How to approach Hospice Issues. Advice welcome.

[Mike 03]

My father has put up a valiant battle against cancer, but it looks like he is starting to lose the battle. Nobody in my family is well equipped to face what needs to be done. But we need to begin to address this issue of Hospice. My father's oncologist has advised us that this will be the next step.

What I am doing:

Reading "end of life" books.
Internet research on Hospice in my area, and what are good questions to ask.

So, I am doing what I can, but I always wonder if other people have good ideas, like things I should think about that I am not thinking about, or questions I should ask that I don't know to ask, or whether my dad should be in a specialized Hospice or be at home, and what we should consider when trying to help him make these decisions.

Thanks in advance. I am sorry I am not even sure what questions to ask. As you all know, it is really hard when someone you love is dying, and I am not handling it well. Just want to bury my head in the sand.

Thanks for any help.

[SheilaT]

1. My in-laws both were in hospice

at the very end of their lives. They both remained at home, but the family situation was such that around-the-clock nursing care was able to be provided.

I was not directly involved in any of the decision-making. However, I am pretty certain that the hospice people themselves can give you very good direction, once you give them the outline of your situation. I'm sure others can give you more direct advice.

[blogslut]

13. The 24-hour care is important to note

...if one is considering home hospice. My sister and I were able to alternate caring for our mother while she remained in her home. The hospice worker came by once a day to perform checkups, dispense meds and whatnot.

Mother's insurance was very good and her employer fought for her when those bastards tried to drop her coverage - something that came about (conveniently) right after mother chose to forgo "life-saving" treatment.

[elleng]

2. Ask Hospice all your questions. They are great.

Best wishes.

[DesertFlower]

3. my dad was diagnosed with lung cancer

around thanksgiving. he died in a hospice 2 days after xmas. he did not suffer.

[MineralMan]

4. I'm so sorry to hear about your father.

Hospice can be a wonderful thing. There are a number of such organizations. I'd start by asking people about them, if you know people who have used their services. Once you choose one, they will help you with all of those questions you have. Whether your father remains at home or enters a hospice depends on many issues.

I'm speaking from my own experience with my father-in-law three years ago. He stayed at home, with Hospice making regular visits. They helped my mother-in-law and my wife enormously, and helped them understand the issues that were coming up and make good decisions. The Hospice organization you choose, knows the questions that need to be asked and will present options for you, with explanations and information to help you make them.

It's a very difficult time, but it's easier with Hospice helping. But, start by getting recommendations so you can select the best Hospice organization in your area. Your father's oncologist can help, as can a hospital social worker, if there's on on your father's case.

Patience, careful thought, and caring will get you through this. I'll be thinking about your father and your family.

[monmouth]

5. During my mother's last days we asked if she would like to go to

hospice and she adamantly said no. She wanted to stay home. We kept the same routine at home we had since she was operated on. My brother used to check on her on his way to work in the morning and I would stay with her for the day, trying to get her some nourishment (she did not want to eat and that is a sign the body is shutting down.) She would drop her morphine pills so I would make sure they were found and that she took them. She was in her own bed, my brother called me one morning and said she was shutting down, I got to her home and called the ambulance to go to the hospital. She was gone a few hours later, but she went the way she wanted to, comfortable and all relief that could be given was given. She even wanted me to OD her and that was a daily conversation we had..I would kid her out of it. I'm so sorry you're going through this and wish you and your family well.

[DURHAM D]

6. If you have the option of moving him into a Hospice House that is the best option.

No reason to do this at home.

Are you the decision maker?

[Kali]

15. home can be fine

I've been through 5 close family members' deaths three at home and two out, one of each was without the help of hospice and they were much harder.

The three hospice-aided deaths were much easier and the location was irrelevant in terms of care. The ones who died at home wanted it that way. Their wishes and comfort were the primary concern as it should be.

[Viva_La_Revolution]

21. Unless he wants to be at home

We (the family) are taking care of my Gram at home (for the past 3 years). She's almost bed-ridden now, but unless she has some major issue that we can't possibly handle, she will be here till the end. That's what she wants.

[tkmorris]

24. Yes there IS a reason to do this at home

Do you really want to spend YOUR last days in unfamiliar surroundings, in the company of strangers? I don't, and I am DAMNED sure my mother didn't. She didn't have to, she spent her last days in my brother's home (thanks John) under in-home hospice care. All of her family were there, and I know she was glad of that.

For me the only downsides to in-home hospice care are that it can be very difficult, as much of the care must come from you, and it can be expensive. If anything is ever worth doing though, this is. Death is enough of a curse as it is, don't make it harder on those who have to suffer it just to avoid being inconvenienced.

[TNDemo]

7. I would like to recommend a book.

It's called Final Gifts by Maggie Callahan and somebody else. They were two hospice nurses who wrote about their experiences.

The hospice folks are usually more than willing to lead a conversation with the patient and family and answer questions. Have been there and done that several times. My thoughts are with you. I too wanted to run and hide but there is no escape but you can find tools to help you navigate.

[cynatnite]

8. See if you can join a Hospice support group...

There might be something online or where you're at. It will be very helpful during this difficult time.

My thoughts are with you and your family.

[A-Schwarzenegger]

9. Thank God for hospice.

My mom died at home in hospice. You get so much help
of every kind. It's hard, but you'll get through it.

[Horse with no Name]

10. Hospice is wonderful

What I found the most comforting, was that I didn't have to think about it anymore. They took care of everything...and I do mean everything.
Take your Dad home--if your family feels that they can't do that, then find a center. Hospice will set everything up--equipment, staff, etc.
Spend time with him. Keep him comfortable. Cherish the rest of his life.
But remember, you are doing the right thing.
:hug:

[stjohndoe]

11. I recently went through this with my mom

My parents were somewhat reluctant, but finally agreed to a meeting with hospice. A social worker and a nurse came to their house and spoke and answered any questions, and my family was very impressed with them. They basically give a customized "treatment", constantly adjusting to the patients needs. Regular visits to my parents were made by nurses, social worker, pastor, and grief councilor. I feel hospice was a huge help, and would definitely recommend it. We used Amedisys, mainly because the social worker is my neighbor, and I could talk to her and handle things easily so mom and dad didn't have to. Good luck to you and you family.
Don

[lapislzi]

12. I am sorry for your pain.

Hospice is an incredible organization. They are experts. They'll walk you through every step of the process and hold your hand. In consultation with your dad's doctors, they'll help you decide how best to keep your dad comfortable during this time. Some people do better at home; some need a more medically supportive hospital setting. Every case is different, and the hospice people will help you evaluate all the options.

They will also be extremely sensitive to your and your family's emotional and spiritual needs. Many hospices are affiliated with religious organizations and can be a tremendous comfort.

Use them. The are wonderful people, and they are there to help you.

My thoughts are with you.

[Raven]

14. If you can do it, Hospice at home. Talk to them about pain medicine.

How it will be handled. The main purpose is to make your Dad comfortable. I lost a good friend a few weeks ago from lung cancer. He was at home and had a constant morphine drip from a port on his shoulder. He also had a button which allowed him to give himself an extra dose when he needed it. My friend passed away quietly with his family around him. The relief from pain gave him the chance to visit with and say his goodbyes to friends and even plan his memorial service.

Also, give yourself and others caring for him a break now and then...you will need your strength. Arrange for that. Don't be shy about asking friends to cover for you for an hour or two.

This is very tough but think about the fact that you will have a chance to give back to your Dad and say your goodbyes. Some folks never get that honor.

[PlanetBev]

16. This is such a rough juncture in life

My dad died from congestive heart failure in 2009, one day before he was scheduled to go into full time nursing care. I'm am so greatful for that. He would have hated being incapacitated. Right after he died, we had to get my mother, who has dementia, into assisted living. After that, a tsunami of grief washed over me, and I went on anti-depressants, to help me get over the hump.

Mike, first of all, take care of yourself. It's easy to let your own health and other needs go down at this time. Get into a support group and stay close to family and friends. Talk it out, especially with other people who have been down this road.

DU is here for you...

:grouphug:

[babylonsister]

17. I volunteer for Hospice. You should go talk to someone there.

It's a fabulous organization full of caring people; you will get more info from them than you need, all with the caring and concern for you and your dad that is their hallmark.

[Obamanaut]

18. Miz O's uncle went to a hospice locally. He had stopped all chemo

and other treatment because he said they made his quality of life so extremely unpleasant - nausea, fatigue, irritability. With the treatment he was told he would have about 12 months, without about 6 - so he stopped everything but pain management. Uncle had some sort of bone cancer, probably has a name, but I don't know what it is.

When he went into the hospice near the end, his wife stayed with him all day. As she was leaving for the day, he told her to give him a kiss, and walk away without looking back.

He died in his sleep that night. His children and wife were ok with the way this was done. It is the way I would like to go - peacefully. I did not meet the hospice staff, but all of the family who did said they were wonderful, caring people.

This is the only experience I have, and it is all second hand from the people who were involved.

I have a daughter who is a case manager at a senior facility, and she told me the experience listed above is typical.

There should be a case manager for you to talk to, who can give you the guidance you might need.

Our house sends best wishes to your house.

[elifino]

19. My experience with Hospice

I was primary caregiver for my Dad for the last 3 1/2 years of his life. I was lucky in that he lived to the age of 96 years of age and never had to take any meds. The last 6 months were the worse and I had to get some in-home help. I can only tell you that Home Hospice was a life saver for me, Twice a week a sitter came to allow me to do what I had to do as far as mail, grocery store trips, etc. A nurse came twice a week to check on my Dad. Someone came twice a week to bathe and change the bed. They showed me how to manage to change the bed with my father in it. The last 8 days a nurse came everyday. All supplies and any meds were provided and paid by Medicare.
They gave great support by informing me what to expect. In the end my Dad was combative, to the point of hitting, kicking, and scratching. A drug to allow him to relax was provide. He passed in his sleep. I was to call anytime I needed help including when he passed. They took care of calling the undertaker, a call to 911 was not required.
I was lucky to have him live with me the last 10 years of his life. He had been blind the last 12 years. Loved to listen to the Atl. Braves.
I can tell you that I don't think I could have keep him at home without Home Hospice. I also here good things from friend who have had to put their loved ones in a Hospice facility.

Good luck

[GP6971]

20. Hospice Questions

My wife was in Hospice at home. If he's able physically and medically, ask your father what he would prefer. And I agree with all the comments here. Ask Hospice whatever comes to mind....can they supply a hospital bed if needed, a bedside commode, how do you obtain the required meds etc. Ask any and all questions. It will give you peice of mind knowing that you asked every question you could possibly think of which equates to making your father as comfortable as possible during the last stage of his life. Keep in mind that depending on $$ limitations (insurance, paying out of pocket, etc) you'll need to identify just what services they provide and how often. Some have bath aides two or three times a week, a every other day visit by the nurse, a once a week visit by the chaplan, etc. So find out that information up front. Another service many hospices offer is "sitting service"....someone comes over so as to let the caregiver get out and run necessary chores etc.

One of the hardest things for me was accepting Hospice's other goal......that being the well being of the surviving family members. Before my wife went into Hospice, the Onolpgist insisted that I take a few hours a day and do something totally unrelated to the care giving and the overall situation. And Hospice just reinforced it and kept asking what I was doing to take care of myself. Whatever I needed, within reason they tried to accommodate it within the confines of their budgetary limitations. I hated doing it, but in the long run (now 5 years) it proved indispensible in helping me move on.

[Bandit]

22. Hospice is an absolute Godsend.

Sorry for your pain.

[AnotherDreamWeaver]

23. My dad passed at home a couple of years back, Fathers Day Eve.

Hospice brought us a hospital bed that could be raised, oxygen generator and oxygen tanks in case power went out. My sister or I would stay up nights so someone was always near. He had a cancer too. Toward the end, when he couldn't swallow, having a bowl of water and a wet wash cloth to let him wet his mouth so it wasn't dry was helpful.

I wish you and your dad the best these things can be.
ADW

[quiller4]

25. Most Hospice organizations have a medical social worker on staff.

That is the person you need to talk to about these issues.

You may not be ready for this but one thing that needs to happen is a frank conversation with your father. Does he want to be at home? If so, then explore how to do home hospice. He may prefer to go to a specialized hospice center.

Two years ago my brother-in-law died of bladder cancer. He chose to go to a hospice center rather than have home hospice because he was concerned that home hospice would be too physically taxing for my sister. (At the time he was 87 and she 82) His room at the hospice center had more in common with a hotel suite than a hospital room. This was a good decision for them but it isn't for everyone.

A friend of mine is a medical social worker with Franciscan Hospice in Tacoma. Part of her job is to meet with the family, listen to all their concerns, frankly answer their questions and help them decide whether home hospice or hospice center is the best option for them. Caring for a dying patient is a home is possible but it does make demands on family members and can be difficult in the best of circumstances. Can family members work as a team when it becomes stressful? Are some family members in denial that the time has come to switch from aggressive treatment to palliative care? Will an aging and possible fragile spouse be harmed by a home arrangement? All these things need to be considered.

Medical social workers are well trained to help you ask and answer these questions and not infrequently set up a family meeting with the primary physician to bring everything to the table and help with decision making.

My heart and prayers go out to you and your father.