Topic: 2

The Caregiver’s Journey

PDFDownload a PDF version of this topic...  HPCO - Topic 2

Use the player to hear an audio version of this topic...

What You Need to Know

Caregiving can sometimes feel like you have been thrown into the deep end of the pool without a life jacket. You are learning to “swim” with no formal lessons. For sure you have a difficult job to do. Let’s not pretend that you won’t feel frustrated and isolated. All caregivers do at some point. However, this resource, and other resources like it, can provide you with some help. What you need to know is that caregiving is a journey with some smooth sailing, there will also be some stormy weather. As circumstances change, the level of your care will change too. Sometimes you will be filled with doubt; sometimes you will wonder if you are doing enough or doing it right. While it can be bring great joy to care for someone in need, the journey does have very specific issues both for you and for the person that you are caring for.

Remember:

  • Give yourself some credit for the effort you are making.
  • Don’t be afraid to ask for help.

Six Stages of Caregiving

Many people have experienced what you are experiencing now. In fact, it is quite common to experience stages as a caregiver. Knowing that what you are experiencing is a normal part or stage of your very unique caregiving journey may provide you with some comfort. Understanding the stages of a caregiver’s journey may help you to anticipate what is coming next and prepare for that next stage. This resource can help you do that.

You may not even be aware of when you became a caregiver. You may have decided to become a caregiver because of the relationship that you have with the person that you are caring for. Or maybe there simply isn’t anyone else to do it. But one way or the other in this first stage of the journey, you begin to take steps to prepare for your new role. You share fears and concerns as you talk to your friends, co-workers and other family members. You learn new things about your relationships, roles, responsibilities, and resources. Your own hopes and dreams may be delayed or disappear altogether. You may find yourself in role reversal and with that can come some grief for the loss that you feel for how things once where.

In the second stage of a caregiver’s journey, your goal is to learn as much as you can as fast as you can. You start to realize that this caregiving role is much bigger than you first realized. It is important that you find relief for you and as much care as you can and will need to access for the person that you are caring for. Research, read, make calls, and ask questions. Find out what is available to you. If you are employed it is particularly important to find out how you will manage work and caregiving too. This stage is often compared to arriving in a foreign land. The caregiver is trying to get his or her bearings, to learn the lay of the land. Now is the time for Advance Care conversations if you haven’t had them already. See Topic #7

In this third stage, your calendar is dominated by what feels like endless appointments. You feel like your worst fears are emerging. You feel like you don’t know who to trust or what to believe or where to find someone to talk to that understands what you are going through. Your daily anxiety and stress may increase. Your first responsibility must be for yourself. You know on the airplane when they ask you to fit your oxygen mask before helping the person next to you? Caregiving is the same: Your first responsibility must be to care for yourself; doing everything you can to prevent caregiver burnout, illness, and injury. Your ability to continue caregiving and to have a healthy life after caregiving depends on caring for yourself now. See Topic #3

You are now involved in all aspects of caregiving for your family member or friend. You have come to the realization that you must sink or swim so you are swimming as hard and as fast as you can. You may be happy to help but you can’t help but wondering “why me?” Over time, unless you take steps to prevent it, you will become exhausted physically, mentally and emotionally. Family dynamics become increasingly important. Stressors from that may increase too. See Topic #6

You are once again in transition. Lots of good will is directed your way but you are unsure how to apply that good will. You realize or imagine an end to your caregiving role either because the person is getting well and will soon be caring for themselves once again or because the person that you are caring for has little time left. See Topic #18 and 19

Your life changes once again and you must adapt to the new “normal”. You have so many questions about how you can possibly move forward. What does this new role, life of yours all mean? You may feel regret or guilt or sadness or relief and all those feelings are normal. Don’t be too quick to give up those supports that you have leaned on for the last while. If you don’t already belong to a support group, this can be the time to join one for sure. Continue writing in your journal. Tape recording your thoughts is also an option. Engage in relaxation and spiritual practices. Lighten your schedule to allow quiet times to be alone with your grief. See Topic #20

Do you recognize these stages? What stage would you say that you were in at the present time? How might you prepare for the stage(s) that lie ahead?

 

Caregivers often find it hard to ask for help. You need to get used to doing so even if it feels uncomfortable.

1. Read this scenario.

John is caring for his wife Elspeth. Elspeth has always been the cook in the family. John is missing his wife’s cooking and is struggling to survive on frozen dinners.

2. What specific request could John make of Elspeth’s friend? Think of a response before checking the sample response below.

Suggested response:

“I miss my wife’s cooking now that she is ill. I’m struggling just to heat frozen dinners, and I know you’re a good cook. Could you help me learn to cook a few simple meals or bring us some home cooking once in a while? It would be such a relief to me, and I could pay for the ingredients.”

3. Read this scenario.

Walking the dog seems like a huge chore for Katherine when there isn’t time in the day to do everything that needs to be done to care for Zak.

4. What specific request could Katherine make of their neighbor, another dog owner? Think of a response before checking the sample response below.

Suggested response:

“Zak is ill and I am in need of some help with our dog Zeus. I wonder if you might walk him once a week. I’ll give him a walk on Saturdays, so midweek would be good. Would that work for you?”

5. Read this scenario.

Frank, a retired OPP officer, has Parkinson’s disease. Louise, his wife and primary caregiver has known about Frank’s diagnosis for a few years now. However, the disease has progressed so that Frank’s movements have slowed dramatically. He is unable to walk normally or stand up straight. Although Frank has some independence he does need help with personal grooming, home maintenance, mobility, preparing meals. Which of these tasks would you ask for help with and who would you ask? What would you say?

6. Think through the scenario now and consider who and how you will ask for help when the time comes.

Use these additional resources to learn more about the topic of the Caregiver’s Journey.

Saint Elizabeth Podcasts: Talking Care: A Caregiving Journey Radio Show
https://itunes.apple.com/au/podcast/talking-care-a-caregiving-journey/id524780895?mt=2

The Caregiver Network

https://thecaregivernetwork.ca/

Employment Insurance Compassionate care benefits
https://www.canada.ca/en/services/benefits/ei/caregiving.html

Alzheimer Society of Canada: other resources for caregivers
https://alzheimer.ca/en/Home/We-can-help/Resources/Resources-for-the-caregiver

Family Caregivers Voice 
http://www.familycaregiversvoice.ca/

The Change Foundation A Profile of Family Caregivers 
http://www.changefoundation.ca/profile-of-family-caregivers-ontario/

Canadian Cancer Society If You’re a Caregiver 
http://www.cancer.ca/en/cancer-information/cancer-journey/if-you-re-a-caregiver/?region=on

Lotsa Helping Hands

https://champlainpalliative.ca/for-caregivers-patients/supporting-someone-end-life/