Having worked in geriatric health care for over 20 years and having facilitated hundreds of caregiver support groups, I have become aware of a somewhat universal phenomenon associated with Alzheimer’s caregivers which I have termed the “double death”. (I tried to think of less crass way to say it, unfortunately, this is the reality of the situation.)
First, the caregiver grieves the loss of the qualities of the person they have loved.
- Anger at a disease that would leave them looking at someone they have known and loved who has been replaced by erratic behavior which has created an environment of chaos from which they see no escape.
- Sadness at having to let go of their future dreams and plans.
- Regret over missed opportunities because there was always “time”.
This type of loss is profound and it is normal to feel anger, sadness and regret. What I want to share are 2 keys to this grief journey.
1. Self Care: Taking care of yourself is not only important to you, but to the rest of your family as well. Many caregivers, myself included, end up becoming martyrs for the “cause of caregiving”, sacrificing our health, relationships and eventually our life to sacrificially care for the other person. If this is you, please stop! The rest of your family needs you to take care of yourself. They have already lost the loved one with Alzheimer’s they don’t want to lose you as well.
This may mean that you:
- Allow yourself to grieve.
- Permit others to help you care for your loved one.
- Find a facility where the staff is trained to care for your loved one.
- Give yourself permission to live your life without feeling guilty.
2. Create a new way of relating: Much of the caregiver frustration I’ve seen over the years is related to our need to bring the person “back to reality”. Unfortunately this is an exercise in futility. Studies have shown that people with Alzheimer’s tend to relate back to ages 15-25, when major life events happened.
With this in mind you can start creating a new way of relating by doing some of the following:
- Ask questions – when they are saying “I want to go home”, ask, “Where do you live”; you might be surprised by the answer. Ask questions about their home and the people they talk about.
- Use props – old pictures of parents, relatives and places can assist in calming someone who has become agitated. Keep a box with these items, along with any other personal items, somewhere that is easy to access.
Subsequently, after years of living in the chaos of a disease that robs the victim of their ability to relate to those they love, there is the second loss when the person actually dies. I’m not sure which loss is worse, to have the person you love here and have them not, remember who you are or anything about your life together; or that point when they physically pass away.
They both have their own grief journey.
For more insight into coping with losses listen in this Thursday to CaregiverLife Radio by clicking on the link Coping with Loss from 10-11am CST .