What I wish you all knew…how exhausting it can be

I pay for my husband to have day care. One day on the minibus and three days in the day centre. That way he gets activities that are appropriate for him and his needs, with people who understand dementia. And I get a few hours in the day to recover from the nights — and try to keep up with life.

Because the nights are relentless.

If we’re only up four times, and he goes to the toilet and then back to bed, that counts as a good night. I have to get up with him to make sure he goes to the toilet — not into the corridor, not downstairs, not into his office to wee.

Often, he argues about going back to bed. He insists he is looking for something.

If he has had a wee, I sometimes leave him to wander downstairs for a while, turning all the lights on as he goes. Eventually, he might come back to bed. Or he stands at the bottom of the stairs shouting: “Excuse me. Excuse me. Are you there?”

(He doesn’t remember my name. He calls me “Excuse Me.”)

That usually means he wants a cup of tea and the television turned on. Sometimes I make the tea and put the television on, even though I know the day will be more disrupted if I do. And then he will call “Excuse me” again and again, just to make sure I’m still there.

Other times, I spend half an hour or more persuading him back to bed. Once he is there, he falls asleep instantly. For him, a long sleep is two or three hours.

But by then I am wide awake. I lie in bed beside him, trying to get back to sleep. Sometimes I do. Sometimes I give up and get up to make myself a “sleepy tea.”

Then I get back into bed, just begin to drift off — and he wakes again. And I find myself hoping, again, that this time he will just have a wee and come back to bed.

The days become a fog of exhaustion.

The strange thing is, the busy nights don’t seem to affect him one bit.

He laughs when I tell him about it. He enjoys the story, almost as if it is funny to have been “naughty.”

But I am the one living with the aftermath.

People ask me to make decisions, but I am so tired that all I can think about is sleep.

Our house is too big now. The garden was his “allotment.” It is now up for sale.

I need to declutter.

I need to look for somewhere smaller and more suitable.

I need to make sensible, grown-up decisions about our future.

But I am exhausted.

It was only when I self-referred for a Carer’s Assessment and a Social Work Assessment, to try to get him into respite or long-term residential care, that I learnt I could have asked for help to pay for his day care.

The social worker has said it may be difficult to assess him for residential care because we haven’t had a “care package” at home — whatever that is.

Apparently, I am entitled to ten hours of night care a week. But ten hours does not give me enough time to check in somewhere, sleep, have breakfast, and come home again. And then I would still be paying for care, plus paying for somewhere else to sleep.

So I have paid for a month’s respite care myself. £6,291 out of our £15,000 savings. And honestly? It is worth it if it means I can sleep.

It is worth it if I can think clearly for a few weeks. It is worth it if I can get my business onto a more solid footing, so that I can afford to do this again if social services do not come up with a care package that actually gives me proper rest.

Because that is what people need to understand.