We’re finally calling hospice agencies

Hope5757

it’s been a difficult process in many ways because I, the primary caregiver, am not the primary decision maker. Additionally, as she is not my own mother, it was very important that my spouse arrive at this decision without feeling pressured.

I think DH needed time to process the terminal natures of his mom’s two serious diseases (stage 4 lung cancer and severe dementia).

We also had a dear friend who just broke a leg. She was the primary caregiver for her own mother. This brought home the reality of our impossible situation if something similar happened to me.

We still have an appointment with a doctor who specializes in palliative and hospice care. But the PCP is going to have the hospital’s social worker call me. The plan is to interview various hospice providers and then have MIL accepted into hospice care. Per her PCP, there’s no doubt she’ll qualify. MIL’s oncologist also recommended hospice.

I’ll admit being able to call a doctor 24/7 will be a tremendous relief. While her PCP is amazing, she is not our personal emergency services. And for the last few months, that’s how I was feeling.

The difference in how medical professionals approach their work has been eye opening. MIL’s PCP genuinely cares for her. She calls me on weekends and holidays. I try extremely hard to not take advantage of the good doctor’s generosity.

On the other hand, her oncologist works with avoiding liability as his chief goal.

Thank you to all of the forum members for your encouragement and support.

M1

I am glad for you and hope that you will all find it a tremendous relief. Frankly I wasn't sure your MIL would survive until your June(?) appointment.

Hope5757

Thanks @M1. I really hope the experience with hospice will be a comfort to DH and MIL.

harshedbuzz

This is wonderful news.

GothicGremlin

@Hope5757 hospice was a godsend for my sister during the last few months of her life. It was a huge relief for me as well, just with so many more eyes on her. It's definitely a huge step, and one that takes much processing, but I think one that will help all of you.

mommyandme (m&m)

I hope hospice will be a relief for both of you. Besides all they offer and provide, getting to know your team prior to your MILs transition is helpful, and not to mention them getting to know your MIL and you and your husband. Having known our hospice team for almost two years, I was able to text or call our nurse and CNA throughout their service and I’m still in contact with our nurse 1.5 years after mom passed. So much of caregiving is about having community support, like this forum, and hospice can be a wonderful addition to your community.

Hope5757

Thank you @harshedbuzz , @GothicGremlin and @mommyandme (m&m) -

I can tell DH is still not very comfortable with the idea of hospice. The stigma of hospice and “giving up” on his mom is still a factor. Hopefully as he gets to meet the people, he’ll be more comfortable.

The personal aide we’ve hired has been good for all of us. MIL feels like she needs to perform so eats better and showers with less objection for the aide. The unfortunate flip side is she crashes pretty hard from the show timing. I hope the urge to show time dwindles as she becomes more familiar with the aide.

She’s started to ring her call button at various times of the night now. We initially thought she would be able to use the button for bathroom calls, but she lost that ability in weeks. We depend almost fully on the motion detector, bed alarm and the security camera to alert us when she’s trying to get out of bed. Unfortunately, that also means a lot of false alarms.

I spoke to the hospice coordinator today. She was patient and understanding. IThe coordinator will come next week for the assessment but she indicated that’ll be a formality as MIL’s cancer stage qualifies her for hospice indefinitely.

I’ll start a separate hospice thread that provides details on the process. Hopefully, it’ll be helpful to others.

ButterflyWings

Hospice has been a life saver for us for over 2 years now. That is the opposite of the stereotype, I know, but with dementias it was never thought that DH would be gone in 6 months. Only that his condition was terminal, 24/7, volatile at the time with recurring UTI infections, a couple of falls, unexpected and unexplained fainting and a wife who would not have been able to survive his disease much longer at the rate it was going.

I understand your DH's hesitation given the stereotype. But truly, they have been a godsend. Responsive, time-sensitive, professional, and caring. That's been our experience at least and the supplies plus equipment have been provided proactively, meaning they were there when we needed something urgently the first time, and that is a HUGE relief.

Gone are the super-stressful days and nights of waiting for a Dr. to respond to an after hours call and then for them to say they couldn't do X or needed to put in an order or referral and we'd have oxygen maybe next day or 2, (same for an urgent prescription to address his UTI which could escalate to sepsis and was otherwise wreaking HAVOC)

Good for you, supporting both your DH and MIL in this process.

harshedbuzz

@Hope5757

I pray you get a fabulous team on the first try. From what you are writing about your poor DH, he more than anyone needs a compassionate and astute set of individuals to support him. Be aware that if there's an individual who doesn't mesh well with your DH (or MIL), you can ask for someone else. People working in hospice are a bit like therapists, it's OK to change if it's not a good fit. One of my friends found the "fire and brimstone preacher" assigned to her family off-putting and asked for someone else. They assigned her a lovely older Lutheran minister who they opted to have officiate at her moms' funeral rather than their parish priest.

I personally hate the language of war applied to disease and aging. You're not going to "beat this thing". Dementia always wins unless some other disease or event gets to her first. There is no stigma in providing an additional layer of care and support— that's an act of love and mercy.

I do hope your DH can accept that he can't change what is going to happen; he can only bring in the people and tools to make this easier, less scary and more dignified for all.

HB

M1

Wholly second what HB says. I get the impression your DH wishes desperately to have control here. But the sad truth is that he doesn't, in the sense that he cannot change the fact that she is old and dying. The diseases will win out with time, and I agree that the language about "battles" etc. is not useful. This is not nor never was a war in that sense. What he can control is making the inevitable as comfortable as possible for everyone involved.

Hope5757

Thank you @ButterflyWings , @harshedbuzz and @M1

I’m sorry for the late response. I’ve been in the trenches the last few days. Just trying to keep my head above water.

At this point, hospice hasn’t been the wonderful experience I'd hoped for. I think this is mostly due to our having not really accepted the premise of comfort care.

Hospice sends a nurse twice a week. He checks vitals. Health care aid comes according to their general schedule. Unfortunately, last week, the aide’s visit was squarely when MIL was napping after lunch. I woke her up for the shower and we had a catastrophic reaction.

Calling the nurse line resulted in a less informative response than MIL’s PCP. But the nurse line was faster. The nurse said she’d talk to the doctor about antibiotics but after 4 days, I haven’t heard a word. I’ve never gone 4 days waiting on MIL’s PCP to respond.

The hospice nurse told me he wouldn’t be able to allow me to use the comfort pack drugs (that they’d already delivered) because MIL is full code. Of course, whether she should be full code is another discussion.

What HAS been helpful is knowing I won’t have to worry about supplies, oxygen or covered medication anymore. They pick up and deliver.

Hopefully as we continue use of the service, we’ll become better able to appreciate the services.

For now, MIL’s cancer and dementia are in a terrible race. Because confusion and delirium are symptoms of end stage cancer also, I no longer really think about what disease is causing what symptom.

She’s deeply unhappy and depressed but so scared about “not getting better”. Our euphemism for dying. She’s no longer able to accurately describe how she’s feeling. Just that she feels “different”.

We have a few days when she eats well and is alert. Then a few days when she’s not. The biggest change is she’s much angrier at DH and me. Any suggestion is met with accusations of us yelling or making her feel bad. I know this is because she isn’t feeling well. But we’re struggling to meet her emotional needs to be treated with gentle dignity while still maintaining basic hygiene, nutrition and medication.

jfkoc

My husband was on Hospice. We never gave up his PCP.

housefinch

I may be misunderstanding this, as I don’t know everything about how hospice works. I wasn’t aware that someone who wasn’t DNR could be accepted into hospice. The one good thing about witnessing resuscitations in sick frail elderly people as a med student 25 years ago was that I vowed never to let anyone do that to me or anyone I know if I was making the decision. I think that witnessing someone perform CPR on his mother would be very traumatic for your husband. Treating her anxiety as maximally as necessary would be a kindness to her—-but if his conflicted feelings prevent that, she’s really not getting comfort care.

harshedbuzz

@housefinch

You can remain a full code on hospice. Not many elect this option, but it is allowed. Below is an article for nurses—

https://www.myamericannurse.com/innovative-care-approach-hospice-patients/

You raise an excellent point about what that actually looks like in practice.

I know of a family who took dad (on hospice/stage 4 lung cancer) on a bucket-list trip to Pigeon Forge where he became unresponsive and EMTs did CPR unsuccessfully in full view of family. To say they are haunted by it would not be an overstatement. The 6-year-old has not slept in his own room since.

Mom and I recently worked on her Advanced Directive together. I had concerns about CPR in a frail 86-year-old with osteoporosis whereas she watches too many medical dramas. I borrowed a copy of Being Mortal from the local library and had her read it after our first stab at the AD which went sideways for a host of reasons including her belief that "they don't feed you on hospice".

HB

M1

FWIW, I just looked, and there are no videos on YouTube of a real "code" or resuscitation attempt. For fairly obvious reasons. But it's too bad, really, because anyone who's seen one knows what it's really like, as housefinch said. It's absolutely brutal, and mostly unsuccessful. Over 90% of real resuscitation attempts fail. Ironically, it's been studied and shown that over 90% resuscitation attempts shown on television are pictured as successful.

ButterflyWings

Whoever signed her into hospice has the right or responsibility to sign the DNR, or not. Full code is counter to hospice comfort care philosophy IMHO as housefinch said.

Warning: My next words include my understanding as a CPR-certified lay person and may be disturbing. There is no way I would allow my DH with Alz to be physically attacked by someone holding him down, doing violent chest compressions that would likely break ribs possibly puncturing lungs, in an attempt to restart his heart — only to force him to endure a terminal illness longer. He would never understand the attack, would surely be afraid, in pain, and by not intervening I would be allowing that attack. The damage it would cause, would require further invasive interventions — never, ever, would I allow that and I urge others not to.

And after being given legal access to a comfort kit, I'd have a hard time accepting anyone's words telling me I could not use it when her care needs call for it. You may need a different hospice agency. Or to pose your questions in writing to her PCP and or the agency social worker or management. This is cruel to both you who love her, and to your LO in my view. I say that as someone who is in your shoes, minus the LO's cancer.

BTW, DH has benefitted from the morphine relief more than once (at hospice nurse and on call sub nurse's direction) for pain and for anxiety relief with severe breathing issues and he is still here. I think we used the Lorazepam at least twice also, but learned he cannot take that after noon-ish as it had the opposite effect on him (sundowning through the roof, anger, etc.) I have never given the Haldol, but was given the option (from nurse and dr) if needed along with the recommended dosage and timing.

They should not withhold the comfort care that she needs and deserves, nor instruct your family to do so and I'd be in trouble if someone asked me to do that. Can you all get a 2nd or 3rd opinion today? (You have heard from a few medical professionals on this thread already). Hugs to you in this terrible situation. Sending you strength to continue advocating for her. You are right.

Hope5757

Thanks (as always) to my forum friends for your support and advice.

We’ve been on hospice a week now and I’ve learned a lot. I’m sure I’ll continue to learn and will try my best to share these lessons.

Of course my experience is just my experience.

Calling the nurse line has been a tremendous relief. They’re not as informative as MIL’s PCP - mostly because I’m talking to different people. But, I AM regularly picking up valuable information. For example, I think the hospice doctor said no to my question on antibiotics because MIL was showing no other signs of pneumonia other than coughing up blood. I think the thought (valid) was this was a symptom of her advanced lung cancer. Unfortunately no one told me this. I gleaned it from an off-scheduled visit when the nurse told me the signs to look for that indicate an infection.

In the last week, I’ve called the nurse line 3 times. Once because she was coughing up blood. Once to ask about MIL’s increasing shortness of breath and complaints of chest pain. And last night at midnight because her diastolic blood pressure was staying well above 95 for over an hour. Without the nurse line, I would have been in the ER at least once.

The shower service is not very helpful. Because the aide comes when she is able (understandable), MIL has to adjust to the aide’s schedule. This doesn’t work for us. The aide is super nice the process just isn’t great for us .

The nurse who told me I couldn't use the comfort pack medicine was either mistaken or lying . When I called the nurse line due to MIL’s chest pains, the nursing supervisor called me back to discuss using the morphine that was part of the comfort pack. And when the actual nurse came by, she suggested we use the Lorazepam. I’m still thinking about this situation so haven’t discussed it with the nurse in question or supervisor yet.

@ButterflyWings - Even though MIL used Lorazepam for decades until recently, the Ativan sent her into delirium. She was already pretty agitated and confused prior to the medication so I can’t say it was all due to the Ativan. But still.

On a lighter? note. MIL has always been an imperious personality. In actuality, it’s a defense mechanism from early childhood trauma but pretty ingrained after 80 years. Last night while deep in delirium, she was trying to get out of bed. When she wasn’t able, she made a rather grand beckoning gesture with her frail hand. Because she’d already tried to smack me once, I was keeping my distance. I wasn’t worried about the slaps as much as the nails clawing me. And her legs were cocked and ready for a good kick to my chest. I’d been through DT’s with my FIL and know what delirium can turn into.

When I told her I wasn’t coming closer until she straighten her legs, she gave me a look of total disdain. I was pleased to see her personality peek out.

Hope5757

Edited to clarify that the nurse opposed giving comfort medication to a hospice patient who was full code.
——————
The nurse who refused to administer the comfort pack medication spent over 30 minutes trying to convince us to change MIL to full code. He repeatedly stated he had a philosophical and ethical conflict with treating a hospice patient with comfort medication. Therefore, he would be unable to administer or approve use of the comfort medication that had been previously provided to MIL and delivered to us.

I reminded him that his supervisor had suggested we use the comfort pack and a peer had assisted us with administering Lorazepam earlier in the week. I asked if this was personal position as it didn’t appear to be an agency position. He agreed that it was a personal position but one shared by colleagues.

I asked him why he was assigned to us in light of his personal conflict. To which he didn’t have a response.

I’m still trying to assess this situation but in the meantime, the nurse who helped administer the Lorazepam agreed to be MIL’s nurse. I plan to meet with the nursing supervisor later in the week and request the change. I’m still thinking through my actions regarding the other nurse.

JeriLynn66

"Therefore, he would be unable to administer or approve use of the comfort medication that had been previously provided to MIL and delivered to us.

I reminded him that his supervisor had suggested we use the comfort pack and a peer had assisted us with administering Lorazepam earlier in the week. I asked if this was personal position as it didn’t appear to be an agency position. He agreed that it was a personal position but one shared by colleagues.

I asked him why he was assigned to us in light of his personal conflict. To which he didn’t have a response.

I’m still trying to assess this situation but in the meantime, the nurse who helped administer the Lorazepam agreed to be MIL’s nurse. I plan to meet with the nursing supervisor later in the week and request the change. I’m still thinking through my actions regarding the other nurse."

I would be calling the Administrator. The comfort kit is ordered by the Hospice MD. The nurse who has a "personal opinion" is irrelevant. Call the Administrator today. This is unethical behavior on the part of the Nurse. IMHO.

EDITED to add: Retired Hospice RN

ButterflyWings

Good for you. That is so inappropriate I can't even stand it. The good thing is, he is not in charge. And IMHO he should have a "philosophical and ethical conflict" with working for a hospice agency, period. It is almost like he is there to try and force his opinions on people and redirect them from the main goal of hospice. OMG.

I would not discuss this further with him if I were you. Waste of time and breath. How dare he impose his biases on your LO and family. And at the time of most need for compassion and support, not imperious, opinionated BS. I would report that to the main office. Infuriating.

M1

totally agree, I’d raise hell with the administration. Completely inappropriate. Personal prejudice has no place here. Really unfortunate that this individual made things more difficult for you when it’s been difficult enough already and I would absolutely tell the supervisor that.

Kibbee

I would show him the door and would be on the phone with his manager and on up the reporting line immediately. This “caregiver” has no business working in a hospice setting. He should absolutely no way, no how, be pushing his personal beliefs on you, your family, or on any other families that are in the midst of an already emotional and stressful end-of-life caregiving situation. Shame on him, and frankly, shame on the hospice organization for not vetting this employee better before hiring him and sending him into people’s homes.

ButterflyWings

@Hope5757 on another note, the shower cna may be able to help you with a range of hygiene tasks instead of an actual shower. Possibly a bedside sponge bath, or even maybe filing her nails a bit if she will allow "a manicure"?

DH has allowed gentle dental hygiene with the sponge toothbrushes and a bit of water + mouthwash. The CNA could get him to open his mouth when I could not. And he has always been willing to let her wipe his hands and rub lotion into his hands and arms, with a little massage. Your glimpse of your LOs regal persona despite her condition the other day made me smile too. Maybe she won't mind a few minutes of the royal treatment even if it is nap time. She may even sleep right through it, but it still be soothing and good for her skin.

It is worth asking the team lead about what else the care plan can include since I agree the "pop up" nature of the aide that was assigned physical care was not ideal, and never worked for DH. So we passed on that but the agency assigned that person some things to do other than just drop off supplies weekly. And it gave me a few minutes respite plus a different socialization opportunity for DH. Even if just 15-30 minutes.

housefinch

Heavens!!!! You don’t need that on top of everything else. That’s totally unprofessional and inappropriate, I agree with everyone else. And you probably barely have bandwidth for getting through a day, much less addressing that mess. I’m incredibly sorry you and your family received that treatment from someone who purports to be a medical professional. Keep doing the wonderful job you’re doing.

Hope5757

I edited my post to clarify that the first nurse opposed giving comfort medication to a hospice patient who was full code.

The new nurse is helping us greatly. She says MIL is transitioning and that although she could have periods of rally, her system is shutting down. I have plenty of comfort drugs, detailed instructions on non verbal pain indicators and the second nurse told me to call her personally as needed. She’ll be back tomorrow to check on MIL

She is still full code. But I anticipate when MIL becomes unresponsive and we call the hospice line, DH will verbally authorize DNR. Nurse confirmed a verbal change to the POST form was acceptable.

ButterflyWings

Thank you for the update. It sounds like you finally have the compassionate professional support needed at this difficult time. Sending hugs to you and your DH. I hope your MIL's transition is as pain free and peaceful as possible. You are such a gift to her.