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Dementia Grief & Loss: After a Dementia Diagnosis (Part 1 of 4)

A dementia diagnosis is a life-changing event. For individuals and their loved ones, it breaks life into two parts: before the diagnosis, and after the diagnosis. Every person will go through stages of grief and loss throughout the dementia journey, and each of us will face it in our own unique way.

“Feelings of grief and loss go hand-in-hand after a dementia diagnosis,” says Andrea Campisi, Marketing and Admissions Director of The Reutlinger Community, a Continuing Care Retirement Community in Danville, CA. “Unlike many other health situations you or your loved one face, grief and loss are interwoven into the disease, and the feelings can and will continue throughout the dementia journey. These are completely normal emotions, but they can be overwhelming and hard to deal with, whether you’re a family member, a caregiver or the person diagnosed with dementia.”

In this four-part series, we explore the stages of dementia grief and loss for those affected. Understanding the process, accepting your feelings and learning healthy ways to cope with the emotions will help you and your family during these difficult times. Walking this path is never easy, but with compassion, understanding and acceptance, you and your loved ones can have a meaningful, fulfilling and loving journey.

The Lightning Bolt: Receiving a Dementia Diagnosis

You know that something is “off.” Whether you’ve noticed that you’re becoming more confused or are having more and more difficulty with daily life, or if you’ve seen your parent start acting erratically, your gut is telling you that this is isn’t just a symptom of normal aging. And while you know it’s a distinct possibility, receiving the official notice from a physician can be devastating, no matter how much you may have prepared yourself for it.

People can react in a variety of different ways following a dementia diagnosis. It’s common to feel numb or overwhelmed. You may feel an instant sense of loss and hopelessness. Or you may be completely disbelieving. It’s important to recognize that all these emotions are normal stages of the grieving process and accepting and working through them will help you work through the diagnosis. Here are some emotions you or a loved one may be feeling:

  • Anger. Your life has suddenly shifted courses and the plans you’ve made for the future are no longer possible. You’re suddenly not in control of your life or your health. It’s incredibly unfair, and you’re angry – at the doctors, God, the universe and everyone else.
  • Relief. You finally know what’s “wrong” with you. The changes you were seeing or experiencing finally have a name, and you can make a course of action to deal with them. You no longer have to wonder what is happening.
  • Denial. It’s impossible to believe that you or a loved one has dementia. You were perfectly fine the last time you went to the doctor. It simply can’t be the truth – the doctor must be mistaken.
  • Depression. Life is changing, and there’s nothing that can be done about it. Everything you’ve hoped for is now gone and the future ahead looks bleak. There’s no point in trying to do anything about it.
  • Fear. What will happen to you? How will your family be affected? What does the future hold? When will memories and abilities be lost?

Understand that feeling all these emotions – and others – are a natural part of the grieving process. We will all react to the diagnosis in our own way and at our own pace but accepting those feelings and knowing where they’re coming from will help you and your loved ones move forward from the diagnosis.

Dealing with Grief & Loss After Diagnosis

There are two types of grief that can occur following a dementia diagnosis. The first is anticipatory grief, which is mourning for the losses that we know or expect will happen in the future. The second is ambiguous grief, which is mourning the loss of a person while they’re still “there.” Both types of grief can be difficult to recognize but are important to address. If you or a loved one are struggling following a dementia diagnosis, here are some coping tips to help manage your feelings and move forward.

Accept what you’re feeling.
Don’t bottle your emotions up. It’s okay to be sad, angry or frustrated. These can be cathartic and even healthy emotions to experience, so it’s good to name them and work through them. It’s also okay to feel conflicting emotions at the same time, such as love and anger, relief and denial, fear and acceptance. However, if you or a loved one find that these feelings linger on and on or become worse over time, it’s possible that depression or anxiety is at play. You should consult with a professional to see if these symptoms can be treated through medication or therapy.

Recognize that loss and grief come in waves.
You may be fine and accepting of the diagnosis one minute, and then suddenly angry or fearful the next. As the disease progresses, it’s also common to experience grief and loss again and again as you or your loved one lose different aspects of themselves. “Acceptance” doesn’t mean that you’re okay with what’s happening; it merely means that you recognize the reality of the situation and are dealing with it in a positive and helpful way.

Stay connected with people you care about.
It’s easy to feel isolated and lonely after a diagnosis and withdraw from friendships and activities you once enjoyed. Instead, this is the time to reach out and spend time with those who care about you. Meet up with friends for coffee or keep attending your weekly knitting groups. While it can feel like your “normal” world has ended, remember that there are still many things you or your loved one can do and enjoy, even with dementia.

Seek information and look for support.
Learning as much as you can about dementia will help you and your loved ones be more equipped with the tools you need to walk this journey. It’s also a good idea to look for support groups, both for those with the disease and for families dealing with the diagnosis. A good place to start is a senior living community that provides Memory Care services like The Reutlinger Community. Through senior centers, communities and local resources, you can find support groups, respite services, home care and social clubs that can help you build a support group for now and the days ahead.

For more information about dementia caregiving, or to learn more about our community, mission and values, please contact us at 925-272-0261.

Premier Senior Living, Dedicated Care

The Reutlinger Community’s mission is to provide high quality health care and social support services in a life-enhancing and stimulating environment with a commitment to Jewish values.

Offering Assisted Living, Enhanced Assisted Living, Memory Care, Skilled Nursing and Rehabilitation, The Reutlinger Community provides a continuum of care that allows seniors to live a life-enhancing and stimulating environment. Located in Danville, California, The Reutlinger Community’s newly renovated, 110,000 square foot community combines the comfort and familiarity of home with seasoned senior care and skilled nursing specialists to suit any senior’s needs, allowing them to live the life they choose with freedom and security.

Because we specialize in a continuum of care, our residents never need to worry about leaving the community they call home or wonder what will happen when they need some more care. Residents and families alike can have peace of mind knowing that there are full-time licensed nurses available, along with activity coordinators, social workers, caregivers, a concierge and Rabbi who focus solely on helping each resident thrive. Even better, our services and amenities are equal to those of a state-of-the-art resort. This is the lifestyle and care that your loved one deserves.

At The Reutlinger Community, seniors have numerous opportunities to engage in award-winning programs that are designed to engage the mind, renew the spirit and provide opportunities to meet new people and learn something new. Whether residents are enjoying our art program and museum, listening to a lecture or educational program or attending spiritual programming and our wide range of activities, there’s something for each resident to love. Participate as much or as little as you like, the choice is all yours.

For more information or to schedule a personal tour, contact us today.