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When to start hospice?

luvmymom1991
Posts: 1
Joined: Feb 2011

My mother-n-law has been fighting cancer in various forms for over 20 years. She has had breast (right breast mast.), colon, liver (twice), and now lung (2 in left lung).

She is a very private woman and lives alone. She is only 62 and fiercely independent. Over the years she has just "lived" with cancer and doesn't really understand that this may be the end. She has been fighting this last bout, which has been deemed terminal, for 18 months (she was given 6 at initial prognosis).

She lives 90 miles away from us, and my wife has been commuting every two weeks to take her to treatment. This is very hard on us as everyone here knows.

Lately, she has been getting more and more "sick". She still goes to treatment but half the time they can't treat her because her white blood cell count is too low. Just this last week her breathing is getting harder and harder.

Anyway, my question is when should we invoke the hospice services? My understanding is you can't go to them until you "stop" treatments? I don't think she's at the point of quitting just yet; amazingly.

Would it be better to have her moved here, or have her stay at her home for 20 years? She has resisted moving here in the past.

My biggest fear is that she will pass in the night all alone and we won't find her until later that day.

Are there other kinds of "buddy systems" out there? She has few friends, and nobody, besides us, checks up on her. Her doctors office calls a couple times a week as well.

Thanks for listening, and any advice is appreciated.

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Hi,
So sorry that this is happening to your mom, to you and your family. In my experience with my husband, a person is eligible for Hospice enrollment once they are given a prognosis that they will not be cured of this beast, that palliative care is the best treatment. Many doctors and insurances consider some chemos, radiations and treatments as palliative, to assist the patient with quality of life, or to reduce pain or discomfort. Thus, making it possible to receive Hospice care as well as treatment.

Definitely, speak to her Oncology Team. Share your concerns with them, and tell them that you believe it is time for Hospice. Many people think that Hospice is "the end", but as studies show, it is not always so. Many survive longer and in a better quality of life state. It may allow her to remain in her home for a little longer, during which time you can begin to "work" on bringing her to your home to care for her.

I hope this is helpful, if for no other reason that you know that you are not alone in your concerns. Sending you best wishes.

Lucy

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

Indeed, talk to the local hospice folks, as it's never too soon to do that - they are very good at determining timing.

About your fears - if she were to die in her sleep and not get discovered for a day or so, that might end up being what she wants. Not everyone wants to have their loved ones around them at the end, or feels deprived if they aren't. Some really do just want to go peacefully into the night. . .

In any case, don't worry about what you can't control just yet - if you can get her to accept hospice people coming to her house every day to check on her, everyone will be happier all around, I suspect.

grandmafay's picture
grandmafay
Posts: 1627
Joined: Aug 2009

I advocate calling hospice sooner rather than later. Each hospice seems to handle things differently. Usually if the doctor will say that she has 6 months or less to live, she will qualify for hospice; most hospices seem to be allowing paliative care for pain However, that decision needs to be made by your mother-in-law. It is her life and her death. That makes it her choice. In the meantime, you might want to see if there are home health workers who might come in to help. You can also ask if she is willing to talk to a hospice representative. They can explain the program to her. Her home is probably more comfortable for her right now. Again, you can suggest moving her. It sounds to me like your wife needs to sit down an ask her mom the hard questions. Hopefully, your mother-in-law will be open to making decisions about her care. After that discussion, I think you need to abide by her choices. As heartless as it may sound, she may choose dying at home alone and you and your wife may have to accept that. My guess is that the time will come when she will need additional care. Then she may be forced to ask for help. She may fight it all the way. I know this is hard on you and your wife. My husband's mother had congestive heart failure and refused any help. She was in her 90s, living with her sister who was also in her 90s. She died in her bathroom. We knew we had done the best we could. That is all you can do, too. Support your wife as best you can. Offer help, but know you can't fix this. Fay

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

It is a tough decision to invoke the hospice or not. my wife who is 53 is on the hospice list but we really want to keep her at home. This is where she wants to be and between myself and the our 3 children in their 20's we are trying to care for her here, I would suggest to take advantage of all the services that are available which is what we are doing. It is a personal decision what the family wants and if you can look after the sick one or not. We felt it between all of us we can care for her at home then we are also not spending all the free time away from home.

Good Luck it is a very tough times.

sarge57's picture
sarge57
Posts: 50
Joined: Nov 2010

It is a tough decision to invoke the hospice or not. my wife who is 53 is on the hospice list but we really want to keep her at home. This is where she wants to be and between myself and the our 3 children in their 20's we are trying to care for her here, I would suggest to take advantage of all the services that are available which is what we are doing. It is a personal decision what the family wants and if you can look after the sick one or not. We felt it between all of us we can care for her at home then we are also not spending all the free time away from home.

Good Luck it is a very tough times.

jenene
Posts: 40
Joined: Oct 2010

I just started my husband, age 38, on hospice yesterday. The admissions nurse explained to us that a patient can't be on chemo or radiation as a patient of hospice, which we aren't anyways. She did say many people go off hospice get their treatment and then re-admit themselves when they are done. Hospice has been wonderful so far. I wish I had called them sooner. They can go to your house as often as you need. If you need someone to check on your mother daily they will do that. Once on hospice all of the medication is covered, so no co-pays. Also any medical equipment is covered as well. Also hospice is completely free and covered by insurance. Anyways, hope this helps, this is all new to me as well.

grandmafay's picture
grandmafay
Posts: 1627
Joined: Aug 2009

Our hospice did allow for radiation if it was for pain relief not cure. Check with yours as to qualifications in your area. Fay

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

In answer to you're question: yes, once the patient is admitted to hospice all treatment with the goal of extending life is stopped. So if your mom is still gung ho about continuing treatment, this may not be the option for her.

Every hospice is different, but I have nothing but the utmost respect and admiration for the hospice program that my husband was in before he passed. At risk of sounding corny, hospice is fairly self contained - all meds, medical equipment, home health services, doctor-nurse-therapist-chaplain visits are done under hospice. When Pat was first admitted to the program, he had some medical equipment from another company the went back. Hospice makes things as simple as possible for the patient and the family.

I mentioned home health aide. The way the program works here is the patient gets an HHA for 20 hours a week, for 4 hours a day. This person can do all sorts of things, from big to small, at the patient's request. I asked the HHA to run to the deli for me numerous times because I was unable to leave the house. It helped this gentleman was a sweetheart.

One more thing - hospice is very concerned about patient SAFETY and COMFORT. They will talk with the patient about preventing slips, trips, and falls, as this would cause the person to be admitted to the hospital and most likely kept instead of going home. If hospice feels that she would be better served either with family or in a palliative care facility, they will say so.

Sometimes it's easier to tell someone else what your fears are and what you want instead of burdening someone you love. Your mom sounds like my husband in that regard and there are things that I wish he would have spoken to me about. Definitely inquire about hospice, and see if one of her doctors can speak to her about it. At the very least ask if you can "look into it for you, Mom." She may feel like starting hospice is an admission of defeat, so if you pose it as an information gathering mission instead she may be more open to it.

Best of luck and lots of hugs.
April

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