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Coping with Dementia Care by Grieving the Living

By Sharon Hall, Parentgiving contributor

Watching a person disappear is difficult. Watching a person become someone else is devastating. The only way to manage the loss of someone you love deeply is to emotionally separate yourself from the new person they are becoming. You must change your role from life partner to care partner; this is not an easy transition.

The transition from life partner to care giver has hills and valleys and takes a lot of support to make it through with your life intact. In her book, “Loving Someone Who Has Dementia”, Pauline Boss takes you through the process of grieving the living and outlines some of the common steps we all go through, and the ones we need to go through, while transitioning to care giver for someone with dementia. This book is a must read.

All dementias require a grieving of the living, mourning and saying good-bye to the person you love, even though that person is still physically here in front of you. In many cases there is physical deterioration along with mental and you can see that your loved one is sick. In the earlier onset dementias, like frontotemporal dementia (FTD), separating the person you knew from the person they are becoming is greatly complicated by the fact that they usually have a good memory until late in the disease. This gives them the appearance of normalcy, as we all tend to associate dementia with memory loss.

This “half in and half out” feeling of dementia can add frustration to the care partner’s role. If you assign certain behaviors to the person you have always known, and not the disease, it can build a great deal of resentment. You expect them to “be” who they have always been, since they seem so normal. They are not who they were, and they will never be that person again.

Incontince - Finding the right fit

This is when grieving of the living becomes a necessity. To expect a person with dementia to act normal and live in your world is going to end in failure. When a brain is not functioning normally, the person can’t act normal 100% of the time. You have to begin to expect nothing of them in day-to-day chores, and in life.

Expecting a person with any degree of diagnosed dementia to perform tasks in which they were proficient in the past, is asking for trouble. You will become resentful and angry.

You must instead expect nothing. When someone with dementia carries out a normal task correctly it should be praised, as you would a child who is successfully completely a task that is new to them. You can’t treat them as a child but you can certainly praise the positive actions and behaviors.

One of the hardest parts for any caregiver of a loved one with dementia is coming to terms with the loss of empathy and the blunting of emotions in the person diagnosed. Living with someone who looks the same but is uncharacteristically mean or rude requires a shift in your own thinking to remember that they can’t possibly act as they used to, through no fault of their own.

This shift can cause a great deal of emotional pain. This is a loss. This is the slow disappearance of someone you loved and shared dreams with for a long time. Just as they will never be the same person again, neither will the care partner.

The sooner you can begin to grieve the living and the loss of the person you knew, the sooner you can keep your own emotional stability and health. You are caring for a stranger, no matter how much they look like the person you love. If you do not make the hard transition from life partner to care partner, you will likely suffer emotionally and physically and may end up predeceasing your partner. The statistics of care partners dying before their partner with dementia are staggering. A primary reason for this is stress, and a primary stressor is expecting the impossible from a deteriorating brain.

You always will have moments of deep sorrow, even if you have done a good job of separating emotionally. You have lost an important relationship and that takes time to get used to. It takes time to grieve those losses, and it takes the help of a professional, in many cases, to save your emotional well-being and your physical health. As hard as this is, if you do not seek help in obtaining this level of emotional detachment, your life will be unbearable and filled with pain.

The good news is that you can find new ways to enjoy life with those with dementia. There are many joys to be shared, many memories to be made, but in a different role and a different state of mind.


About the Author

Sharon, a Certified Caregiving Consultant, cares for her mom and her husband, diagnosed with FTD in the fall of 2015, and moderates the FTD chat on CareGiving.com which happens every Monday at 7 p.m. ET (6 p.m. CT, 5 p.m. MT, 4 p.m. PT).