What questions do I ask Hospice?

Many people feel as you do. They don't want to take that step and call hospice because it's, well, hospice. And we all know what that means. It's a difficult step to take but I've never heard of anyone ever regretting it. It's a wonderful service.

Hospice will set your mom up with oxygen. For free. She will get your mom a hospital bed which will make caring for her easier. And that's free. They will come and out and assess what your needs are, what your mom's needs are, and put a care plan in place based on these needs. Would a bedside commode help? Do you need a bedpan? Do you need more wipes? What other devices and/or aids do you not have? Hospice will get them for you. They offer spiritual support if that is something your mom would be interested in. It's not over the top. A chaplain or minister comes out and just visits with your mom. Hospice also offers bath aides and they will come out a few times a week. For free. Hospice will also take over the medication and make sure you have everything you need.

In general, hospice will make you and your mom as comfortable as is humanly possible and give you the emotional support we don't always receive as caregivers. Some people feel that when they call hospice it's like pulling a trigger and that your mom will actually begin dying. That's not the case. Yes, hospice steps in at the end of life but their service can continue for months and months if necessary. Hospice just makes everything easier.

Once hospice enters the picture there are no more Dr. appointments. No more procedures. If your mom becomes very ill you call hospice first, not 911. Hospice ensures that dignity is maintained for the person. They're more than just an extra set of hands, it's an emotional support system and you can pick and choose what you want/need. They're used to people calling and not knowing what to ask and not understanding what the service entails. They are kind and knowledgeable and will walk you through the process. A social worker will come out to your house and talk to you and you'll sign some paperwork and then whatever you need, whatever you discussed, will be put into place immediately.

As a nurse I've worked hospice cases and I really enjoy them because the family is so stressed out that when we come in they can't believe that we do everything that we do and they're so grateful. We treat their loved one like royalty and the family can back off from the caregiving and just enjoy their loved one without the stress of being the 24/7 caregiver. I also had hospice for my dad and they were wonderful.

Your mom may be afraid of the word "hospice". This is very normal. It can also be called "palliative care" but if your mom is still on the ball she probably won't fall for that. Hospice means that your mom won't be receiving anymore aggressive treatment (you can put it like that to her) and they'll be coming over on a regular basis to make sure your mom is ok and feeling well. Believe me, when your mom becomes the center of so much individual attention she'll enjoy it. That's usually what happens. My dad loved the attention.

My advice is to call hospice. You won't regret it. And call early enough so that you and your mom can really benefit from it.

I fully agree with comments. For carers of loved ones facing this situation we must remember that whilst this is a sad new experience for us. For the professional staff at a hospice they are expert in dealing with all the questions that you may have. My personal experience was also that they cared for the entire family and made my beloved dad's last few weeks at home with his family as calm as possible. I would also comment that we were never left feeling as if we hand handed over our responsibility to them and were as much as part of the care as we wanted to be.

I never thought we would have the strength to deal with this situation and a large part of us being able to do so was to these people

Whatever happens going forward I wish you light love and peace

Exhaustedmomma, I agree with Eyerishlass, hospice will help you as much as your mom. Think about what help you want/need and talk to a few of the people who will be visiting your mom. That may help you get a feel for the service and the personalities that best fit your situation. How you describe your mom makes me wonder whether your mom has kind of given up already or a little depressed by the news and can't find any motivation. Have her friends, other family members, neighbors, etc. help her find moments to make the most of her final days. Funny movies, occasional outings to favorite places, talking about the best times, and such. Encourage her without cajoling. Are there grandkids? My dad's great grandson always brought a smile to his face so I tried to get them together when possible.

Best to you and your mom.

CALL HOSPICE! They were invaluable in helping my family deal with my dad's terminal illness because they answered all of our questions. You see it is not only the patient that needs help, but YOU the care giver do as well because this journey is life changing. Hospice has resources that we do not know until they assess each of our individual situations. Call them, let them assess your personal situation, let them listen and guide and support you and your mom. We all deal in different ways and they sure helped my family where each of us was, my mom, my sisters and I, and that was a help to all of our extended family too. Emotions run high and they bring a sense of calm that is amazing. Blessings to you and your mom too.

Wow! I had no idea that hospice provided all of this. Thanks for the information. Since you have had a lot of experience, Everishlass, tell me: Does a physician need to declare the patient ready for hospice care? My husband can barely walk, often too late to the bathroom, has dementia only wants to die. He has already been taken off most of his meds for CHF due to adverse side effects and most of his BP readings are normal. He no longer believes that I am his wife of 70 years and declares that he is losing his mind and feels totally lost most of the time. Does hospice mean that all hope of recovery is gone? He would not last in a NH very long since he needs the personal contact of an individual constantly. He will not watch TV; the radio sets him off; he has no interest in anything other than his BP and mealtime. He has taken to getting up after a couple of hours in bed and going into the living room to sleep the rest of the night in his LaZy Boy rocker, but will not raise his footstool as Dr. wishes for swelling and coldness of ankles and feet..

I care for him solely plus a large piece of property. I still drive, but have to take him along or get a sitter who is usually our retired son who has a life of his own and I do not like to call on him very often. My greatest fear is that I will become disabled and he will lose my care. It has been over six years of gradually deteriorating ability.

His neuropathist has tried medication which he cannot tolerate and discontinued treatment.

Perhaps this should have been put out as a new question, I'm not sure.. Any help will be greatly appreciated.

Exhaustedmomma - JUST CALL them!!! They will take care of everything! NonnaRena811 is RIGHT!!! Just call & tell them your situation & they will do the rest! I only wish my OWN mom would accept them, but she doesn't want their help. Anyway, just call them - it's THAT easy :)

Amen to everything said above. Hospice is not a death sentence but rather an easing of worries and responsibilities for you and your family. When hospice came in to help with my mother it was truly a blessing. Even though she was several months from going home to her Lord they assessed her and our needs based on more than just her medical situation. We were having severe difficulties with my stepdad that they were aware of and kept her under their care to help protect her from him. They were extremely compassionate in regards to all that was happening to all of us. They sent in physical therapists and people just to visit with her so my sister and I could have a few hours once a week to take care of our own needs. They took over getting all her meds( stepdad had been severely over medicating her and mixed up the pills in different bottles among other things he was doing to hasten her demise...) the hospice doctor took her off all but the truly needed meds and she recovered some mobility and comprehension skills. The hospice staff became like family to us and we were very thankful for all they did. Call them......

You hit it-she has a "terminal illness", so do we all. It is called life.
Death is not good or bad-it is inevitable...
I worked Hospice for a long time, as an R.N.

Moment to moment....It works for me, as an R.N. professionally & as a care giver now.

Ask Hospice ANYTHING you wish to know. No thing is not OK to ask. Ask, ask & ask more.

Different Hospice do have different resources available to them. One of the Hospices in our area has the whole floor of a hospital where patient who can no longer be cared for at home can stay. So if you think it may come to that, look for a hospice that has it's own house/floor etc. Visit the places and see if you are comfortable there. My father died of lung cancer and was able to stay home to the end but someone was with him all the time. I would ask your mother's doctor or nurse who they would recommend, hospice will call the doctor for a referral. Best Wishes.

There are some wonderful tips on here from the community. I'd add that word of mouth and references would help a lot. Many people volunteer to pass on their experience with a particular hospice. I know I would.
Warm wishes,
Carol

Well said on all comments. Yes, just call and get the info. You do not need to make a decision by making a phone call....when it is right, you will know.

If your question is about which hospice organization is best, ask at the doctor's office to narrow down your options. The hospice organization will know not only the answers, they will know the questions too.
Be careful, though, not all hospice organizations are free. I received a bill for almost $3,000 for the eight days my sister was in hospice and this was after her insurance paid.

1) go on the Department of Health Services web site for your county and state and see when Hospices you were given were surveyed and how they compared
2) Make sure the Hospices are Medicare certified (if person is a Medicare beneficiary Medicare will pay for Hospice services)
3) Make sure Hospice has been surveyed by the Department of Health Services within 1-3 years
4) Ask if they are accredited through the Joint Commission http://www.jointcommission.org/ or through CHAP http://www.chapinc.org/ if they are receiving Medicare $ they MUST be accredited by one of these two organizations and the Hospice has to adhere to a set of standards set forth by Medicare through one of these two organizations.

Loiscorrine90, people have been taken off hospice both because they or the family changed thir mind, & because they no longer qualified. The hospice we are using came out & did an evaluation, but Gram's dr. did sign off. I also get 25 hrs a week respite from themas well as a monthly visit from the social worker, weekly visit from the nurse, and weekly visit from the bath aide. The hospice will sit down & help you set up what works best for & your husband. Each hospice is a little different in what they offer ( my cousin doesn't get respite through the one they use for my aunt) so "interview" several. Good luck & take care of yourself!!!

Loiscorrine90, people have been taken off hospice both because they or the family changed thir mind, & because they no longer qualified. The hospice we are using came out & did an evaluation, but Gram's dr. did sign off. I also get 25 hrs a week respite from themas well as a monthly visit from the social worker, weekly visit from the nurse, and weekly visit from the bath aide. The hospice will sit down & help you set up what works best for & your husband. Each hospice is a little different in what they offer ( my cousin doesn't get respite through the one they use for my aunt) so "interview" several. Good luck & take care of yourself!!!

There are many that like to hear the word palliative care rather than hospice. It will be helpful to understand each so be sure to be clarified. Look at each carefully and keep in mind the patient's wishes of respect and dignity while
going through the process. Its hard on everyone to see a declining family member or relative. Amen to all answers.

Great info here. In addition to various hospices offering different services, also realize that the terms palliative care and hospice can mean different things in different states. I learned that palliative care in CO is not what it is in IN. My hospice was willing to have home health aid come in 3x/weekly to help with physical care. I only used 1 or 2/week. Hospice also may have volunteers who can sit/talk/play games with loved one so that she gets attention and you aren't the only face around.

Sometimes we can get a bit overwhelmed with the care and decisions, so take a bit of time to consider what you need and don't be afraid to ask questions. Hospice offered 1 week of respite care for caregiver once a month. I didn't think that was necessary . . . until many friends and relatives practically pushed me out the door. And Dad was great at the facility. I think he thought he was on a sales trip!

Blessings to you!

No need to worry about what questions to ask Hospice; just be honest with the details of your situation, the health issues of your loved one, your family members reactions to the situation, the way relationships are affected and the fears about the care and future of your family. Hospice responds to what they are told and then they ask questions and put it altogether to offer assistance, medical, emotional, spiritual. They a re angels on earth.

First, hospice is not a death sentence. Though the government requires a Dr. to certify a person "has six months or less to live" if the disease runs it's natural course, that doesn't mean that person will die in six months. It is actually better to get hospice in sooner rather than later, to help control pain, and other symptoms. Hospice will care for your mom and you. It is a team approach. Nurses, Social Worker, Spiritual care, home health aides, and volunteers. All are involved in your mom's care and will help you in dealing with the situation. Ask the hospice RN how many times a week he/she will be visiting. The RN should educate you on symptom management, what to expect re: the dying process, etc. Generally, the Social Worker will visit monthly, unless needed more and can help you and your mom cope as well as help you and your mom get what other services you may need, such as through the aging office. I am a hospice Social Worker and would be happy to answer any questions you have. I tell my patients and families to think of us as extra help-we're here as another set of eyes to make sure you have everything you need. Hospice goes wherever the person calls home.

Everybody is correct. CALL!!! The usual criteria to get into Hospice care is a prognosis of 6 months or less. I became a certified volunteer over thirty years ago after almost dying and a 5 week stay. I realized the need for respite care for families. The professional staff was excellent and do get burnout because they take their work so seriously. I have never had the need to compare hospice services but am a ft, live-in cg for my mom with PD and increasing dementia.The hardest is when she says she's not right, she knows it.I can only wish a a good nights sleep with some REM and RIP til the am.
I'm sure you're doing the best you can without much support. Great resource, Alzconn, 800-272-3900. 24/7 hotline and it doesn't matter what the disease is, it's great to have someone in the middle of the night when you're desperate. They have excellent resources all over the country. Recruit them, they will help.
Wishing you peace, Paula

i asked " missy " if she liked to be tied up and tickled with a green pot leaf but no - oo, she has a new fiance . meh, i need to photoshop fiance swingin on a pipe. he he

My heart goes out to you! I recently lost my husband to COPD and lung cancer after a 3 year battle. He underwent nearly 2 years of chemo which just ravaged his body, but he was a true warrior. He was admitted to the hospital on New Year's night with pneumonia and was there for nearly a month. He was then transported to a nursing facility for rehab. Unfortunately his lung function had deteriorated to the point that rehab did not work. I had dealt with hospice in 2000 with my mom, so I already knew what a wonderful, compassionate organization it is. Yes there are several different branches of hospice where I live. I contacted the VITAS branch, and they just stepped in and took a HUGE weight off my shoulders. They assigned a nurse to sit with my husband in 12 hour shifts. The nurse contacted when he took a turn for the worse, and when he transitioned from this life he was not alone. I cannot say enough good things about them. Please do call. A nurse will come to your home to answer any questions you may have and to get your mom enrolled. You won't regret it. Good luck to you and may God be with you.

When you are not sure, you say yes to the Hospice Evaluation. Be honest with them, because they need to know. They may say now is not the time. And bear in mind that some patients "graduate" from hospice when they improve. Just take one step at a time. It's not a one-way door.

Pam, I totally agree. I forgot to mention that my mom was 94 when her doctor recommended hospice care because she did not think mom would last more than six months. Well, after about a year, her condition improved to the point that she no longer needed hospice. She lived another 4 years and passed away of natural causes.