Can anyone educate me about hospice, please?

[MaryM]

Got a call today from my father's doctor who suggested we pursue this. Dad has Alzheimer's and liver cancer but just a few days ago had been doing pretty well. Guess I need to know about any potential "issues" that they are not explaining(?) to me. Thanks!

 

Mary

[sdWTMer]

I'm sorry about your Dad. I have never had any dealings with hospice, but have always heard that they are great for the most part! :(

[GothicGyrl]

Hospice will forever be known as the "people who helped my grandfather die with dignity and as he wished".

 

Grandpa was retired Army, which ment lots of interferece on the VA's part--they wanted him to do this, die this way, don't die that way, don't use this, use this.. bah.. and bullspit.

 

When it came time for us to call in Hospice, they made **** sure that the VA did NOT mess with my grandpa's wishes. He simply wanted to die at home, in HIS bed, surrounded by his family with ZERO medical interference. The VA was NOT going to pay for this, but thankfully Hospice knew exactly how to deal with them. :)

 

The got their butts kicked. :) And grandpa died at home as he wished and how he wished. And the VA paid for it. :) AND he's partially buried with full honors, on VA grounds :)

 

Take that VA... Hospice is your "life"line to death. They help it happen with dignity, with pride, with family/friends and most importantly HOW YOU WANT IT. They intervene on your behalf and make sure you get your final wish.

 

I <3 Hospice. It's the one charity I will support.

[wbtx]

Sorry to hear about your dad. My husband is a hospice nurse. I don't think there is a down side unless you choose a bad company. They provide nursing care for the patient, support for the family, medicines and supplies related to the terminal diagnosis, etc. He has been with hospice for 5 years now. I will be glad to answer any questions, that I can.

wanda

[Unicorn.]

with dignity, with pride, with family/friends and most importantly HOW YOU WANT IT. They intervene on your behalf and make sure you get your final wish.QUOTE]

 

 

Just as GothicGyrl said. They are the patient's advocates. They provide patients and their families with all the support they need. When my mom was on hospice care we had nurses aide coming twice a week to bathe her. A nurse came over almost daily to check on her. Hospice doctors wrote scripts for morphine drops (near the end) to ease pain, etc. I can't imagine what it would have been like to watch mom die without their help. She died peacefully at home, surrounded by her children. I don't think that would have been possible w/out Hospice.

 

I'm sorry about your dad. I will say that usually, once hospice is called in, what they are not telling you is that he probably doesn't have a lot of time left. Enjoy every minute you have with him. If you have specific questions, just ask. ((( )))

[MaryM]

Thank you all! This is very encouraging. Am keeping my fingers crossed that he accepts this service. I am sure I will have more questions after their initial visit so I truly appreciate your offers of help. Wanda, I will most certainly keep your dh in mind for specific questions - thank you!

 

Mary

[6packofun]

It's making the long distance care of my husband's grandmother possible! They constantly evaluate and re-evaluate her health care and provide whatever she needs while she resides at the assisted living facility. Sometimes she's doing well and they visit less. Sometimes her Alzheimer's and lung cancer take a toll on her and she needs more so they are there for her. They've made it possible for her to stay in her new "home" with friends at the assisted living place while still being cared for as she moves into the final phases of her disease and her life. It's nice to have 2 concerned parties letting us know if she needs anything and updating us.

[Blue Hen]

Cyber Hugs to you Mary. In late August, '07 the Dr suggested we call in Hospice for my Dad. He had colon cancer. Hospice provided the means for us to keep Dad at home where he wanted to be.

 

Couple items I encountered as a family member. One family member was under the impression that hospice would come in and be with Dad 24/7. That isn't the case. They were there to help with daily bathing, and to make sure that Dad was comfortable and not in pain, but were only physically there about 1-1/2 hrs every other day. They were available 24/7 for the family's questions and concerns. They were very guiding to us about what to expect as his time drew close.

 

Hospice provided all the medicine to keep Dad comfortable, all the medical equipment (bed, O2, bathing gear....) needed to keep Dad at home where he wanted to be.

 

Keep us posted as to how things are working for you. Really!!!

[Karen sn]

Basically - I feel we let people die with dignity. And we medicate for pain and suffering. You can die at your own home or in a special hospice home (I happen to work in a hospice home).

I love hospice because I am disgusted by doctors who will not let anyone die ever! Hello.....if you are 93 and your husband just died 3 months ago and you are fighting every one of their efforts to put a tube down your throat or an IV in your arm - after having just suffered a stroke - what the he#* are you supossed to die from if they can't let you go at 93 from the stroke?

 

Sorry - intense situation when I was in nursing school....but the woman did not want our interventions - and she was as strong as a horse fighting us, especially considering her recent stroke.

 

Anyway - get hospice involved. They will give him extra care while he is living. Bathing him, shaving him, loving him. I have yet to meet someone in this field who is in it for the money! (Pay here not good - but I love my residents and I feel good not going against my own morals and ethics).

 

Most CNA's and nurses in hospice are wonderful. Our CNA's are awesome and you can bet that every patient dies having been loved and well cared for.

 

Where does he live now? Is your mom alive? They really help the families too. Sometimes I feel that I do more physically and mentally for the spouse or kids of my dying patient than I actually need to do for the patient him/herself.

[RegularMom]

We also had a good experience with Hospice when my father was dying, eight years ago.

 

Not only was he able to die peacefully, at home, and with dignity, but our Hospice nurse was very kind and helpful to me and my sister when it came to the day to day things, as well as our dad's actual death when it happened.

 

HTH

[Mekanamom]

Hospice was wonderful for my grandmother. They kept her as comfortable as possible. They were kind and patient with her. She was in assisted living, and the regular staff there could not take as much time to tend to my grandmother as she needed. Hospice could, and did.

 

My mom and I were with my grandmother as she died. And then hospice was there for us, too.

 

It takes a special kind of person to offer the physical and emotional support that hospice provides... and it's definitely a worthwhile service to look into.

[Remudamom]

My stepfather is being monitored (?) by hospice now and my mom is so grateful for the help.

[Robin in Tx]

My mom died on hospice. Some of them are better than others. Get several recommendations and interview each of them. One thing you should know/ask about is that usually (if not always) they will not do anything to prolong life. Which means no more intervention with drugs, therapies, trips to ER, etc. If your dad is dying of cancer, they will certainly take him to a doctor if he falls and breaks a bone (for example), but you will not be taking him back to his regular doctors for any ongoing treatment. When my mom went on hospice, they even took her off her meds like Lipitor, etc., because they wouldn't cover any meds that prolonged life. They only covered her "quality of life" drugs (i.e. comfort).

 

Nurses didn't come and stay with my mom any... just a check up now and then. But I just had a friend pass from cancer, and her hospice nurse was at the house at least eight hours a day. So different hospice programs offer different services. I don't understand what the difference is, to be honest.

 

I'm sorry about your dad. I wish you peace and comfort.

 

Robin

[Ali in OR]

My mom passed away in June after 2 weeks in hospice. All her kids and sister were with her and it was very peaceful. Here are a few things I know now but didn't know then...

 

-once you are in hospice, you do not call doctors or 911 for emergencies or anything like that. Your care and meds come from hospice.

-hospice can dispense really good meds. I got the impression it was stuff (or maybe amounts??) that Mom's doctor couldn't prescribe. My mom was a lot more comfortable once she was in hospice.

-at least where my mom lived in CA, the family and friends needed to have someone there with mom 24/7. This was a hospice requirement. As someone mentioned, the hospice staff came a few times a week and Mom's nurse came when we called her as Mom was failing.

-hospice can provide equipment that will make it easier to care for your loved one--bath seat, walker, wheelchair, hospital bed, commode, etc.

-I think hospice really helped all of Mom's family through the process of Mom's dying. It was somehow a little easier with a wonderfully compassionate nurse explaining all that was happening.

[readwithem]

They were fabulous with my fil. One thing to know, just because you've "called them in" - it doesn't mean the end is imminent. They really want to be included and involved before you reach that point.

 

They were a calm, confident, knowing aspect of his last days.

[Guest Katia]

When the doctors told my mom there was nothing else they could do for her but send her home, they had Dad call Hospice.

 

Hospice took over everything and helped my Dad as much as they could. The nurses were terrific. I can't say enough good things about them and all the services they provided: pain meds, wheelchair, bed, etc. Everything. She even called the undertaker to come pick up the 'body' and had us leave the room so we wouldn't have that 'picture' of Mom in our heads.

 

I highly recommend Hospice.

[*LC]

I'm sorry to hear about your Dad.

 

If there is more than one hospice organization in your area, get in touch with all of them.

 

Before you make the calls, you need to think about a few things that people here have mentioned. If your Dad is able to talk lucidly at all, you will want to get his input.

 

1. Do you want him at home with hospice care or in a hospice facility? When the hospital set up hospice for my husband, they called an agency that mainly does facility care. I got the hard sell for their facility. It was extremely stressful to decide what he would want while be pressured that "there is only right choice." If we had thought about it ahead of time, it would have been less stressful. They disapproved of my choice to bring him home, and it was not a good transistion.

 

2. Is your dad's cancer being treated? With most hospice programs that would have to stop.

 

3. How long can patients stay in their program? There was a lady in our church who was kicked out of the hospice facility a few days after her doctor sent her there, because she was too well. (I heard that Medicare wouldn't pay.) I would think with Alzheimers you would want to avoid too many changes, so it might be worth asking about that. I know another man who has been under hospice care in his home for a few years, so different agencies are definitely different.

 

4. Since your Dad was doing well a few days ago, you might want to ask what is the policy if you do change your mind if he rebounds from whatever happened for the doctor to suggest hospice.

 

5. If your dad is going to be treated at home, you can turn down the "things" that hospice wants to provide if he already has them. We already had a hospital bed, but they wanted to provide one. My husband was paralyzed and I didn't want to put him through needing to be moved to another bed.

 

6. For a hospice facility, ask about visitation? Children's visistation? Go visit to see if it is what you want.

 

I promise I am not anti-hospice. The first day was awful, but it would have been even if they handled everything correctly. (The nurse that came to do his intake at 10 p.m. complained to me about what a long and rotten day she had had. I finally told her I would take her day over mine any time.) The nurse my husband ended up with was great. I liked knowing all I had to do after he died was to call them. They came and handled everything.

 

LC

[MaryM]

Many thanks for all the additional information and words of encouragement!

 

Mary

[shell in SC]

more comfortable. FIL passed away almost a year ago and hospice was called for the last few days at home. They really fought (why doesn't that word look like it's spelled right) for him-he had some kind of mixup with his morphine rx and the nurse just took over the situation for us and resolved it as smoothly as she could. I had no idea what hospice even was until FIL's last days I was so impressed and moved at their dedication and compassion.

[Anne/Ankara]

I'm sorry to hear about your Dad, Mary. That must be very difficult-- all our thoughts are with you and the family...

[Alice]

He died of lung cancer and hospice was wonderful. Like others have said it enabled him to stay at home until the end (he died at home quietly in his sleep with my Mom and Dad there with him). He was able to get all the pain medications he needed as he had a lot of bone pain from the cancer. They also helped with getting him things like a hospital bed.

 

I think it was also very helpful for my Mom (perhaps even more so than for my grandfather). My Mom is very emotional and finds it difficult to make decisions and deal with sickness but was determined to be there until the end. Hospice really gave her the support she needed to be able to do that.