Afraid to Sit With a Dying Parent

I kept finding reasons to be in the kitchen.

The dishes. The phone. Checking on things that did not need checking. My father was in the hospital bed we had put in the front room, and I was making coffee nobody was going to drink, because I could not make myself go sit down in that chair.

I want to say it plainly, since almost nobody does: I was afraid of my own father. Not of him — of the room. Of what I might see. Of not knowing what to do with my hands or my face. Of being alone in there if something happened.

If you are doing your version of the kitchen right now, I would like you to know that you are not a coward and you are not failing him.

Why the fear is so strong

Most of us reach middle age having never been in the room with a dying person. It has been moved, over generations, out of houses and into institutions. So when it comes back into your living room, you are asked to do something you have never seen done, with the highest possible stakes, on no notice.

And the specific fears are almost always the same ones.

That you will not know what to say. That you will cry and upset him. That he will ask you something you cannot answer. That his breathing will change and you will not know whether to call someone. That he will die in the ten minutes you stepped out — or that he will die while you are holding his hand, and you will have that image for the rest of your life.

None of those are irrational. They are just unaccompanied. Fear that nobody has walked you through is much bigger than fear somebody has explained.

What actually helps in the room

Almost everything you are afraid of getting wrong turns out not to be required.

You do not have to talk. Sitting quietly with someone is not a failure to engage; it is most of what there is to offer. The pressure to produce meaningful conversation is largely something we invent.

Hearing is generally thought to persist late, so speaking to him — normally, about ordinary things — is worth doing even when there is no response. You do not need profound material. You can tell him what the weather is doing. You can read the sports page out loud.

Touch is the most available language. Hold his hand. Rest your hand on his arm. If he pulls away or seems uncomfortable, stop; comfort is his to define.

Crying in front of him is not damage. Your father has seen you cry. Leaving the room every time you feel something communicates more distance than tears ever would.

And you do not have to say the perfect last thing. Families torment themselves over this. Most of what matters can be said simply: thank you, I love you, I forgive you, please forgive me, it is all right. That is nearly the whole vocabulary, and it can be said more than once.

About what you might see

Some of the fear is fear of the unknown, and can be reduced simply by asking.

Ask the hospice team to tell you what to expect and what is normal. Breathing patterns often change and can sound alarming without indicating distress. Periods of unresponsiveness, restlessness, changes in color or temperature at the hands and feet — these are commonly explained as expected, and knowing that in advance takes an enormous amount of the terror out of witnessing it.

Also ask, directly, what you should call about and what you should not. Having a clear answer to "when do I pick up the phone" is the single thing that most reliably lets a family member stay in the chair instead of hovering in a doorway.

Hospice teams expect these questions. Asking them is not an imposition.

You do not have to hold this alone

This is what Care Bliss is for.

Care Bliss is end-of-life companionship. We are not a medical provider and we are not hospice. Where hospice is involved, we complement their care — we do not replace it, duplicate it, or interfere with it.

What we provide is presence. A trained companion in the room and in the house during the long hours, so the family is not alone with the fear. Someone who has been present at this many times and is not frightened, which changes the temperature of a room more than anything else can. Someone to sit with him so you can sleep, or shower, or go outside for twenty minutes without guilt. Someone who can help you find your way into the chair, and stay nearby while you do.

And someone to sit with him at three in the morning when the rest of the house has finally gone down.

You are allowed to be scared. You are not required to be scared by yourself.

Call 1-888-896-8275, email ask@gcaresolution.com, or visit GeriatricCareSolution.com to talk about Care Bliss companionship.