Caregiving Tips

Talk to a social worker on your neurology team. They are a wealth of knowledge for resources.

There is a lot of daily relief for me, as my spouse’s caregiver, in having a group of several close friends and family members who consistently text with me about *me*. Their focus is about how *my* caregiving status is affecting me, and that is exactly the support I need from them.


From the time of my husband’s PD diagnosis, in 2009, until my retirement in 2020, people frequently asked me how *he* was doing. Sometimes I would *add* details about how I was doing as his spouse/caregiver, and sometimes I would just remind myself that my situation was not the area of concern.


This can perpetuate the general theme of “selfless service,” which caregivers tend to expect of themselves. It is an unhealthy situation for the entire family, especially when the patient/spouse generally has required everyone’s full attention routinely, even before the diagnosis.


After six months of our intense adjustment together at home last year — with his significant declines in cognitive and physical functions, and my attempts to be successful in full-time caregiving — he was admitted to hospital for a month. Then, this year he has been in rehab and long-term residential care in skilled nursing facilities, where he sees me daily for a two-hour visit.


My grown son offered me a critical gem of wisdom recently, which I remember daily to soothe my caregiver’s angst: “When Dad tells you that you aren’t doing enough for him, just think about all of the sacrifices you’ve made and all of the things you’ve done to help him. He doesn’t know what he’s saying now, so don’t pay any attention to it.”



And, one of my husband’s own friends said to me recently, “I’ve known [your husband] for decades. When he was well, he would not have wanted to see other people sacrifice their own wellbeing for him. So, don’t do that anymore.”


The statistics are alarming, about the percentage of caregivers who *predecease* the person they provide care for. I understand it, because last year I began to feel constantly that the only purpose in my life was to be his caregiver. In that process, I placed no emphasis on my own safety and health.


The unfair stigma associated with nursing home placement needs to end soon, as more and more people are aging with debilitating illnesses. Otherwise, many healthy family caregivers too quickly will experience their own declines in emotional and physical health. Often, the level of care a person requires is *indeed* more than can be provided in one’s own home. Nursing homes are going to have to fill the gap with professionalism and compassion, and the public will need to perceive that alternative as an acceptable option. Not a preferred option in general, yet necessary in situations where other alternatives will jeopardize family caregivers’ wellbeing.