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My dad, 94, in AL with not much other than congestive heart failure being medically wrong with him. He's still in fantastic spirits. He gets around in a wheelchair, mainly because he stopped getting PT (didn't want it anymore, which I get). He refuses to sleep in his bed (I've purchased 4 dif beds, none were to his liking), so he sleeps in his power lift chair. At 94, I figure he gets to do whatever he wants. I was curious about hospice. When I asked the nursing coordinator at his AL place, she said he would be a candidate, and Hospice swooped right in and are taking care of him now. At first, I thought Hospice was for people who were, well, on their death bed with just a few days to go. Has something changed??? Thanks.

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Hospice is for people who MAY have 6 months or less to live. This judgement is made by the doctor. If you are unhappy with it or have questions, speak to the doctor. It is difficult to predict how long a person will live. Some people are put on hospice and then later taken off if their condition improves or doesn't get worse. With hospice, the treatment is designed to improve quality of life rather than try to cure what is wrong with the person. There are many benefits to hospice. Please explore what the program entails. You may find that your dad is better off in hospice than not. If he is more comfortable sleeping in the chair-great. At least you don't have to argue with the staff about that.
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CHF is terminal and for some people very slow walk to the home office. Hospice was probably called in to keep him out of ER for the breathing difficulties he will suffer from the fluid buildup from his heart not working appropriately. With CHF you have to be monitored for fluid buildup quite often, I monitor my aunt daily and give her medications to help her body to get rid of those fluids( which can also back up into her lungs making breathing close to impossible ) as her hearts not doing its job. Also as time goes on the need for oxygen may become a daily issue, hospice provides all of that, assisted-living generally doesn’t do the weight monitoring, the oxygen checks that your weekly nurse will. At 94 with CHF it’s very kind of your doctor to prescribe hospice and gramdfather will be comfortable whether he lives six months or five more years. I’ve had three clients on hospice for over three years and the aunt in my house is currently on hospice with CHF, Parkinson’s and dementia. It is a godsend not to have to worry about going to hospital when she’s uncomfortable.
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Anniepeepie I wonder if the hospice company is a for-profit company? I can’t believe what they did! With my MIL, a nurse came once a week for the first month. Then a health aide came once a week to clean & bathe her and by about 6 weeks, she was coming 3 times a week to clean MIL. The nurse came once a week until the last 2 weeks I think, then she came twice. The experience sounds similar other than the false promises you were given! I think one nurse who was assigned to MIL was leaving for another job so she only came once or twice. Got a new nurse who went on vacation shortly after. Never saw a volunteer but then again, MILs partner was the one in control and he said no to everything! So maybe they asked and he told them not to come. When you are on hospice, you still need a caregiver, hospice doesn’t provide round the clock or daily care. So I am surprised they told you that! Anyway I think you should look into a different hospice provider!
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c47090:

Your dad sleeps in his power lift chair because CHF or congestive heart failure causes a build up of fluid in the lungs and that makes it uncomfortable to sleep while lying down.
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AnniePeople, if you are not happy with your hospice service, you may want to consider changing companies. We have just changed, due to our nurse's change and we definitely see a difference in service. The old company took a month to get a social worker and chaplain to the house. The new company took 2-3 days. Big difference! If you are not getting the services you believe were promised, speak up and ask! We have to remember that they are not mind readers. In my experience, they want to know how to best help you and your family.
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Anyone who "swoops right in" sounds suspect to me.
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Oh, Anniepeepie, I am so sorry to hear that hospice has not been helpful for you! You are the first person I have ever heard talk about hospice for whom it has not been a good experience. :( You need help! Folks, I don't have the experience with hospice that many of you do -- what would you suggest that Anniepeepie do to get more help from hospice?
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I too am curious about the whole Hospice thing. They swooped in on me and told me with much fan fare like car salesmen that I would get so much care that I could once again be a daughter and not an exhausted care giver. Well, I have to say, I dont think two 15 minute visits a week to help me bathe my mother do much good. The nurse that comes once a week is pretty good- but wow., nothing like what they "sold " me. Still wonder where are the massage and therapy visits they promised? and the wonderful support of volunteers? well, 2 months in and haven't got a volunteer yet. Also the social worker/ ? she pops in and asks me what I am doing for myself? Oh, and guess what? She is away for her 2 week vacay and will be coming back to find out the answer to that question. Seriously? I think medicare needs to be paying me for the 13 hour days and the other night hours I am putting in. Hospice so far has been very mediocre - Maybe its for the very end. Right now I am dealing with watching my 84 pound mother get worse by the day and experience dying symptoms and all I can think is where in the hell is anyone?
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In Florida we had an inservice a few months ago about Hospice and the terminal diagnosis / 6 month rule no longer apply.
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My 97 year old mother recently was moved from the AL apartment into Memory Care. She has dementia (not Alzheimer's). Her confusion and anxiety episodes made it very difficult for her to remain in AL... and then there was the one episode of a slow heart rate and she was unresponsive... All the AL can do is call EMS and send a client (not a "patient") to the ER. The ER doctor called us that night and said mom had recovered quickly with just some fluids. It was 3 am on a Sunday... he said she could be returned to the facility... however, I asked if she could stay until morning.. and he understood how facilities like where my mom is at are low on staff and aides on weekends and agreed to keep her... that's when I first heard about Hospice. He highly recommended I meet with Hospice (I knew a great local hospice organization from 10 years ago when I signed my dear old dad up for care). The next day the AL facility director called and said they could NOT continue to care for mom because of this episode, UNLESS I could get her hospice care. BOTTOM LINE: It was the best thing for her and me... and her diagnosis was ONLY DEMENTIA.. I was surprised about that too. The hospice nurse director who first met with me explained that the low-heart rate episode indicated that at mom's age (and she'll be 98 on July 15), the "sinus node" part of the heart commonly declines and it will be likely that she'll pass away because of that - and not dementia... (and she added, to my relief, that an aging sinus node slowly gives out and it's a peaceful death...!) I hope so, because her dementia is mostly short-term memory loss and confusion about where she is, and getting upset about wanting to GO HOME... although her house here for the past 35 years is down the street... but she says going home is in Michigan (where we're originally from). Sad... sad.. but the GOOD news is that she is getting FAR MORE CARE and better care now - way better than what the AL and memory care unit aides were providing... way better... I'm so relieved... (I found out I have incurable multiple myeloma cancer last July... which is the only reason my mother ever got moved into AL - she fought me "tooth and nail" for years and wouldn't go even tho I begged her for years because I needed a break - I was losing MY life caring for her, we all know that story... Anyway, because I'm so sick and in treatments, I can't get to town to visit her more than once a month... and I feel awful and sad about that, esp as I began to realize how very little real care she was getting from the AL staff...) So hospice help is a great blessing for me and my mother's care. If she lives past 6 months, I think I remember the hospice director said something about our getting her doctor to resign her up for continuing hospice care...

Cyber hugs to you as you navigate these difficult times...!
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Thanks to those who posted Medicare requirements for Hospice. My Daughter works in Delaware. A few years back the state came in and reevaluated all her patients. Ones that were not on Hospice, were put on. DD said all would die from what was wrong with them but none were terminal. Maybe there's a little wiggle room now. Like with your father. The doctor guesstimates that if Dad goes on like he is he could pass by 6 months. But Dad does well under Hospice and lives longer than estimated. Like said, some people have been on Hospice for a couple of years.

Jeanne, if Hospice is sending an aide for bathing, then the AL doesn't need to do it. If u have been paying for it then u shouldn't have to now hospice is doing it.
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jeannegibbs Jul 2018
Thanks for the example, JoAnn. Neither my mother nor my husband were paying for a bath aide so I was not familiar with that cost factor.
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Hospice is for people that the physicians can not do anything more to make these patients better. It's usually for 6 months, but the doctors can keep extending it.
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Not stupid at all: CHF = Congestive Heart Failure. It's a chronic disease of the heart muscle, characterised by steadily worsening heart function over time - the heart becomes less and less able to pump blood effectively. Numerous causes and lots of associated health problems. The American Heart Association website (heart.org) has good information.
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Stupid question—what is CHF?
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Hospice was a great comfort to my mother and myself. She passed in 2016 I still receive cards from the hospice team. Mom had been neglected for at least 5 years. So I may have been overprotective,I tried to make her comfortable. You are so right how the hworkers have time to bathe do her hair etc.The difference in her was amazing the nurse came probably 2times a week .Nurse would even do her nails ,but what a difference in her so clean and soft. My brother passed 6 days before mom my nurse was right there with me. Anytime anything Capital Hospice in Columbus Ohio were the best. Mom was at least comfortable when she passed I live north of the city in a small town so anywhere I believe you can find hospice but I did have to sign papers and mom also had to sign a DNR. They are angels
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My dad was also under hospice care for just over 2 years. It was a huge help to us and to him. He was diagnosed with prostate cancer that had spread to a kidney and to the bone. Even though he was in a nursing care facility, the extra help provided by Hospice was huge. Most of his medications were covered through hospice as were many of his other supplies. He had a male aide that came several times a week to help him bathe. This was especially nice and they became best friends over the years. I had the additional support of communication with the aides, the Social worker, the hospice nurse, and even the chaplain. I did choose the hospice and I knew the nurse personally, she was also my mom's hospice nurse (mom passed 4 years before my dad).

While hospice does have to be "ordered" by a physician and a patient has to be "hospice worthy" to meet the criteria (which may vary in some States), they do not have to be actively dying. In my opinion, having a good hospice care in place early is a wonderful blessing to the patient and to the family.
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My husband went on hospice about two weeks ago. Any of his docs could have recommended him, in our case it was his neurologist. He has moderate dementia, has had two falls, one of which required a full hip replacement a month after he had a stroke that permanently weakened his left side. That was seven years ago. Last September he fell and broke his left femur which required surgery and two weeks in rehab. Since then, he has continued to become weaker, in spite of two more stints in the rehab facility and constant in-home therapy or out-patient therapy. He’s also been diagnosed with COPD and moderate kidney disease. But he has no terminal illness. Now, he can only transfer from the bed to a wheelchair and he sleeps most of the time. He made a firm decision that he didn’t want any more therapy or leave the house ever again.

Our hospice is completely covered by Medicare. Our understanding is that he will be evaluated in 90 days, again in another 90 days and every 60 days thereafter. If he continues to worsen, he stays in hospice. Some people improve and they no longer need hospice.

Like others have said, we have a nurse who comes twice a week, an aide who bathes him (in the bed now) 2 or 3 times a week per your request. They have a chaplain and a social worker. I was especially happy about the social worker. She helps with paperwork (DNR, Medical Power of Attorney, etc.). Also, I’ve been so concerned that the time may come when I can’t physically take care of him. So the social worker is there to guide me through options and help that way. The nurse takes care of all necessary meds, incontinence supplies—everything is delivered to the house. We don’t have a hospital bed yet, but may need one in the near future. Oh yes, the social worker has a program where volunteers will come over so you can get out a bit.

One more benefit Medicare covers is if you need or want to go somewhere or just need a break, they will pay for a 5 day stay in a facility. I think it might be every 3 months, but not sure. I might like to take advantage of that to go see grandkids, but my husband doesn’t want to leave the house! So we’ll see... hospice has been great so far.
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First, "not much other than CHF being wrong with him." CHF is not nothing. It's great that your dad is in good spirits. He's probably stable right now. But a CHF exacerbation could come on suddenly and have a poor outcome.

Your dad couldn't have been transitioned to hospice care without someone's signature. If your father is of sound mind, he may have had a discussion with his doctor and signed the papers. Or, maybe he isn't as sound of mind as people think and he signed the papers without really understanding them. Or his medical POA signed them (hopefully after talking to him). Have you had a direct conversation with your dad about how he got to hospice?

Hospice actually takes on many forms now. It's most often used for people in the last 6 months of their lives, but people have been in hospice for up to a year or more. People go in and out of hospice based on prognosis. It's also used as almost a respite tool.

Talk to your dad or whoever is in charge of his medical care.
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My mom has been on hospice care since February with stage 5 Parkinsons and it has been one of the best decisions we made for her care. Since she is wheel chair bound no more outside doctors appointments has been great since they come to her. She gets a discount at her AL facility for her incontininence care since hospice supplies the depends and wipes. Depending on how the AL bills for care you could save on the care portion as well if you pay for services or the hours spent on care as the two showers per week cuts down on these services. My mom really enjoys the showers from the hospice aide as they take more time with her and make it more personal than the AL staff who seems to be rushed quite often to get to all the residents. I have found no down sides to hospice because once you decide your loved one is not going to undergo any more treatments for their illness hospice is all about comfort care. Good luck.
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He may be on the Palliative Care side of Hospice Services which is for people who have a chronic illness such as CHF. Check with the Hospice Organization to see exactly what he receives. Palliative Care provides symptom management along with a Chaplain, Social Worker, and also a Doctor who makes visits to the Assisted Living.
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My Husband was on Hospice for 3 years.
As long as certain conditions are met a person can qualify for Hospice.
A life limiting condition.
Getting no treatments for THAT condition. (This means if something comes up like an infection that can be treated, but in your case his CHF can not be treated)
A documented, continued decline.

Personally I think Hospice is wonderful. And unfortunately people do not take advantage of it. For someone that is in the home you will get help in every week sometimes several times a week, a nurse will come to see the patient, you will have a Social Worker, a Chaplain if you wish and most Hospice will have volunteers that can come in and sit with your loved one while you run errands if there is no one else available. You will also get all the supplies and equipment that you need. I would not have been able to do what I did if it were not for the AMAZING and WONDERFUL Hospice team I / we had.
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My dad has been in hospice care since last May. After 6 months he gets recertified.
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My dad has been in hospice since May 2017. He was given months to live by an oncologist. He has been up and down with his dementia decline but took a steep decline last week. He gets recertified every 60 days.
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My mother was is now in the care of hospice and it is the best decision we have made. Hospice is not just for people with days to live, but instead, they now offer palliative care for those with chronic illness or chronic pain. In my mother's case, it is chronic pain in which she will never be without. Hospice comes in and we waived the right for treatment to "cure" the terminal illness. (She has cirrhosis of the liver, so there is no cure.) Instead, the hospice's job is to make the patient more comfortable and able to deal with the illness or pain. Mom is now in her 4th month of hospice care. The benefits of hospice are: 1. no more doctor visits for the diagnosed illness or pain. Doctor visits may still be made for other issues, but since a nurse visits 1-2 times a week, I see little need in our case. This was a huge blessing since she has 4-6 doctor visits a month in the past! 2:. Constant care with the nurse and doctor. Our hospice company is wonderful in that if there is an issue at any time, they are on the phone and often offer to come to visit on the spot. 3. Bath ladies! These are the angels that come and help mom shower 3x a week! They are trained, know how to help her feel comfortable with being bathed and are gentle. She loves them! 4. Due to the vigilance of the nurses, prescriptions may be changed as needed without having to schedule a doctor's visit. They meet weekly to discuss each patient. If an immediate change is needed, they will tell you what to do. 5. Medicare often pays the full fee for hospice care, including any prescriptions they prescribe. At least, in our case, there is nothing out of pocket for this extra care since my mother has Medicare A, B, and D.

For all of these reasons, my husband and I have a little more peace in our lives as caregivers. Mom is bedridden and hospice care has been a true blessing. Mom completed her first 90 days and they had to do a blood test to see if she is still ill enough for services. She willingly held up her arm and said take my blood! LOL! They will need to do this at 90 days, 180 days and then 60 days thereafter, but the serves are indefinite. If you are happy with the company, count your blessings for the help. IF you are not happy with them, look for another company. There are many out there, even in small, rural towns like mine. Their job is to support the families and take care of the patient, making him/her comfortable. As a hospice employee told me on July 4, "We are here to serve our patients and their families 24/7." What more could we ask for?
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As stated by many above the doctor has to feel the patient has less than 6 months. and as stated the CHF gets to a point it is terminal. The other thing that you, C47090, mentioned is he no longer wanted treatment. There is also palliative and the "new care" that at my institution they call supportive care. I volunteer for a hospice, and have take a patient to chemo treatments. My understanding the supportive care is for people who need the extra care and allows them to transition or hospice care sooner, so that their needs are being met. (As someone have mentioned, there was criteria for the trial sites, I think one of the criteria ours was chosen was because of the volunteer support available. so if you have the opportunity to volunteer, it makes a difference. Also there are volunteer positions that are not patient care, if caregiving is not your strength.) Also my mother, SIL. and FIL have been on hospice. My mother and FIL both graduated from hospice, because the care they gave enhanced their daily lives. My FIL was at home, but we did get hospice the 2nd time when he suddenly got very ill and we only had hospice for 6 hours. But only that six hours was a huge help. And the hospice provided bereavement classes and support groups, which again were very helpful. My mother is in AL care for Alzheimer, she also is on hospice services for the 2nd time. The criteria that allowed her to go back on services was 3 months of significant weight loss, 7 months ago. Her weight loss had plateaued for 2 months, 1 month ago and the nurse talked about taking her off again. In our discussion, I brought up the facts that she was no longer ambulatory, and greatly decreased in her verbalization, since the second admission. The nurse agreeing that these are also signs of decline, agreed to give another month with the aide coming in only 3x/week instead of daily. Her weight decreased and she continues on hospice. In the AL setting, I have seen hospice patients, as well as my mother, (my mother has been in the memory care unit 5 years) become more content, alert and relaxed. It is also nice that hospice supplies a broda chair and Depends and other medical equipment. I wish you well on your journey.
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Hi c47090,
Mother's doctor told me he placed Mother on Hospice because he realized I was doing everything alone and it was to help me,but after she died 3 and a half years later,he admitted that he really thought Mother had 6 months or less to live.
Hospice did help me though.They brought supplies,ordered her medicine,had it delivered, had the oxygen sent,got her a wheelchair,sent a nurse twice week and a bathaid twice a week,and a Chaplain once a week came too and through a Grant Hospice had,Mother was approved to receive Compassionate Touch where a lady came and rubbed Mom's back and she was even treated to a Frank Sinatra show by her Hospice too.
My Mother lived and slept in her lift chair too like your Dad does too.She said she wanted to be out in the den where the action was.As long as your Dad is comfortable,that's all that matters.
I'm glad you're getting some help now too.Take good care~
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The URL Barb posted for the Medicare Choices Model has changed; that original site isn't a viable one.

Try this instead:

https://innovation.cms.gov/initiatives/Medicare-Care-Choices/

Besides seeming to be what could be a viable modification, I found something of interest: "selected hospice providers" would participate. I'm wondering if this means competitive bidding, or what criteria would be established for the "selected" providers.
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From what I remember,there is a specific ehection fraction required for CHF. I'm sure all the right hoops were jumped through!

On hospice, mthr still lived in memory care, but she had an aide to bathe & dress her and 2x month visits from a nurse practitioner. The real help was in having no more ER visits! Hospice was called instead of 911 and she was treated by dementia spectialists instead of docs bent on over testing her and confususing her further. It was a true blessing.
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Thank you all for your responses. The "swoop right in" was planned, so to speak. When our family discussed it, we agreed to hospice becoming involved. We told the AL place, and they made all the arrangements for hospice to come in. I do still pay for him to be at AL, as he's there with his friends. Dad does not want to be a burden to us and live with us. He continues to be self-pay at AL. He's loving all the attention he's getting from hospice. My mom/his wife passed 15 years ago, and he knows what a help hospice was. She was only under hospice care for a week before she passed.
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My mom was on hospice in AL. Her diagnosis was CHF. There are 2 parts to hospice:
Palliative care is for people with a chronic disease who have decided not to pursue any more treatment for the disease. In my mother’s case (she was 97), we decided against any more hospitalizations for the CHF. She received comfort care which included antibiotics for pneumonia, skin management, etc, but no aggressive treatment for the CHF itself. An aid came to the AL to help with bathing and she had a volunteer to visit. This would go on indefinately, since CHF can’t be cured. They dealt with equipment needed and management of oxygen.  She also had RN visits for assessment.  If she got to the point of 6 mos prognosis, she would have been moved into the hospice phase.  She passed away in her sleep before this happened.
Hospice is given when there is a 6 mos. prognosis. It is more intense comfort care, more nursing visits, etc. If a person lives past 6mos, hospice can be extended by the dr.  If they become better, they may be moved to palliative care.
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