Question
What are the challenges or the impact of long term family caregiving?
Answer
Even in the best case scenario, long-term family caregiving presents challenges. I will give you some examples based on my own experience of caring for my brother.
Physical
There is the physical aspect like doing transfers. As I start to age, I cannot imagine doing the transfers now that I used to do with my brother like going over the seat arms to get him into a concert seat because he did not want be in the back section. I would definitely need help with the transfer now, whereas in the past I would not have needed it. Loss of sleep worrying is another challenge that many caregivers face, particularly if the person is having medical issues or they do not have reliable care.
Social
For example, I had decreased free time in case something came up with my brother. Sometimes I would have to cancel things. Many long-term caregivers often have an inability to work. I was fortunate that by the time my brother needed more care from me, I was in academia and had a flexible schedule. I was working part-time, because I had my son at home, and we were able to fit this caregiving and the use of personal assistance services around my ability to work. If you are working a clock in/clock out type job that has no flexibility, you may not be able maintain that job.
Emotional
Often, there is anxiety and depression when the person that you love’s body or mind is changing. There is loss of the person who was and maybe the person who could be. Sometimes there is also anger.
Economic
An economic aspect of caregiving is the loss of salaries or the cost of care.
The effects of daily repetitive care and its associated activities are not restricted to the individual alone, but affects the entire family ecology. These effects are felt even when caregiving is long distance like never-ending phone calls trying to arrange for services (Fiese, 2007).
Multiple family members, when involved in caregiving, can be an issue, even if they are not the direct care provider. It can increase sources of strain and points of vulnerability. People disagree about what should be done and what should not be done. There are a lot of family dynamics when figuring out what is the emerging present, and what the future holds. If these challenges are not mitigated by supports, strain and burden can result, even in the best case scenario. When caregiving demands exceed resources, the caregiver’s emotional and physical health are negatively affected. This is where personal assistance service can provide a life raft and help with life balance and well-being (Clark et al.; Foster et al.; Huys, 2013).
