The Hidden Mental Load of Dementia Caregiving
Hello, welcome to another moment of clarity.
There is a part of dementia caregiving that is difficult to explain to people who are not living it.
It is not always the washing, the medication, the appointments or the difficult days.
Sometimes it is simply the fact that somewhere in the back of your mind, there is always a list.
A list of things that need remembering. Things that happened last week. Things that might need mentioning. Letters that need answering. Dates that cannot be missed.
And even when you are sitting down, your mind does not always know how to sit down with you.
The Part of Caregiving Nobody Really Sees
When people imagine caring for someone with dementia, I think they often picture the visible things.
Helping someone get dressed.
Making meals.
Taking them to appointments.
Being there when they are confused or having a difficult day.
Those things are real, of course. But there is another layer of caregiving that happens quietly in the background.
It is the appointment you booked three weeks ago and are still thinking about.
The prescription that needs ordering.
The letter that arrived through the post.
The phone call you need to make.
The question you want to remember to ask at the next review.
The change you noticed yesterday that you are wondering whether you should mention.
None of these things necessarily look like caregiving from the outside.
But they take up space.
I have started to realise just how much of my day can be occupied by things that nobody else can see.
I Didn't Expect to Become the Person Who Remembers Everything
I don't remember consciously deciding that I would become the person who remembered everything.
It just seemed to happen.
I started remembering appointment dates.
Then prescription dates.
Then when the day centre was happening.
Then what had been said during the last conversation with someone.
Then what had changed since the previous appointment.
Then the things I wanted to ask next time.
And somewhere along the way, I became the person holding all those little pieces together.
Sometimes I wonder what would happen if I stopped remembering them.
Not because I want to.
Just because I know how much depends on remembering.
There are dates that matter.
There are details that disappear surprisingly quickly.
There are conversations where I find myself thinking, I need to remember that.
Even when I am tired.
Even when I am cooking.
Even when I am trying to watch something on television.
The list does not disappear simply because I have moved on to something else.
Perhaps that is one of the strangest parts.
You can be doing something completely ordinary while part of your mind is somewhere else entirely.
An Appointment Doesn't Begin When You Walk Into the Room
I have sometimes looked at an appointment afterwards and thought about how little time it actually took.
Thirty minutes, perhaps.
But the appointment did not begin when we walked through the door.
It began days earlier.
It began with remembering why it had been arranged.
Thinking about what had happened since the last appointment.
Trying to work out which changes were important enough to mention.
Going over previous conversations in my head.
Wondering whether I had forgotten something.
Then there is the appointment itself.
Listening carefully.
Trying to take everything in.
Making sure the important points are not missed.
Sometimes trying to speak while also watching how Mum is responding.
And then it continues after we leave.
There might be something to arrange.
Something to pick up.
A prescription to chase.
A letter to wait for.
Something I need to remember to tell someone else.
So when I say an appointment can take up much more than half an hour, I don't mean the clock says so.
I mean the mental part of it started long before we arrived and often continues after we get home.
Then There Is the Paperwork
And then there is the paperwork.
It seems to multiply quietly.
Letters arrive.
Forms need completing.
Referrals are mentioned.
Prescriptions change.
Benefits correspondence appears.
Someone asks for information that I know I have somewhere, although finding exactly where is another matter.
I have had moments when I have looked at a small pile of papers and felt disproportionately tired.
The pile itself is not enormous.
That is almost the point.
It is what each piece of paper represents.
Another thing to understand.
Another date to remember.
Another decision to make.
Another possibility that I need to keep somewhere in my mind.
I think that is why paperwork can feel heavier than it looks.
A letter is rarely just a letter when you are caring for someone.
Sometimes it carries a question.
Sometimes a responsibility.
Sometimes uncertainty.
Sometimes it is simply one more thing arriving in a mind that already feels full.
The Invisible List in My Head
There is a list in my head that I don't remember writing.
It changes constantly.
Some things are crossed off.
Other things appear.
Sometimes I forget what I was thinking about, only to remember it again while brushing my teeth or making a cup of tea.
That can be one of the hardest things to explain.
You can be physically resting while mentally working.
I might sit down in the evening and realise that I have not actually stopped thinking.
Did I remember to do that?
When was that appointment?
Did I reply to that?
What happened with the prescription?
I should mention that at the next appointment.
I must not forget.
I think caregivers probably know that last sentence particularly well.
I must not forget.
It sounds so small.
But sometimes there is a lot of pressure hidden inside it.
Because forgetting does not always feel like an ordinary mistake when you are responsible for someone else.
So the mind keeps checking.
And checking again.
Sometimes I Don't Need Another Reminder
This is something I have been thinking about lately.
The words are usually well-intentioned.
“Don't forget…”
“Make sure you…”
“Have you remembered to…”
I know people mean to help.
And sometimes a reminder genuinely is helpful.
But there are moments when hearing don't forget makes something inside me feel tired.
Not angry.
Not ungrateful.
Just tired.
Because the truth is, I have probably been thinking about it already.
Maybe I have been thinking about it since yesterday.
Maybe I wrote it down because I was afraid I would forget.
Maybe I have mentally rehearsed the conversation three times.
Maybe I have put it somewhere I will definitely see it.
Sometimes I don't need another reminder.
I need someone else to carry one small thing for a while.
I think there is an important difference between those two things.
A reminder gives the responsibility back to you.
Help takes a small piece of it away.
And perhaps that is what I have sometimes struggled to explain.
I don't necessarily need someone to tell me what needs doing.
I need, occasionally, not to be the only person who has to remember.
Keeping Everything Together Doesn't Mean Feeling On Top of Everything
I used to think that if I was managing things, I should feel as though I was managing them.
I am not sure I believe that anymore.
There are weeks when everything seems organised.
Then there are weeks when I am simply trying to keep up.
A letter gets left on the table for longer than I intended.
Something gets written down because I know I will otherwise forget it.
I have to remind myself twice about something I normally remember easily.
There are days when the list in my head feels manageable.
There are other days when it feels like it has become too long to hold.
And perhaps that does not mean I am doing a bad job.
Perhaps it just means there is a lot to carry.
Caregiving does not always look organised from the inside.
Sometimes it looks like remembering the most important thing and letting the smaller things wait.
Sometimes it looks like getting through the day and deciding tomorrow can deal with tomorrow.
Sometimes it looks like sitting quietly with a cup of tea while your mind finally goes quiet for five minutes.
I am learning that keeping everything together does not mean feeling completely on top of everything.
Maybe those are two different things.
The Mental Load of Dementia Caregiving
I have been wondering whether the mental load of dementia caregiving is less about the number of tasks and more about the feeling that you are the person who has to remember them.
That feels different.
One more phone call is one more phone call.
But knowing that nobody else is necessarily keeping track of whether it gets made can make it feel much heavier.
One more appointment is one more appointment.
But remembering why it matters, what happened last time and what needs asking can turn thirty minutes into something much bigger.
One more letter is one more letter.
But when you are the person responsible for understanding what it means, it is never quite just paper.
Perhaps that is why caregivers can sometimes feel exhausted without being able to point to one particular thing that caused it.
There may not be one thing.
There may simply be hundreds of small things being carried quietly.
I don't know if anyone else feels this, but sometimes I think the mind gets tired before the body does.
And maybe that is why an ordinary quiet moment can feel so valuable.
Not because everything has been sorted.
Just because, for a few minutes, nothing needs remembering.
A Closing Thought
I think there is a strange kind of loneliness in being the person who remembers.
Other people may see the appointment.
They may see the paperwork.
They may hear about the phone call.
But they do not always see everything that happened before and after.
They may see the thirty minutes in the room without knowing about the hours of thought surrounding it.
They may see the letter on the table without seeing the responsibility that comes with opening it.
And they may say, “Don't forget,” without realising how much of your mind is already occupied by remembering.
I am slowly learning that I do not have to prove I am coping by keeping every part of life perfectly organised.
Some things will wait.
Some things will be forgotten and remembered again.
Some days will feel more manageable than others.
That does not make the care any less real.
And if you are carrying that invisible list too, I hope you know that the fact you sometimes feel tired of carrying it does not mean you care any less.
Perhaps it simply means you are human.
There is more to caregiving than the things other people can see.
Sometimes the heaviest part is knowing that you are the one who has to remember.
Until next time,
James
If this reflection feels familiar, perhaps take a quiet moment to ask yourself: what is one thing you have been carrying in your head that you wish someone else could carry for a while?
You do not have to have an answer.
These are the kinds of quiet conversations I continue sharing on Instagram at @momentsofclarityblog, where there is always space for the parts of dementia caregiving that are harder to put into words.
Comments