The Caregiver's Journey - Part 3 by Laurie Blaikie

In Part One of this three-part series, we explored the specific parts of the Caregiver’s Journey–the beginning, middle and end stages–what can be expected at each stage and ways to cope.  Last week, in Part Two, we looked at caregiver burnout–the risk factors and warning signs.  Today, we’ll look at what happens when the caregiver journey is over.  This is the last in a three-part series on care-giving.

A Review of the Journey

If you have reached the end of the caregiver journey, you have gone through some difficult terrain.  You and your loved one have moved from an initial diagnosis and all the thoughts and emotions that this entailed.  As their illness became more severe you have adjusted your lifestyle to take this into account.

You have learned to ride the ebbs and flows of medical, community and family/friend support.

Along the way you may have experienced burnout, loneliness and the possible adjustment of adding ‘caregiver’ to your identity of spouse, partner, child, sibling or friend.  You have navigated the decision of either keeping your loved one at home, moving them into a hospital or made other arrangements for their care.

Now, with the death of your loved-one, the caregiver journey is over and you are embarking on a new path–grief.

The Grief Journey

Grief is hard. It’s messy, unpredictable and exhausting.  Grief is never experienced the same way twice.  It’s one of the most difficult things you will ever do.  And…grief is an opportunity for growth, a chance to develop resilience and discover strengths that you didn’t know that you had.  While grief may feel like depression, it isn’t…it’s grief.

When working with a client who is on the grief journey, I’m often asked “How long does this last?”  “When will I be done?”.

Grief is as individual as those who are experiencing it.  We all grieve in different ways, and there is no set time frame.  Just like a hike down an unknown trail, we’re not completely sure how long it will take to reach the end or what we’ll encounter along the way.  One thing is certain…we’re not the same people starting the journey as we are when we finish.

The Tasks of Grief

While everyone has different ways of grieving, J. William Worden in his book Grief Counseling and Grief Therapy, suggests that the following four tasks are part of the grieving process.

1. We need to accept the reality of our loss.  Whether the loss is a person, place or thing; we need to accept the fact that the loss has occurred, and what was lost, is not returning.
2. We need to process the pain of grief. Sometimes people experience grief as physical pain or develop anxiety/panic attacks.
3. We need to adjust to the world without our loved one. Externally, this may mean adjusting to living alone, or developing a new routine.  Internally:   developing a new sense of self…”Who am I know if I’m not ….?”  Spiritually:  looking for meaning in the loss and determining the nature of the world (Is it kind or harsh?).
4. We need to maintain a connection with who we’ve lost, while at the same time starting a new life. How do we remember, when we’re moving on?

While these are the ‘standard’ tasks of grieving, is there something specific to the grief journey if we have been a caregiver?

A Caregiver’s Grief

We come to the grieving process in different ways.  Sometimes the person we are grieving  has died suddenly, sometimes unexpectedly and sometimes with anticipation.  As a caregiver, all three can apply, and usually we know that death is coming.

When much of our life has been taken up with taking care of someone, even if they have moved into a care facility, their loss can leave a large hole in our life.  Our schedule may have revolved around our person.  Perhaps we visit the care facility on a daily basis, spending many hours each time.  The other residents and staff have started to feel like family, and visiting has given us a sense of purpose.  With death, we have not only lost someone, but also the opportunity to see the new friends that we have made.  This may be why some caregivers become volunteers at the care facility once the initial upheaval of grief has subsided.

There may be some ambivalence around the loss of our loved one.  On one hand, we may feel relief that they are no longer suffering.  If we are experiencing exhaustion or burnout from our care-giving role, we may also feel relief .  On the other hand, guilt may be our companion because of our relief.  “How can I feel such relief because my loved one is no longer here?”  “I am being so selfish!”  “How can I miss them so much and still be happy that I have ‘my’ life back?”

Grief can be a roller coaster,  cycling through the ups and downs of various emotions.  It’s all normal.  According to Buddhist thought, you are not your emotions or your thoughts.  Just like a roller coaster, the key is to hang on and ride through the highs and lows…without judging yourself.   Easier said than done!

Ways to Cope

If you are a caregiver, grieving the loss of the loved one you cared for, here are some ways that may help you to cope.

• Take time to rest and adjust.  Chances are that you have been spending more time with your person during their dying process.  This can be overwhelming and exhausting–especially if you are already tired from long-term care-giving.
• If you find that you are having trouble with physical issues, consult your doctor for support.  Sometimes at the beginning of the grief journey you may have trouble sleeping, or have an increase in the severity of your own medical issues.  Your doctor may provide short-term medication or at least put your mind at ease about what you are experiencing.
• It’s ok at this point to be ‘selfish’ and take care of yourself.  When we have been taking care of someone for any length of time, we often put their needs before our own.  Now is time for you.
• Ask for help.  There may be tasks that need to be done…some can wait and others need to be done as soon as possible.  If you don’t feel that you are able to complete these on your own, see if friends or family members can help.  Consult with care providers, financial and legal supports or funeral home staff to determine what can wait, and how to proceed.
• Speak to someone that you trust about your emotions.  If you are having trouble dealing with feelings of guilt, anger, sadness, etc. talk to a close friend or family member.  If you don’t feel comfortable with this, or feel that it is appropriate, you can speak to a therapist to help you to sort out these difficult feelings.

And now…a caregiver’s tale… Enjoy!