Hi eKim, 

Thank you for your information. This is exactly what we want to know, my brother and I totally agree with this procedure. And we feel deeply sorry for those patients and families who are in the waiting list of this hospice. Really really sorry!

We can imagine how long the waiting list can be, we saw hospice rooms emptied in the morning, and occupied again in the afternoon many many times. No wonder the palliative team want to have family meetings with us so often, mom’s really “too healthy” to live in a hospice.

But that’s part of the disagreement between mom and us now. We think it’s not fair for mom to occupy this room too long, maybe she can accept other arrangements since she’s not leaving us any time soon. But mom insisted: “Some volunteer told me that they once had a patient lived here for a year!” and “You two are my kids, why you not support me but with others?” ........ So, we are now the worst children in the world.

Mom told us several times that she heard some horrible stories about nursing home from nurses and friends, so she’s scared of being kicked out from hospice since she believe this is the best care she can get before she leave. I don’t know how real are those horrible stories, actually, we are not a very resourceful family, and my parents only exchanging information with their Asian friends. Maybe, because of language barrier, sometimes mom did not understand the real message palliative team gave her, and this can be the main reason which makes her so sorry all the time. Now I am clear about the procedure, I think we know how to help mom making her next decision, or at least, we will give it a try.

Thank you so much!

My dear virtual friends, 

Thank you for all your warm messages!!

My brother and I had a long talk with mom’s palliative team last week after the regular family meeting, now we’ve came in some agreement which I think it’s the best solution for now.

Because mom’s situation is getting better (that’s really a miracle), doctor suggested again that mom should move to other long term care facility as they mentioned few months ago. Mom’s getting upset when hearing that, so the team promised her that let’s not make any decision now and they will review the whole situation again after summer.

Since mom’s getting emotional during the meeting, my brother and I had to invite the palliative team to hospice garden and had a private meeting with them. Doctor was frankly to us and said they do have a long queue of patients waiting, and they really think my mom should move to other facilities soon because she’s getting progress, they just don’t understand why mom cannot think positively about leaving hospice. We explained that some of the nurses / volunteers kept telling mom that this hospice is the best care she can get before she leave (from their experiences), and also scared her with lots of horrible stories about long term care facilities. Now mom’s both legs are weak and can barely move her hands (from the two spinal surgeries 6 months ago), she worried about the “care quality” very much. The palliative team understood that’s the main reason which caused mom’s insecurity, but those horrible stories are just hearsay, maybe we can visit those suggested long term care facilities by ourselves, took some photos for mom and then discuss with her again. We think that’s a good idea!

And the team will arrange a Mandarin-speaking social worker to meet with mom, dad and us soon. They understood that our family is having a serious internal communication problem now, and we all believe only until mom let us know what she truly wants / needs, then we will know how to help her in this precious “extra reward” time (she outlived Oncologist’s prediction for 5 more months now).

The good thing is, that’s a great relief for us to know that mom’s situation is still stable, we all feel thankful of it. Especially my dad, even he still drives to hospice twice daily and can only rest for 2 hours in between, but he’s in a more happier mood. And the team promised us they will talk to the nurses and see if they can offer some help with mom’s meals and routines, so we can visit mom together and enjoy family time with a better quality, not “working” three shifts separately like now. 

Doctor suggested me go back to my husband for a while, at least for a few months. A long “standby-and-wait” can cause mental weakness to everyone, we are only human, we all need “recharge” when feeling exhausted. And the suggestion to my brother (and my dad) is just go back to their normal life for a while, no need to always think / worry about the worst, just give our heart and mind a short break ..... 

Now we will go visit some of the long term care facilities from next week, doing some research for mom, and discuss with her again. We will keep trying everything to make her feel safe and secure, whether in a new place or stay here...... 

Thank you all for the help again!

We went to a long term care facility with dad last week, the social worker there is nice, and the location, the service, the facilities, even the residents there are all perfect. We believe mom will be happier and energetic in long term care rather than stay in hospice. 

But when the hospice nurses heard we were visiting the long term care, they spoke to my dad privately and said : “Don’t let your wife go to long term care, this is the best place for her.” (Is that means we should not trust mom’s palliative team?) And we think nurses told mom the same thing again as well. 

So now everything’s back to the beginning. Mom refused to leave hospice, and trying very hard to be “more sick” everyday as she believes that no one will kick her out if she’s getting worse (but doctors already told us several times that mom’s in a progress). And mom doesn’t want to talk to me or my brother now because she think we are with the palliative team, we are as evil as doctors who wants to kick her out from this “best service” hospice.

I am going back to Asia next month for a while, my flight ticket will be expired soon (it will cost a fortune to extend in high season), also because I don’t know how to communicate with mom now...... I wish her can be with us as long as possible, but now she just want to get “more and more sick” so she can keep staying in this hospice. (This has a huge impact on dad as well, dad was so happy to know that mom’s in a progress weeks ago, but now since mom trying very hard to convince everyone she’s “leaving soon”, dad’s back to depress and upset again......) 

Why mom doesn’t want to be with us longer? Who can we trust, the palliative team or the hospice nurses? 

We’ve suffered a lot from nurses’ “friendly suggestions” for a long time...... 

Mom was able to move around with walker by herself when she admitted into this hospice in January, but 6 weeks ago, mom suddenly lost the strength of her legs and can not stand still anymore. We understood maybe her tumor is growing. I was in Asia that time, some nurse told my brother “in private” and said : “I think you and your family should get prepared for the worst. Better call your sister back ASAP.” So I rearranged my ticket and fly back within three days. But when I met the palliative team later and checked with doctor about mom’s status, he was very surprised about why nurse told us so.

Is this some kind of message nurses can “casually” gave to patient’s family?

Another example, mom was in high dose dexamethasone for a few months, there are side effects so doctors were scheduled to decrease her dose gradually. The day when doctors were explaining to mom that they are going to decrease her dexamethasone, I was there, mom accepted doctors’ suggestion very well. Next morning, some nurse came to mom : “I don’t know why they want to decrease your dexamethasone, it can give you good apetite and always keep you in a good mood, why decrease?” ....... Mom’s so upset after hearing that, and has no faith in her doctors again.

My brother and I mentioned about these issues with two social workers and also the doctors. But mom forbid us to gave out those nurses’ names (she think if we speak evil behind those nurses, they may gave her hard time in some way). And since now mom believe only nurses are her true friends, she wants to protect them even we know doctors may not agree with what nurses said to her. 

I don’t know if there are issues between doctors and nurses in this hospice, but is that fair for patient and their family to suffer things like that?