Dear Carol: My dad, 84, can shower, dress and eat. He’s continent and takes no medications, he can read, his hearing is OK and he’s non-combative.
What he can’t do is stay safe. My presence is needed 24/7 because he’s living in an altered state of reality. I read about caregiver burnout, but these people seem to do so much more than I do that I feel guilty complaining. Even so, I know that I need help. When I sleep, my back burner is always on waiting for him to wake me because of an imaginary intruder or because he forgot something. I'm always worried that he could be wandering through the house and I wouldn’t know it. Should I hire someone to be in the house overnight so my sleep can be solid? Am I being too much of a pansy? I feel the comfort of knowing someone else is available while I sleep may help me endure this marathon. — BH.
Dear BH: First, let me assure you that burning out from being on call 24/7 is predictable and normal. Secondly, try not to compare yourself to other caregivers. We are all different and have different stressors. Caregiving of any type is a challenge.
For years, I ran back and forth multiple times daily between several elder-living situations to help with baths, groceries, cooking, accompanying them to medical appointments and more, but what was the most wearing of all was being on-call day and night. I stayed glued to a phone in case Mom used her emergency alert and the monitoring company called me, or Dad fell at the nursing home trying to prove he could do a wheelchair marathon, or my uncle had another stroke, or… or… or. All of the caregiving was exhausting at times; however, being on-call with little relief was the most draining.
I carried a load, BH, but people who care for a spouse or parent in their home for years on end and have no help at all face much bigger challenges. My fear is that you may be headed in this direction. Your dad is hearing or seeing intruders who aren’t there. That means either the paranoia that is common for people who live with dementia is becoming a problem or else he’s having other disturbing symptoms. He could at any time begin trying to leave the house on his own. He could become incontinent. He could even become combative.
You are already carrying a full load of 24/7 supervision, and that’s a significant physical and mental challenge. This is the time to set up help with an in-home care agency so that your dad can start getting used to relief caregivers. You can have them come at night so that you can sleep, or you could have them spell you during the day, but getting started now seems smart. That way, you will be more prepared to help your dad in the long term as he gradually needs more assistance, and you won’t be doing it alone.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached at firstname.lastname@example.org.