How to cope as a caregiver

Taking on a dementia caregiver role for your spouse or parent is one of the most difficult things you can do. There’s an ongoing list of practicalities – doctor’s appointments, medications, and daily routines to stick to. But none of that can compare to the quiet heartbreak of slowly not recognizing your loved one. 

Each day, the person you once knew better than anyone else may become more and more like a stranger. When they pause to remember your name or forget the inside joke that always made you laugh, it’s more than just a sad moment.

It’s anticipatory grief, sometimes called “the long goodbye” – a sense of mourning your loved one even while they’re still alive.

We know this can be a confusing and painful time for you and your family. We’ll explain what anticipatory grief is, how it can show up in your day-to-day life as a caregiver, and some practical ways you can start to process these emotions.

What is anticipatory grief?

Traditionally, mourning comes after the loss of a loved one. But the grieving process isn’t always straightforward. With anticipatory grief, you’re grieving someone who’s still alive – watching their physical and cognitive decline and feeling the grief of a loss that’s slowly unfolding, yet to fully arrive.

Complex emotions can appear early and stay with you throughout your caregiving experience as you start to mourn the parts of them that are slipping away, the future events or activities they may not be here to enjoy. It’s a difficult experience, and often difficult to explain the pain of impending loss to someone who’s never been through it before. 

We’ve been there. And we’re here to help you understand and navigate this painful process.

Note: Anticipatory grief is closely related to ‘ambiguous loss’, a type of grief that happens when a person is physically present but psychologically absent. The lack of a clear ending can make it hard to find closure. (You can read more about this in our previous blog post on ambiguous loss.)

How anticipatory grief shows up 

Like with grief after a loss, anticipatory grief can bring up a whole host of difficult feelings. Anger, sadness, and even guilt can be all-consuming some days, and then other days, hope can creep in, catching you off guard. And it can affect each person differently:

For spouses: When your spouse has been diagnosed with dementia or Alzheimer’s disease, you’re grieving your best friend, partner, and confidant – all while they’re still alive. This loss can be incredibly lonely; while you’re making sure they get their medications and keeping their daily routines on track, it can feel like your pain goes unnoticed.

For adult children: While many of us anticipate losing a parent one day, watching them slowly fade away in their final years can make you feel powerless. And as your roles are reversed and you step into the caretaker role for a parent, you may grieve the way things were before, or the future plans they may not be able to be part of.

There’s no right or wrong way to grieve. It’s a deeply personal experience, and what matters is finding ways to care for yourself, even while you’re caring for someone else.

How to cope with anticipatory grief while caring for someone with dementia

You might feel like you need to put your grief ‘on hold’ to look after your loved one. But, making space for your feelings and taking care of yourself isn’t selfish – it’s necessary. Yes, you’re a caregiver, but you’re hurting, too.

Here are a few ways you can cope with these emotions while you care:

Give your emotions space

Your loved one may still be alive, but when you’re experiencing anticipatory grief, the loss you feel is very real and deeply painful. Don’t push your emotions down or trivialize them – give yourself the same grace and patience you would give yourself after a physical loss. 

Let yourself cry. Let yourself feel guilty or angry. And, if there are moments of lightness, let yourself laugh! The healing process is rarely linear. Some days will be better than others, and accepting those moments of joy doesn’t mean you love your partner or parent any less – it means you’re human.

Set boundaries when you need to

This can feel impossible, especially when you’re used to putting others first. But caregiving without boundaries can quickly lead to burnout. It’s okay to take breaks, to say no, or to step away when things get to be a bit much.

Lean on your support system

Nobody expects you to handle it all by yourself. It’s okay to ask for help, and it can go a long way in lightening the heavy burden.

Reach out to family members and friends: Share how you’re feeling and be specific about what kind of support would be helpful – whether you just want someone to listen or you’d like a hand with daily tasks. Those who care about you will be eager to help you through your grief, even if they might not fully understand what you’re going through.

Explore respite care: It could be as simple as a few hours of in-home care or a short stay in a care facility or nursing home. But if you’re finding it hard to cope and need to take a step back, respite care can give you the temporary relief you’re looking for. 

Look into support groups: One of the best ways to seek support is by connecting with those who’ve been through anticipatory grief before – or who might be going through it now. Support groups create an understanding space for you to share your story, express your feelings, and get advice from others who get it.

The Alzheimer’s Association and Alzheimer’s Texas both hold in-person and online support groups for dementia caregivers. Being part of a community of like-minded people can be incredibly validating. It’s a powerful tool to find comfort, encouragement, and perspective – especially on tougher days.

Get professional help: The grieving process is a complicated one with no one-size-fits-all solution. Whether it’s sadness, stress, exhaustion, anxiety, or something else entirely, a therapist or counselor can help you process what you’re feeling, give you practical coping strategies, and remind you that your well-being matters, too.

You don’t have to go through ‘the long goodbye’ alone

We truly understand the pain that comes with anticipatory grief because we see it every day in the families we help. If you’re feeling the emotional burden of caring and need some extra support, Sundara Senior Living is here for you and your loved one. 

Our memory care community is built on compassion, dignity, and the belief that both you and your loved one deserve to be supported through every part of this emotional time.

Get in touch with us today to see how we can support you and your family.