Living Alongside Dementia: The Grief Nobody Prepares Us For | Part 2

“We're all just walking each other home.”— Ram Dass

Last month, I wrote about dementia from the perspective of understanding it: what it is, what may be happening within the brain, and how greater understanding can help us meet someone living with dementia with compassion rather than correction.

But there is another person in this story.

The person walking beside them.

The partner who quietly becomes a carer. The son or daughter making decisions they never imagined having to make. The family member trying to balance work, finances, relationships and their own wellbeing whilst watching someone they love gradually change.

Caring for someone with dementia can contain extraordinary tenderness and connection. It can also be exhausting, frustrating, isolating and deeply painful. Sometimes all of those things can exist on the very same day.

So this month, Mind Matters Monthly is for them.

For those doing the caring, carrying and coping … and for the complicated feelings we don't always give ourselves permission to talk about.

“Ambiguous loss is the most stressful kind of loss because there is no closure.”— Pauline Boss

Perhaps one of the hardest aspects of dementia is that grief doesn't always begin after someone dies.

Sometimes it begins while they're still sitting beside us.

There is a particular kind of sorrow that comes from watching someone gradually change. You may still hold their hand, hear their voice or share a meal together, yet quietly find yourself mourning conversations you'll never have again, memories they no longer recognise, or the relationship that once felt so familiar.

This experience is sometimes called ambiguous loss or living grief.

There is no clear ending.

No funeral.

No moment where life divides neatly into before and after.

Instead, there can be many small losses.

The person who always gave you advice may now need you to make decisions for them.

The partner who shared the responsibilities of everyday life may gradually become someone you care for.

A parent may no longer recognise you as their child.

Plans for retirement, travel or simply growing older together may quietly disappear.

And yet the person you love is still here.

That contradiction can be extraordinarily difficult to make sense of.

"How can I grieve someone who is still here?"

The truth is, many people do.

And acknowledging that grief does not mean you have stopped loving them.

The feelings we're less comfortable admitting

There is another part of caring that I think deserves to be spoken about honestly.

You can love somebody deeply and still feel angry.

You can understand that their behaviour is caused by dementia and still feel hurt by it.

You can be compassionate and exhausted.

You can feel desperately protective of someone and, at the same time, wish for an hour in which nobody needs anything from you.

You can even resent what the illness has taken from your life.

And then, very often, comes guilt.

I shouldn't feel like this.

They can't help it.

Other people cope with far worse.

What kind of person resents someone who is ill?

These thoughts can quickly turn difficult emotions into shame.

But caring for someone does not somehow remove your own humanity.

Recognising that behaviour is driven by fear, confusion or changes within the brain can help us respond more compassionately, but understanding why something is happening doesn't mean it stops being difficult to live with.

Dementia can involve repetition, disrupted sleep, accusations, wandering, resistance to personal care, verbal aggression and, for some families, physical aggression. The person experiencing those behaviours may be frightened or confused, but the person receiving them can still become frightened, depleted or overwhelmed too.

Both realities can be true.

When caring begins to consume your own life

There is a phrase we use so easily:

“Make sure you're looking after yourself.”

It's good advice.

It's also sometimes painfully unrealistic.

What does self-care look like when you cannot safely leave someone alone?

When you've been awake several times during the night?

When appointments, medication, meals, washing, paperwork and supervision have quietly swallowed the shape of your day?

When friends have stopped asking you out because you've said no too many times?

Or when paying someone else to provide care simply isn't financially possible?

For somebody deep in the trenches of caring, being told to have a bath, practise mindfulness or take an afternoon for yourself can feel almost insulting when what you actually need is another pair of hands.

So perhaps we need to broaden what we mean by looking after the carer.

Sometimes it is rest.

Sometimes it is asking a sibling to take over for two hours.

Sometimes it is accepting help before you believe things are “bad enough”.

Sometimes it is telling your doctor that you're no longer coping.

Sometimes it is allowing somebody else to cook the dinner, do the shopping or sit with the person you care for.

Sometimes it is finding other carers and finally saying something you haven't felt able to say anywhere else:

“I love them, but I am exhausted.”

That isn't failure.

It's information.

Your nervous system has limits too.

Hold onto humour where you can

One thing I remember particularly clearly from my years in care is the importance of humour.

Not laughing at someone.

Laughing with them.

There could be tremendously difficult days and then, unexpectedly, something would happen that made everyone laugh.

Those moments mattered.

Humour doesn't deny the seriousness of dementia. Sometimes it gives us a few precious seconds in which dementia isn't the only thing in the room.

For families, those flashes of shared humour can be particularly special. A familiar joke, a mischievous expression, a song sung completely out of tune, an old phrase suddenly remembered — tiny glimpses of connection amongst everything that has changed.

You don't have to feel guilty for laughing during something painful.

Joy and grief are allowed to occupy the same room.

The financial and practical weight of caring

There is also a side of dementia that isn't discussed nearly enough: the administrative and financial reality.

People may reduce their working hours or stop working altogether.

There can be travel costs, adaptations to the home, additional heating, transport, professional care, respite care and eventually decisions about residential care.

Then comes paperwork.

Benefits.

Medical appointments.

Legal decisions.

Banking.

Power of attorney or its equivalent.

Who is allowed to make decisions, and when?

Who pays for what?

And what happens when the person you're caring for can no longer manage their own affairs?

These conversations are rarely easy, but having them as early as possible can remove an enormous amount of pressure later.

For those of us living in France, there are forms of practical and financial support available, including the Allocation personnalisée d'autonomie (APA) for eligible people, services to support care at home, and in some circumstances a droit au répit — a right to respite intended to help family carers access replacement care.

France Alzheimer also provides information about financial and legal support, carer training, support groups and Cafés Mémoire.

Knowing what help exists does not magically make caring easy.

But nobody should be struggling alone simply because they didn't know what they were entitled to ask for.

When accepting more help feels like betrayal

One of the hardest decisions a family may eventually face is whether caring at home is still possible.

There can be enormous guilt attached to bringing in professional carers, arranging respite or considering residential care.

I promised I'd never put them in a home.

They looked after me. I should be able to look after them.

If I loved them enough, surely I could keep going.

But love and capacity are not the same thing.

There may come a point where one exhausted human being simply cannot safely provide everything another human being needs, twenty-four hours a day.

Needing more help doesn't erase the years of care that came before it.

Nor does handing over some aspects of someone's care mean handing over your relationship with them.

Sometimes allowing others to help can create space for you to become a husband, wife, daughter, son or friend again rather than spending every moment being a carer.

What remains

Loving someone with dementia often means holding two realities at once.

The sadness of what has changed.

And the gratitude for what remains.

There may still be moments of laughter.

A familiar smile.

A squeeze of the hand.

A favourite song.

A shared cup of tea.

And there may also be days when none of those things happen.

I think that's important to say too.

We don't need to search every difficult experience for something beautiful.

Sometimes caring is simply hard.

Sometimes the person you love cannot reassure you, thank you, recognise what you're doing or express love in the way they once did.

Their inability to give that back does not make your care less meaningful.

Nor does it diminish their worth.

And eventually, another kind of grief

When someone living with dementia eventually dies, grief can be complicated again.

There may be enormous sadness.

There may also be relief.

Relief that they are no longer frightened or suffering.

Relief that you no longer have to remain constantly alert.

Relief that, perhaps for the first time in years, you can sleep.

And then guilt may arrive for feeling relieved.

There is no correct emotional response.

You may have been grieving for years before the person died and still be devastated by their death. You may feel numb. You may miss the person they were before dementia more acutely than the person they had become. You may suddenly discover that the caring role had occupied so much of your identity that you no longer quite know what to do with yourself.

Grief doesn't follow rules.

Neither does love.

There is hope…

Although there is currently no cure for dementia, our understanding of the different diseases that cause dementia is advancing more rapidly than ever before. Earlier diagnosis, improved treatments, healthier lifestyles and greater awareness are all helping people live better for longer.

But perhaps hope isn't only about finding a cure.

Sometimes hope is smaller.

A good afternoon.

A song remembered.

Someone finally accepting help.

A carer getting an uninterrupted night's sleep.

A family finding a way of being together that works now, rather than continually trying to recreate what existed before.

Perhaps the greatest lesson dementia offers us isn't about memory at all.

It's about humanity.

It reminds us that our value has never been measured by how much we remember, how productive we are or how quickly we think.

It is found in dignity.

In compassion.

In feeling safe.

In knowing that we still matter.

As we continue learning more about the brain, may we never forget the person who lives within it — or the person walking beside them.

Because whilst memories may change, our need to be treated with dignity, compassion and humanity never does.

Maya Angelou once wrote, “People will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

Perhaps dementia asks us to remember that in both directions.

To care for the person living with the disease.

And to care for the person doing the caring.

Further information and support

For readers in the UK, Alzheimer's Society and Dementia UK provide information and support for people living with dementia and those caring for them.

For readers in France, France Alzheimer et maladies apparentées provides local associations, carer training, support groups, Cafés Mémoire, information about respite and practical guidance around financial and legal support.

If you're caring for someone with dementia and recognise yourself somewhere in these words, perhaps the most important thing I can leave you with is this:

You matter within this story too.

With warmth,

Carly Hammond