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Grieving is an immediate and complicated experience when a loved one faces dementia. Caring for a loved one with dementia, unfortunately, involves watching your loved one slowly decline. This process can be frustrating because, although you want to do everything you can to slow the progression of the disease or stop the disease from spreading, there is nothing you can do. Learn to be in the moment with your loved one and cherish the time you have with him or her.

The journey of caring for someone with dementia is a difficult one, and the grieving process will be different for each person. Those who have lost someone to dementia will tell you that the grief is as disordered as the progression of the disease itself. Losing a person to a heart attack, for example, can result in loved ones experiencing the typical pattern of grief with the following well-studied stages:

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

But if your loved one has dementia, the grieving process begins while your loved one is still alive. This makes grieving a lengthier and more complicated process.

Dementia's Continuous Sense of Grief and Loss

Many people associate grief with the feelings of sadness and loss that often occur after someone you love passes away. But the grief process for dementia caregivers starts long before a loved one dies. In fact, the grief cycle springs into action as early as the day your relative is diagnosed with the disease. This sends the caregiver on a long, slow journey with multiple losses along the way. The cognitive declines associated with dementia often force caregivers to grieve in a way that feels more like they're losing pieces of their loved one on a daily basis. You might pass through the mourning cycle countless times, maybe experiencing feelings of grief many years before your loved one’s life ends.

Common Types of Grief for Dementia Caregivers

You may live on a never-ending rollercoaster of emotions so it can be perfectly normal to mourn your mom or dad as you care for them. Once you accept their reality, you might cycle through the feelings of grief again and again. The order might not be so predictable. You might feel angry one day and sad the next week. Punctuate this with an occasional happy moment, quickly followed by guilt for daring to ever feel happy while your loved one is suffering. In short, it’s time to rethink the notion of grief when someone you love has dementia.

Anticipatory Grief and Ambiguous Loss

The mourning process is a complex subject and a moving target and caring for a loved one with dementia adds extra layers of complexity. Both people with dementia and their caregivers may worry about what might happen in the future. This variety of grief is often described as “anticipatory” because we think about how dementia might change us or our loved one. We fret about the future loss it will bring into our lives.

It may not surprise you to learn that caregivers can experience a strong sense of loss while their loved one with dementia is still living. This feeling is called “ambiguous loss.” Even though you may be sitting right beside your parent, you know that something is different. This confusing situation can bring on feelings of grief and sadness.

"healing is not linear"

The Grieving Process for Dementia Caregivers

Grief counselors say the stages of grief form a structure of sorts that help us come to grips with the fact that we have lost someone we love. The journey through these stages helps us move forward and learn to live without them. Each person progresses through the stages differently and at different times, but all of that can be more unpredictable when a loved one lives with dementia.

Denial

When you first hear the words “yes, it’s dementia,” it’s normal to disbelieve it. A state of denial is completely natural. It helps us cope as we get used to the idea that our parent’s life has fundamentally changed. You might find yourself wishing that your loved one isn’t sick, that the diagnoses is a mistake, and that somehow they’ll get better.

You might try to sell yourself on the idea that the person hasn’t changed. After all, maybe they are just having a bad day! You might even tell yourself that there’s nothing wrong with the way he or she is acting. While inaccurate, this fanciful thinking is not abnormal. Not in the least. If you recognize the signs of denial when you look in the mirror, acknowledge the feelings and give yourself a break.

Anger

Once you begin to accept that someone you love has dementia, the next stop on the grief train is Angerville. You might lose patience with your loved one. You could feel trapped by the unending demands of being a caregiver. You might become annoyed with siblings or other family members who are unwilling or unable to share the responsibilities equally in the caregiving tasks.

Guilt

Then you think to yourself, “Oh my gosh! My father is suffering and I’m sitting here angry and feeling sorry for myself! What kind of ungrateful child would be thinking thoughts like this? And how can I say I really love my dad when I go out and have a fun evening with friends instead of spending time with him?” These thoughts mean one thing: You’ve fallen into the guilt trap. It’s a typical, even expected sign of the mourning process.

Sadness

Another emotion that’s completely normal: feeling very sad. You might think you can’t go on any longer. You cry a lot and even decline social activities because you’re just not up to it. Although it may feel right, isolating yourself can perpetuate the sadness. Increased contact with friends and family can be an effective antidote for sadness.

Acceptance

After passing through denial, anger, guilt and sadness, you might be ready to accept the situation. You are learning to live with the reality that someone you love has dementia. You may rediscover your sense of humor and find a deeper meaning in the way dementia has touched your life. You gain a sense of appreciation for the contributions you are making for your loved one, whether they can fully acknowledge it or not. Maybe you realize you are not quite so caught up in the whirlwind of tasks and emotion that can come with living with a dementia patient. This, in turn, helps you slow down a little as you start to open up to living in the moment.

raindrops and rainbow

How do Caregivers Manage Grief?

After identifying the common markers of grief for dementia caregivers, now what? Identifying the feelings and developing the strength to go on is important. But what can you do to feel better?

  1. Feel your feelings. Instead of trying to hide or push away uncomfortable feelings, try to feel them fully. After all, sadness and loneliness come with the territory when you’re a caregiver. Some caregivers report that when they let go and embrace their feelings, they wind up feeling a sense of relief. If you’re willing to give it a try, you’ll have a chance to work through them. Remember that it’s possible to feel opposite feelings, such as love and exasperation, at the same time.
  2. Think of grief as a journey. When we read about the grieving process, there’s a tendency to think that once we pass through all the stages, we will reach the other side and be free of it. Many people experience sorrow and other emotions related to grief on more than one occasion. While this may be confusing and painful, it is also normal. Keep feeling your feelings and know that, like everything in life, this too will pass.
  3. Know that your experience of grief is unique to you. If only we could predict the course of the grief process but that’s not how this works. It’s not a project where you can grab a calendar and choose a completion date. How long should you plan for grieving? As long as it takes. Here’s how the Alzheimer’s Association puts it, “Your experience will depend on the severity and duration of the person’s illness, on your own history of loss and on the nature of your relationship with the person who has Alzheimer’s.”
  4. Compare notes with a friend, family member, or counselor. Who’s the best person to share your feelings with? Someone you trust. That might be a close friend, a family member who knows the dementia patient, or a licensed professional therapist.
  5. Stay in touch with the outside world. One of the risks of caregiving is that you’ll wind up on an island of isolation. As your time and energy are increasingly dominated with being a caregiver, the things you enjoy in life might drift away. Fortunately, feeling isolated isn't permanent. Treating yourself to an evening out with friends can decrease stress and help you be a better caregiver.

Overcoming Grief as a Dementia Caregiver

When your loved on passes away, you may experience a sense of relief. This relief may also come with a deep sense of guilt. But as a dementia caregiver, you will no doubt have already stared guilt in the face!

Be good to yourself. You have been through a traumatic experience that many people may not understand. Take care of yourself and give yourself time to get back to a normal life that is no longer full of caregiving duties. Accept that you may feel good one day and horrible the next. Grieving is a long process and you will need to be patient.

Caring for someone with dementia is difficult and so is grieving for them. Although it sounds cliché, the best strategy to follow is taking on one day at a time. Know that grief will subside with time and remember the happy moments you shared with your loved one.

Resources

Alzheimer's and Dementia Support Group

Grief and Loss as Alzheimer's Progresses

Feelings after a diagnosis and as dementia progresses

Ambiguous loss and Grief in Dementia

Get professional dementia care services from Home Care Assistance today.

About the Author(s)

With over 20 years of experience writing for leading healthcare providers, Rob is passionate about bringing awareness to the issues surrounding our aging society. As a former caretaker for his parents and his aunt, Rob understands first-hand the experiences and challenges of caring for an aging loved. Long an advocate for caregiver self-care, his favorite activities include walking on the beach, hiking in the coastal hills of Southern California and listening to music.

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