Tuesday, August 25, 2009


I've been working with a rather frustrating family the past week. I take that back. The patient A and his wife B are absolutely lovely. The daughter (C) is another story. "A" just came on to our program about 2 weeks ago and has declined pretty quickly. His wife has her own health problems and is a tiny, frail slip of a woman, who can no longer care for him in their independent living apartment. Last Thursday the hospice RN Liz called me to say it was time to talk about caregiving options. Of course, since he'd barely been on the program at this point, I had told B and C they should talk about the long-term care plan but they had not had a chance. The daughter was at work so I left her a message and told her the options: either hire a caregiver or place him in a long-term care facility (LTCF, here on out.) I talked to B at length about these two options and she was leaning towards hiring a caregiver. She didn't think a live-in caregiver was necessary at that point but did concede that she could not help him with transfers, going to the bathroom, etc. I told her to talk it over with her daughter once C was off work. Liz visited them Thursday night and talked to B and C (A was sleeping and when awake, very confused and thus unable to participate in any more decisions about his care) about what they were going to do. When Liz left, she was under the impression that the family would make a decision on Friday. But did that happen? No. I got a call around 12:30 pm Friday afternoon from the office- the daughter had questions for me about their options. I called her back and went over the options again. I encouraged her to call some home health agencies to find out about cost, if caregivers were available, and all that good stuff. We talked about the fact that the patient should not be left alone; therefore a 24 hour caregiver would be necessary. She then wanted to know how much time he had left. I gave my best guesstimate, which was any day or within the month. Then she asked about LTCFs so I talked about a few that are in the area and encouraged her to tour them and then make a decision. She said she would make some phone calls, set up tours, and talk to her mom. I told her that we had on-call social workers if she had any questions over the weekend. And I figured that come Monday morning, they would have hired a live-in caregiver or making plans to transfer him to an LTCF. Except that the daughter had not done anything.

I got a phone call from the hospice office at 11 Monday morning that the daughter had some questions for me. The office manager also let me know that the daughter had called Sunday afternoon requesting a hospice volunteer for Monday afternoon. How's that for giving us notice? I should mention that this daughter fired one hospice RN for the sound of her voice and voiced many complaints about what hospice doesn't do. It doesn't matter that she was asking for things that Medicare won't cover. She appears to be someone who feels entitled to what she wants, when she wants it, and someone who cannot be pleased no matter what you do. I called her back to address the same things I had told her Thursday and Friday. Out of the kindness of my heart, I offered to provide respite in the afternoon while she and her mom went to an appointment as it was too short notice for our volunteers. She gratefully accepted this offer and I mentally reshuffled my visits for the day. She then said her mom had decided on LTCF placement. I told her what the next steps were- tour the facilities, see if they have a bed available and when, pick one, go through their admission process, decide on transportation, let us know, and the hospice RN would make a tuck-in visit. She asked me how she would know if a bed was available. I suggested she could ask this when she called to set up an appointment to take a tour. Well, this wasn't good enough. She asked me to call them and find out if there were beds available- because she didn't want to waste her time calling them to set up a tour if they didn't have a bed in the first place. Never mind that this wastes my time! I just sucked it up, called the facilities, and then called her back. And then she called them to set up a tour time.

When I arrived at the apartment yesterday afternoon, we reviewed everything thus far. C was going to take the tours after dropping her mom back off. The plan was for A to go to whichever place she decided on today. A slept the whole time I was there- would have been nice to catch up on charting but my laptop battery died. Oh well. He'd definitely declined further since last week and in the back of my mind I wondered if he would make it through the night, much less a transfer to a facility. When B came back from the appointment, it was obvious she was torn about this decision so I spent a fair amount of time with her, helping her process the decision. She can't drive so she will be dependent on her daughter and son-in-law to take her to see her husband. It was heartbreaking! I plan on still visiting her once A is moved so she gets the support she needs.

First thing this morning I talked to hospice RN Meg to find out which LTCF it was going to be and found out a few more things. 1) C told her mom that she wouldn't be taking her to visit A every day. She's not taking any time off of work. (Meg and I were bitter about this- couldn't this daughter have taken time off of work to take care of her dad? I know this is our issue because we would respond much differently if in a similar situation.) 2) C did not want to decide on which LTCF after the tours- she wanted Meg to tell her which one. And this likely means that any little thing the nursing home does wrong will get blamed on us. Argh! 3) Meg told me that C had been appalled that I didn't just offer to call LTCFs to find out if beds were available first. Never mind that I did this for her without complaint and never mind that she didn't say one word about her "appalled state" to my face.

I arranged for an ambulance to pick A up. He's too confused, weak, and lethargic at this point to go by Medicar like the daughter was hoping. I told her what time the ambulance would come and how much it was going to be. Even though I had repeatedly told her that they would be liable for the cost since he's going to a new residence, she asked again if Medicare would cover the cost. I told her no. She then asked if there were other companies that would be cheaper. And this my friends, is the reason why families should arrange their own transportation! (Of course, C would have none of that.) I stayed calm and told her that all ambulance companies are comparable, which is true. And in my head I was thinking "there's no way I'm calling any where else for you!" As far as I know, A is safely ensconced in the chosen facility and hopefully that's the end of that.

Thanks for letting me vent. I needed to get that off of my chest!

1 comment:

AnneSW said...

Thanks for a great story! Good for you for keeping your ire under wraps - not easy with this daughter!