Dementia: Grieving the Living

As children we develop unique and profound relationships with our caregivers. We look to them to provide for us and help us navigate the world and all of its challenges.  If we are lucky, they do this for us most of the time, and no matter how old we get we always want to feel that in some way our parents can be there for us.

When dementia enters the picture, everything changes.  The person who tied our shoes, cooked banana pancakes on Sundays, and made sure we got to school seems to be fading in and out like an AM radio station on a roadtrip through the desert.    Perhaps they are sometimes clear and present.  We can hear them and know who they are and in the next moment static begins to fill the air.  We are lost to a louder more terrifying sound as we search for a familiar road sign to mark time and distance when all we have seen for hours is sand and sky.  No longer oriented to what we know, we try to flip the dial to tune in, but static eventually wins out and we have no choice but to let go. Our parent is no longer exactly who we have known them to be and with that comes loss.   

We all know that we will most likely experience sadness and grief after the death of someone close to us, but what we don’t always expect is that with dementia we can begin grieving before someone dies.

Professionals call this anticipatory grief and it can be difficult to make sense of when we know that the person we love is still here. It is true that they are still here, but things are shifting like quicksand.

We try to move forward in a direction we know, but roles are suddenly reversed.  The person who we knew as our capable, protective, and loving parent or grandparent now needs us to take care of feeding them, bathing them, or managing their day to day lives. Their faces are familiar but who they are becoming is not as recognizable   It is not something anyone necessarily counted on, and yet, here we are.  Not knowing what to do and wondering if it is right to grieving the living.

We look at our caregiver and imagine them dead while they are standing right in front of us.  We notice them having difficulty recalling a word, or even worse, our own name.  We worry about what we will loose next, what they will loose next.   We avoid spending time with them because we might see them falter.

Strangely, we also have hope.  Hope for treatment, hope for a good day, hope that the disease will move slowly enough to allow for a good life until the very end.  Hope that we can somehow alter the outcome of the progression of this horrible, horrible disease.

The truth is, we can never fully know what comes next or how our lives will alter as this disease progresses. This is why staying in the moment is helpful.  We don’t know how long our loved one will recognize us, but they recognize us today.  We don’t know the last time they will be able to remember their grandchild, but they do right now.  Connect while you can and how you can.  We don’t think we can possibly bare another sleepless night of sundowning, but what can we do to cope right now? 

Ways to Cope:    

Connect
Find time to do an enjoyable activity with your parent or grandparent and keep expectations low.  No, they might not be able to manage physically what they used to, but listening to music together, sharing conversation, or  a simple craft project allows for new experiences and positive emotions to be present amongst the feelings of grief for both parties.

Seek Support
It is also important to create a team of support.  This could be family members, a spiritual community, or a support group. Connecting to others and sharing your emotions will help with the feelings of isolation anticipatory grief and caregiving can bring.  Connecting with others also allows for the opportunity to learn more about coping tools others have used and community resources that might be available. Individual therapy is also helpful.  Telehealth can make it possible to receive support when it is challenging to leave the home due to providing care to a loved one.  

Prioritize health
The anxiety and stress associated with anticipatory grief can be minimized by working to stay physically active.  If you can’t leave the house due to caretaking responsibilities there are plenty of free workout videos on YouTube.  If you do have the opportunity to leave the house a walk through nature can be helpful, even if it is only a stroll in a neighborhood park.  Prioritize good sleep and eat nutritious foods. Drink plenty of water.  Managing the basic needs of life are often enough to make the stressors and grief of caretakers feel more manageable.