fundraising and getting support to build a local respite guest house style facility for those in the early stages of dementia. It will take a huge amount of work, but someone has to start.”
In the trajectory of her husband’s dementia, and in his and her interactions with different parts of the Victorian acute, psychiatric, palliative and aged care systems, and shared experiences with other carers, she has observed fear, ignorance and lack of integration between these different areas.
“The acute system wasn’t there for Don when he became ill while in a psychiatric ward of the same public hospital. They were prepared to deny him urgent medical care as they, not me or his family, judged he had no quality of life to preserve or restore.
“The aged care system as a whole wouldn’t take him even though they were classed as ‘dementia specific’. Most of their residents would have some form of dementia. Surely all the staff should be trained in care for those with all sorts of dementia, no matter how challenging?”
“No-one, whatever part of the overall health system they work in, seems to be able or willing to slow down, understand, and take the time to provide individual person-centered care that should be the bedrock of all care, especially dementia or palliative care.”
A different palliative care experience
People with dementia, let alone their families and carers don’t seem to be considered worthy of palliative care. And yet their need can be much more protracted than others with dying relatives or family Rosemary has recently discovered.”
“Palliative care has never been offered for Don or myself, yet was offered immediately to my son when he was diagnosed with terminal cancer. His doctor said they always raise the subject when the diagnosis is made, even if the patient may not want to think about it then.”
Rosemary’s son had only one contact with the palliative care service by phone… “but I don’t think he really understood what was offered, and I think it was a bit frightening for him.
“After becoming unresponsive one morning, he was transferred to hospital by ambulance and almost immediately to a palliative care facility.
“The staff at the facility were amazing; they nurtured him and helped him enormously with pain relief and spent time with my daughter and me offering emotional support,” she says.
“As we live several hours drive from the facility, staff set up a room with beds for both of us to sleep in and encouraged us to use kitchen and shower facilities.
“We stayed for three days without leaving the facility, and we were encouraged to take part in my son’s care, as they knew it was important to us.
“I had said that as his mother, I nurtured him into this world, and I wanted to be the one to nurture him as he left this world.
“Staff invited me to take part in washing him and moving him when needed. I held his hand with the family around the bed as he left this life.
“After his death, I was allowed to help wrap him in his shroud with such dignity, and walk with him to the vehicle to be transported to the undertakers.
“This may not be what others would want, but the palliative care staff gave me the opportunity to totally support my son, rather than feel isolated and helpless in a situation I could not change.” She wishes for the same consideration for palliative care for herself and her husband.
On attending a forum for carers about palliative care in her area, Rosemary said that most of the carers were for other illnesses, and when she asked about dementia, she was told that the funding is not available for the system to provide palliative care for dementia.
“I would like palliative care to be available for the time when the facility staff feel or I recognize Don’s in that stage when he’s winding down. It’s not needed now as he can still potter around, but when they believe that things are winding down with only months to go, I’d want them to give me pointers.”
“Someone should come and visit and talk about what’s available, about what or who could come in and assist with extra needs, support, spiritual / religious contacts for you and your loved one, so that it’s not left to the last 24 hours, and you’re not totally alone.
“People with dementia still matter. They may seem to be unaware but surely they’re entitled to respect, dignity, calmness and love. Even animals get that care.”
Woodend Lifestyle Carer’s Group Inc. Contact Cherry Servis (Secretary)03 54207132