The Caregiver’s Journey–Part 1

I recently attended a one-day conference (organized by Hospice Waterloo Region) for caregivers and professionals who support them.   As I sat with the other participants, and heard the stories of people who are actively being a ‘care partner’ for a loved one(s), I was struck by the love and dedication that helped them to make meaning of the difficult role that they had agreed to take on.  I was also aware of the feelings of exhaustion, frustration, fear and loneliness that many bravely shared as they told their stories.  This is the first in a three-part series on Care-giving.

The information in this post is a partial summation of  information that was presented by Dr. Virginia Wesson, Psychiatrist and Dr. Rhonda Feldman, Psychologist.   Both Drs. Wesson and Feldman see patients, and their families, at The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training.

The Caregiver’s Journey

According to data presented that day, there are 3.3 Million caregivers in Ontario.  Of those, 500,000 of them are ‘young’ caregivers (falling between the ages of 6 and 25).  If as a society we were asked to pay for the caregiving services provided free-of-charge by loved ones, the bill would be in the Billions of dollars.  Wow!

Based on the numbers, if we are not personally affected  by the need to take care of a family member or friend, then we know someone who is–a friend, co-worker, other family member…the list goes on.  As people in our circle, how can we support them as they support others?  I suggest that a first step is to understand the path that they are walking.

Dr. Wesson believes that there are three stages to the caregiving process:  the early stage, the middle stage and the late stage.

The Early Stage

When a partner, spouse, close friend or family member has been diagnosed with a debilitating illness we often experience shock and grief.  While we may have suspicions that our ‘person’ has been struggling, having it confirmed can still be devastating.  We don’t know what the future really looks like, and we may feel that we are starting an ‘endless’ journey.

If we are the primary support, we can be overloaded with information by medical staff or our own research.  On the other hand, we may feel that we are being provided with little information and not sure where to turn.

Once the initial emotions subside, and if the disease in question is progressing slowly, the illness may intrude in our life, but we are able to carry on with a sense of normality.  You may be providing more emotional support vs. physical support for your loved one, taking on more of the hands-on chores that may now be more difficult and becoming a ‘manager’ of the care required by your loved one (i.e. managing medical appointments).

Coping Strategies for the Early Stage

It is during the early stage that you can start to put supports in place for the future.  Will there be physical changes that need to be made to your surroundings?  Are you aware of community organizations that can be called upon when needed?  How may other family members or friends can be asked for help?  What do you need to take care of yourself–such as self-care activities?

This is the time for planning.

The Middle Stage

By the time you have reached the middle stage, you have realized that your loved one isn’t going to get better.  Their illness is a constant consideration as you plan your day–both personally and professionally.  Some people may have decided to leave their jobs, or scale back their hours of work.  Many may be coping with the financial stresses brought on by the illness–either through loss of income or rising expenses.

Feelings of loneliness and overwhelm can be common at this stage–especially as your world is shrinking due to care-giving responsibilities that never seem to end.

Coping Strategies for the Middle Stage
  • Be realistic about what you are able to do.  Don’t be afraid to ask for help.
  • If you have not done so already, now is the time to call on your support system for help…friends, family members, outside organizations.
  • To the best of your ability, keep up with your self-care practices–eating well, exercise, and any activities that help you to cope.
  • Be aware of the abilities of your loved one, due to their illness.  It may be less frustrating when we understand that their actions are due to physical challenges vs. negativity.
  • Try to find any positive aspects or meaning  in the care-giving role.
The Late Stage

By this stage, caregivers may be feeling that “I can’t do this anymore”.  If they have had little or no support, they may be suffering from burnout.

There may be feelings of both internal and external conflict as the need to make decisions start to arise.  Internally, there’s the struggle between the guilt you could be feeling as it becomes more difficult to take care of your loved one in their home and the possibility of them moving into a place with full-time paid staff; and the recognition that continuing the current way of doing things is becoming impossible.

Family conflict may come into play if family members are not agreed on next steps, or resentments have come out regarding the sharing of care-giving duties.

Coping Strategies for the Late Stage
  • As above, be realistic about what you can do…physically, mentally and emotionally.
  • Look to your medical supports for information about what can be expected during the late stage of illness and how much care will your loved one require.
  • Access mental health support either privately or through community organizations that specialize in your loved one’s illness.  Organizations such as Cancer Support Centres, Alzheimer Society, etc. have care-giver support groups.

While it may seem like it, as a care-giver you are not alone…no matter where you are on the journey.

Next week, we’ll look at care-giver burnout and further ways to cope.

And now…a TED talk on the positive effects of exercise on the brain…Enjoy!