Living loss in caregiving: questions and support

Living loss in caregiving occurs when someone you love is still there, but has changed. This can involve decline, memory problems, or a different role in the relationship. You are then not only missing someone, but also how things used to be.

What is living loss?

Living loss means grieving someone who is still alive. This often happens when someone changes because of illness or brain injury. You are then not only missing how things used to be. You also miss the person, the role, and the life together as you knew it.

With acquired brain injury (ABI), this can be extra intense. You take over tasks and see behavior or personality change. That grief deserves to be acknowledged. It is sorrow for someone who is still living, but has changed.

Why does grieving someone who is still there sometimes feel so heavy?

Something disappears, while the other person is still there. That often causes confusion. You may feel sadness, relief, emptiness, and guilt all at once. There is no fixed way or timeframe for grief.

The caregiving role also changes. Loved ones are at greater risk of overload and loneliness. Caregiving often has no fixed hours. That makes it hard to stay alert all the time.

How do you talk about a partner or loved one who has changed because of illness?

Start with what has really changed. For example, say that you miss the person as they used to be, or that life together has changed because of illness.

What support and peer contact are there in Zoetermeer?

In Zoetermeer, you can talk with others who are going through the same thing. At inZet there are discussion groups for people who care for someone with dementia. There is also a partner discussion group. In addition, there is a caregiving café every month.

For people with dementia and their loved ones, there is also an Alzheimer Café or Meeting Point. There you can share experiences and ask questions. If a meeting does not suit you, online peer contact is an alternative. For personal support with dementia, you can turn to dementia case management in Zoetermeer. At Mantelzorg Zoetermeer, you can share your story.

Which rituals or meaningful practices help with loss?

Sometimes it helps to reflect on what caregiving also brought you. That can be a smile, a memory, or the feeling that you mattered. Small moments can have great value. That does not make the loss easier, but it can provide something to hold on to.

Talking can also help. After a death, you can share your story with a peer group or grief counselor. In Zoetermeer there is also individual support from a volunteer who visits you at home. You can then talk about how you want to continue living with the loss.

What can you do if you want to move forward after the loss or if the care changes?

After a death, a lot comes your way. The municipality needs to be informed that your loved one has died. Often the funeral director makes this report. You also arrange the funeral, cancel subscriptions, and contact the bank. Health insurance and the healthcare allowance stop automatically.

If care is still continuing, you are also allowed to talk about what you need. At Mantelzorg Zoetermeer or the local access desk, you can ask where you can turn. If you are unsure about suitable guidance or help, you can discuss this with your general practitioner.