Are you caring for a person living with dementia? Have you wondered if it is normal to experience feelings of grief and loss, even though the person living with dementia has not yet passed?
Strategies to help you accept the changes to both of your lives
As brain change progresses, even though the core and essence of the individual remains, there are many things that do change. Aspects of an individual’s appearance, abilities, and personality may become quite different, for example. It is very common for these changes to prompt feelings of grief and loss for those close to the individual.
These feelings of loss can be very complicated with dementia, because changes are not always stable or predictable – one moment the person may seem similar to how they once were, and the next moment they may seem incredibly different.
Also, in the early states of dementia, the changes may not be readily noticeable to others, so you may feel as if you are grieving alone. How can you manage these feelings of grief and loss? See our four tips below to help you cope with the changes you’re seeing.
1. Try not to grieve in front of them
It is perfectly normal and healthy to experience these feelings, but do your best to grieve when you are apart from the individual. Although you can certainly let them know how sorry you are that this is happening to them, expressing your personal grief to the individual will rarely help you feel better. It may also increase their feelings of anxiety, guilt, and shame.
Even when you feel that the individual living with dementia is no longer able to recognize you, they typically are still able to pick up on the feelings and mood of those around them. Choose to express your grief and loss when you are not around them.
2. Accept a new normal
Even though you may long for the way the individual used to be, do your best to let go of this desire for the old, familiar version of them to return. Cherish your memories of the way they once were, but try to let go of the hope of them staying the same. All of us are constantly changing, and they will likely be changing at a faster rate.
Accepting that they are changing and they will continue to do so allows you to focus on the present moment and their new normal. When you can focus on the present and meet them where they are, you give yourself a gift of being able to continue to create new memories with the individual rather than focusing on loss.
3. Find moments of joy
When someone is living with dementia, especially as the disease progresses, your feelings of loss may increase. However, seeking positive moments of connection can help.
Spending time with the person listening to music, looking at beautiful pictures, giving them hand massages, enjoying favorite foods together, or discussing old memories are examples of ways to create moments of joy. Then, when their earthly journey has ended, you will be left with memories of these moments.
4. Seek support
Joining a support group for care partners can be immensely helpful in managing feelings of grief and loss. Local churches, dementia education associations, Area Agencies on Aging, and other organizations often host these support groups. Positive Approach to Care also offers a virtual Care Partner Support Series.
Some support groups meet in person, and others are virtual only, so you can select the style that best meets your personality and schedule. Talking through your feelings of loss with others that are experiencing the same feelings can be very helpful. If you really don’t feel comfortable in groups, talking with a close friend, counselor, or clergy member can also be beneficial.
The ups and downs of a journey with dementia can be incredibly challenging, and it is normal to experience feelings of grief and loss along the way. You are grieving the loss of the way the person once was, and feeling loss long before the person is actually gone.
You can help to manage these feelings by not grieving in front of the individual, accepting their new normal, finding moments of joy, and seeking support. While it will not change the outcome, it may allow you to accept the changes to both of your lives.