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Coping with Grief and Loss When a Loved One Has Dementia

Monday, September 27, 2021

When your loved one is going through a dementia journey, it can feel like it’s a long string of little losses joined together. The progressive nature of the disease means that loss and grief come in waves, hitting harder one day than the next. There’s no one path that grief takes in this process – everyone’s experience is different. This is especially true for caregivers who are watching changes happen every day with their loved one.

Knowing how to cope with your feelings will help you to come to an acceptance and understanding of your and your loved one’s new normal; however, acceptance doesn’t mean that you have to think everything is sunshine and roses. Acceptance simply means coming to terms with the reality of what’s ahead. It means understanding that this will be hard at times, and you’ll feel grief and sadness at times. But it also means that you give yourself permission to feel, love, live in the moment and make the most out of the time you and your loved one have together.

The Five Stages of Grief

About 50 years ago, psychologists and experts began talking about the “five stages of grief,” or a noticeable pattern in the way that individuals go through the process of loss and grieving. The five stages are denial, anger, bargaining, depression and acceptance. These stages are not necessarily linear – individuals can jump back and forth between different stages (sometimes multiple times). The stages of grief can be experienced in broad sweeps, or they can occur every time there’s a loss. This is common among those with dementia and their caregivers since the dementia process can cause new loss seemingly every day. Understanding the different stages can help you better understand your emotions and process them.

Denial. This is often the first stage for many, particularly just after a dementia diagnosis. This can manifest as refusing to believe the individual is ill, expecting your loved one to get better or trying to normalize problematic behaviors or symptoms.

Anger. Anger is sometimes the most difficult stage for caregivers to work through. Logically, we know that our loved one can’t help what’s happening or how they’re acting. Still, it’s common to feel frustration towards your loved one, resenting the demands of caregiving or the changes in your life or even feeling abandoned by friends and family members.

Guilt. We are our own worst critics, and caregivers especially can guilt themselves every hour of the day with unrealistic expectations or thoughts. Guilt surfaces in many ways. You may think you’re not doing enough, or you feel guilty for enjoying aspects of your life or you berate yourself for failing in some way.

Depression. Feeling overwhelmed, crying often or withdrawing from social activities are symptoms of sadness and normal. However, sadness can quickly morph into depression, which can cause serious health and emotional issues for caregivers and the ones they care for.

Acceptance. Acceptance can be simply defined as “living in the moment.” It can be found in the little things, such as appreciating the good moments and accepting help from someone who offers it. Acceptance, like the other stages of grief, can come and go, but ultimately circling back to this stage helps provide stability and the ability to move forward.

Ways To Cope with Grief and Loss

Accept your feelings.
It’s important to face what you’re feeling, whether your emotions are positive or negative. Allow yourself to be sad, angry, guilty or even happy at times. These are all normal things to feel. Work through your negative emotions in a healthy way, and understand that it’s all right to feel conflicting emotions. Give yourself the chance to feel what you’re feeling, which will help you work through and move beyond the moment.

Know that your feelings come in waves.
As your loved one moves through the dementia journey, you will more than likely experience loss and grief over and over again. Realize that this is normal and acknowledge everything you’re feeling. This is a normal part of the process.

Don’t compare your experience to others.
Grief, like dementia, is a unique process – no two people experience it in the same way. What you experience will be based on your relationship with the person, your own history, the duration of the dementia journey and many other factors. However, if you find yourself struggling or in a deep stage of grief for a long time, speak to a professional to get the help you need.

Find someone to talk to.
Everyone needs someone to share their feelings, thoughts, worries and hopes with. Many caregivers seek out support groups, therapists or a good friend during this time. Support groups are especially helpful because you’ll find yourself in a group of individuals who are experiencing or have experienced the same things as you. Support groups can be a boon to caregivers who want to share and form relationships with people who really understand and won’t judge them.

Stay connected to loved ones.

It’s easy for caregivers to give up activities and events that bring them joy. However, those relationships with your friends and loved ones will be what sustains you during this time. Taking a break from caregiving helps relieve stress and boosts happiness. Call a friend, have a standing lunch date or watch a movie by yourself. By staying involved in activities you enjoy, you’ll be better able to care for your loved one.

Take care of yourself.
The most important thing you can do for your loved one is take care of your own physical, mental and emotional health. Staying healthy creates balance in your life and allows you to provide the best possible care for your loved one with dementia. Eat a healthy diet, get plenty of exercise and stay involved in things that bring you joy and comfort.

Enhancing Quality of Life

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