Anticipatory Grief in Group Homes: Preparing Residents Before a Death

This page is for the window before a death. The parent is on hospice. The peer in room 3 is declining. The mom keeps saying she has not made a plan yet, and you can hear in her voice that she knows she is running out of time. That window has a name. It is called anticipatory grief, and it is the part of the work where staff and BCBAs can do the most good with the least drama. Most of the other grief pages on this site are about what to do after someone dies. This one is about the weeks and months before, when there is still time to prepare the resident, write things down, and have the hard conversations with the family.

What anticipatory grief looks like for adults with IDD#

Anticipatory grief is the grief that shows up before the death. It can start when a parent gets a terminal diagnosis. It can start when a roommate stops eating and the nurse says hospice. It can start when a day hab peer who has been there for ten years moves into a hospital bed and does not come back.

For adults with intellectual and developmental disabilities (IDD), this grief often looks different from what staff expect. You may see more questions, not fewer. You may see a resident asking where mom is over and over, even after you have told them she is sick. You may see new aches and pains, more sleeping, or a sudden swing into being the easiest person in the house to manage. That last one is the one staff miss the most. Compliance is not always a good sign. Sometimes a resident gets quiet because they are holding a feeling they do not have words for.

Direct Support Professionals (DSPs) are the ones who will catch this first. They are in the home every shift. They see who is eating, who is sleeping, who is asking the same question on loop. A BCBA who pops in once a week will miss it. The DSP will not, if the DSP knows what to look for.

When a parent is on hospice: what staff should start doing now#

Once the family says the word hospice, the clock has started. Here is what staff can begin this week, not after the funeral.

Use real words. Say sick. Say dying. Say death. Skip "passed away," "lost," and "went to a better place." Lund is direct about this. Euphemisms confuse residents who take language literally. If mom is dying, say mom is dying. Say it in a normal voice, the same voice you use for the rest of the day.

Tell the resident what is happening, at their level. They do not need every medical detail. They do need to know mom is very sick, the doctors cannot fix it, and at some point her body is going to stop working. Then check back in. Ask what they understand. Let them ask the same question tomorrow, and the next day, and the day after that. Repetition is how a lot of residents process.

Make a visit plan. Decide with the resident how often they want to see mom while she is still here, what they want to bring, and who will take them. Put it on the calendar. Tell the next shift so it does not fall through.

Build the memory kit now, while mom can still help. A pillow from her shirt. A voice note on a phone. A few photos picked out together. Lund has done rice paper notes that dissolve in water. The point is to make something the resident can hold later, when the only thing left is the memory.

If the death is something that hasn't happened, but it's going to happen, we can provide information beforehand. And the person with a disability can really give a lot of information about how much they want to be involved. From the talk — Tricia Lund

When a peer in the home is declining: preparing other residents#

When a resident in the same home is dying, the other residents notice. They notice the new equipment. They notice the nurse who keeps coming. They notice when their friend stops coming to dinner.

Staff often want to keep this quiet. The instinct is protective, and it is wrong. The residents already know something is changing. Not telling them does not spare them. It just leaves them confused and watching for clues.

Tell them, in plain words, that their housemate is very sick and is probably going to die. Tell them what dying means in this home. Tell them who is taking care of their friend. Tell them what they can do, like sitting in the room, holding a hand, or drawing a picture. Ask what they want to do. Then write it down so the next staff knows.

If a resident wants to say goodbye, make that happen on a real schedule, not a vague "we'll see." If a resident does not want to go into the room, that is also fine. The point is they got to choose.

The autonomy-focused model: ask, don't decide for them#

Lund draws a hard line between two ways staff can show up. The first one is the care-focused model. It sounds good, and it is what most homes default to. The staff member loves the resident, so the staff member decides how much grief the resident can handle, whether they go to the funeral, whether the photos stay up. The problem is the staff member is making every choice. The resident is just along for the ride.

The autonomy-focused model flips it. Staff give the resident the information. The resident tells staff how much they want to be in it. They want to go to the wake but not the burial? Fine. They want to see the body? Fine. They want to skip the whole thing and light a candle at home? Also fine. The job of staff is to lay out the choices in a way the resident can understand, then let the resident pick.

When someone is dying or experiencing the death of someone close to them, they're experiencing some of the most complex emotions that they will ever go through. These emotions need to be acknowledged and witnessed. From the talk — Tricia Lund

This is also where staff and BCBAs need to be honest with families. Families sometimes ask staff not to tell the resident. That is a real conflict, and we cover how to handle it in the FAQ below. The short version: the resident has the right to know.

Succession planning conversations BCBAs can start with families#

Anticipatory grief work is not just about feelings. It is also about paperwork. Most adult IDD families do not have a plan written down for what happens when the parent dies. Who pays the bills. Who holds guardianship. Which sibling shows up to the IEP meetings and ISP reviews. Where the resident lives if the family home gets sold.

A lot of my, and if you've worked with adults, you know this, right? A lot of the parents don't have a plan in place for what's going to happen when they die. Who's going to take care of the money? Where's the person going to live? Who's the support system? Is guardianship going to be moved to someone else? From the talk — Tricia Lund

BCBAs sit in a rare seat for this. You are in the home or day hab regularly. You already talk to the parents about the ISP. You are one of the few outside professionals the family trusts. That is the opening.

A starter script: "I want to ask about something a lot of families do not get asked about. If something happened to you, who would step in for your son? Have you talked to anyone in the family about it?" Most parents will exhale and say no. Some will cry. Almost all of them will be grateful you asked.

You do not have to be the lawyer. You just have to start the conversation and point them to one. A local Arc chapter, a special-needs estate planner, or a state-level disability rights office is usually enough. Write down what they tell you and put it in the chart so the next BCBA does not start from zero.

The cost of skipping this conversation is the story Lund told about the niece. The aunt who was the caregiver died with no plan, and the niece ended up in a group home full of strangers, crying for the only person she had left. That handoff did not have to look like that. Someone could have asked the aunt about a plan two years earlier.

What to document so the next staff knows the plan#

DSPs turn over. Shifts change. The person who had the hardest conversation with the resident on Tuesday is off on Wednesday. If the plan lives only in one person's head, it dies with that shift.

Write down, in the resident's chart or shift notes, the basics. Who is dying. How sick they are. What the resident has been told, in what words. What words to use and what words to skip. How the resident has been asking about it. The visit schedule. Who is on the memory kit. What the resident wants for the funeral or memorial. What the family has agreed to. Any cultural or religious practices the family wants honored.

Add a note about behavior, too. Track when grief responses show up, what they look like, and what helps. This is the BCBA job. Write it like a function-based plan, not a punishment plan. The behavior is communication. Treat it that way.

When the death actually happens, the next shift opens that chart and knows exactly where to pick up. That is what anticipatory work buys you.

Frequently asked questions#

How early should staff start talking about an expected death?

As soon as the family or the medical team has told you the death is coming. Hospice is a clear signal. A terminal diagnosis is a clear signal. A peer who has moved to a hospital bed and stopped eating is a clear signal. Waiting until the last week does not protect the resident. It just gives you less time to prepare them, build the memory kit, and let them choose how involved they want to be in the funeral.

What if the family doesn't want the client told?

This comes up a lot, and Lund flags it in the talk. The first step is a real conversation with the family, not a fight. Ask why. Sometimes the family is scared of behaviors. Sometimes they think the resident will not understand. Sometimes they are protecting themselves from a hard conversation.

Bring the research. Residents who are kept in the dark do worse, not better. Behaviors after the death are usually higher when the resident had no warning. Offer a middle path. You can tell the resident at their level, in your words, with the family's input on which details to include. If the family still says no, document the conversation and escalate to the agency, your BACB supervisor, or the IDT depending on your role. The resident's right to know about their own life does not disappear because a family is uncomfortable.

Can anticipatory grief support reduce behaviors after the death?

Yes, and the research Lund cites backs this up. Residents who get information ahead of time, who are part of the planning, and who have a memory kit and a clear ritual tend to show fewer and shorter grief-related behavior changes after the death. The behaviors do not disappear. Grief is grief. But the spikes are smaller, the recovery is faster, and the resident is less likely to end up labeled as having prolonged grief disorder, which Lund points out is overdiagnosed in this population because they did not get support in the first place.

Start the work this week#

If you have a resident with a parent on hospice, a peer in decline, or a family that has never written a succession plan, pick one and start. Have the conversation. Build the kit. Write it in the chart. The full talk goes deeper on the research, the case stories, and what to put in a DSP grief training. It is one CEU, and it pairs with the sibling pages below.