“My mom has dementia and I'm already grieving her”
When a parent has dementia, the person they were can slip away long before death. A visit may bring a stranger's look, a flash of the old mother, then confusion again. Grief comes and goes with no funeral, no cards and no point at which it is allowed to start. What matters most is how the loss keeps changing, how much care the person is carrying, and whether mixed feelings such as wishing it were over are adding guilt to the grief.
What to check first
It helps to check how much of the caring load sits with one person, and whether sleep and health are holding up. Exhaustion from caring can look like grief, and the two often come together. A recent step down, such as a move into a care home or a new diagnosis, can bring a fresh wave.
What could be going on
Ambiguous loss (Boss): Fits if she is here in body and gone in mind, and you don't know whether to mourn or hope.
Grief (complicated, disenfranchised, anticipatory): Could be grief starting before the death. Check whether waves come with each change or when you picture the end.
Chronic sorrow and nonfinite loss (Olshansky): Fits if each new decline brings a fresh wave of sadness that then eases until the next.
Burnout: Check whether the flatness and irritability come from the caring load, and lift with real rest.
Ambivalence: Fits if love sits beside wishing it were over, and that wish brings shame.
Guilt: Check whether guilt follows every choice about her care, so nothing ever feels like enough.
Telling them apart
Ambiguous loss (Boss): The mother is there in body and gone in many of the ways that mattered. With no clear ending, the person may not know whether to mourn or hope, and swings between the two. Others may not see it as a loss at all.
Grief (complicated, disenfranchised, anticipatory): This may be grief starting before the death, often called anticipatory grief. It comes in waves around each change and around imagining the end. When the death comes, some find part of the grieving has already happened, and some find it starts again.
Chronic sorrow and nonfinite loss (Olshansky): Each new decline brings a fresh wave: the first time she forgets a name, the last time she cooks, the day she stops talking. The sadness keeps returning because the loss keeps going on. Between the waves there may be ordinary days.
Burnout: The tiredness may be from the caring itself: broken nights, appointments, forms, worry. Feeling flat, short-tempered and detached from the parent can be exhaustion more than grief. It tends to lift with real rest and help.
Ambivalence: Love may sit beside wishing it were over, for her sake or for the carer's. The wish can feel shameful and is very common among carers. Mixed feelings about the parent from earlier years may also come back now.
Guilt: Guilt may follow every choice: the care home, a missed visit, losing patience. Nothing feels like enough. The guilt can grow heavier than the sadness and crowd it out.
Questions to carry
- At my last visit, which moment hurt most, and what had she just done or said?
- Which parts of her am I already grieving, and which do I still have?
Also said as
- grieving a parent with dementia
- my dad doesn't know who i am anymore
- anticipatory grief dementia
- mourning someone who's still here
- lost my mom to alzheimer's but she's still alive
- sad every time i visit my nan in the care home