Navigating hospice - help!

May flowers

Sheesh, this is long again, sorry, I have a habit if not being very concise

So, we have had some really good experiences with hospice so far but one big issue…

We loved the intake nurse, who still calls to chat. We loved the nurses who have come out, the social worker and the chaplain. Very thorough and helpful.

But the nurse who is our case manager, we can’t figure out. She says she will do something and does not. Says she called in medicine, but didn’t and acted irritated at us when we called to tell her the pharmacy had no record. We have called/texted her about 5 times over the past three weeks, and she says she never got the messages. She does not listen - like today, we told her we believed my FIL has trouble swallowing and we had bought thickener. She proceeded to explain dysphagia and we needed to buy thickener. I told her I am concerned about this rash on my FILs feet, which has been spreading since he has been home from the hospital, that it could be MRSA and that I tried cleaning it with hiblens, she said a few minutes later we should try hiblens. I mentioned this rash to her a week ago in a text, which she ignored, but this rash is now open, weeping sores and very concerning to us. 

We asked if we could cut the sleeping medicine dose in half, but she said that the capsule could not be opened. But this is medicine we are already opening to put in applesauce because he can’t swallow pills. The sleeping medicine is working, he is just a little too out of it the next day. She said we couldn’t figure out what half is (?)  She said they don’t make a smaller dose, but I called his pharmacy and they do. She suggested trying Haldol instead, but the way my FIL reacts to meds, I am nervous about trying another one and that’s a big one.

She has only been out once and it was a very quick visit, even though we were told this is who would take stock of our needs, she was in a hurry, got vitals and left. 

So, DH and I are wondering if we can ask for a new case manager “diplomatically” without causing bad feelings. It seems she either doesn’t like her job or doesn’t like us. 

harshedbuzz

Unless you have zero options because you are in a poorly served area, you should have some power in this relationship as you could also opt for an entirely different provider.

I would present the request as "not clicking" or "not feeling heard". Make it about you, not her. They should honor it. My friend was assigned a fire and brimstone chaplain who annoyed the living daylights out of her. She asked for a different approach and was sent someone who felt like family. My friend liked her so much she asked the hospice chaplain to perform her mom's funeral service in lieu of the priest from the parish church they attended for years who never once looked in on or asked after mom. 

Sometimes I feel like agencies have a "least popular" turkey they foist on newbies in hopes they'll try to make it work. When we brought in aides, they sent the B team first- a bully who tried to tell me how to do laundry, a thief who made off with some of mom's jewelry, a lovely woman with a lilting accent neither parent could understand before I called and said "this isn't working out" which resulted in them sending us exactly what I had asked for.

Would you treat for MRSA? This is not only dangerous to him, but also members of the household. Could he be cultured for it, so you know one way of the other? Hibclens can be very irritating. I had to use it ahead of surgery and the itchiness was awful; my mom rashed out from it. I wouldn't subject someone to Hibclens without a reason to. 

M1

May flowers I know you didn't ask this, but I would wonder about a possible vitamin deficiency with the rash, particularly if his intake is poor.  Just a thought.  Many vitamin deficiencies have skin manifestations.

May flowers

Thanks, HB, it sounds like we will have to speak up. I like making it about us and not her. The other nurses who have come out are wonderful and trying to make things happen but I wonder if they aren’t hitting the same wall!

I did not know hibclens could be so irritating. Hopefully there is something else they can recommend. I tried leaving it alone hoping that would work. Neosporin didn’t help. I’ve heard good things about manuka honey - I might try that. I told the nurse rash started as one spot on one foot and now has spread to the other and looking more inflamed. She said just let them know if it spreads (?) Another nurse came out last night (who we really like) and took pictures to send to the doctor. 

May flowers

M1, I am open to any ideas on it! We are perplexed. He is eating and drinking well right now, but I do have a liquid multivitamin I could give him. 

The visiting nurse last night said she wonders if he’s rubbing his feet together at night. 

I hope this is ok to post, but here is a picture of it in case anyone here has an idea. Moderators, let me know if this is not allowed and I will delete: https://ibb.co/pQ04d5g

dayn2nite2

Agree with portraying it as "not clicking."  Ask for a new case manager and if they are reluctant, tell them you'll probably have to look at changing hospices.  In other words, a new case manager is non-negotiable.

ButterflyWings

Mayflowers, no worries about the length. Some of us write longer posts and that’s ok. 

I’m sorry you have this added stress and apparent incompetence (or perhaps she is overloaded?) from a hospice team leader. Regardless, this is a patient safety issue as well as making caregiving so much harder so I agree with all the feedback and strategic approaches here. (Deferring on & trusting the medical advice too!)  Being your LOs’ advocate is a big part of the job, so please do not feel bad about being persistent, to calmly and clearly request what you both need and deserve (and that hospice agencies are paid well for!). 

The squeaky wheel really does get the grease. In addition to day2nite2’s approach I might start with “I’m reaching out after giving this our best try; now we need your help urgently”. With our hospice team that appeal likely goes through the SW.

If I were you, I also might find a way to not have your calls & texts going directly (and only) to the dismissive NC for now. She may not be logging your requests as expected. So, there’s no paper trail and no way for her employer to monitor or help her improve. Just your word against hers. In our case, calling the 24 hr number and leaving our (short) report or request for medical assistance there, puts it on the radar at a different level. Or if really urgent, it is appropriate to hold to speak with an on call nurse or Dr. I have done that on occasion when our excellent nurse/coordinator has a day off or its in the middle of the night and DH fell or was otherwise suffering “after hours”.

I wonder if the rest of your team will change when the lead does? Just a thought. Either way, this is not comfort care and I would do as the members suggest, to get the agency’s help ASAP or be ready to follow through on interviewing a different hospice agency with willingness to change this week if need be. Good luck to you!

toolbeltexpert

May flowers  so glad you have the majority of great care, its hard to hear about people who don't really listen or are not really qualified.  I had epilepsy as a child, possible brain tumor,when I got older I wanted to get trained to scuba dive, the dive shop said no way without a doctors approval. I called and made an appointment, wrote a letter  telling the doc I was confidant that my seizures were controlled and how good a swimmer I was, on appointment day I explained to the doc how I was a great swimmer loved the water ect. He did his normal checks, the reflexes ect, signed the paper. Off I went to the dive shop they were still reluctant and said they need to call the doctor, which they did in my presence, to my shocked they had a short conversation and handed me the phone, he said he thought I was going for my drivers  license. I asked if he had read my letter nope. He did say he wondered why I had talked so much about the water!  He wasn't my doc after that. I did get licensed and stopped taking meds  25 years ago. I no longer dive.  I am also glad you have written, we all never no when we will need good advice, everyone's  advice  sounds so good.  Praying for the nurse you need.

harshedbuzz

Neosporin can cause rashes, too. A lot of people react to the neomycin in it.

abc123

Sorry to hear this is happening! I depend heavily on our hospice team. You have gotten some good feedback. Dayn2nite2 is spot on! This woman has got to go. Good luck. Please keep us posted.

DrinaJGB

Someone might want to explain to that clueless nurse the reason we are born with two ears and only one mouth. I would get rid of that one. Yesterday.

live in daughter

Hi May flowers, we did request a new nurse for my Mom in home hospice service. We also had problems with not ordering meds. My sister started texting her med requests so we had a trail of these requests. My Mom had an arm wound from a fall that was not healing. The nurse really did nothing to  address it. We did talk with the manager and requested a new nurse. We did not have to give an explanation of why- it was just done.

I will say the next nurse was not very attentive. At this point we just used the hospice service for equipment, meds, and supplies. We worked mainly with a NP that was assigned to our Mom. She was a great advocate for us.

Our hospice service did had a wound care nurse. We found her care and advice invaluable. You might ask if your hospice service does have a wound care nurse. It might be worth having another set of eyes look at the rash.

Hope this helps.

May flowers

Toolbeltexpert - sorry to hear about your experience with that doc. My son has epilepsy but hasn’t had a seizure in 4 years. He is working on coming off his meds now. He has always been nervous about snorkeling.

HB, thanks for the heads up on the neosporin too

Everyone - I left a message for the SW to call me. A lot of good ideas here. I think I’ll just say it’s not a good fit. If they press, I have a good out - she is related to my neighbor and that could become awkward (truth!)

M1

MF thanks for the pic, it’s hard to tell but that looks potentially vascular to me, like bruising more than anything. It’s possible to throw cholesterol emboli to the feet if he has a lot of arteriosclerosis. Blood thinners could also contribute, and HB is exactly right about Neosporin, most dermatologists hate it. Tough call. With the recent hip fracture they might well have him on a blood thinner that could be contributing.

dayn2nite2

I'm not a medical provider, but the picture looked to me like the mottling the extremities can get prior to death and maybe it's the lighting but it doesn't look like a rash at all, definitely vascular.

May flowers

M1 and dayn2, I think you are right, this is vascular. He was on blood thinners after surgery but has been off since February. It could be mottling, his hands and feet are very cold too. Add to the coughing, trouble swallowing, sleeping, decreasing bp, I am wondering if we are near the end.

Where is hospice to at least suggest this to us? MIA. Still waiting to hear back from the SW.