What it’s really like to live away from a loved one in memory care
If you’ve ever been in a long-distance relationship- you know how it feels to be apart from a loved one. But what if this loved one was your mom or dad- suffering from dementia?
Prior to the pandemic locking households away from one another, the challenge of looking after loved ones from afar already existed mainly among first-generation immigrants and out-of-region family members.
Considering the added intricacies of travel bans and health risks, long-distance caregiving is increasing in popularity, especially as millennial caregivers become more reliant on technology to manage the lives of their loved ones.
What is Long-Distance Caregiving?
Long-distance caregiving can refer to secondary caregivers ranging in distance away from their loved one- this can mean living an hour out of town, or being continents away, all of which present distinct challenges.
What makes it so tough?
Not everyone who is a long-distance caregiver would have it that way- if it were up to them. While some families choose to assign the primary caregiving responsibility to a professional, many others would love to spend more time with their loved ones but cannot because of circumstances like inflexible home environments or demanding work lives that makes them geographically immobile.
This deep desire of wanting to be with a loved one, but being unable to (or choosing not to) be with them as they undergo cognitive decline can cause deep feelings of guilt. A long-distance caregiver may feel guilty for prioritizing their personal or professional lives, or simply for not being able to be there to physically and emotionally support the people they love. Even in the best-case scenario of becoming “regulars” in the lives of their loved ones, guilt may surface as a result of taking free time for themselves, or using vacation days to have fun and take their minds off the situation.
Something else to consider is that distance does not lessen the responsibility of being a caregiver. Not only do they have to care for their loved one with dementia, but they must also care for the individual(s) looking after them (the primary caregiver).
Consider the scenario where a couple lives in England, the husband cares for his wife who suffers from dementia, and their only daughter is a single mother living in Australia.
This means the daughter must check in regularly to ensure the father is receiving help mentally and physically, but she must also learn to look beyond the “everything is fine” and do what she can to help manage the life of her ill mother.
Even if a loved one is in the hands of professionals, a long-distance caregiver must still verify the quality of care their loved one receives, while keeping them happy and healthy in their absence.
When the distance is large, differences in culture also add to the hardship of long-distance caregiving. There may be different religious customs or lifestyle practices that the long-distance caregiver (most likely a child who moved away years ago) may not be aware of. This lack of attention to those details that only ‘locals’ would understand can negatively affect the wellbeing of the care receiver when they miss out on meaningful activities.
On the other hand, culture will also affect how the primary caregiver communicates and expresses emotion. It is likely that the long-distance counterpart will not get the “full story” from the primary care provider. They may even approach grief in a way the long-distance caregiver does not resonate with, which has the potential to cause conflict.
Lastly, living away from a loved one requiring care comes with a huge financial burden. Many times, long-distance caregivers feel pressure to provide financial support to compensate for their physical absence. Medications, specialized equipment, paid primary caregivers and related professional services are costly. Depending on the distance, even the occasional visit can cost hundreds (or more) of dollars. Everything adds up, especially while studying, or looking after a household of their own.
Socio-economic Determinants of Health
Daily, caregivers must look after their loved one’s lives in addition to their own. The caregiving challenges brought on by distance pile up to affect the mental and emotional health of the distant caregiver, which can lead to chronic stress and bring forth a plethora of related morbidities. Although they may receive help from primary caregivers and other relatives, they must still make tough decisions about the health of their loved ones while dealing with guilt continuously.
Many immigrants are also disproportionately affected by the financial burden of caring for family abroad- having to compromise aspects of their life because of their perceived duty of supporting (and visiting) their declining loved ones who may be an entire ocean away.
Caregiving is hard work- let alone doing it from a distance! There are unique challenges associated with long-distance caregiving that put a caregiver’s wellbeing at stake. However, with the right tools and support networks, there is still an opportunity to create a more positive caregiving experience.
Vezina M & Turcotte M. Caring for a parent who lives far away: The consequences. Statistics Canada, Ottawa: Canada, 2010. [cited in November 2018]. Available at: https://www150.statcan.gc.ca/n1/pub/11-008-x/2010001/article/11072-eng.htm
National Institute on Aging. Getting started with long-distance caregiving. U.S. Department of Health and Human Resources: United States, 2018. [cited in November 2018]. Available at: https://www.nia.nih.gov/health/getting-started-long-distance-caregiving