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When do you call hospice?

JackieA
Posts: 150
Joined: Mar 2011

Any should I call hopice? Things are getting worse not better? Not eating, no bm, more pain.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

I was the bad guy, I guess, because I called the oncologist's nurse and told her how uncomfortable Mom was, and it was time for hospice. Mom's doctor called her and had a nice phone conversation, during which he told her he thought hospice would be the best way to keep her comfortable. That way, it seemed like they decided together. A hospice intake nurse was here the next day, and we had oxygen by nightfall.

Hope my story helps. It's so hard and seems so lonely, but it has really worked out well for us.

Noellesmom
Posts: 1317
Joined: Aug 2010

Talk to your doctor's office: they may have to make the call.

Hospice can do an evaluation and advise what the best plan is. If it is not time for hospice, they will say so.

Call!

slg
Posts: 200
Joined: Jan 2010

We too have just had an informational meeting with Hospice. They are coming back tomorrow to do the assessment part of it.
My husband opted to go forward with Hospice since it would be helpful in regard to medications, help for me and equipment and hopefully no more co-pays!!!
We shall see. It just seems so final and sad. Most people however, that I have told have agreed that hospice is wonderful and will be so helpful. I sure hope so because at this point I am so sick of the insentative people who say the most inappropriate things at this time. We caregivers need to stick together!!!

JackieA
Posts: 150
Joined: Mar 2011

Lately, things have just been strange. My husband talks about dying. He has not had a bowel movement since Thanksgiving. He stopped eating for a few days, ate some the last 2 days. He is always in pain. I just don't know. I posted on another site. He talks to us but won't sit up with us. Just very weak. Sometimes I think I am in so much denial. Then there are days I don't know what to do. He doesn't have the stregnth to put clothes on. IS HE TRYING TO TELL ME SOMETHING!!!!???? Going to dr Monday. Was scheduled for Jan 4.
In NOv. his dr said his CBC numbers looked good. He took a ct on his stomach but he had inflamed bowels, but no blockage. Chest was okay. My husband is severely anemic. Anyway... He doesn't look good and is deteriorating daily. We lay in bed last night and talked until about 3 in the morning. I asked was he scared about more tumors (has more knots under skin lately)--some in neck and around rib cage. He said No...it is what it is.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Yes, your husband knows more about his future than anyone. Listen to him, and don't let doctors talk him into heinous treatments that won't work. It sounds like he has begun the work of leaving, which is a much bigger task than you can imagine. Every day I'm surprised at the trouble Mom is having letting go of control, but every step she takes brings her more peace.

You need hospice help, honey. I can't tell you how great it is to see that nurse coming through the door ready to answer my questions and help solve the day's problems. The hospice chaplain is a hoot, too, and Mom really likes having someone to talk with about the end of her human life. We have our own minister who comes to call, but the hospice chaplain is just so darn good at putting this process into words.

Your husband is right. It is what it is.

cosmic_me
Posts: 35
Joined: Dec 2011

Hi Jackie. Hospice was an incredible gift to both me and my mom who just passed on Dec 14th. Here's my advice. Call your loved ones primary health care provider and simply ask for a quick referral to either your local home health or hospice. You don't need to ask them if the time is right. You can say the time is right.

If your loved one is now on palliative care and treatment such as chemo has been stopped then you will meet with hospice. If your loved one is still recieving treatment you will meet with home health. Both are incredible outlets. Before mom came home from the hospital after surgery I did some calling around and spoke to Hospice. They said many families wait it out when they don't have to. Hospice is readily available very early on in the palliative stage.

Home Health had a hospital bed at my doorstep the day mom was to arrive home from the hospital. We were immediately working with home health the day she got home from the hospital. An RN came and set us all up. I provided the daily on hands care but any I.V. administration was taken care of by an RN in the home along with constant education how to handle anything related to moms health. They come weekly to evaluate and take vitals, flush the port and in my moms case even did her INR tests. They did all the communicating to her doctor for us and the Doctor could relate back how to administer on going care at home.

We switched over to hospice immediately when chemo no longer was working and it was heart breakingly apparent things were terminal. Mom was not experiencing severe discomfort at this point but because she was going to be getting palliative care hospice was available.

The routine was exactly the same with all the incredible R.N's sent to the home specializing in end of life care. We were with hospice for a total of 3 months before moms passing. They are there via phone 24 hours a day and start off coming once a week to evaluate and show the on hands care provider how to administer the meds for slow time release and break through pain. Just like home health they communicate to the doctors on your loved ones behalf and get any meds they need ASAP. They provide every thing your loved one needs for excellent comfort along with a team that includes a social worker available to deal with the very intense level of emotions they experience. They lessened a huge load on me when it came to daily trips to the pharmacy by having 95% of moms meds fedexed as needed. They truly are angels.

When there were any sudden changes and there were a few I could call day or night and I'd feel suddenly not completely alone and able to complete what needed to be done to make sure mom was comfortable while we faced a new symptom. You don't have to do this all alone all the time. It's scary being the primary care provider at home 24/7 but when you are in doubt they are right there guiding you. You don't need certain symptoms like the above ones you've described in order to seek out every thing available to your loved one while they are in their home. So please make the call to your loved ones Doctor and request the referral and you will have an entire team of professionals at your doorstep in one days time. I hope this helps. You will be surprised at what they will offer you as the care provider as well.

grandmafay's picture
grandmafay
Posts: 1629
Joined: Aug 2009

It doesn't hurt to talk with your dr and hospice. Hospice is a great help cfor everyone. I really appreciated the 24/7 phone number. I was able to ask questions rather that worrying if I was doing the right thing. I wish we had called them earlier. I know it feels like you're giving up, but for us it was acceptance. Besides, if things get better you can discontinue service. Take care of yourself, too. Fay

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