Living Grief- Anticipatory Grief
When a family member lives with dementia, providing care at home is not just a physical task but a profound emotional burden. Many people in this situation go through a psychological process that is hard to define, yet very real: this is known as anticipatory grief. This process does not begin when the loss becomes final; it starts much earlier. It is the experience of feeling like you are losing a loved one with dementia while they are still alive.
Anticipatory grief is especially common when an illness is long-term and involves continuous decline. Dementia is a typical example: while your loved one is physically present, so many things are changing. Shared memories fade, the relationship is transformed, and often it is no longer possible to talk or simply be together as you once did. During this time, the caregiver slowly says goodbye to the person they once knew.
This type of grief is not tied to a single moment. It is a journey where your old life, familiar roles, and visions of a shared future gradually recede into the background. For many, this is confusing and difficult to interpret because the outside world often does not recognize this as “real” grief. This can easily lead to loneliness or the feeling that “something is wrong with me,” when in fact, it is a completely natural reaction.
Signs of Living Grief
Fluctuating Emotions
Emotions during this time often come in waves. One moment, you might be focusing on daily tasks, and the next, you are suddenly overwhelmed by sadness or helplessness. Anger, fear, and even guilt may appear—for example, feeling guilty for experiencing the situation as a loss already. Many caregivers find themselves being present and yet emotionally distant at the same time, as if “switching off” because everything they have to experience is just too much at once.
Anxiety
Anxiety about the future is also common. What will happen later? How long can home care be sustained? How will family roles change? These questions can constantly linger in the background, even when someone is trying their best to “just keep going” in their everyday life.
Physical Symptoms
In addition to the emotional weight, physical symptoms may also appear. Persistent fatigue, sleep disturbances, difficulty concentrating, or “brain fog” are experienced by many. Physical tension is also common, manifesting as chest tightness, headaches, muscle pain, or digestive problems. Often, there is no specific medical cause behind these, yet they are very real. The body reacts to the long-term emotional strain that the combination of caregiving and the sense of loss represents.
None of this is a sign of weakness or “overreacting.” This process is part of grief—even if someone with dementia is still with you. During anticipatory grief, you are already saying goodbye to a former life and a different kind of relationship. Understanding this can help caregivers ensure they do not remain alone with these feelings and can more easily accept that what they are going through is natural.
Protecting Yourself
Home care is not just about the other person; it is also about taking care of yourself in the process. Processing loss is not the work of a single moment but a long road—and even at the beginning of this journey, there is a need for attention, understanding, and support.
Speak it out!
One of the most important steps is not to try to hide what is happening inside you. Saying it out loud—even just to yourself—that “yes, this is already a loss” can help a lot. Even though the other person is still here, the relationship is changing, and this can be painful. Accepting your feelings is not weakness; it is the beginning of internal relief. Many find that writing down their thoughts—in a notebook or a letter they may never send—helps bring order to their swirling emotions.
In everyday life, consciously allowing space for remembering and connecting can also provide a sense of stability. You don’t have to wait for a final moment to talk about meaningful things. If there is still an opportunity, it is worth asking simple questions: what feels good right now, what is still important, what should we remember later. These small conversations can help you not just approach the situation from the perspective of loss, but also find value and connection in the present.
Talk it through!
So many people try to carry this burden alone, even though the combination of caregiving and “living grief” is extremely exhausting. It is important to have someone to talk to—whether it’s a family member, a friend, someone in a similar situation, or a professional. Sharing your feelings is a necessary step toward not being alone. It can relieve tension just to have someone listen and understand what you are going through.
Conflicting Emotions
Many caregivers are frightened when conflicting thoughts appear within them. For example, in the midst of exhaustion, a momentary wish for relief might flash through the mind, followed immediately by guilt. These feelings are very human. They do not mean that you love someone with dementia any less; they mean that you are carrying too much weight at once. If you try to understand these feelings instead of suppressing them, it can help make them feel less oppressive.
Walks and Conversations
It is easy to get completely lost in the tasks of caregiving. However, it is vital to step out of this role occasionally. Even a few hours can matter: a walk, a conversation, or an old hobby. If possible, involve others in the caregiving; you don’t have to carry everything by yourself.
Rest
The body often signals overload sooner than we realize it consciously. Persistent fatigue, difficulty sleeping, or physical tension can all indicate that it is time to slow down. Sufficient rest, regular meals, and even a little bit of movement can make a big difference in how well you cope with daily life.
Caring for a Loved One with Dementia: How to Find Time for Yourself – Dementia in Practice
Setting Boundaries
It is also important to set boundaries. Caring for someone does not mean that you have to completely give up on yourself. It is okay to say no, it is okay to ask for help, and there can be days when not everything revolves around the illness. This is not selfishness; it is the prerequisite for being able to remain present in the long run.
What gives meaning to the present?
While the future becomes uncertain, it helps to repeatedly search for what gives meaning to the present. This could be a small shared moment, a conversation, a memory, or even carrying forward something important to someone with dementia. Self-expression—writing, drawing, or any creative activity—can also help give shape to internal tension so that it doesn’t just swirl around inside you.
Grief experienced in advance is not always visible, and it is often hard to find words for it. Yet it is very real and can carry the same weight as a later loss. This is why it is important that those living through this do not trivialize their own feelings. Turning your attention toward yourself, seeking support, and finding small things to hold onto can help you maintain your emotional balance during this difficult time.
Remember: you cannot pour from an empty cup. Your well-being matters just as much as your loved one’s. For more support on navigating guilt, preventing burnout, and building emotional resilience, visit our Caring for the Caregiver: A Guide to Mental Health and Emotional Resilience – Dementia in Practice Sanctuary. You are not alone in this journey.
Important Disclaimer
The information and advice presented on this website and in this article are for informational purposes only. They do not constitute a medical diagnosis or individual therapeutic recommendations. The operator/author of the website assumes no liability for any direct or indirect damages, health issues, or misunderstandings resulting from the use of this information. Everyone applies the described methods at their own risk. Please consult your physician before making any lifestyle changes or applying any complementary therapies.
About the Author
Suzanne Sandwiese – Dementia Caregiver, Mental Health Assistant
I have more than 12 years of practical experience in caring for elderly people and patients living with dementia. My goal is to translate knowledge about dementia into understandable, practical advice that can be applied in daily life, thereby helping families live together with the disease. As the author of several professional books and the founder of a popular Facebook page, my mission is to provide clear and, above all, usable guidance to all those who care for loved ones living with dementia.