Caregiving: Unexpected Changes

By Wendy Johnstone
March 20, 2017

My Dad is 95 years old and honestly, some days I can’t believe he is still alive. I’m his only daughter and caregiver. I’ve been looking after him for 4 years now. In those years, we’ve had pneumonia, a broken hip and a stroke. What I’ve really learned is there are always unexpected challenges. I kept thinking that if we got over the bump in the road, the caregiving would get easier, until I figured out that there would always be another bump in the road.

Caregiving isn’t easy. Some days it might feel like boot camp. Other days, you expect things to be hard and you breeze right through them. The bottom line: caregiving is unique to all families. It’s likely that you’ll experience changes in your relationships with spouses/partners siblings, children, and mostly, the person you’re caring for. You can also expect some strong feelings to surface. Mostly, caregivers are surprised by the number of challenges they face or ones they didn’t expect.

Uncertainty or a lack of awareness about the “normal course” of a disease: Is Mom’s memory loss normal or is it serious? My adult son has a brain injury and I don’t know what to expect in his recovery a year from now? My spouse is severely depressed and no amount of medication seems to be helping – what do I do next? Uncertainties or lack of knowledge makes it hard to judge whether someone’s behaviour is normal or a cause for concern, and if the progression of recovery or digression of a disease is normal.

Perceived changes in roles: When parents become frail and need assistance to maintain their independence and quality of life, caregivers often feel a reversal of roles. Spouses caring for their partners often express a distinct role change and loss in their spouse. When communication is touchy, the end result is often increased tensions or dealing with difficult emotions.

Money, Money, Money: Families can feel the squeeze especially as care needs and housing requirements change or continue long term. Some caregivers aren’t able to work full-time or have to quit their jobs altogether. We often wait too long to talk finances with our families or financial advisors because so it’s one of the most emotionally difficult topics to address.

Stress and life balance: Many caregivers can’t believe how many directions they are pulled in – caring, parenting, honouring one’s spouse, keeping up at work, managing a household and trying to navigate the gamut of health care systems, not to mention basic self-care.

Acknowledging our losses: It’s heartbreaking to watch an aging parent become frailer or more forgetful. It’s hard to see a spouse change right before our eyes and not be able to be with them in the way we want. It can hard to learn to accept or support an adult child after a major head injury or mental health diagnosis. Whether it’s the loss of health, the decrease in independence, the anticipated loss of a wife or disenfranchised grief with dementia, caregivers rarely take time to sort through the range of emotions associated with these losses.

Lack of awareness about the workings of the health care system and community resources can result in inappropriate expectations, time-consuming navigation, uncertainty on who does what and for what and inflated levels of frustration and anger during a crisis.

Guilt and more guilt: Caregivers often set unrealistic expectations, are led by duty or loyalty, and often feel guilty because they either can’t do enough or they are bound by geographic location.

Why are we making these decisions now? Lack of planning is common to most families. Rarely do we want to talk about awkward or “doom and gloom” topics. This usually results in missed opportunities to have meaningful discussions around types of future care and support. Some common topics that are helpful to discuss in advance include: housing and care needs as frailty increases; what’s acceptable as an end-result for the care recipient in terms of meaning, independence, decision-making as they figure out “the new me”, where to draw the line as a caregiver, finances and how to manage in the short and long term; how caregiving is carried out in the family; the care receiver’s preferences regarding health care decisions, dying and death, power of attorney and distribution of the estate.

Family Caregivers of BC is here to help you in whatever way we can. Here are some places to start:

Helpful Videos

Watch for the Signs

Caregiver Consultations: How We Help Frail Elderly Parents

Long Distance Caregiving

“You are amazing! What I tried to do in 2 months, you did in 1 week. You’ve helped us navigate the system, made sense of Mom’s disease, and gave back her independence and control. Thank you for making such a difference in Mom’s life and giving us, her family, complete peace of mind.”

– Mike G., Nanaimo, BC

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