Communication Breakdown

My husband has been completely non-ambulatory for about two months now. What that means is that he can no longer locomote independently at all. There has been a definite slip since the first of the year and especially since his last big seizure at the beginning of March. Whereas just a few months ago he was still walking slowly by himself, sitting down gingerly by himself, and standing up cautiously by himself with perhaps just a little help and encouragement, now he is either on his bed or in his wheelchair.

If he is not eating, he is mostly sleeping. Sometimes, he doesn't even open his eyes while eating. He chews and swallows slowly. It can take more than half an hour to feed him his meal. Every once in a while, he reaches up for something that isn't there, and then he puts his arm back down. His legs seem stiff as he tries to move them to a more comfortable position. He is unable to move from his wheelchair to his bed, and he seems anxious and even frightened when his caregivers try to move him or reposition him to take care of his personal needs.

This lack of movement, combined with side effects from certain medications, has resulted in difficulty with bowel movements (BMs). Constipation is a constant problem in these situations, and he is on daily medications to ease that. If it has been three days since the last BM, he is to be given a dose of milk of magnesia (MOM) that evening. If there has been no progress, he is supposed to get another dose in the morning. If there is no progress that afternoon, a suppository is to be administered and hospice is to be notified (Day 4). If there is still no progress by the next morning, an enema is in order (Day 5). I'm sorry if this is too much information for you, but please bear with me.

Last Friday, I was notified by the hospice nurse that it had been five days since his last BM. MOM had been started that day (two days late), and a suppository would be administered by the medical technician the next day if there had been no movement. I was there the next day (Saturday, Day 6) to make sure the suppository was administered, which it was. Apparently there hadn't been any at the facility, and it had to be ordered. I requested a phone call to update me on the situation. I received no phone call, so I wrongly assumed that everything was fine. No news is good news, right? Wrong.

The next day (Sunday, Day 7), I called the facility twice. The caregivers were no doubt very busy. The COVID situation has created lots of extra work. So the phone rang and rang, then went to voicemail. I requested a call back but still thought everything must be okay, or they would have called me. I called again on Monday (Day 8) and was routed to the nurse. At this point, it became clear to everyone that the ball had been dropped somewhere and that an enema kit needed to be ordered immediately. Whatever! Just get my husband the relief he needs! I was beside myself.

The enema kit arrived on Tuesday (Day 9). It was administered by the hospice nurse, and finally my husband's bowel was cleared. What a relief! It was obvious he was feeling much more comfortable. Well, of course he was! Can you imagine?

I have spoken to the facility administrator in person and have called on the hospice team to see what can be done to clarify and reinforce the chain of command to prevent this from scenario from repeating itself in the future. This kind of communication breakdown cannot happen again, to us or to anyone else.

I try very hard to not be that person. You know, the one who complains all the time, is always on the phone making demands, and makes life miserable for people who are just trying to do their jobs to the best of their ability. The one who elicits knowing looks and rolling eyeballs. But it's been a long haul, my patience has worn thin, I am exhausted, and this is my husband we're talking about. We have traveled this road for over a decade. I refuse to let him fall through the cracks, especially now that he is completely helpless.

Perhaps, in relaying the facts of the situation to you, I've failed to sufficiently emphasize its potentially dire consequences. Here's the thing:  People die from complications of bowel obstructions and fecal impactions. It's important to know what's going on, and it's important to keep on top of situations so they don't get out of control.

What happens to people who have no advocate?

Our 50th wedding anniversary
February 28, 2020
Still able to locomote, sit in a regular chair,
drink from a glass without a straw.

Update:  As I've mentioned on several previous occasions, this facility is really good, and its employees are caring and compassionate. They want to do things right, and they want families to know their loved ones are in good hands. It looks as though my concerns have been addressed, there's a plan in place, and so far I'm being kept informed. I am grateful.