Hospice care, trying to understand how it all works. Any advice?

My Mom was diagnosed with Stage IV gallbladder cancer that has metastasized to her liver, esophagus, stomach, and lymph nodes. We were told it was very aggressive and she probably had 2 months left. She also has dementia. The gastro and onocologist recommended Hospice and they have been wonderful. They supplied a hospital bed, bedside commode, oxygen, wipes, creams, pads, adult protective pants, everything that I have needed to keep Mom comfortable. The intake nurse was here shortly after we got home with Mom and the social worker was here later that afternoon. They explained everything in detail and gave me a binder with information and the number to call. I have had a nurse here 3 times a week and a CNA twice a week. She would have come more often if I wanted her to. Mom has deteriorated to the point that she was placed on this Hospice protocol list yesterday. The CNA told me today that she would be here everyday and so will the nurse. The social worker came by and said she would be here once a week unless I needed her more often. Tonight Mom is in the final stages and the night nurse called and told me to call if I needed anything at any time. They entire staff has been very responsive to all my questions and Mom's needs. We found out that she can't take Atavan or Haldol, they have an opposite effect on her and they had no problem with me not using them. I can truly say that this particular Hospice has made this a lot easier for me to keep Mom at home where she wants to be. I wish that everyone had a Hospice as caring as the one I have.

Oh,yes, just a diuretic pill - they probably needed to give potassium with it! You have to eat a fair amount of bananas for that, which is fine if you really love them. And magnesium. I guess they thought extra fluid would make him uncomfortable or something. You'd think they could have explained better and done those simple mineral supplements. (You'd think there is some kind of rule about using common sense, but then you'd be wrong..)

I don't remember the name of the medication but it was either a blood thinner or water pill (been too long ago now). It was causing his muscles to cramp. I didn't understand why it was so important they give it to him the amount they were giving him if it made him hurt. On top of that, the only solution from the doctor was to eat more bananas! I was not happy about that one and I did ask that they lower the dose. So he had a little more fluid then they wanted - he was in hospice!!

Meatjeanne, check again on the Medicaid thing - if he qualifies for Medicaid, they are supposed to leave enough resources for the "community spouse" (you) to live on as well as the house and the car. You fill out papers or online forms with your assets, income, and expenses of the house you are living in. I did that for my mom when she could not navigate the second time she needed to for my Dad. Veterans typically have enhanced coverage options as well. Absolutely at least check with an eldercare attorney who knows Medicaid or at least your Area Agency on Aging and/or estate planner about all that. Hospice probalby does not even need to be in the picture.

Bella, yes - they do stop meds that they do not think are needed for comfort or quality of life. I had to go over it with them and let my mom continue to get her Sinemet so she could feed herself, but they did stop her antiplatelet that probably was not working anyways adn still wonder if that was right or not. I think we even had to pay for one or two meds that we wanted to keep. And I also got treated a bit like an intruder for not just going with the flow and letting them just do it all their way with out my input. But, that was nothing personal that they had to go through everything and approve him despite the other doc making the referral. They should have made allowances for your hurting heart though and not held it against if that you sounded critical and defensive though. It is not the least bit uncommon to feel more guilt and turmoil about a relationship that was less than it could have been than if it had always been good. I experienced that in spades with my mom versus my dad. No guilt, you have done what you can and then some!!

Diane - what on earth - what medication was causing pain and why would they not stop if you asked? You can request they call the doctor or call yourself, and even refuse the med if the actual reason they are giving it makes no sense, or if its side effects outweigh any benefits.

I'm sorry for the loss of your dad. They probably kept giving him medicine, partly because they can bill Medicare or you. It's all about the money.

Do not fret about your decision Diane You did the best you knew how and that is always the right decision. The help you could to manage without was made available to you. Your Dad unfortunately began to decline at the same time. This frequently happens and the hospice nurses see this and often this is the reason a patient is accepted for hospice care.
Yes your Dad understood the reason for hospice and it is often distressing when they are called in but that is not a reason to delay because they can bring great comfort and a sense of security. medicaid does usually discontinue certain services when the patient no longer makes progress or refuses to follow instructions. They also have very strict guidelines about approving services in the first place. For example I was told that only about 25% of requests are approved for tube feeding. Oxygen saturation has to be 88% or below before home oxygen is approved. The guidelines are pretty strict.

I have mixed feelings about Hospice. At the time I signed my father up I thought it was the best thing since sliced bread. What I didn't consider was whether the additional help was a Godsend or a hindrance. My father was a little over 2 years out from a catastrophic stroke. He really wasn't improving much but he wasn't digressing either. I battled Medicare for 2 years to make sure he received physical, occupational and emotional support but there was a point where Medicare would no longer pay for the therapies - as far as they were concerned he would never get any better. They recommended hospice. I didn't think about how the mission of hospice would affect his mental health. Even though the additional help made it it easier for me, he took it as a sign that he was never going to get better. When all therapies stopped he went downhill. He was lucid enough to know that hospice was end of life care and and he eventually lost his will to fight. I had great help with Hospice - I can't fault them for doing their job with my Dad. I didn't really understand their need to give him medications that made him hurt (I asked why it was necessary if he was dying anyway - the response was that it was Doctors orders. Never understood why you would give medication that hurts and then have to give pain pills but in our pill happy society who knows). Anyway, my Dad reached a point where I could no longer lift him and assist him. We put him in a nursing home and he died the next day. All I can suggest is to think long and hard about the purpose of hospice and how it affect loved one. I have dealt with the guilt of wondering if I had waited to put him on hospice if he would have gone downhill as fast. As with all things when you care for someone else, you go over things you wish you had/hadn't done and wonder. In the mix you just prayed that you made the best decisions you could. Several months later I put my uncle in hospice and had a totally difference experience - if I based hospice on that one situation I would NEVER put anyone on hospice (of course, depending on need).

Bellas all I can say is gather that last little bit of strength and call the other hospice. If your first encounter is similar to your current hospice leave well enough alone.What you have experience is not what hospice is all about. it should be the loving caring experience that Kathleen above described. As a retired hospice RN I can not in any way defend the horror you are experiencing.
You decide when to visit or not at all if you choose. i would however suggest going at least once a week to check that he is properly cared for, ie bathed, shaved clean Depends (or whatever you care to call them) ,no smell of stale urine,clean room etc. if you can look at his skin and take pictures of any bedsores or anything in the environment that disturbs you. You don't need to be an RN to see things that are wrong. Stopping drugs is a common practice and just giving those essential for symptom management so do not worry about that as long as he is calm and comfortable. When this is all over and you are rested I urge you to contact your state health department and share with them the what you have told us about this hospice
.After 40 years of abuse I am sure you feel this man should just rot in his own filth but you are a better person than that and feel the need to remain involved. Do not feel guilty about your feelings no one is responsible for the way they feel, We are only responsible for our actions and you are doing the best you know how for your husband. you will find lots of support her from people who will offer genuine love in the purest sense of the word. Another thread to post on would be :The caregiver and disfunctional famillies. The people there are mostly long term caregivers and do not focus on specific issues but ongoing life experience and provide the kind of support you so desperately need at this time. Blessings. come over and introduce yourself you will find a very warm welcome

I am so glad to see this topic as the ALF where he was, said they had to send him to the hospital because he told them he had had a stroke. Four days later, the neurologist gave him a dz and said there was no treatment but he could order as many tests as I wanted, even a very expensive DNA test. I asked if any of those tests would change his dz and/or the outcome and he said they would not. He recommend palliative care and I agreed, seeing no need to charge Medicare for tests with no solutions. The palliative care person at the hospital called me and said she reviewed the chart and stated he qualified for Hospice and I should go that route. I was clueless that one must be interviewed by another person from the Hospice dept of the hospital. I felt like it was an inquisition by a seriously arrogant person that made me feel like I was trying to do something wrong. I told her it was the doctor and the the palliative care person that got me to this interview…didn't matter, she continued to tell me she would have to share his case with the doctor who is over the Hospice for the hospital and then they would decide if my husband qualified. She must have told me 4-5 times that if he got any better at 90 days they would 'boot him out' (my words) and then they would continue to check his condition every 60-90 days thereafter with the understanding that he had to meet certain criteria to stay in Hospice. I have been at this care taking by myself for 5 years now and my take away is that no one does what they say they will do unless you call and followup with them and document every single phone call. I cannot stand this hospice, the RN that sees my husband is rude and talks down to me (further proving that employees are a reflection of their manager, so I dread meeting the doctor who is over the unit). They were to call me and let me know the status after each RN visit, reassured me they would, met the RN face to face and was assured she would. I have yet to get a call but I now call them. Then…the ALF who have been saints called to tell me that Hospice had taken my husband off all his medications except the ones he has been on for anxiety and the miracle pill that keeps him from acting out (that took me 4 ½ years to get). The pills they took him off are ones that would be needed for quality of life, if he were to live out his remaining 76 years in 'good' health. I was so shocked that they did not tell me they were going to do that that I called them to confirm it and the gave me attitude and threw it all back on me to decide. Gracious, I couldn't decide life/death matters as a lay person but I called the prescribing doctors and they agreed it was ok for him to go off their meds but the process was exhausting emotionally…just another notch in my care giving 'belt' that further sucks the life out of me and my health. My husband has not been a nice man our whole long marriage (40 years), has no friends and his own son wants nothing to do with him. I just have done what needed to be done all these years but now, with his condition growing worse, I am falling apart emotionally with guilt. I always thought, since I have put up with his serious verbal abuse that only has gotten worse since his brain is turning into sludge, that at least, in the end, I would never have any guilt but I do, lots of it. The reason is the only place that would take him is an hour away and I cannot afford to go there on a daily basis but the RN and the SW that I haven't met but has called me twice and some of the ALF staff, all make comments about 'being sure that I must go over every day to be with him'. Not. They know he has no one else but me that will see him and I am just too tired and overwhelmed here at the end of this long journey to give more of myself. Anyway, hospice stinks but I am too tired to go through all the process of firing them and hiring the other one in town. Both sides of my family know he is in hospice and even though they can't stand him, I would think someone would ask how I am doing or even how he is doing but they don't, no one says a word, and they avoid me so they don't feel guilty or don't care about how hard this is on me either I guess.

I worked in geriatric research and one project we worked on was indicator when an older person needs Hospice services. We did this for NIH. As a general rule older people did not have proper end of life care. I was fortunate to know when my mother needed hospice services and I did go through a religious hospice. I believe they where the first hospice in the country. They where wonderful. They brought medication, bed pads. Hospital bed and oxygen. Everything to promote comfort care. When I needed medication it was a phone call away. The nurse came 2-3 time a week and it is true. It takes very special people to work for hospice. CNA came 16 hrs a week. I had also hired a CNA privately. She was wonderful. Little box of medication that had Morphine, Ativan, Haldol which was awful for my mother. Suppositories for nausea and Tylenol and syringe without a needle. You just had to take drops and put it slowly inside there cheeks under their tongue. I never needed Scopolamine Thank God. Being a RN. I didn't agree with the medical director's way of medicating and his nurse didn't either. But, I medicated my mother the way I was taught. The doctor was my only problem. I knew him as a fellow but, never met him through hospice. The hospice nurses knew what I was doing but, never said a word to me. The social worker came once a week and called a couple of times a week. I had hospice for a full 6 months. My mother had a peaceful death. I heard later the doctor was gone and that was a good thing. Even if you are poor and no insurance this hospice is non profit and will take anyone. Many people make donations and my family made big ones. That keeps hospice going and able to take the poor. I have no regrets

I dont like the word diapers either, dipes is just a short word I use. My husbands heart and lungs are in great shape, he could live a long time. He is 76 but... who knows. The Assisted Living Lock down Dementia unit that I might put him in...it will take both our social security money and his navy retirement, which I thought would be 'cheap' compared to nursing home. I will live on savings. I just want him in the best place FOR HIM. Very stressful. As I said, no family nearby. Which might be of some support. Thanks for your comments.

meatjeanne, you are all alone in a very difficult situation so it is very easy to start to panic about how you are going to cope.
As cbhillan said hospices do have to be more stringent in their requirements if they recieve reimbursement from Medicare. however some also have a palliative care program which may be the way your husband could be admitted to start with. This is also covered by medicare and will provide you with all the suport of full hospice.
As you are alone it sounds as though nursing home placement would be a better option but this may take a while unless hubby needs to go to hospital for several days which would qualify him given his condition. many nursing homes have a memory care section. Contact hopice one or more if you have that luxury and they will come out and assess him and if necessary help you get him admitted somewhere. They know all the ins and outs of the Medicare maze. Have you talked to public health, social services and his Dr. Do not worry about loosing your home or small savings Medicare allows you to keep your home, car, personal effects and a sum of money. You will loose hubby's SS check so plan to manage without that. Do not be too proud to apply for food stamps and any other assistance ther is, that is why it is there. keep talking there are usually many ears awake and listening.

to "meatjeanne" - I do know that hospice programs are becoming more stringent in terms of whom they will accept but my suggestion would be to contact a hospice program and schedule an interview. Remember - not all hospice programs are created equal so you might want to get some recommendations. And just a quick comment - I think that babies wear diapers. I prefer the term protective underwear for older adults. Just sayin'. . .

to cbhillman....my husband wears dipes, doing 1 and 2 in them. He doesn't wear clothes. I do everything. He eats with fingers. He gets up and walks, sometimes, some days. Very unsteady, if I hear him, I am with him. I struggle to get him in the shower, legs are shaky. I must bathe him. He spends most of the hours in bed, 'watching' tv or eating or drinking whatever I give him. Trying to get him in an assited living lock down dementia unit. So afraid he won't qualify. If not, maybe I could get help from hospice? Or does death have to be, well, sort of close? Home health is not what I expected, but not really sure what I was hoping for. He has been dependant, at first for small things now all things, for over 5 years now. I am 65, started getting headaches every morning when I wake. Small savings will gone before I know it, especially if I put him in nursing home. Not sure if thinking about myself is right, proper. Doing all I can before I lose my sanity. No children, no relatives in the state. Second marriage for both.
Sorry I am rambling. This is 'someone to talk to' for me!!!!!

Just a quick note - not directly related to the question but mentioned in one of the answers. In regard to a person having to be six months away from death: please note that this is most definitely NOT the case for a person with dementia. The person must meet some specific criteria such as the inability to ambulate without assistance, the inability to get dressed without assistance and incontinence, to name three. My mom was in a hospice program for about two years.

Thank you for sharing the wonderful experience your family had during your Moms last days. It is such fantasict news to hear of a family thay pulled together to help Mom and each other. I wish that could be a lesson for all the families on this site who avoid their dying relative and hurl critisism at the one person who cares enough to do the caregiving. Bless you all.

My mother also quit eating and started sleeping a lot, so we called hospice for assistance. The nurse came twice a week, an aide came twice a week to bathe her, the social worker came twice and they provided respite care. They also left a lot of reading material that was helpful, depends/diapers, these sponges for wetting/wiping her mouth, and they called in a hospital bed when mom became to weak to walk. They also would come over when we called for help. My mother was on hospice for three weeks before she passed away. I have a large family so we tried to have two of us with her especially the last week or so, mainly so no one would have to be alone when mom passed. My two sisters were there and called hospice, who came over, helped clean mom up and then called the mortuary (which we had decided on a few weeks before). A service came later and picked up the bed.

Please call their number and ask for someone who can answer your questions instead of waiting for someone to come over who may not know the answer. If you are not comfortable with this hospice, ask your doctor, priest... for a recommendation or call around and ask questions. If you haven't already decided on a mortuary now is the time, also have her final clothes picked out (pressed) along with under garments (I bought new as she had lost so much weight). Since mom slept so much, it was a good time to do some preplanning.

Also during Mom's last week, she had some very lucid moments, she'd ask for people by name (which she hadn't done for a couple years) and she seemed more at peace. We had called her priest to administer last rights and contacted extended family and old friends some whom came over to see her. I wish you the best during this difficult time and hope you get the support you need.

Dstclaire - as you can see by the really good answers..there is no one single way to approach this. But I do think you need a new hospice group.

My mom is on hospice and it will be 1 year next month. She is in a NH (on Medicaid) and was in NH for a couple of year before her fall which led to her being bedfast and therefore qualifying for hospice. Hospice as a MediCARE benefit is self-directed which means you as mom's MPOA or DPOA can select (and fire) the hospice group. I did that for my mom about 8 weeks into the first hospice group as they just flat were not communicating with me. So you can do this and I would look into doing it starting this week. For us it was a 2 day switch over due to equipment pick-up. If you do not have any bed or other equipment from hospice #1, it could be done in a day I would think.

Now how to find a better hospice is the issue. For us, I spoke with some of the staff @ the NH regarding my concerns and they gave me the names of 2 other groups that worked at mom's NH & I called and basically interviewed them over the phone stressing what I expected of them in communication. Both of them did a quick "drive-by" to mom's bedside too. Realize that Medicare is paying them on the average $ 4,600 a mo plus equipment & expenses, so they are making money on all this and should be responsive to you & your concerns. If you belong to a church or community organizations, ask others if they have have had hospice for a family member. Your Agency on Aging which will be a part of your Council of Government will also have names of hospice in your area (the COG are regional planning bodies and your tax $ so use them) & they (the one in my mom's area keep a list of those with a BBB type of listing) can be a great resource too. I have had experience with SouthernCare, VITAS & Compassus and found all to be really good to work with…VITAS is nationwide and because they are big can get whatever equipment is needed asap which is sometimes an issue with a smaller hospice group and also they have lots of staffers so if mom requires a class (or schedule) 1 or 2 drugs they have someone who carries & can administer them. For those getting hospice in a home setting, this can make a big difference…you don't want the situation where mom has to wait to get a morphine shot because the CNA or aide can't carry them and you have to wait for the one & only RN with the hospice to get to your house and mom's bedside. In larger cities, VITAS often has a freestanding in-unit. In my mom's city, it is an old women's & children's hospital that is now VITAS hospice - my aunt went to it after a massive stroke when she was in IL - I will say the majority of the patients are younger and seem to be cancer patients and in need of schedule 1 & 2 drugs so it is ideal hospice for them.VITAS also has an adjacent to a NH in-unit facility too in my mom's city. Compassus was really good to deal with too and they seem to have in-unit beds at hospitals again for those that towards the end need more significant pain meds. Southern has been really good too. Personally I would go with a bigger group as they will have the staff and access to equipment & understanding of how to maximize the hospice benefit for family (& therefore for the hospice).

My mom's hospice schedule is: RN visit once a week; aides X 4 (& 2 of those they do bathing with mom in a Geri-Shower chair); social worker & chaplain once a month. For Equipment, hospice has provided a moving air mattress - the kind that ebbs & flows so that they don't get bedsores quite so much; a Geri-chair so that she can be placed in an taken for a stroll; the Geri-Shower chair; all her adult diapers, these big sq disposable bed liners that go under her bum; gloves, wipes; and caselots of nutrition supplement - TWOCAL HN with FOS 8 oz (Abbot Labs). All billed to Medicare. My mom will stay in the NH to the end and not transfer to a free-standing EOL hospice unit. I get weekly emails from them too. Mom did have a portable O2 unit for the first few months, but that has been 86'd, so hospice needs can change over time.

Good luck in your quest.

Having worked as a Hospice R.N. for some time, I have found that it takes special people , very compassionate, to work in Hospice care. My work has showed me that any form of Hospice connected with ANY KIND of religion, is top notch & I am not a religious person. I cling to my spirituality, the intuitive way I have learned to be all of my life.
Stay on this site. There is a lot of good advice here.
Blessing are YOU to your mom, as she is a gift to you.

You definetly need a new hospice group, Social worker should be contacting you and answering all your questions and be more pro-active. My mom was on hospice care for a couple of months, they encouraged a nursing home as it was getting difficult to care for her since she became bed ridden and now she is doing better and was taken off hospice care. When she was home they called weekly, Pastor came over weekly and they were such a source of information. The nurses ordered all the supplies I needed and were such a help. See if you have a local Visiting Nursing Center in your area..or have the doctor recommend a new hospice group, as my family kept telling me, they really are there for you, more than your loved one.

Medicare covered it but I did not think it was needed. I was right she has been just fine since.

Mildred hospice is usually covered by Medicare or private insurance so $4000 a month was rip off territory. You were clearly dealing with a for profit organization. if you are younger and have no insurance there is an income related fee. My experience is that the SW visits about every two weeks or more frequently if needed. There should always be a RN available 24/7 to answer questions or visit if necessary. Durable equipment is provided such as bed, ogygen concentator and so on. The equipment company should set up the equipment and show the caregiver how to use it. A nurse will usually visit if there is expected to be difficulty transfer the patient to the new bed. Other things like diapers may or may not be provided in sufficient amount depending on the financial state of the individual hospice. Medicare if available will continue with supplies. Hospice will monitor all medications and pay for those directly related to the admitting diagnosis/ For example if patient had cancer and diabetes, they will only pay for cancer supplies such as pain meds and whatever is needed to relieve other synptoms such as nausia. they will monitor the diabetes but not pay for medications for that. A CNA is usually provided 2-5 days a week but sometimes 7 days depending on the circumstances. Services provided will vary greatly from hospice to hospice and the size of the organization. Nurses and SW are required to enter details of their visit on the computer and with a heavy patient load they can be more acurate do this during the visit. Personaly I found it intrusive and took paper notes. having a ten patient load is very different from having to visit five a day over a large area can be demanding. In a big city where patients may be clustered over a few streets it is easier. In the end it can be necessary to visit once or more daily which is very demanding. The key for best service is to anticipate needs well ahead and don't wait till 1/2 hour before the pharmacy closes and call demanding medications. As the saying goes "it takes two to tango"

My mom was initially turned down for hospice care at home because she wasn't in the six month period prior to passing, based on the assessment. Shortly after, she developed pneumonia and Congestive Heart Failure (CHF). After a month of caring for her day and night, she recovered well enough to have good visits from other family members. Shortly (one week or so) after, she suffered a stroke & hospice was started. One week late she passed.

It can be hard to assess whether to even start hospice. I'm sorry you're feeling challenged to know what to anticipate and when.

Hospice for my mother was helpful and timely, but not here constantly. I had what we needed for that special time.

I had my mom in hospice for about six months . They had told us she was dying. I finally had enough. I got rid of them. My mom is still alive. But her time in hospice was a crazy time. They came to see her ,sit in her room , and work on their computers . The social worker was so loud my mom had to ask her to lower her voice. When I told them I wanted my mom off of hospice the SS worker tried to tell me how much they were helping my mom. NOT.it was costing at least 4000.00per month for nothing. She is in long term care now and is fine ,

Agree with Karen. They should be right in there helping you through the process. No, they aren't there all the time, but enough so that you know what's going on, what you need to do, and they should be on top of the meds. Check around for another Hospice service... they are not all created equal ; )

I think you need a new hospice company. Ours is very proactive and always anticipates her needs before I have to ask.

Once the bed is in, then they can show you how it works. You will be getting aides more often. Hospice does not call you, they send the nurse/CNA who reports back to the supervisors. You can always call them if you have a question or need help. You are going to need a friend or relative to talk to, try to find someone who has been through this before, it can be a rocky road and you'll need a steady hand at your side.

I don't know if you're being needy or not but hospice should be the ones being proactive in getting you what you need from CNA's to hospital beds to wipes and diapers or catheters. They should be asking you often what else you need and then getting it for you.

When we hired hospice for my dad the only time I saw the social worker was when we signed the papers. I don't remember seeing her after that so I don't know what the norm is for that. I'm a nurse and when I work hospice I rarely see the social workers.

Having both professional and personal experience with hospice I know that you should feel comfortable calling them anytime with any questions you may have. They should encourage you to do so. With my dad, he went downhill so quickly that I couldn't keep up with all the people from hospice contacting me, wanting to know if I need this or needed that.

Hospice should cater to you. They should be a comfort to you. They should give you strength. If they're not doing these things I would suggest you find another company but if your mom is declining rapidly you may not have time.

I'm sorry that you're not having the wonderful experience hospice usually provides. However, keep asking them for what you need. I don't think the problem is you, I think it might be them.