Category Archives: Care-giving

The Caregiver’s Journey–Part 3

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!

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The Caregiver’s Journey–Part 2

In last week’s post, 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.  Today, we’ll specifically look at the burnout that can be experienced by some caregivers.  What are the risk factors?  How do you know if you’re feeling burnout?  What can you do to prevent burnout?  This is the second 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.

A Story…

Dorothy and Marion (both aged 74) have been together for 40 years.  Ten years ago, when they retired from their careers (Marion was a teacher, Dorothy an operating room nurse) they had plans to travel.

Shortly after Marion left her job, she developed a cough that wouldn’t go away.  She lived with it, but became concerned when she started to experience a tightness in her chest and shortness of breath.

Rather than visiting the doctor, Marion decided that maybe a change of climate would be helpful, and the couple planned a trip to Arizona to visit friends.  “Perhaps the heat and rest would improve Marion’s symptoms”, Marion thought.  Unfortunately, there was no change in her health.  In fact, once out of her home environment, Marion became easily tired and was unable to join Dorothy and their friends on day trips.

When the pair returned home, Marion agreed to seek medical advice.  She was diagnosed with the Chronic Obstructive Pulmonary Disease (COPD)–a chronic inflammatory lung disease that causes obstructed airflow from the lungs.

Marion and Dorothy were shocked by the diagnosis.  Both had been smokers at various times in their lives, but had quit ten years earlier.  However, one of the causes of COPD is smoking and the habit had left its mark on Marion’s lungs.

At the beginning, after the shock wore off, the couple found ways to cope with the changes in Marion’s health and her decreased energy level.  Long-distance travel was out of the question, and with Marion’s new medication, they were able to make the most of day and weekend trips.  Because they were both retired, Dorothy found it easy to take over some of Marion’s tasks.  The women were able to cope in this first stage for a long time, adjusting as Marion’s health slowly deteriorated.

Risk Factors for Burnout

As explored in last week’s post, burnout often starts to appear during the middle stage of the care-giving journey.  In the beginning, the illness is a consideration in lifestyle decisions, but not a main component.  However, as the illness becomes more severe, it becomes a major factor in how the person who is ill and their caregiver function on a daily basis.

As the caregiver continues on this path of support, they may be at risk for burnout depending on:

  • the severity of the illness or behaviour of the person they are supporting
  • if they feel able to handle situations that arise
  • the type of relationship the caregiver has had in the past with the individual (i.e. it is often easier to take care of someone with whom you have had a loving relationship)
  • degree of knowledge about the illness
  • level of quality support (informal, formal and professional).  The more support, the less risk for burnout.

Based on what we know about Marion and Dorothy, we can assume that Dorothy may not be at a great risk for burnout, if she is careful.  When Marion was first diagnosed, both women did a lot of research into COPD.  Because of Dorothy’s connections in the health care field, she was able to put supports in place well in advance of them being needed.  The couple had been in a loving, stable relationship for a number of years and were committed to supporting each other through the illness journey.

However, not every caregiver has the resources that Dorothy was able to access.  What are the symptoms of burnout?

You May Be Experiencing Caregiver Burnout If…
  • You have developed a new health problem.  If we don’t practice self-care, taking care of a loved one can stress our immune system, causing our own health to suffer.
  • Depression.  At times we can feel that the situation is hopeless–especially if we know that our ‘person’ isn’t going to get better.  Feelings of being overwhelmed, overtired and under appreciated can all lead to depression.
  • Anger.  While anger is a normal response to life not turning out as we had wished, excessive anger is a warning sign of burnout.
  • Substance Use.  Care-giving is difficult and we all have our own ways of coping or self-soothing.  However, using substances as a way to make yourself feel better is not a healthy way of self-care.
  • Social Isolation.  Social isolation can be a vicious circle.  We may have to stay home all the time in order to be there for our ‘person’–especially if there are no supports in place to give us a break.  However, the more isolated we become, especially if depression sets in, the less time we want to spend out in the world.
  • Loss of Relationships.  This is directly related to the degree of social isolation you may be experiencing.
  • No interest in self-care.  If you are not eating well, taking time to exercise or spend some time doing activities that you enjoy, burnout may be the reason.
The Story Continues…

Through forethought, planning, good communication with Marion and lots of support, Dorothy was able to avoid experiencing serious burnout.  Of course there were days or weeks when she felt overwhelmed, but because she felt that the care she was providing for Marion was important, she was able to get through the rough patches.

By this time, Marion was housebound due to exhaustion.  Her medication wasn’t as effective as before and for various health reasons she wasn’t a candidate for surgery that is sometimes an option for COPD patients.  Due to her lack of energy, Marion spent a lot of her day sleeping.

If someone had asked Dorothy how she was doing (we don’t often ask the caregiver, but instead focus on the person who is ill), she would have responded that she is able to handle the medical piece because of her nursing training, and the house chores as they can afford to hire help when needed.  Her biggest heartache is that she misses Marion (the ‘old’ Marion).  She misses having someone to go out with and share experiences with.  Marion isn’t psychically absent, but she sleeps most of the time, so isn’t always available.  Dorothy wonders when she stopped being Marion’s partner and became her full-time nurse.

This sense of loss is common for caregivers.  Even if they have support for the practical things, the grief experienced around this is often lonely and hard to explain to others.

What’s a Caregiver To Do?

Does the above list describing burnout sound like you?  Can you relate|?  If so, there are things that you can do.

  • Ask for help from other family members, friends, medical supports, etc.  As humans we often feel that we can do it all by ourselves, or that no one else is able to take care of our ‘person’ as well as we can…and we can’t and other’s can (though it may look different from how we would take care of them).  Do yourself and them a favour and get some support.
  • Check into support groups for the type of illness/condition that your loved has.  Many groups, such as the Alzheimer’s Society and Hopespring Cancer Support Centre offer support groups for patients and their caregivers.  Your medical supports may be able to provide advice on where to look or check out the web.
  • If you are feeling housebound due to your care-giving role,  and are computer savvy, there are on-line support groups available.
  • Let your doctor know that you are struggling–especially if you are feeling depressed, using substances or other unhealthy means as a way to cope.  There are things they can do to help by suggesting medication or referrals to other professionals.
  • No matter where you are on the care-giving journey, counselling is always an option as a tool to help you cope with negative emotions (such as anger) that can come up, inappropriate ways of coping, feeling socially isolated.  Having an impartial third party to talk to about what is going on, can release some of the stress and pressure that you feel.
The Story Still Continues…

Marion and Dorothy are still living in their home.  Marion’s health continues to decline, and Dorothy has come to terms with her ‘new’ relationship with her.  At Dorothy’s request, family members have started taking on a more active role in Marion’s care.  More and more household duties are being done by paid help or family members.

Dorothy is still grieving the loss of the ‘old Marion’ and recognizes that this is reality. She is thankful that she is able to provide so much care for her partner.

And now, let’s lighten the mood.  For those of us who are trying to figure out summer plans for our children, here’s a classic camp song from Alan Sherman…Enjoy!

Part 3

 

 

 

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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!

Part 2

Part 3

 

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