The guilt that does not go

Why it does not respond to reason

People will tell you that you are doing everything you can, and they are right, and it changes nothing. That is not a failure of your reasoning. Guilt here is not a conclusion you arrived at, so arguing with it does not work.

It comes from a gap that cannot be closed. The amount of care needed is unlimited and you are one person with a job and a body. Every hour you are not there is a real hour they were alone, and that stays true no matter how many hours you were there.

It is also grief wearing a disguise. Your mother is going and you cannot be angry at the illness, because there is nobody to be angry at, so it turns inward and arrives as a list of things you should have done.

The three that everyone has

Almost every family names the same three, which is worth knowing, because a private failing that turns out to be universal is easier to carry.

• The temper. You snapped at somebody who is ill and cannot help it, and you will do it again. It is exhaustion, not character.
• The distance. You live in another city or another country, and you believe you should have moved. The people who did move feel guilty too, about the job they gave up and the children who changed schools.
• The relief. There are moments when you want it to be over, and that thought arrives with real horror attached. It is the most common thought in caregiving and the least spoken.

Change the question

Asking whether you are doing enough has no answer, because enough is not a quantity that exists here. The question will run all day and produce nothing.

A question with an answer works better. What is the one thing I will do this week. Who else could take one thing off me. What would I tell my sister if she said this to me. None of these fix anything. They stop the loop, which is the actual problem.

Do the thing that is small and repeated

Guilt is loudest about the grand gestures you did not make, and it is quietest when there is something steady happening. A short call at the same hour every day does more for your own head than a fortnight of leave twice a year, and it is also genuinely better for your parent.

That is not a coincidence. Regular small contact is what an unpredictable memory can actually hold on to, and it is what a working life can actually sustain. The thing that is good for them here is also the thing that is survivable for you.

Say it to somebody

Not to your family, necessarily. They are inside it and will reassure you, which is not the same as being heard.

Dementia India Alliance runs helplines staffed by people who have heard all three of the thoughts above, many times, from people who thought they were the only one. Carer support groups do the same job. The relief people describe is rarely about advice. It is about finding out that the worst thing they think about themselves is ordinary.

Where else to look

These are other people’s pages, not ours. Our own published work and the neurologist who reviews it are on the research page.

• Cultural adaptation of Alzheimer’s disease assessment scale-cognitive subscale for use in India and validation of the Tamil version for South Indian population.
  The cultural adaptation of the same questionnaire for use in India.
• Hindi Version of Addenbrooke’s Cognitive Examination III: Distinguishing Cognitive Impairment Among Older Indians at the Lower Cut-Offs.
  A Hindi memory questionnaire validated for older adults in India.
• Alzheimer’s and Dementia Support, India
  The Alzheimer’s Association’s own pages for families in India.