The more I talk with others about caregiving for someone close to you (family member or not), the more I can be certain that I will remain uncertain about knowing when the time has come to place the care recipient into care. The answer to that question varies depending upon the people involved and the health complexities involved. And, I would be fibbing if I were to say that the exhaustion level of the caregiver plays no role in this timing, because at some point the main caregivers run out of steam.
In my own family of origin, the exits of our parents from this world differed considerably. Dad remained lucid pretty much until the end, while Katie slid into dementia and her need for full-time care was easier to determiner. Looking at Katie’s situation first, my brother, with whom Katie was living, had spent some time at home with a work-related injury, could be with the care recipient much of the time, with me driving the approximately 2 hours round-trip to give my brother some respite once each week. But once he received notice that he had to return to work, Katie simply had to be placed in a care facility. Even if we had been able to keep caring for Katie at home, the local health care system would not add any more hours to her allotment, and advised that the time had come. But, make no mistake in thinking that placement of your care recipient in a facility means that your responsibilities have ended, because that simply is not the case. In our case, in both homes in which Katie lived, the care was very good, meaning that we had to monitor the situation and advocate for Katie when difficulties arose. In addition to tending to the necessities, I found it both necessary and prudent to make routine visits to the homes where Katie lived, to spend what I knew to be dwindling time with my mother.
Looking back at my father’s declining months, I realize that I can’t compare the situations fairly because my mother was the main caregiver of my father, with others of us relieving her when we could mange to convince her that she needed some time off. I think I am right in saying that Mom hadn’t considered Dad going into a care facility. I think also that Dad was mostly lucid and capable of being at home. In fact, I can remember being quite ignorantly surprised when I was encouraging Mom to go away for a whole day, and her asking me who was going to change Dad’s diapers while she was gone. I had no reason to know that he was wearing diapers, especially with Mom so devoted to Dad’s needs. Once I got over the surprise, I still encouraged Mom to chill out for a while as I attended to Dad, but she would not take me up on my offer.
To this day I marvel at my mother’s strength, especially on the day she had to tell Dad that he had to go back into the hospital, as she could no longer keep him at home. You see, the strong-willed man had come home on a day visit and refused to return, a move that bought him about a week back in the house the he and Katie built many years previously. But once the time came, and Mom made the situation clear, he cooperated, or perhaps he had become too weak to protest.
So now with me and Annie Oakley in our care in her suite, we will have to make these difficult decisions, and I can only hope that my previous experience will put me in a good place to help her to know when the time has come when we can no longer take care of her. If this is not what transpires, I hope I can help Annie’s son (my husband) understand that we are no longer able to provide his mother with all she needs to be comfortable in her remaining time. Only time will tell.
Yours in caregiving…