In mid-May, my mother, who was the primary caregiver for my father with Alzheimer's, died suddenly. We spent weeks trying to get my father into a suitable situation, which quickly ended up in his death (a long story, so please bear with me). I'm looking for ideas on how to cope with uncertainty amid tragedy.
posted by carrienation to health & fitness (21 answers total) 12 users marked this as a favorite
Shortly after my mother died, my father got out of the house that he and my brother were living in, and ended up in an emergency room. My brother, panicked about keeping Dad safe, immediately placed my father into an assisted living facility (I'd suggested alternate plans of my partner and me taking care of my dad while we researched a suitable place for him or putting Dad in adult day care). The home he picked was nonprofit and well-rated on the Medicare site. Shortly after his admission, ongoing problems were brought to my brother's attention—my father had gotten into an altercation (in fact, had been attacked by one of the other residents) and he was urinating all over. About two weeks in, the home called and said he wasn't a good fit, and they wanted a conference the next day to figure out a better placement for Dad. The very next day, they called my brother and said they were sending him to the “senior behavioral unit” (i.e. the psych ward). He was strapped into a chair (because he had apparently fallen, after the drugs they had given him) and couldn't get up to go the bathroom by himself (something he had been able to do two weeks previously).
The social worker at the original nursing home never called us back; my brother worked with the social worker at the hospital to find a more suitable placement for him. it took 6 days for the original home to examine Dad and say that they were not taking him back, and another 11 days to find a spot that was free for him, and by the time my father arrived at the new place, he wasn't the same; the first night, he was twitching as if he was having a nightmare, and he never responded to me or my brother. Worse, he spit out food that had been lodged in his throat; apparently, he had lost his ability to swallow. The next day, he was more lucid, but when given water, spit it out.
The doctor of the facility was not scheduled to make his rounds for several days, and the care conference for Dad was put off until Thursday (five days later). At that point, I wasn't sure what I would be able to do (we thought that a lot of what we were seeing with Dad was a result of the drugs he was on), so I travelled home (a decision I'll always regret). After the care conference, my brother informed me that Dad was fighting an infection, and they would try an IV on him; if that didn't help, they wanted us to think about whether a feeding tube would be an option.
I did loads of research, and consulted a gerontologist friend, and all indicators were that feeding tubes were a very bad idea for Alzheimer's patients—they would pull them out, and would thus have to be restrained, which is something he definitely wouldn't have wanted--and that careful handfeeding would work as well.
I was hoping against hope that they would be able to do this, but if my father was resistant enough to pull out an IV, he would have resisted a feeding tube. We never agreed to the feeding tube (even the doctor's assistant said he wouldn't do it to a loved one); Dad was certified for hospice on a Thursday, and died on the following Tuesday.
Throughout this ordeal, we tried to make the best decisions for Dad, but in my incessant thinking about this, I keep being tripped up:
*Do I know that the nursing home did everything they could to save him? Did they carefully hand-feed him? (I will always regret not running back to town to do it myself.) I don't think I'll ever really know.
*Should we have tried the feeding tube? The home didn't realize how much of him was left just two weeks previously. Again, I'm not sure I'll ever know whether the swallowing issue was a part of his Alzheimer's, the result of a stroke (something I suspected when I saw him at the final nursing home), or a temporary thing resulting from drugs or his infection.
*Most importantly: In one of my grief counseling sessions here in Illinois, a nurse got indignant and said that what happened with my father was not legal here. How can I find out what is legal in Ohio, and to whom should I appeal? My ultimate goal is to make sure that this doesn't happen to other sons and daughters of patients with dementia and Alzheimer's.
In a situation like this one, how have you learned to deal with such an array of uncertainties, and with the fact that your involvement might have resulted in the death of a beloved, and the uncertainty that accompanies that? Did you try to investigate further, and if so, how? Or did you resolve to make your peace with this, and how so?
Note: I've started grief counseling, I've started reading When Things Fall Apart, I'm contemplating individual counseling, but I feel like I need to martial every possible resource to help me cope with this. I'm agnostic, so ideas that incorporate “your mother and father are together now” won't be of a lot of help to me.
An example of something that was: A hospice nurse telling me that a feeding tube is for the comfort of the family (so they believe that they did everything they could do) and not for the patient, who has to live with invasive, painful surgery which doesn't usually help.