It’s important to understand that when your loved one receives a diagnosis of dementia, they will likely only be in the early stages of their condition. They will still understand what this diagnosis means and will likely go through a grieving process. Watching your loved one go through the stages of grief is undoubtedly hard but it will help to understand the stages of grief and what your loved one is going through.
The Phases of Grief
There are six (6) formal stages of grief that a person goes through when they experience a trauma or hear the confronting news of something like being diagnosed with dementia, cancer or a range of other life limiting conditions. These are a) denial, b) anger, c) guilt, d) guilt, e) sadness, & f) acceptance. Understanding these stages of grief can help a caregiver better assist the person they love or care about through their grieving process.
Below is a summary of each stage of grief and what one can expect when their loved one is going through that specific stage of grief. It’s also OK to understand that you may very well go through the same stages of grief for them as they go through themselves. You may find yourself experiencing some of these feelings you as your loved experiences dementia as well. These stages of grief include the following:
Denial is characterized by thoughts of the idea that the person may not actually even be all accompanied by a hope of a misdiagnosis. Others may expect that the dementia diagnosis is temporary and that the person will not even change at all. Other people may attempt to “normalize” any sort of adverse habits or behaviors that their loved one experiences.
Once a person realizes that the dementia diagnosis is for real they may experience anger. Some loved ones may get frustrated with that person for having been diagnosed with dementia while others may be angry with the demands of having to constantly care for the person. Caregivers may also get angry at others in the family who will not or do not provide care to their loved one who is in need at that time. Many family members will feel betrayed or abandoned by those family members and will heavily resent what they have done to their loved one and to you by putting the burden on you to care for the loved one who needs it!
There are many loved ones who will wonder if they did something to their loved one that caused them to be sick or ill. Others will regret their angrier reactions after their loved one’s diagnosis. Yet others feel guilty when they take a break from caring for a loved one with dementia, even if they need that rest to help take better care of their loved one going into the future. Others feel like they have failed if they can’t provide the care the person needs at home and has to send them to a nursing facility to provide the care their loved one needs. Others will regret the relationship they had with their loved one before their dementia began and will have unrealistic expectations of themselves to “make up” for what went wrong in the relationship before their loved one was diagnosed. Other individuals may feel unrealistic expectations that are put on themselves such as “they must visit their loved ones every single day” or “they must never leave their loved one again” even though they have to work and live life anyway.
You may have a feeling of despair or depression over the idea that your loved one is going to “suffer” from dementia. People themselves who are experiencing dementia may experience a withdraw from social activities and those people may also withhold their emotions despite feeling a certain way and not wanting to show that to others.
The caregiver must come to grips with the fact that their loved one has this condition and they will have to affect your daily life at some point. At some point, you have to find a personal meaning to caring for those you love to help that terminally ill loved one. It helps to find pleasure by enjoying working with the person in the moment and seeing how you can impact their lives. While you may still be grieving, knowing that you are making a difference to that person long as they live is a consoling thing, and can make it easier for you to influence their lives in a positive way. Moreover, experiencing the loss of a loved one as you knew them can be devastating, but experiencing the personal growth that comes from the loss can make you a better person.
Ways to Cope with Loss & Grief
There are many ways you can face your thoughts and feelings about seeing a loved one go through dementia. Facing your fears is the biggest piece of the puzzle. Understanding that this person is going to go through this and that there is nothing you can do to stop it is key. You may have to work through the frustration of personally experiencing seeing a loved one go through this. If you need help from a local therapist or counselor, don’t be ashamed to seek help. This can make the difference between accepting what happens and never really coming to grips with it.
Understand that you will likely experience loss more than once as your loved one goes through the phases of dementia. These feelings are OK and acknowledging them can help you claim the grieving process as your own. It’s OK to feel the feelings you feel but in the end, it will not change what has happened or what will happen in the future. Remember to realize that grief hits people at different times and in different ways. There is no one “right way” to grieve or not to grieve.
It’s also OK to talk to someone about your feelings and grief. If you feel lost, therapists or psychologists might be able to talk to you and help make the situation more bearable. It helps you combat the feelings of isolation and loneliness you may feel ensuring your loved one’s dementia without what seems like anyone to help. Sometimes, even joining a support group to help you talk to others who feel the same way or are going through the same thing you are can improve your coping with a loved one’s tragic diagnosis.
Everyone experiences grief and mourning the loss of a loved one as they knew them differently. There is no shame in feeling how you feel, and realizing that others can help you acknowledge your feeling and move forward can help also. Reach out, because that’s people’s jobs in that field is to help you feel like you can move forward to help your loved one live the rest of their life to it’s fullest.