Reflections On Long-Term Care
Reflections from a Death Doula in Long-Term Care
When I walk into long-term care homes and meet with a client for the first time I often hear “I want to go home.”
Sometimes it is said with confusion in the eyes.
Sometimes it comes out as anger and an assertiveness.
Sometimes it is expressed through agitation, resistance, or even violent movement.
And almost always, it lands on the hearts of family members who are already carrying so much. Standing there and listening to what their loved one is saying and almost wincing when they hear them say it.
What Families Are Holding
By the time someone moves into long-term care, it is rarely an easy or casual decision.
It often comes after months, or years, or decades of caregiving.
After the exhaustion has set in.
After their own or their loved ones safety has become a concern.
And after the emotional and physical limits of what a family can provide at home have been reached.
Even when there is deep love, even when there is willingness, even when there is time, caregiving at that level can be incredibly draining and outgrows ones skillset.
So when a loved one says:
“Why am I here?”
“Take me home.”
“You must not love me.”
It can feel like a breaking point.
Because you are human, and those words land somewhere incredibly tender.
What Is Often Beneath the Words
In many of these moments, what I witness is extremely layered.
There can be confusion.
A person waking up in a place that doesn’t feel like their own.
A room that doesn’t hold their memories.
Faces that are unfamiliar.
And routines that no longer make sense to their body.
And at the very same time, what they are expressing is real.
The sadness is real.
The loneliness is real.
The longing to leave is real.
When someone says, “I want to go home,” it is not to be explained away. It is something to listen to and acknowledge.
Because “home” may not only mean a physical place.
It can mean:
comfort
familiarity
autonomy
identity
connection
Sometimes they may not understand how they got there or why they are there. And oftentimes they ask multiple times in the same visit.
And sometimes, even if they do understand, it doesnot lessen the feeling of:
“This is not where I want to be.”
So both things can exist together:
A person may be confused.
And they may also be clearly expressing distress, grief, or longing.
Neither cancels the other out.
The Pain of Being on the Receiving End
For families, this can feel like being told they’ve done something wrong.
Like they’ve abandoned someone they love.
Like they’ve made the wrong decision.
Or like they are being asked to undo something that cannot be undone.
This is one of the most painful dynamics I witness.
Because here, too, more than one truth exists:
A person can be deeply unhappy, disoriented, or longing to leave.
And the decision to move them into care can still be the most loving and necessary choice available.
Holding both of those realities at once is not at all easy.
The Gift of Conversations in Advance
Sometimes, I meet families who have had a different kind of conversation before this stage.
A parent or loved one has said:
“If the time comes when I need more care… and I tell you I don’t want to be there… please remember that I trusted you to make that decision.”
This does not remove the pain.
And it does not take away the emotion of those moments.
But it can soften the weight of it.
It gives families something to hold onto when emotions are high and clarity is low.
It becomes an anchor in moments that feel like they are pulling you under.
What Support Can Look Like
This is where I often step in as a death doula.
I spend time with individuals in long-term care, not to replace family, but to extend the circle of support.
To sit with them.
To listen.
To acknowledge what they are feeling, without trying to rush it away or explain it.
Sometimes we talk.
Sometimes we simply sit together and look at photos.
Sometimes I help them express fears or questions they don’t have the language for.
And something shifts when a person knows:
Someone is coming to see me.
I am not forgotten.
There is a familiar face here.
For families, this can also create space.
Space to rest.
Space to breathe.
Space to step out of the role of constant caregiver, even just for a moment.
And space to return not only as a caregiver, but as a daughter, a son, a partner, a friend.
For Those Carrying This Right Now
If you are navigating this with someone you love, I want to say this clearly:
You are not doing something wrong.
You are making decisions in circumstances that are incredibly complex and emotionally charged.
You are balancing safety, capacity, love, and limits, all at once.
And being on the receiving end of anger, grief, or confusion does not erase the care that brought you here.
It is reflecting how difficult and disorienting this stage of life can be for everyone involved.
A More Human Way Forward
I hold a hope that long-term care continues to evolve.
That spaces feel more like homes.
That there is more access to nature, light, music, animals, and meaningful connection.
That we continue to honour the emotional and relational experience of the people living there.
But until that becomes the standard, what matters most is how we show up within the reality that exists.
With patience.
With compassion.
With support, for both the person in care and the people who love them.
If You Need Support
If your loved one is in long-term care in Victoria and you are feeling the weight of this, you don’t have to navigate it alone.
I offer ongoing visits and emotional support for individuals, as well as guidance for families who are trying to make sense of this stage. I have worked with clients at The Summit at Quadra Village, Amica (various locations), and Carlton House in Oak Bay.
And if you are not local, I am still here for conversation, reflection, and support from a distance.
Because this is hard.
And you deserve care within it too.
