How does the role of caregiver happen in a family? Who takes it on for a loved one, a relative or friend? There are many facets to becoming a caregiver from understanding the process, respecting family dynamics, building trust with the patient, exploring new therapies that can help and having respect for the person and their dignity during the declining stages.
I’m just getting back into my regular life again after my father passed away a few weeks ago. I’ve needed the time to recalibrate.
He had a good life, living to one month shy of his 96th birthday. Always looking for new ideas and ventures to get involved with, and lived life on his terms until the very end. In some ways a fascinating role model for being creative on the other hand formidable. After this initial period of mourning that I’ve gone through, I have lots of thoughts and emotions swirling around in my head and heart.
Reflecting on my role as a daughter, I’ve also been the primary caregiver for him and others in my family for practically all my life. Starting with my younger brother from the day he was born to this day, (born with congenital heart disease), my mother who died young living with a terminal illness, a sister with mental illness who passed away suddenly from meningitis and my father who had a stroke 30 years prior.
I believe I understand a few things about caregiving….
It’s a tiresome, thankless task that often goes unnoticed and enormously draining. Why I took it on I don’t know but it became a definitive role for me, my family, my career and my personal identity whether I liked it or not!
So I thought I would share with you some tips and personal reflections on caregiving:
The process of caregiving goes through many phases especially when the parent, spouse or child doesn’t believe there’s a problem. It‘s almost next to impossible to command change.
1) Respect, trust and dignity are critical to the relationship. Often accidents, hospitalizations or trauma happen first before the reality sets in. Decline is so delicate to recognize and knowing when to take action.
Taking action can happen naturally or become a necessity. We all perceive the role differently and as the primary caregiver asserting our idea of how things should be is not always the right timeline:
2) The process is slow and takes time for the loved one to accept a change for managing their independence and self-care.
3) The healthcare system is now depending on family to manage the patient:
- Designate a primary caregiver. It can be yourself, a spouse, partner, family member or friend.
- This person is like the general manager of an organization. They are the big picture person who networks, delegates tasks and oversees the care of the patient. They coordinate all needs from the outside. Delegate, Delegate, Delegate!
- Educate yourself about the issues and resources available to you.
- Put together a team of supporters such as experts for medical care, secondary support team for physio, personal hygiene (hairdresser, podiatry), and a third level for daily or weekly activities such as exercise, art classes, local community centre social network. They are like your management team of VP’s who keep the company on task.
Get to know these people and develop a relationship with them, they are your support team, your go to people that advise you, get answers from and share progress with.
4) Caregiving for the caregiver: Take care of yourself throughout the process physically and mentally.
You’re the captain of the ship and if you go down, everything that you manage will go down with you and you’ll feel terrible about it.
Always ask yourself: How best can I care for myself today? How much time do I need for myself today?
Take care of your basic needs first:
- Eat healthy food and meals. Prepare foods in advance so you’re well-nourished to handle the tasks.
- Avoid processed and refined foods as much as possible especially sugar foods.
- Keep your body in shape by exercising regularly
- Create relaxation time for yourself with meditation, reading a book or social activities
- Have a community that gives you support when you need it such as a support group, your family, friends or religious community.
5) You need a buffer between you and you’re loved one.
When you’re ready, hire a caregiver that is a certified Personal Support Worker (PSW) or connect with an agency to do it for you. The PSW is a cross between a staff person and client that you take care of and nurture them and in turn they take care of your loved one. They help you out, give you a break from daily tasks you don’t want to do or shouldn’t do to maintain your relationship with your loved one and their dignity.
- Invest in them. Pay it forward what you learn so they can better manage the homecare and your loved one.
- If you can’t afford it, ask your doctor to connect you to a local social service agency (CCAC) for added support for a PSW to come in a few hours a day. Or, have a circle of friends that help you out.
- Investigate alternative choices if needed.
- Investigate alternative choices to medicine, food and lifestyle
- Know the system, your rights and services available
6) Remember you are not alone:
There are lots of support groups out there, professionals to ask for advice and resources to gain. Think positively about the process during those difficult times.
Download this Caregiving worksheet that provides a guideline for organizing your caregiving tasks and roles. The second page you fill in the first one provides examples.
Personally, I’ve hated and loved this role over the years because I’ve met some amazing people and have learned so much. I have great compassion for professional caregivers and health professionals. They are incredibly dedicated people.
If you are interested in more information check out resources on my website about caregiving (scroll down to Care and Caregiving section)
Here are two podcasts CBC’s radio program White Coat Black Art with Dr. Brian Goldman. I found them helpful to listen to other people’s stories and their managing the caregiver role
Most Canadians will, at some point, care for an elderly family member. It can be a stressful and difficult experience.
Meet a young caregiver who her life on hold to help her mother with early-onset Alzheimer`s.
Please share your story about personal caregiving and how you copes with it.
Have a great week,