Questions About Hospice

[Annie01]

Hello,

Can anyone share some advice/suggestions about how and when to get hospice involved?

My 70 y.o. Mom has been living with Stage IV NSCLC for a year. She has been going "downhill"--not seeming like herself since Christmas. She was released from hospital today after draining pleural effusion but we're not sure of results yet. Dad is primary caregiver and I live 3 hours away. Dad doesn't have a lot of patience and I know he's scared and stressed.

My sis lives 2 miles from them but has a difficult time knowing when to get involved and feeling like she's stepping on Dad's toes. She brought up hospice a couple months ago to Dad but he indicated they didn't need the help.

I've heard such wonderful things about hospice and would like Dad to reconsider, but not sure how to broach the subject without making him think we don't think he's capable of handling Mom's care. They've been married nearly 50 years and Mom has always taken care of everything, so I think Dad's feeling a little insecure. He's doing a terrific job, btw. I don't want Mom to think we're giving up either. The onc. hasn't brought it up.

What do I do? Thank you!

Annie

[Nick C]

Hospice like all things is a process involving paperwork and meetings and understanding of what it all means. The time to do those things is when you feel up to them not when you needed the service yesterday.

It's kind of like a will. No one wants to do one. It feels like you are signing up for the end...you aren't...you are just preparing for something that could be needed tomorrow and hopefully won't be needed for a long time.

My experience was we were lookig into it and gathering the info...well turns out things happened very fast and wee didn't have time to get everything done. But I wish we had.

Because we didn't have hospice in place we spent a somewhat unpleasant 4 hours plus in the emergency room and then to ICU where perhaps mom would have just gone straight to hospice for her last day.

Also, if you are in a situation where an ambulance needs to be called, DNR type protocols WON'T be followed by the techs on the ambulance unless there is a state issued DNR bracelet. And this is somethign hospice will help your family with if those are your wishes. You don't want to be in the situation I was in telling a tech who had a defrib with him that if he used those on my mother I'd turn around and use them on him.

[jaminkw]

Hope Nick's post helped. Start the hospice thing as though it might be something you might need in the future. The people are usually so nice, your Dad might get to like them in the process. In any event, I do understand it's hard for some older people to accept they need help. But circumstances sometimes turns us around so give your Mom and Dad a try with this. Just be gentle.

Judy

[Annie01]

Wow Nick! Thank you! I never thought of it like that. I think I know how to approach this now.

Mom, Dad and Sis just spent a frustrating 7 hours of mostly waiting at the ER last Saturday and perhaps I could convince them that with hospice that wouldn't be necessary. And, my Mom is a planner who wanted to make sure the will was in place, the funeral home arrangements were made etc. shortly after diagnosis.

Thanks to you too, Judy! I think it is hard for my Dad to accept that he (they) may need help. He is very traditional and I think he sees it at his sole responsibility to take care of her. I will be gentle.

I really appreciate your help. Have a great day!

[Nick C]

I can't make promises that hospice eliminates ERs or what have you, but I DO know that had we filled out the paperwork, when we did arrive at the ER we probably would have had a hospice person there right away and mom's comfort and finding her a room would have been a top priority.

That said, I do know it is hard.

Best of luck.

[RandyW]

I never used Hospice and have heard so many different stories here good and bad I don't know where to start! But..... Here is my advocate link for help in dealing with hospice finding hospice and all things hospice! Click to go to the site!!!

http://www.nhpco.org/templates/1/homepage.cfm

[jean44]

Annie,

I have dealt with Hospice twice. For my Dad in 2003 and my husband last year.

I was fortunate that in both cases the Oncologist suggested Hospice and even contacted them for me.

They are a fabulous organization. My husband was home a little less than an hour when he passed away and Hospice made it possible for him to be there, even if it was for a short period of time.

We had them for Dad for several weeks and couldn't have had him home without them.

These are hard times. I will keep you in my thoughts and prayers.

Jean

[Annie01]

Thank you all for the info. Thought I'd share the latest...

I called hospice and a social worker politely informed me that it may not be time for hospice yet. He said I need to basically wait until I get a clue from my parents or from the oncologist that the time for hospice has arrived.

He was familiar with my Mom's oncologist and said the onc. is a big supporter of hosipce which was reassuring. He also said the onc. will know how best to approach it with my p's--and that it may be better coming from him than me--my Dad may be more receptive to it.

I know everyone on here has dealt with these kinds of issues, and knows it can be so frustrating, scary and lonely at times. I thank you all for being here. This is truly a place of comfort.

Annie

[jaminkw]

Annie, that does sound like positive news. But I would still take the time to tell the onc that you contacted hospice because you thought your Dad needed help. You could tell him they said he would be the best one to know when. Tell him you are depending on him to get the ball rolling when/if the time comes. These Oncs do get busy and I would hate to see you depending on him and him not knowing that and droping the ball.

Judy

[Annie01]

That sounds like good advice. Thanks Judy.