Anytime someone important in our lives dies, we are left processing complex feelings of grief and loss. But what happens when the person who we’ve lost isn’t technically dead but still gone?
This feeling - known as ambiguous grief - occurs when a loved one has Alzheimer's or another form of dementia. Ambiguous grief can take hold of us in unexpected ways, making it harder to navigate increasingly difficult relationships with our sick loved ones as we try to maintain our bonds with them for as long as possible.
The best way to help you cope with this kind of grief is to understand it and, by extension, understand how to move forward meaningfully and make the most of the time you can share with your loved one.
Ambiguous grief is grief that occurs when you’ve suffered a loss without closure. Specifically, it occurs when you grieve someone who is still alive or someone lost or missing. By nature, ambiguous grief is an abstract emotion and can be difficult to categorize.
This emotion is different from anticipatory grief, which comes after a loved one has been diagnosed with a terminal illness who has not yet died. However, the two may have some similarities.
Ambiguous grief comes when someone we love becomes someone we do not recognize. They may not recognize us or, if they do, their behavior has changed so drastically they seem to become a different person.
Noted psychology researcher and educator Dr. Pauline Boss coined the term ‘ambiguous loss’ in the 1970s. Her work in family psychology developed a therapeutic approach to understanding and treating a kind of grief that had gone unacknowledged until that time. Before recently, ambiguous grief wasn’t even recognized as grief; instead, it was misdiagnosed as trauma or depression.
Two types of loss characterize ambiguous loss, physical loss and psychological loss.
For this article, a psychological loss is our focus because it is the type experienced by anyone whose loved one – friend, spouse, parent, or another family member – has been diagnosed with Alzheimer's or dementia. Whatever the cause, ambiguous loss is difficult to navigate and, more importantly, difficult to move beyond. After all, the person you love is still there, even if they appear sick and unwell.
The problem is not physical distance but the stranger looking at us from a familiar face. They may act irrationally or out of character. They may say hurtful things to you, even things you know that your loved one would never say. They may be unable to take care of themselves at all.
Ambiguous grief can feel both very different from and identical to most other forms of grief. Many times, those experiencing ambiguous grief don’t even realize that is what they have. As mentioned above, many times ambiguous grief is mistaken for depression or a reaction to trauma.
The most common reactions to any kind of grief are anger, sadness, and even guilt. The impending (or ongoing) loss of someone you love can spark immediate sadness and fear within you. With Alzheimer’s, it’s all too easy to feel like the person you love is slipping away slowly or, even worse, turning into someone who is completely unrecognizable.
You may feel angry that this has happened to someone you love and frustrated. No one can truly prepare or anticipate Alzheimer's disease. It’s easy – and all too understandable – to be angry at how unfair the situation is.
Additionally, you may feel frustrated that you cannot do more for your loved one, whether in their treatment or care. These are the most common emotions associated with grief. While they may not be universal in the intensity or order you feel them in, these emotions can take you by surprise even if your loved one is still alive.
Guilt comes after, as you may wish there was something more you could have done to help them, even if you rationally know that isn't the case. If your loved one is a spouse or parent, you may feel like you didn’t put forth enough effort when times were good. While it’s normal to feel this way, it is equally important to realize that you are not to blame for the situation in any respect.
Since ambiguous grief is an experience that those who haven’t experienced may not understand, you may also feel isolated and alone. You may struggle to express grief about the loss of a person when they are still living and, in many cases, still physically available.
You might feel like expressing these emotions would make you selfish, though we assure you they do not. Alternatively, you may be afraid to burden others in your family, especially children or siblings.
These feelings may lead you to isolate yourself from others who care, creating a self-perpetuating loop.
Isolation leads to loneliness if you were close to your loved one for a long time. The loss of anyone we love can be devastating but combined with the loss of a close companion like a spouse or partner, loneliness may feel overwhelming and insurmountable.
Ambiguous grief can make you feel stagnant. That is one of the most telling indicators associated with the emotion that may not be immediately obvious.
This kind of grief makes us feel stuck in the present, unable to move forward, and unable to process a perpetually ongoing loss. According to Dr. Pauline Boss, “ambiguous loss can freeze the grief process. People can’t get over it, they can’t move forward, they’re frozen in place.”
With death, there is closure; we can begin to heal. Oftentimes, ambiguous loss leads to a period of uncertain waiting. There is no closure to the situation. Without closure, we don’t feel as if we can move on.
The grief is compounded by the difficulties stemming from the loss of a person who is still physically present even if they are emotionally and psychologically gone.
Depression is a common symptom of ambiguous loss. When you are stuck in perpetual limbo while your loved one lives with a disease like Alzheimer’s or any type of dementia, it is easy to feel trapped inside these feelings.
This can lead to a period of situational depression – a type of adjustment disorder that follows any kind of traumatic event. If your traumatic event is ongoing, as is often the situation as you come to terms with a loved one's disease, it can be hard to resolve.
If you do feel symptoms of depression, we encourage you to reach out to a mental health care provider as soon as possible.
When your loved one is undergoing a debilitating, progressive illness like Alzheimer’s, it’s easy – and more common than you might realize – to become overwhelmed. Nothing can prepare us for this kind of loss and the grief that accompanies it. However, there are ways to help you understand and cope with the situation.
One of the most beneficial things you can do in this situation is simply to give your feelings a name. Once you have identified ambiguous grief as the process that you’re currently undergoing, you are better prepared to understand it and, in the process, begin to move forward. Let yourself feel your grief and acknowledge the loss. Permit yourself to feel these emotions without punishing yourself for them.
It’s important to acknowledge that, even as you understand what you are experiencing, it can feel very different to others who are undergoing the same grief process, even in your own family. Do not compare your journey to theirs, even as you know you are both in this together.
This realization can be one of the most important steps in the coping process. Logically, this seems like an obvious conclusion. However, seeing a loved one behave in a manner that is utterly unlike everything you’ve come to know and love about them can be difficult to process emotionally. When we see the person we love seemingly disappear, we may struggle to see anything but the disease.
We must put energy into understanding the disease and the effect it has on them. When you understand how and why these changes are happening, it can become easier to parse our anger and sadness.
More than that, the present does not undermine the past you had with that person. Whatever is happening right now does not erase the years and experiences you shared with your loved one. While the present is painful, it does not change the beauty of your life together.
Acknowledging any irreversible change in a loved one can be difficult. Ultimately, it opens us to the truth that our relationship with the person has changed. It will never be the same. The realization will hurt, but it will never diminish the relationship you once had with them. It will allow you to continue being close to that person for as long as possible.
This isn’t going to be easy. It may be the most difficult thing you ever do. However, you owe it to yourself – and your loved ones – to try.
Ambiguous loss can only truly be understood by someone who has experienced it. As you undergo this painful experience, there is no reason for you to do so alone. Reach out to your friends and family members as a first step. Facing this ordeal alone will solve nothing and, at worse, might be a disservice to your loved one and your ability to communicate and care for them.
That said, there are other, more dedicated resources to help you cope with this loss.
Seek out people who understand your situation. You can find support groups for ambiguous loss (both physical and psychological) all across the United States and Canada.
You can find them dedicated to family members, spouses, and caretakers of those with Alzheimer’s or dementia. For more information about support groups, see our resource list in the FAQ portion of this article.
We cannot stress enough this – therapy is often the most invaluable tool to help you cope with grief and loss. Trained grief counselors offer support, advice, and (most importantly) a sounding board for your emotions and feelings.
With their help, you are better prepared to process your grief and move forward from it. And if you aren’t getting your needs met by your current mental health provider? Seek out another one that better suits your needs.
Journaling can be one of the best coping mechanisms for grief. It helps you focus on your emotions. The act of writing things down forces us to slow down and acknowledge our thoughts and how they connect to those emotions. This opportunity gives us a chance to reflect on the actions, behaviors, and emotions of ourselves as well as the people around us.
Keeping a journal can also help us keep track of our progress through grief. It can be easy to feel like nothing has changed and that we are trapped in the fog of negative emotions associated with grieving. By regularly cataloging your emotions, you can see how they change – and improve – over time.
This is easy to forget when we are focused on the needs of others or our loss. However, you still need to take care of your most basic needs. While we know this is probably the last thing on your mind, make sure you are getting enough sleep, eating regularly, and getting adequate exercise. You’ll position yourself to handle the stress of your situation when your basic needs are met.
Sometimes you can only focus on getting through the next few days or even minutes. That’s okay. Allow yourself that time to breathe and give yourself that moment to feel your grief.
Whether you are a full-time caretaker or a family member visiting a loved one, taking care of someone diagnosed with any form of dementia or Alzheimer’s disease can be challenging.
However, it doesn’t have to be the Herculean task it might initially appear. Indeed, you'll likely feel overwhelmed by the prospect at first. With some ample research and the right plan, you can better prepare yourself for almost any situation that comes your way.
The key to success with helping a loved one through Alzheimer’s disease is education. Caring for someone with dementia is not always an intuitive process; it comes with unique, unexpected challenges that can blindside you.
Educating yourself about the disease your loved one has can help you feel less fearful about the situation and give you a better foundation for handling any surprises that come your way. It can also help with your feelings of helplessness, reduce future frustrations, and offer some control over a situation that often feels overwhelming.
Learn about the disease - not only so you can help with treatment but also help maintain your connection and relationship with them for as long as possible.
When you become a caregiver, consistency will do you more favors than anything else. Establishing a daily routine can help both you and the person with the disease know what to expect on any given day.
Writing down that schedule and keeping it on hand for your loved ones to see each day can help them know what to expect as well. Make sure this schedule is followed by all relevant family members as well as any visitors.
Anticipate that some of your tasks may take longer than you expect, and that time frame may differ from day-to-day. While having a schedule is essential, it’s equally important to allow for some flexibility in your day just in case you experience any of these setbacks.
Taking your time will help you both in the long run, as it can minimize frustrations for the person with the disease if things do not go as planned.
Compassion and empathy are the two greatest strengths you can have as a caregiver. Truthfully, those are the most important skills you can offer in any relationship, but this is especially true when you are working with anyone suffering from dementia.
They are likely to become easily confused and disoriented as time goes on, meaning you’ll need to dedicate more patience and care to help them with everyday tasks. You may also need to explain things multiple times and be prepared to answer the same question indefinitely.
Your loved one's comfort is far more important than maintaining perfection. As their condition progresses, you will want to incorporate more and more flexibility into your schedule and your routine.
Whether it’s your daily schedule or the conversations you'll have with your loved one, it's important to avoid complicating your lives more than necessary. Keep your conversations, instructions, or any guidance offered to the person short and simple.
Make sure you use smaller, easy-to-understand words and uncomplicated phrases. Use repetition as much as necessary, especially in later stages of the disease.
This goes for daily tasks as well – take care of one thing at a time. Try not to overwhelm your loved one by pointing out future things that need to be done while they are in the middle of the first task. This can lead to confusion, frustration, and even anxiety if they feel pushed or uncertain.
You don’t have to do this alone. More importantly, you shouldn’t try. Support can come from many sources, whether it is from your family, professional therapists, other caregivers, or support groups specializing in Alzheimer's and dementia care.
While it may be difficult to admit you cannot do everything on your own, know when you are placing unfair expectations on yourself. Knowing when to ask for help is just as important as any other skill you can learn.
Part of being an effective caregiver is being realistic about the progression of the disease. In this situation, successful caregiving comes down to maintaining your loved one's comfort and health for as long as possible.
There will always be good days and bad days. Learn to adapt and prepare for each, especially as the disease progresses. Alzheimer’s is a terminal disease and there is no known cure. Day-to-day care can look very different depending on what stage of dementia your loved one is in.
The status quo is constantly shifting. There may come a time when in-home care is no longer sufficient and you may have to change your strategy and your care options.
Some part of this planning may come in the form of considering after- death arrangements like planning a funeral or choosing an urn. Be prepared for change. It is the only constant in this process.
As we’ve said repeatedly, grief is a complex thing. You may experience an overabundance of emotions. Many of those might be unexpected and others may feel all too familiar.
If you’ve already been experiencing ambiguous grief, you may find yourself reacting in a seemingly irrational manner when your loved one does pass. However, this isn’t uncommon, nor should you feel as if you are doing things incorrectly. Here are some of the emotions you may feel:
Anytime someone close to us dies, we find ourselves traveling the five major stages of grief: denial, anger, bargaining, depression, and acceptance. The best way to describe them is by acknowledging how each of them makes us feel at the moment.
For example:
Stages of grief offer a roadmap of your emotions after someone has died, but the journey is unique for everyone. Where you are along that journey can change from week to week (or even hour to hour). You can even feel all those emotions simultaneously or you may not even experience some of them at all.
It is not uncommon to feel relief after someone dies, especially when they are at the end of a terminal illness like Alzheimer’s. It is incredibly difficult to watch someone we love suffer, even if they do not always seem aware of their suffering.
In many cases, after someone with dementia has passed away, it can feel as if you’ve already grieved them months or years before their death. You may even feel guilty for being relieved. This is common, but you should not blame yourself for hoping your loved one has found peace at the end of their journey.
If you’ve been someone’s primary or secondary caretaker throughout their illness, you may suddenly find yourself at loose ends once they pass. This feeling is just as common as any other stage of grief.
Let yourself rest without making any big or life-altering decisions. You need to take time to sort out your feelings and your future on your own terms.
Everyone’s journey with grief is unique. For more information on what to expect during the grieving process, we invite you to read our article on Grief and Grieving.
There are a lot of facets of ambiguous grief that we haven’t been able to touch on more thoroughly in this article. However, here are some of the most frequently asked questions you may have about the process, as well as understanding dementia, Alzheimer’s, and the task of becoming a caretaker.
Ambiguous grief is a complex collection of emotions. Here is a quick review of the coping mechanisms we outlined earlier in this article:
One of the worst things you can experience during an already difficult time is the added stress of fighting with your family. These conflicts may not be able to be completely avoided but we have some tips on how to handle the situation:
The sooner you begin discussing your parent’s needs, the sooner you will know what commitment your siblings can offer in the situation. Waiting until the last minute can make things even more stressful for everyone.
Keep your expectations realistic. Generally, caregiving responsibilities will not be equally divided among your siblings or other family members. You may want to focus on what your sibling can do instead of what you want them to do.
Don’t let old conflicts or painful memories dictate this situation. Put that aside and focus on moving forward and making progress with the issue at hand – your parent’s wellbeing and health. If you can’t do that, consider mediation as a valid strategy.
No one in your family is a minder reader. Before you get angry with them, take the time to explain the issues you are experiencing in a way they can understand. It might take some time, but you also might find they are more willing to help once they realize there is a problem.
There may be some siblings that cannot or will not assist in caretaking duties. If they won’t help you resolve the issues, you may have no choice but simply drop the issue. You cannot change someone’s nature; trying to do so will only hurt you the most.
If you cannot reach common ground with your fellow siblings, remember that your health and wellbeing are equally as important. You need to take the time to breathe and look after yourself as much as you do your parents.
If you anticipate there may be more difficult situations after your parent’s death, we recommend reading our article on Navigating Difficult Relationships After Death.
Because dementia and Alzheimer’s affect each person differently, you may need to modify how you speak depending on the person and their communication needs. Still, there are some universal tips for having a meaningful conversation with someone afflicted with these conditions.
Before you go into a conversation, make sure you are ready. Plan to spend ample time with the person and try to do so in calm, well-lit surroundings. Limit distractions and noise so you can both give your full attention to the conversation.
We know that sometimes conversations like this can be hard. One thing that will help everyone involved is to make sure you focus on being positive thorough the exchange. Keep your voice calm and pleasant while always being respectful.
Many times, people with Alzheimer's or dementia may be confused and uncertain about their situation and themselves. They may even remember things incorrectly or confuse fictional events with those that happened in their real lives. If this happens, avoid trying to convince them that they are wrong if you can.
It may make them anxious and more unsure when speaking to you. Focus on their emotions and reassure them whenever possible. Being affectionate can help with these, especially when it comes to physical affection. Hugging, holding their hand, or any simple touches will help.
Make sure you speak slowly and carefully when you are talking to your loved one. Keep your sentences short and simple. Most importantly, slow down! If they struggle to find the words or seem to be having difficulty, do not be too hasty to finish sentences for them or assume you know what they are saying.
You also want to avoid complicated questions. Don’t ask them to remember something specific but rather build the conversation from what they tell you. Be prepared to repeat yourself during the conversation. Avoid using pronouns whenever possible and use names or people, items, or places.
Nonverbal communication cues are just as important as words. Make sure your posture is open and comfortable. It will help keep your loved one comfortable while you chat. Be aware of your facial expressions, movements, and use physical touch to help ground them at the moment and keep them at ease.
Alzheimer’s is a disease that worsens over time. However, the rate of progression varies from person to person. There are three main stages of Alzheimer’s as well as a preclinical stage that is not diagnosable.
Fortunately, there are many support groups for Alzheimer’s and dementia caregivers and friends or family members experiencing ambiguous grief.
The best resource for support groups is The Alzheimer’s Association, as it will have research and resources designed around the disease. If you are also a caregiver, The Alzheimer’s Foundation of America (AFA) has many resources that may be helpful to you. The Well Spouse Association specializes in assisting spouses and partners of those diagnosed with dementia and Alzheimer’s.
Other resources:
One local resource is your area’s Office on Aging. In America, each state (as well as The District of Columbia, Puerto Rico, Guam, American Samoa, and the Virgin Islands) has an Area Agency on Aging that can offer assistance for eldercare of all kinds, from independent living to hospice care.
The ACL (Administration for Community Living) website offers an eldercare locator to help you find resources in your community. You only need to input your zip code or location.
For local resources dedicated to grief and loss, you can find a dedicated search-engine for support services at the HealGrief.Org website.
The Alzheimer’s Association has a Local Resources tab that allows you to search for organizations in your area.
There is a reason that Alzheimer’s grief is often called “the long goodbye.” Dementia and Alzheimer’s can rob us of the person we love long before they physically pass away.
It can be a long, painful, and ultimately heartbreaking journey to watch, especially if you are involved in their care. Despite your pain, you can move forward from your grief and loss. With time, care, and perhaps a little hope, you will heal from this journey.
Further reading:
Healing After Loss Through the Grieving Process
When Your Parents Need Assisted Living
Loss And Difficult Relationships
March 2, 2021 by Frances Kay