Tag Archives: death

How Caregivers can Deal with Anticipatory Grief

Anticipatory grief refers to a grief reaction that occurs before an impending loss. Typically, the impending loss is a death of someone close due to illness but it can also be experienced by dying individuals themselves.

I dealt with anticipatory grief with both of my parents, and this often happens with long illnesses.  I’ve coached many caregivers through the years on recognizing and responding to this grief, especially for those caring for someone with chronic illness, or neurological illness such as dementia, Parkinson’s Disease, MS, Huntington’s Disease and others.  It’s very important that caregivers understand this grief and have tools to cope.

Although we most often think of grief as something that happens after a death, it often begins long before death arrives.  Many times this grief carries similar symptoms of regular grief (after a person passed).  These symptoms often include sadness, anger, isolation, forgetfulness, and depression.  What complicates anticipatory grief is the fact that it is often coupled with caregiver’s stress and exhaustion.   This can bring on overwhelming anxiety, fear and quickly snowball into physical, emotional and spiritual challenges for caregivers and families.

Anticipatory grief encompasses the loss of a person’s abilities and independence, loss of cognition, hope, future dreams,  and loss of identity for both care partners.   Anticipatory grief can last a long time, as with chronic illness of a loved one, thus the reason caregivers often become overwhelmed and simply exhausted from the lingering feelings mentioned above.

Here are a few tips on how I dealt with anticipatory grief and coached others along their journey as well:

  1. Feelings attached to anticipatory grief are normal  Like normal grief, you must allow yourself to experience the different emotions that come with it so that you can move on to acceptance.
  2. Remember you are not alone!  Reach out to others who are walking your path.  Support groups often provide vital links for people to share with others openly and honestly.
  3. Accept your loss. Although it’s not easy and you may need to spend time talking with others, reading, journaling or other means where you can express yourself, ultimately as caregivers we must face and accept that no matter how much you would like to change a situation, it is what it is.  You will give yourself a gift by going through this process of acceptance.
  4. Remember that death is a part of life and that because you are grieving does not mean special moments and memory-making is gone.  Quite the contrary… you may find that by reframing your thoughts and accepting that every moment is even more precious, you will gain so much more in return by truly living in the moment with your loved one.
  5. Everyone grieves differently and accept that your grief will be different than other family members and friends.  Accept that the journey of grief is everyone’s own walk and we should be as accepting of others and our own.  In other words, this is a time to walk with grace.
  6. Be intentional about caring for yourself.  This might mean extra time allotted to meditation, prayer, exercise, journal-writing, reading of whatever it is that feeds your soul.
  7. Reach out to others, even when it’s the last thing you want to do.  Maintaining your relationships and connections is the healthiest antidote to cycling into isolation.
  8. Be mindful that when your loved one dies, feelings of relief are normal, but this does not mean that you will also not experience grief again.  It will be different grief but certainly will come with many of the emotions felt during anticipatory grief.
  9. Your best gift may be to reach out to others who are experiencing anticipatory grief.  Giving when you feel you have none more to give is often the best medicine.
  10. Practice the art of gratitude for the ups and downs, joys and challenges.  Illness and death certainly bring soul-pain, but can also open up avenues for deep personal growth and strength.

Pam Brandon is President/Founder of AGE-u-cate® Training Institute and a passionate advocate for older adults and those who serve them.  A long-time caregiver herself, Pam has inspired thousands of caregivers with education, support, and wisdom.


How Can We Lovingly Embrace the Ending…Tips for Families

What is a harder conversation topic with elderly parents – money or death?  If you guessed death, you get a gold star.  Why do we find it so very difficult to discuss the inevitable?  Surely we’ve all come to grips with the fact there is one thing certain about life and that is death.  We can embrace the ending by learning to embrace the life that we still have with our loved ones until the times comes when they are no longer with us.

Often it is not death that frightens people but the process of death.  Will there be pain, suffering and will it linger?  Fear of the unknown often is what ties us up into a pretzel of NOT wanting to talk about the ending.  What if we could learn to open up conversations so that everyone could be more prepared for the unknown, more accepting of death itself, and in turn make the process of dying a compassionate and loving experience?  Sadly, too often I see insecurity indecisions and pain overtake what could be a sweet time of compassion, filled with memories in itself.  Memories to embrace and treasure.

Most families have a considerable amount of unfinished business in this arena.  Here are some tips on how to open doors of communication, come to grips with what some call a “long goodbye”, especially those living with dementia or other chronic illness, and certainly lastly how to make the goal of acceptance and compassion be first and foremost in all planning, decision-making, and conversations.

  •  Make your wishes known.  That means we listen to our loved ones, preferably long before we have to make difficult decisions for them.  I want to interject here that we all need to understand that we should be guided by Plans A, B, and C – understanding the Life Plan A almost never is a reality.  That said, as care partners and families we do our very best to fulfill those wishes, but many circumstances may make that impossible.  Far too many times I’ve heard promised made to loved ones that they will be able to pass at home.  When the time comes, and that is not able to be fulfilled the family member feels horrible guilt.   Remember, we should be open and honest in lovingly expressing that we will do all we can to fulfill their wishes, but that it may not be possible for a number of reasons.
  • Spend more time embracing the moment of the ending rather than funeral plans.  Why is it that we agonize over what songs will be sung and flowers delivered – when our loved one needs our compassionate hand to embrace and hold at this moment?  Far too long we have gotten priorities a bit confused would you agree?  What if we put that energy and emotion into what can be embraced int he here and now?
  • Remeber that one’s feelings and emotions remain intact, although declining, until the end of life.  Response to touch, expression, love, music, even nature can have profound effects on the dying person.  Talking “around” a dying person is as much a sign of disrespect as it is a sign that they’ve been dismissed as a person.

“Our ultimate goal, after all, is not a good death but a good life to the very end.”
Atul Gawande, Being Mortal: Medicine and What Matters in the End   

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who care for them.  She is co-creator of the Compassionate Touch® program for end-of-life care.  www.AGEucate.com