When do you know to call in Hospice?

"As tired as I am now but when it 's all over with......I can truly truly say , I've done my part, without a doubt I've done my part."

Please....never forget that. You deserve the credit.

OOPS ! I meant to say she lost a lot of weight, and eats at the table with US !

I see changes in my mom, she's slumping over, lose a lot of weight, tries to feed herself but now I help her more with feeding, she can eat finger food without being too messy, she drools but still able to walk some with help with a rolling walker. She eats at the table with her, I don't isolate her, she's in a room with family at all times, what hurts is that she doesn't call me by name now but she still recognizes me. I just can't see her not eating or walking, I know I am a little pushy but that's what kept her going. We like to have lost her in 2005 but I didn't give up, she had to start all over with eating, walking (oh my God !),bed mobility, the whole works. Oh by the way she has Parkinson too. Thank God she is still hear but I tell you I get soooo tired sometimes until I don't think I can may it. God gives me the strength and I look back and say , I made it through this day. I can't just let her stay stay still, she would deteriorate sho nuff. I 'm not having it ! As tired as I am now but when it 's all over with......I can truly truly say , I've done my part, without a doubt I've done my part.

Giving injections is not comfort care. There is Morphine is given by drawing up the dose in a dropper and slowing put a little on both sides of
Inside there mouth and under their tongue it is absorbed quickly. Ativan come in liquid form too. But, if you have pills. You can put one under there tongue it is tasteless and is absorbed quickly.

You Mother is getting tired and is ready for next world. Religion was always comforted me. My Mother had dementia. She was much younger. But, age doesn't mean anything if there is no quality of life. My Mother had dementia for 12 years. My sister was my Mother's POA. But, I was my Mother's Health Care Proxy. When it comes to siblings. One sibling should not have full control. There are things we can disagree on but, it is protective for a parent. I worked in a Long term facility for 32 years on the units. I saw many people like your Mother. The last 17 years I spent working in Geriatric Research. My major was Pallative Care. But, getting back to my Mother. I moved in with my Mother the last 8 years. I was working. My husband worked nights and always slept with one eye opened. My Mother adored my husband. My Mother was a Sundowner come 5 pm. I had to be home at 5p. I did have an hour to my self to exercise. Then I would pick my daughter from aftercare. I got up at 4:30a to have quiet time for myself. In 2008 I had a serious work related accident. I tried to work for 2 years. But, on June 30, 2010. I walked out and never looked back. I am on Social Security. But, I believe everything happens for a reason. The following Fall, I saw my mother getting weaker and weaker. But, she was stubborn and knew how to push herself. In January 2011. My Mother was walking upstairs and feel and cracked her head open and was admitted to the trauma unit. After two days, I decided it was time to call Hospice. This Hospice was the first in the country and they where excellent. From the fall my Mother became bed bound. Which was quite difficult for her. Money wise if you can have no more than $2000.00 in a bank account in her name. You are also allowed money for burial. Call a nursing homecare agency. They will help you fill out a Medicaid form. This is not Nusing Home Medicaid and is not attached to property in her name. Because my mother was bed bound. I had a aide for 40 hours a week. I lucked out. She was the best. You have 16 hrs of Hospice care. I used them to cover my regular aide days off. I knew they could keep her safe. I had time to care for my daughter and to shop etc. I aso had respite time. My 3 siblings never helped. Hospice will give you a smal box and tell you how to use it. Hospice are on call 24/7. My mother asked to have all four of her children visit together. We did and all stood around her bed. The last two weeks she started to let go. The Thursday before she died. This is very common. My old Mother was there no dementia for a few minutes. She said to me "Mary I've had enough let me go" which was like taking a big weight off my shoulders. My Mother was in control of her on density. Friday, my Mother developed rapid pulse and a temp. The hospice nurse told me. If this continues your Mother won't make it through the weekend. Saturday she had some discomfort. I gave her Morphine as needed. You can never give to much morphine in moderation and calling the nurse to agree with dose. By Saturday night all four of her children where with her. I got into bed with my mother and held her hand. My sister and I gave Morphine every hour and had to go up in doses of Morphine for comfort. Comfort measures are Morphine, Ativan every 4 hours and oxygen. It was Sunday, my Mother was on 18 mg of Morphine every hour. I have seen others suffer and Morphine didn't help. Then you start with suppositories and a pump of pain meds. My Mother was comfortable on the dose that was given. 2p I gave my mother her last dose of Morphine. I could quickly see her failing I told my family it won't be long now. My Mother passed at 2:20p very quietly, peacefully. It was July 17, 2011. She was 79. My Mother died with dignity in her own home. I never regretted what I did for my mother. When people stop eating walking and sleeping a lot. They are giving up. The term is called Failure to Thrive. The worst thing you can do is put in a feeding tube. It just prolongs death. This is the first time I told my story. I hopes it helps. Hospice can come if they don't feel a patient is going to die before 6 months. It is always nice to meet the family and see the patient before they need Hospice. Your Mother at 90 has probably had a good life. Now it is time to let her die with dignity. There are Hospice facilities that are quite nice. They cost the same a month as a Nursing Home. It is cover totally by Medicare. If you are in a facility it is part Medicare and Medicaid. My Mother was totally Comfort Care. From the time of her diagnosis. I wish you the best of luck. Do what is best for your Mother.

Aprons - as others have said, you will need for your mom's MD to write the orders for an evaluation for hospice to happen. Now as far as which hospice, you should call around to see what is available. Hospice is a Medicare paid benefit, and as such it is "self-directed" so your mom (or you) can select the provider. Also since it is self-directed Medicare benefit, you can fire or change hospice group. I did this for my mom and it was done within the first 90 day hospice period. Took 3 days for the change over as I had already spoken to the replacement hospice which did their interview with her and let I the NH know in writing of the change. BTW Medicare pays hospice about $ 4,500 a mo. My mom is now totally bedfast and or her hospice is RN once a week, an hospice aide 3X a week with 2 of those visits involving bathing, social worker twice a month and on-site MD evaluation every 60 days. They also got mom a geri bath chair, a geri sitting chair, a "breathing" mattress with specialized bed plus all her diapers, specialized drink (TWOCAL HN with FOS) - all cover by Medicare. Now all the equipment was there within a day too. Some smaller hospice may not have the cash flow to do all this right now, so ask about what the delivery schedule is for any equipment that your mom may need. You don't want to have to wait for a geri bathing chair if you can help it.

Some hospice - like VITAS & Compassus - are larger national networks and then some are just a single location with super small staff. I have dealt with Vitas & Compassus and both were just fine with great staff. Both were very short time hospice placement. One thing about the bigger groups is that if your family member needs pretty serious med's - like Class 3 or 4 pain meds - they have it; most smaller hospice just do not have staff that carries this on them. They have to request that another person come to give the shot as they aren't certified for Class 4 drugs or have the insurance needed to travel with Class 4 in their car. Also the bigger hospice often have a free-standing in patient unit for the very "end" end of life. In my mom's city, VITAS has this @ an old women's & children's hospital. My aunt went to it as she was in immense pain which was well managed as she was in-patient. Now my mom - on hospice since June - will stay in her NH and never go to in-patient hospice as she likely will just pass away @ her NH. Both in-patient units I've been at seem to have a younger patient group end of life from major cancers or major trauma rather than the elderly dementia patient.

Not all hospice are the same, it;s like finding a NH that is the right "fit" you have to call about, ask ? and make a well-informed decision. And you can change to another facility or another hospice provider if it just doesn't work out.Good Luck.

Kathleen225 - about your sentence "This is not Nursing Home Medicaid. But, a Medicaid for low income people. My mother owned her own home and this Medicaid does not attach to the home." this may not be correct. Medicaid's MERP (Medicaid Estate Recovery Program) is not limited to just $ paid by Medicaid to a NH for a Medicaid recipient. In many states, any mental health care programs, home health care programs or other long-term Medicaid paid for program for those over 65 can be within MERP's review. You should Google your states Medicaid to see what programs are within MERP review for repayment. In my mom's state (TX) both mental health & community based provided @ home services are subject to MERP. Now whether or not, MERP goes after their claim or lien on the estate really depends on how your state runs it's MERP program and how your state views property rights, death laws and probate. If you inherited your mom's house, you may want to make sure that there is no possible MERP claim or lien that could be an issue later on - you can get a title company to do this for you. It would be awful if years from now you want to sell the house and find there is MERP claim decades old that has to be lifted to sell the property.

Medicaid for any maternal health programs or kids programs - like WIC - is not under MERP. But most states have MERP allowed for any long term provided service for the elderly as MERP is designed to be done via probate.

You can call hospice anytime. They will come out and make an evaluation. If they feel your mother is not a candiate. Then they wont take her on as a patient. But, it is nice for them to know her. Also, as her caregiver how aggresive do you want to be in her treatment. Do you want a full code. Would you want a feeding tube etc. any heroic life saving measures would not make her a candidate. My mother had dementia for 12 years. I was her Health Care Proxy. I wanted my 3 siblings involved in what I and her physcian thought would be the best care. I worked in Geriatrics and I saw the bad decisions family made until they decided to keep their loved one just comfortable. I wanted this done years before so everyone would be on the same page when the time came. I told my family we could do it together or I will do it alone. We all sat down with my mother's Geriatric MD. The first question asked was about CPR. The doctor told my family if my mother where to have CPR. She would not come back as she was. That pretty much put everything into reality. No one gets better from Dementia. They eventually die from it. I made my mother a DNR, DNH Which means no CPR and do not hospitalize. DNH does not include my loved one fell and needs sutures or they broke a bone. But, to continue. My mother was also no feeding tube. Comfort Care only. My mother got weaker and weaker and fell down the stsirs years after my family had the meeting with the doctor. She had spilt her head open and was taken to the hospital and admitted to the trauma unit. The second day I called hospice and i met with them. It was decided my mother would go on hospice. I brought my mother home and went out to buy a bed so I could be right next to her when she needed me. Hospice came and brought all her medication and her Comfort Care box of medication which they explained how to use. I also had my 40 hr girl who came from an agency through Medicaid. The key is for the patient to have less than $2000 in their name. Apply for medicaid for home services. Just call your local aging care home care agency. They will help you with Medicaid. This is not Nursing Home Medicaid. But, a Medicaid for low income people. My mother owned her own home and this Medicaid does not attach to the home. We did this 6 months before she really got sick. We only had a couple days a week. Once they become bed bound they would get 40 hrs of service. I was lucky the first time to have the woman. You may go through a few. Hospice will give you 16 hrs of service per week. You can use them for when your regular person has a day off. My mother was on hospice for 6 months and then she had a peaceful pain free dignified death in her own home. If I had to do it over again. I would do it the same way again. No regrets! My mother had dementia for 12 years. I lived with her the last 8 years

In any case if you are successful in getting hospice for the love of God please PLEASE do not involve Vitas. They are the largest hospice provider in the US & they are horrible. That was the agency I had on mom for 1 week in a week she was in a drug induced coma. They were extremely negligent on care. I have heard horror story after horror story from others that tried Vitas & they had to switch to another agency. A couple of good ones in my local area I have only heard good things about are Hospice Plus & Grace Hospice however they may be local & there may be one by the same name in your area that is not as good. I would suggest doing alot of homework from talking to caregivers locally before choosing which agency. Do not ask alot at the agencies because they are sellers.

even though I do not care for the idea of hospice or pallative I have tried twice to order hospice for my dad when the alternatives were not sounding compassionate & I (as his POA) was not effective in getting a hospice (6 months) order in either case which would have saved him alot of medical hell. Now I am very grateful that I did not get the orders for hospice evaluation that I tried to because he is finally getting back to alertness after months & is having some quality of life. He is eating well. He hoyer lift with 2 aides for a while into chair, then he became one aide transfer for a month or so, now he is almost self-transfer. He had lost 16 pounds in one week while refusing to eat for a month. Now he eats like a horse again & has been receiving PT for 120 days now & is becoming stronger. The MDs knew he was not a lost cause. I simply wanted it because he has alzheimer's & I wanted to skip the med hell he had to go through to get here. As POA, I was not allowed that decision. So it is not a family decision or patient decision because it is not a free service.

Just on the financial-legal end first. I see nothing in your original post that suggests any med pro has suggested hospice. While hospice/pallative is generally viewed as a family decision it isn't only a family decision as Medicare does not just pay for hospice without a tier of med pros ordering it. Those med pros will not order it unless they think the patient has 6 months of less to live. As for the choice for hospice being reversible I think it will depend on the place hospice is being provided in how quick or easy it is to dc hospice. My only experience with hospice is in a NH setting. In that setting there are all kinds of reasons why it might be hard to impossible to quit hospice once on it. The main reason being that the NH at the point you are quitting hospice would not feel equipped to care for the patient w/o the hospice support financially or medically or legally. In other words what if patient quits hospice & dies on their watch? Financially can they meet the patient's needs w/o hospice having been on them since that was what was paying for all her equipment & care. It would be near to impossible to find an accepting NH at that point if she were dumped because of the decision to D/C hospice. I can see other settings where reversing would not be a decision made easy on the patient/family. All patient's rights are not always observed, enforced or possible. As for whether hospice is a good idea I hardly ever lean towards pallative or hospice in regards to my parents. There can be a million reasons I can think of for a patient not to be eating. If not eating is a new problem it would be unwise to rush into hospice w/o ruling out treatable reasons for a lack in appetite. A new med or drop in med would be the first thing looked at by me anyway. A UTI. Any kind of infection like pneumonia, even a cold. Is she refusing fluids or having trouble swallowing or digesting them. If not then it could be due to anything that she isn't eating much.

The only way to start hospice is to get a doctor to write an order for a hospice evaluation. If the hospice agency says yes she is eligible then the patient/family decide on which hospice agency. Then if the family says yes to having hospice then either the original ordering md or the hospice md have to write another order to have medicare pay for the hospice because that order states Med. necessity. Neither order can be written by the doctor unless he thinks she will be dead in 6 months. Even though the agency would love to get to them early it usually won't work that way as most mds won't write the order even for the eval.

Hospice is run differently in various communities. Their requirements, service, timing, structure etc. varies depending on your local factors. So, what you hear about on this website...people's personal experiences with Hospice where they live...may not hold true or accurate for Hospice in your area. For instance, my niece, in a neighboring state, saw hospice reps daily...all day...for weeks for the care of her grandmother and a couple years later, her father-in-law. However, where I live, they could only come to the home 1-hour per week for in-home attention, due to lack of staff/volunteers. My local chapter's main focus is in-patient (hospital) hospice care which is staffed by hospital nurses. A hospice volunteer visited briefly once a day. This care was for my husband, whose doctor even thought our local Hospice could/would provide more extensive care than Hospice told me they actually could provide. So, you need to get info from your local Hospice...the "horse's mouth"...so to speak.

You need to contact your local Hospice chapter to find out how it works there and what they can offer where your mother lives. They will evaluate what your mother needs and what-when-how they can provide any help. Good luck to you.

To be able to be eligible for hospice care, you should meet two conditions; your doctor must indicate that your life expectancy is less than 6 months, and your condition is considered fatal and incurable. Normally, the doctor signs a form indicating the condition of the long term care recipients as explained in infolongtermcare.org

Unless your mom meets these condition, then hospice is not advisable. And as you have stated she is 90 and otherwise healthy, so you might want to think that over because hospice care usually deals with long term care recipients who are terminally ill. But if there is a need for hospice, you should be able to get it sooner before it is too late. I suggest you talk to her doctor.

Wisteria8: God Bless you and your husband. I think you both have done what needs to be done and it is a shame that others are so judgmental. Non care givers are very good at being that way, they are not in the trenches with you. Perhaps you could enlist them to come and help so they can see the care that is being provided and know that you are doing the best that you can for your husband! Well done, thou good and faithful servant!

sorry for my typo now as bad should have been not as bad.

Hospice has a stigma, but now as bad as one thinks. However, depending on how you are using hospice. They can be on hospice for some time. It's not just because death is imminent. Usually they don't medicate as much. Perhaps check into palliative care before hospice. When I wanted hospice they said they would give my mom medication but caregivers do this already. They felt it would be better to call in hospice when the medicine serves no purpose and to make her more comfortable. Weigh both and see which one fits your loved one. Good thing you are "patting" yourself on the back! Only you can seek your own well deserved validation of a job well done and thank you! ;-)

Since you are asking the question of when do you know it's time, it's time. I don't think there is any such thing as calling in hospice too soon, it is usually the other way around. Bless you and your family.

Remember - with Alzheimer's, one does not have to be nearing the end, in other words, six months from death. A person just has to meet certain criteria. My mom was on hospice for over two years!

When I was primary caregiver for my mother-in-law, I belonged to a support group that was run through a local hospice. The women that run the group stressed that hospice loves to be able to help people live their life as fully as possible—that their mission is much greater than providing comfort to people on their deathbed. A hospice group supplied my mother-in-law with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter. In other words, although hospice eases the process of dying, it also facilitates and encourages the process of living. Keep in mind, however, that a terminal diagnosis is a hospice requirement (with a life expectancy of 6-12 months). I have even heard of cases with a diagnosis of "failure to thrive." After my mother-in-law passed away, I wrote a book about caregiving, "What to Do about Mama?" It is a collection of caregiver stories that touches on many of the topics addressed in Aging.Com and other caregiving sites.

I have thought about this for my Dad. For me, I am a strong bodied person, it will be when he can't get up without help, or is bed bound. He is 190 pounds. At that point I will see about renting a hospital bed for the living room (TV and view of Yard) with help for bathing etc. I really hope he just stops living before it gets to this point, he would not like it. He turns 94 April 2. That goal has kept him going recently. I think after that, he will not feel like staying around.

wwe called hospice on my fathers doctor's recommendation. that was almost 3 years ago. he did pass away at 94, and we had about 1 week notice. Refusing food may be a sign that she is nearing the end, but not always. refusing food could just be depression. hospice is good for keeping someone comfortable when they are nearing their end and making the transition peaceful. We seriously considered hospice the week my father passed. he passed before we got in to action. that translates that we didn't really need them. each situation is unique. if your mom has no serious health issues, she is probably not near the end.

This is from the mid 2000's so things may have changed but it is a list of criteria for eligibility for hospice for someone with dementia:
The following are the criteria for determining whether someone with dementia qualifies for hospice care:

a€¢ Unable to ambulate (walk) without assistance
• Unable to dress without assistance
• Unable to bathe properly
• Urinary and fecal incontinence
• Unable to speak or communicate meaningfully
• And suffer from at least one complication
– Aspiration pneumonia, Upper UTI’s, Recurrent fever after antibiotics
– Signs of a recent stroke
– Decubitus ulcers (multiple stages 3-4)
– Difficulty swallowing or refusing food.

Just talked to our geriatric care manager about this yesterday for our 86 year old mom who is barely eating and spitting out meds, lots of weight loss, living in a very nice residential care home but often refusing to cooperate. I was very pleasantly surprised at all the benefits of hospice services, all covered for free by Medicare. They can be started through either a doctor's prescription or "family request for evaluation directly through the hospice provider." My mother has a DNR and wishes for no life-sustaining methods undertaken. They said a team will be assigned to her, including a doctor, up to 3 visits a week for bathing and medication oversight, on top of her regular facility caring for her. It also includes spiritual and family preparation. The best benefit for her was that she most likely will never have to be hospitalized again, her biggest fear. Staff would call her hospice team before calling 911 and they would address the situation. With my husband's mother we found hospital staff were not equipped to handle dementia patients well and care was substandard. All personal doctor visits that she would have to be taken out of the house for would cease and are taken over by the home visiting doctor. Our care manager said it's a wonderful program, she knows the best services to recommend, and as I had heard so often, many families wait way too long to realize the benefit of such services and wish they had called much sooner. They are generally called when a patient is given six months or less to live, yet some go years past that getting recertified every six months for continued hospice care. Most facilities welcome the extra help and care that comes with hospice and work with their team. For our family, it sounds like the right decision. I believe my mother will have much more personal care than her doctor she sees every 3 months for 15 minutes, and I know the hospice team will particularly address any pain, comfort and medication issues she needs. Best wishes for you and don't hesitate to look into this choice. I was so pleasantly surprised at all they had to offer.

I'd made the decision to put my mom in hospice. She passed from frontotemporal dementia last year.

I'd say call hospice when medical interventions will no longer help her. Make sure that the doctors/nurses explain what can be done to assist her, and that you comfortably understand her condition. In my case, I'd really grilled her doctor, and felt comfortable in my decision.

My husband and I have an appointment with Hospice at 2:00 today. I agree with the comment above that many people attach a negative connotation to the word Hospice. And there is a difficult emotional element to this decision. My husband is the patient(stage 1V malignant cancer in his brain and lymph nodes and heart etc) and I am the caretaker. We both want Hospice but his family feels we are givning up by asking for this. Well, they aren't the ones picking him up off of the floor after seizures and they don't seem to have little understanding or compasion for me as a caretaker. I find that soooo disappointing as I thought we all had a good relationship. It would help our healing process so much if they could be compassionate rather than judgemental. We have a home health nurse from the hospital who is coming with the hospice person on our first visit to enable a smooth transfer. My husband has seizures that cannot be treated by home health nurse - i have to take him to ER or dial 911. With hospice they can give meds for seizure and they can come after hours and on weekends. That is what made us sign up - doc did not suggest. We are using an herbal cancer fighting regime (not recommending this - just stating the facts). Anyway I don't understand why his family cannot understand the importance of getting this care. The alternative is that uncontrolled swelling leads to a fall and perhaps new trauma - we don't need any new medical issues. My goal is "to do what I need to do to live this season of life without regrets, but with choices that are fully fulfilling to my husband and I.
For my own self care I am listening to uplifting music in my earbuds, taking bubblebaths, petting my dog, doing iron yoga and planting seeds up in my greenhouse. I send my appreciation and support to all of you out there who have not heard the word 'thank you' or gotten that ever elusive kudo or a hug.

Call your mom's doctor and ask for an evaluation for Hospice. Ask others if they have used hospice services, which hospice group they used. Some are better than others. I just went through this and my mom passed a week ago today. Thinking of you.

Well, the first step is to consult her doctor. You cannot get hospice without a doctor's order.

Hospice is an end of life program run by your Health insurance. Primary being Medicare. I live in Massachusetts. They are strictly no heroic measures. True if you want a doctor to do a heroic measure Hospice will back out. But, when an elder family gets to point that they are not going to get better. There are times families have to see their family member get better 2 or 3 times and then go back to their original status. This is prolonging death. I have seen it in NH for 32 years. Everyone has there own impression of comfort care and it may not be a belief of their belief. But, it can cause suffering. Hospice can always evaluation the situation. Hospice also has facilities that are very nice. They are the same cost of a nursing home per month. But, house will never turn anyone down due to lack of money. People make many donations. There is extra help by nursing asst too.

I worked in Geriatric Research and the conclusion is many seniors do not get hospice when they need it. There are many doctors that won't tell you when it is time for hospice. You mother is not wanting to eat. There are many doctors that will tell you to put a G tube in via there belly button into their stomach. Their are many of Geriatricians who feel this is in humane. I feel when a person stops eating they are beginning to slowly let go. My mother died in 2011 and she was strict comfort care. No feeding tube. Etc. But, it is never to soon. Your mother probably will live beyond 6 month. But, Hospice always likes to meet them when they are well. If they feel they have longer than 6 months to live. Then they will periodically checkin with you and you can always call them. I see their are NH that don't practice good palliative care. If your love one is home or in a NH. I would call Hospice. My mother had hospice at home. It was a very nice and Hospice left me with a good experience.

First, I'm not able to read you whole statement. It ends with "She is 90 and otherwise very healthy...". Understand what hospice is. This is a big decision. You may want to consider Palliative care. Hospice has many rules which may include no feeding tube or intravenous fluids (water), as well as limited medicine. Caring for Dementia people is extremely difficult. It is a burden. Palliative care is the step before hospice. Really, it's an ethical question. I have reservations on the way hospice deals with end of life. I looked to religion for an answer. I followed the concept of "no extraordinary means" to keep someone alive. This is a pretty subjective statement which can be interpreted differently. A doctor suggested hospice for my 87 year old father after his second stroke. He would have passed away in 4 weeks if he would have entered into the program, because he would have been denied medical treatment. He recovered from the stroke and lived lived another 10 months on palliative care. We enjoyed each others company those last few months. It was difficult to care for him. A doctor is just another person. They may not have the same moral ethical ideals as you do. Or, maybe they do. Just be sure you know what hospice is. I think palliative care is the proper route until the last few days. I like to guide the welfare based on the patients beliefs as opposed to the government run hospice organizations. Again, research what hospice is.