What Do I Say...

[Michifura]

I am not a hospice nurse, but have had great experience with hospice with my mother in law and referrals for hospitalized pts where I work. I do have an interest in hospice and hope to get into it in the future, therefore I am a big hospice advocate.

My brother's partner of 16 yrs was diagnosed with lung cancer on January 2nd and just passed away Aug 1st. It was very aggressive, he did go through chemo and radiation, tests, biopsies, etc. apparently did everything possible but with no luck. We live in different states, I offered to go and help out, but was told they were ok. It seemed to me they were in denial about all this disease process. I kept mentioning hospice but my brother was like "no, we don't want that, once you mention hospice or hospice comes in, you know what that means". Well, finally (but I think too late) they decided to speak to hospice on a Wednesday and signed up for home hospice. On Thursday, my brother called panicking that he had received a delivery of six meds and did not know what to do with them, and he had already called the hospice nurse and she mentioned to follow the directions/orders that were written down for times of when and how to give the meds, did not do home visit. My brother also requested a urinal and was told they could not provide that. Early Friday morning about 0400, my brother's partner passed away at home. My brother freaked out, called hospice could not get a hold of anyone, was put on hold, finally (about an hour later) was able to get a hold of the nurse at home. The nurse came and helped my brother dress and get his partner ready for the funeral home to pick up.

My brother keeps telling me that he does not understand how I talk very highly of hospice and he had a "horrible experience" with hospice services. Not pleased at all with hospice.

He thinks at this point he did not give the meds right and by giving all the meds hospice sent w/o proper education he "killed" his partner.

I have tried to explain to him that he went over and beyond to take care of his partner as the primary caregiver for 7 months by himself and he is not at fault for his disease or him passing.

Is this normal for individuals to go through those feelings and thoughts after a loved one passes? What can I tell my brother, what can I do to console him?

I flew out to be with my brother for about a week and of course was there for the services, but now I am back home, thousands of miles away, and he is by himself with no family around.

Any thoughts or comments?

Thanks!!!!

[leslie :-D]

as you already stated, it sounds like your brother was in denial until the very last moment...

and when reality set in, he lost control.

even seemingly simple tasks (such as reading directions on the meds) were overwhelming to him.

and from that point on, the end came far too fast, sending him into crisis mode.

now he will grieve...

and with time, will put the pieces back together.

be loving, supportive and encourage him to get some counseling.

i doubt he'll go for the therapy, but in his own time, he'll see his partner's demise in a whole new perspective.

in time.

many loving hugs to you and yours.

the journey isn't over yet.

leslie

[DeathzAngel2]

I am so sorry for your brother's loss. It is very common for caregivers who are left behind to worry that they did something to hasten the loved one's passing, whether it be by giving too much/too little medication or by wishing for the suffering to end. Please reassure your brother that what he is experiencing is normal & he did nothing to cause his partner's death...the disease did that.

Unfortunately, since they initiated hospice services so late, they were likely not able to access all of the available disciplines for additional support, such as social worker & chaplain, or build any rapport with their nurse prior to the death. As a hospice case manager, I always see my new patients within 24hrs of admission to go over medications, disease process & what to expect. I am a big advocate for hospice & am therefore very sad to hear of your brother's experience.

The hospice should provide at least 12 months of grief assistance for your brother; please encourage him to accept this help. Beyond that, your support & reassurance that what he did for his partner was an incredibly loving gift, as well as your shoulder when needed, will be most important. Blessings to you both.