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My father was placed on hospice 3 months ago because he has congestive heart failure (2 arteries 80 % blocked and 1 artery is 100% blocked) he was too weak to have a heart catheterization. And because of years of mismanaged diet his diabetic kidneys were in ESRF. (He left the hospital with a kidney function at 12.) He has high blood pressure, as well as mesothelioma, COPD, and sleep apnea. He is now totally bed ridden,


He is on hospice for his heart and has a DNR. He is not on dialysis. My mother and I both care for my father but we do not agree with one another on any of his care. My father has expressed to me that he does not want to die. He has told me that he wants to beat this. I have promised to help him. So now I am butting heads with both my mother as well as his hospice. The issue I’m looking for clarification on is the attitude his hospice has. He is not on dialysis because his hospice tells us that is preventative and they do not cover that. He is on hospice because of his heart. We are unable to afford medical transportation to the dialysis center. My argument is simply that with the exception of his cancer, all other issues are related. His diabetes has caused his heart issue. They now cover his insulin but still will not budge on the transport to an from dialysis. I have managed to raise his kidney function to 19 now, and am fairly certain that with diet we may be able to get him strong enough to have the surgery and may not need the dialysis.


His most recent challenge is he has a bowel blockage. We know it’s a bowel blockage because this is nothing new to us. In the past year he has been hospitalized at least 11 times needing his stomachs pumped because of the blockages. The most recent trip was 4 days ago. He hadn’t had a BM for 4 days and woke up in considerable pain and vomiting. Because hospice told us to call them rather than an ambulance, my mom called hospice. The nurse came and after about 30 minutes of trying to get him to hold down Myralax she called the ambulance. They transported him to ER and followed them to hospital. She made it there before we did. When we got to the hospital we immediately noticed they had not treated his pain, and had not done the EKG. No tube down his throat. Nothing that they normally do. I had to insist his pain be treated, and insist they do the EKG. ( his BP reading was 218/98) after a couple hours the dr came in and told my mom he was being discharged. I questioned why she said he did not have a bowel blockage he was only constipated. Despite having to give him a shot to lower his BP and Dilaudid to manage the pain. They said he does have a UTI and sent him home with antibiotics. 3 days later hospital called to say they prescribed the wrong kind of meds and to pick the correct kind at Walgreens (they had called the right stuff in)


Now he is going on the 8th day no BM. He eats 3 times a day but nothing’s coming out. Hospice called this morning and told mom to buy some suppositories. Said she would administer it when she comes. He gets 2 stool softners a day on top of myralax everyday. He just drank a ton of magnesium stuff none of which are producing anything more than a very small amount of gas.


I am furious because from where I’m standing it appears that every single person on his team is totally incompetent. I happen to think that 8 days without a BM is an emergency. My mom believes hospice is doing good because they are trying to be so helpful with the follow up calls and going to the store to buy what he needs out of pocket. I pointed out to her that Dad is money to them. Even Ted Bundy smiled to gain his victims trust. To me that means nothing. I could be wrong. I’ve made it clear I don’t trust their opinions. Simply because we’ve literally had to beg them for everything he has. Am I expecting too much? Too close to this to be objective? I feel like I’m the only one who wants him to live except for him. But it could be stress. Would appreciate a fresh set of eyes.

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Valenciasmom;
Venting, however much or little, can be good! Glad to hear that dad's been able to "go".
Had to break my comments into two! yak yak yak!

Although I can commiserate with you on where there's a spark do what one can to keep life going. My oldest cat (almost 20) has been going slowly down the CKD path (similar to dad's kidney disease.) I realize a cat might not compare to a parent or other loved one, but she is special to me. She's been with me since about 2 months old (found as a stray) and we are very attached to each other.

There is no cure for CKD, only some treatments to ensure the cat doesn't feel like crap. After being medicated for Hyperthyroidism but still losing weight, she went in 2 years ago for the "cure" treatment - no issues since (she was 18 then.) Having found some lung growths in April, I took her to a specialist, hoping for treatment, if possible, or at best palliative care suggestions. What a waste of time and money! The doctor there only repeated the tests we had just done the month before (had those results sent to him before the appointment) and was told the only way they can determine treatment, including palliative care, was to do a surgical biopsy or lobectomy (location prevented regular biopsy.) Given her age, CKD and inability to gain back all the weight lost during the medication treatment period for the thyroid, I would not put her through surgery (warning given was that she might not tolerate/survive it anyway!) So, long story short, I give her whatever she wants to eat and try to make sure she's not suffering. Much as I would like to cure the lung issue, at this point it is a race in time between the kidneys and the lungs. That useless exam was 6.5 months ago and she's still here. So long as she is eating, using the litter box, able to get around on her own and relatively comfortable, I will let nature take it's course. I had been preparing myself for losing her, but another developed a sudden serious issue (age 15) and was lost the same week as the lung results and losing my uncle. :-( I was NOT prepared for either!

In your dad's case, it is a difficult place you are in. He wants to live. Your mother can't or won't deal with any of that. You want to help your dad. Rock and hard place. I would probably be more in your camp, but at some point would have to try to be more realistic.

If the kidneys still have some function, keeping up whatever you are doing to keep them going is good. If he could get transport to dialysis, would he be capable/willing to sit through many hours of treatment? It is not a quick trip!

Same with the heart, working on whatever you can to help - get some suggestions from the doctors, such as any kind of exercise that might help.

You had mentioned mesothelioma - I had to look that one up. That does not have a good prognosis, unless treated VERY early. Someone else posted the estimates for survival, but we don't have any idea when this was found nor how far along it was before being found. Despite your best efforts, surgery might be very bad for your dad (he might not survive the anesthesia due to both the heart and kidneys.) Obviously it would have been best to let the doctors do their testing to determine that, but even their best guesses might not be right, either way.

So, given other's comments and my feedback on hospice, it might be good to explore what options you have for hospice. Changing to another group might work out for the best. If dad continues to improve, he can always go off hospice and seek treatment for the heart and/or kidneys. Focus on quality of life rather than quantity. Would it be better to spend 1/2 the week in dialysis or spend that time doing something more enjoyable, getting out with your dad if you can to make some good memories (assuming he can get out with your help)? If he cannot get out and about with you, find things you can do together to make his time more fun - games, puzzles, movies, small projects, etc.
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Valenciasmom Mar 2019
So sorry to hear about your kitty I know how hard that is. Thank you all for the response. Reading back through my posts I realize I should not have said " everyone on dads team is incompetent" they aren't all. His caregivers are pretty good. They come in 5 days a week to bathe him. Mom has asked for more hours but they don't have the man power but r willing to transport him to a facility for respite if need be. Dad doesn't want that. The nurse and I don't get along mostly because her attitude is more like " he's gonna die so why bother flushing his dialysis port, or what does he need a lift chair for, why clean his folley, why give him antibiotics when he could easily get cdiff and die" (the part about the cdiff she did say) and the Dr doesn't seem to be much better. Her answer to everything is "give him more pain meds" despite not being able to tolerate the morphine she wouldn't prescribe anything else. She said just give him the morphine (even though he itched terribly and vomited with it)so yes we have battled them all the way because he does have so many conditions they don't have the time or compassion to consider what we tell them. My personality is one where I know many times (sad as it is)we must stroke the ego of our Dr to get them motivate to rise to the challenge. My mother on the other hand is the most negative person I've ever met. She would say she is a realist. Which my family all knows is bs. If we would have listened to mom 18 Years ago when Dad was diagnosed with mesothelioma he would have died from lack of oxygen when I told them seek treatment or trials mom said don't hold your breath your gonna die in a year. Let me repeat that - 18 years ago when he was diagnosed with cancer that has a 8-12 month life expectancy and no cure. So that in a nut shell is the roots from which my mother and I disagree. It's very exhausting.
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I have not really had any experience with hospice care, but it doesn't sound like this particular organization is doing your dad any favors. My uncle was on hospice, per his choice, but I was not involved in it. I visited a few times near the end, and was there when the hospice person came in. She was attentive and addressed his concerns. He was in a NH long before this, so he was getting care all along. When I first went to visit, he was so medicated he was mostly out of it. When I was coming to visit he would refuse the pain meds so as to be more awake for our visits. He also seemed to be having some bowel issues at that time. Unclear if it was all the medications (he was diabetic, had one foot partially removed), the conditions he had or both.

Just now I did a quick search.
From https://www.nhpco.org/about-hospice-and-palliative-care/hospice-faqs

"Will I be the only hospice patient that the hospice staff serves?
Every hospice patient has access to a hospice volunteer, registered nurse, social worker, home health aide, and chaplain (also known as the interdisciplinary team). For each patient and family, the interdisciplinary team writes a care plan with the patient/family that is used to make sure the patient and family receive the care they need from the team.  Typically, full-time registered nurses provide care to about a dozen different families. Social workers usually work with about twice the number of patients/families as nurses. If needed, home health aides, who provide personal care to the patient, will visit most frequently. 

All visits, however, are based on the patient and family needs as described in the care plan and the condition of the patient during the course of illness. The frequency of volunteers and spiritual care is often dependent upon the family request and the availability of these services. Travel requirements and other factors may cause some variation in how many patients each hospice staff serves.

Is hospice available after hours?
Hospice care is available ‘on-call’ after the administrative office has closed, seven days a week, 24 hours a day. Most hospices have nurses available to respond to a call for help within minutes, if necessary. Some hospice programs have chaplains and social workers on call as well."

The above is more than I wanted to post, but the first paragraph covers what staff is provided and talks of a care plan, the second the fact that care should be available 24/7.

I have also read others comments about how hospice is there for the family too. Do you have access to his "care plan"? Is it possible your mom prevents them from coming nights or weekends? If this group is just bad at doing the job, do you have authority to change to another organization (aka POA that might override mom's decisions or help dad find another place without consulting mom?)

Given mom seems to have issues with both the care and medicating, is it possible to have dad move to a NH, where he might get better/consistent care, and perhaps maybe at least feel better? Unless you live with them and can provide most of the care/medicating, and ensure mom's "care" isn't counterproductive, this could be an option, if he is agreeable. So long as he still is capable of making decisions, mom shouldn't be overriding what HE wants.
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Update: dad had a BM about 4 days ago and is on a schedule of voiding about 3-4 times daily. No diarrhea just what I believe to b a normal healthy movement. Eat 3 times a day, have 3 BMs. He has been on pain killers for many years so he has always had problems with constipation. I pitched a fit and his nurse came and manually helped him along. I'm still not happy with him because even though they called for an update daily, they refused to send anyone on the weekends or after 5.
Ill try and answer some of the many questions many of you have had.
Yes I am in denial. I know that I am because I know me and my philosophy has always been I won't give up until he tells me he is tired and doesn't want to fight or he has taken his last breath. My mother on the otherhand, gives up without any fight what so ever. Which is why he is on hospice. The cardiologist and kidney specialist were in the hospital giving him dialysis and the cardiologist was trying to determine (I think anyway)if dad could get strong enough to at least have stints put in. He was asking if Dad was a smoker (no )was dad a drinker(no)mom got upset with questions and asked him to leave and out of fear and frustration demanded that he be sent home on hospice. That is how he came to b on hospice. When hospice came to the house to discuss everything with us even they asked mom if she was sure she wanted hospice. She again became angry and said yes she is sure. So he is on hospice. She has never been a caregiver wife or mother. We all know that. I do everything for him but change his diaper. She does that. He doesn't want me to see him that way and I don't either even though I will if I have to. He doesn't like to ask her to do anything so he waits until she leaves the room and then he will ask me to scratch an itch or rub biofreeze on his back.
You all are right he is on limited time. So I do not make my feelings known to my parents because I know it will just make things harder for my dad.
Dad is approaching 73 mom is approaching 71. And no mom and I have never gotten along. But that really isn't so much the issue - for me anyway. I want my dads last days to be wonderfully memorable for us as well as for him. But I don't trust my mom. I don't trust her at all. A prime example is tonight at dinner, she was cooking. I said I would take his glucose reading and give him his meds. I did. I gave him his shot and his pills. I logged it on the notebook. We ate I went to the restroom and announced I had to pick my daughter up I would b back in a minute. Walked past dad and noticed he was getting ready to give himself another shot. I stopped him and asked what he was doing she defended him by saying she was giving him hi_ shot. I said I just gave him his shot before dinner. She said oh see I didn't know that. That is why I suggested the notepad. Same problem with his pain meds. If he needs one I give it to him. Mom gets mad and says he is going to get hooked. So he waits till she goes to bed and asks me to get him a pain pill and leave 1 on his tray invade he wakes up in the middle of the night. He doesn't want to bother waking mom up for a pain pill.
Im sorry I intended on making this a quick update and ended up venting. I want to thank everyone for the suggestions. It's helped more than you know.
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ThereIsNoTry Feb 2019
Hi again. That wasn't a big vent, that was useful info to see what is going on. You might be right not to trust your mom, I don't know. But the example you gave suggested more to me that she is having memory issues. Just great, another snag in things.... can she effectively care for him? Search your soul for the best path for him, one without pain. See if there are understanding souls you could discuss your thoughts with on the hospice team. I had always had such high hopes for hospice, I never was able to take advantage of it though during my mom's illness, I wonder if this aspect of hospice (helping us deal with the pain) is hype or PR.
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11 times in a year? Did any doctor ever determine the cause of these "blockages"? That seems a bit excessive and ridiculous to have to go through this about once/month!

The only additional information I can attest to is that Dilaudid (per others here ANY narcotic) can result in impaction. I was given this Rx after spinal surgery and there's not much worse than having to get a ride to the ER while still wearing a cervical collar to get a manual evacuation and enema.... I avoid medication in general and will NOT take narcotics again (never say never, but unless I am on a lettuce only diet, I will avoid them)!!
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Val’smom,
I’m so sorry for your dad’s situation. He certainly has a lot going against him. 😢
He is existing on very little heart function and with him being unable to tolerate the surgery, I don’t see how that’s going to get any better on its own.
The mesothelioma is also a chronic condition that will not get better. From mesothelioma.com;
”Average life expectancy for mesothelioma patients is 12 – 21 months. How long a patient lives depends on several factors, including age, stage of the disease and overall health. Approximately 40% of patients live past one year, and 9% live longer than five years.”

The diabetes is also a chronic disease with no hope of a cure or reversal and it wreaks havoc with the circulatory system, causing heart disease, high blood pressure and kidney failure. Maybe the blood pressure can be brought under control with meds but often not well enough.
COPD is chronic and usually worsens as time goes on.
The chronic constipation and colon blockages can be from being bedridden, narcotic use and possibly a bit of dehydration.

Your dad may be afraid to pass away. That’s often why people who have terminal illnesses want to “fight it”. Realistically speaking, the future doesn’t look too positive for your dad to regain his health. He may be in denial of the severity of his conditions. My stepdad had end stage lung cancer but was going to “fight it” too. He lasted 6 months. I think he did it for my mom.

Please talk to all his doctors about the possibility of treatment and cure. Doctors usually don’t suggest hospice unless nothing more can be done.
If this hospice isn’t “right” for him/ your mom and you, select another one-preferably one that has a high rating or referral. Then, ask to speak with a counselor. You can come to see that this situation possibly won’t change for the better, but, all the while, you will be able to support your dad in his decisions to ask for treatment (of what the doctors will and can give him). In other words, it may be a good idea to prepare yourself for a negative outcome but present a positive picture to your dad.

God bless you all in this difficult time.
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melitta: Thank you for your insight.
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He has a DNR, but "doesn't want to die" are contradictory terms.
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melitta Feb 2019
The terms are not necessarily contradictory. "Do not resuscitate" does NOT mean "no treatment". Individuals can desire and accept treatment for any number of conditions, yet request DNR in the event of cardiac or respiratory arrest.
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I think anyone who has a likelihood of dying within six months is eligible for hospice. Hospice should not and unless Medicare has a rule about it, hospice does not require a DNR. Now, if your Dad says he wants to live, why would he have a DNR, unless his cognition is nil and the decision had to be made for him, in which case, not much can be done to change it. But he could be in hospice for palliative care and for support of the family and still strive to live. I would think regular dialysis is not a great idea because in his condition that would not be a very good quality of life to spend a great proportion of your day hooked up to it. Take a deep breath, and realize that your Mom and Dad may say different things to each other than they do to you. You just stay the course and try to see what THEY want, not so much for each other, but for themselves. <3
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Hospice is end of life care. That being said, they will not transport him for dialysis however you can, some dialysis offices offer transportation to and from treatment. The hospice we work with for my MIL is absolutely amazing. These people care about their patients and do not want them to suffer. Part of your er experience was not hospice but the doctor in charge. We went thru an episode where the hospice nurse agreed that MIL should go to er, the doctor there had enough nerve to tell my husband, she's 92 and on hospice, what do you think is going to happen and walked away (after he found out that nothing invasive would be approved because she would never survive anesthesia, hence hospice care for chf). The doc who took over at shift change was awsome and made sure she wasn't in pain, gave her meds that helped her and actually took the time to read her test results where the previous doc just signed off that labs and ekg were performed, never looking at the actual results. As was explained to me, the patient can still be seen/ treated by their doctors if they so choose.(in her case primary care and cardiologist) she had an issue with really bad hemmeroids, took her to specialist, had them banded, no more constipation or severe pain. Her hospice nurse was estatic that this worked for her and asked for docs name as she had another patient having similar problems. Talk to his doc to see if senna tea would be a good solution for his lack of bowel movement. Easier on the system than pills which are usually made of the same stuff. Stool softeners and miralax are good but they are not a laxative which he probably needed 8 days ago. Get the suppositories and administer them yourself. Make sure to have plenty of wipes and waterproof pads on the bed and floor. Better a little bit of embarrassment on both sides than him being impacted if he isn't already. Hospice is there to help, not to do it all.
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Not an expert here.
But if the patient wants life sustaining care, instead of end-of-life comfort care, he can be removed from hospice, and be treated.

Support his efforts to explain his wishes to his wife, and to hospice.

It is my understanding that pain is treated, even in hospice, especially in hospice.
That can cause constipation and bowel blockages, which require treatment, imo.
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gdaughter Feb 2019
I don't recall if I mentioned prior, but there is a great set up called Curadux to help through these challenging medical conditions...it might worth checking out. Good people.
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Impacted colon? I read every post and not one mentioned getting your father’s colon physically reamed out from behind. Would that apply here? My oldest sister had to have that. Good? Bad? I don’t know all the circumstances. It was 20+ years ago. She lived another couple years. Died from other causes.
..
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My initial concern is if you AND your dad are being unrealistic based on his health issues. It's such a hard and difficult time for all. But on the other hand, not all hospice programs and workers are the same. In the end, legally speaking, it is your father who gets to convey his wishes if he is cognitively up to it. And your mother, unless he has legally appointed you as his health care POA, being his next of kin gets to make decisions if he has not. Hospice by nature means you have accepted that your end is near, and that you do not want any invasive heroic actions...BUT your pain and comfort are a priority so that should be tended to. I'm not medical so don't know about the length of time one can go without a BM. The lack could reflect his body shutting down, or dietary issues. Perhaps you might want to pass his care onto another hospice organization, get a fresh perspective, new workers who might take more care to help you understand and explain things. There are programs that focus on pailiative care which may be more of what you (and your dad?) are looking for. There also is a company (I don't know if it is covered by insurance) that helps sort things out in complex medical situations, if I understand it. It is called Curadux. The person who started it is a great guy who was, among other things, the chief of anesthesiology at the Cle Clinic. The company has access to lots of great resources and people. (you can access them anywhere). Good luck with it all...
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I would think that after 8 days, your dad should be NPO (nothing by mouth) until he is able to go. My dad was prone to this problem due to anti-seizure meds. This is what they would do. Nothing by mouth. If not, it became life threatening; he would vomit blood. It is a very delicate balance. Any chance that you could request a different nurse from hospice?
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I recently put my Mom on hospice she resides in an assisted living facility she has stage 3 CHF my Mom was tired of being admitted to the hospital. Even though your Dad's physician signs off that he is expected to live 6 months many people get better on hospice and stay on it much longer of course it depends on their conditions you had the right to have him transported to the hospital but you have to take him off hospice prior to taking him to the ER or they will not be aggressive if that is his choice and Medicare will only cover so much if he is on hospice you can always resume after he is discharged you have the right to select a different hospice firm CHF unfortunately does not get better especially when the kidney functions are impaired I refused to use the hospice Doctor everything still has to go thru my Mom's primary and cardiologist hospice is a good resource fortunately I am the POA and have no siblings makes it much easier you have your Mom which has a difference of opinion I've had instances that I did not agree with hospice and stressed my views you have that right. It's also quality of life and what your Dad wants 11 hospital transports is a lot and I'm sure has set him back I would look into services that your state may provide I know a woman that is very wealthy that transports cancer patients to their appointments free of charge. Hospice goal to make the patient comfortable but if I see that my Mom needs to go to the hospital and she agrees to it I would immediately take her off so she could get more aggressive treatment.
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Good grief. You two should be ashamed. Take your egos out of this equation. Let Hospice do its job. As far as what your dad wants; it's irrelevant at this point. You and your mother need to step back and make sure he is cared for physically. You are there to give him love and company. I would ask my dad, and later my mom, questions like "If we didn't do XYZ, what do you think would happen? Tell your dad that your job is to make sure he is safe. So if he feels safe, you are doing your job. It's not your job, or your mom's job, to be a nurse. It's your jobs to be wife and daughter. Stop fighting.
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gdaughter Feb 2019
If anyone should be ashamed it is you of your response. Clearly well-meaning but insensitive to what this daughter is going through and ignorant of the possibility that this may not be a good hospice program. These days people must advocate for the best care on behalf of their loved ones and themselves. This is not an ego game. The reality is this may be a poor hospice program or lousy caregivers involved, and the bottom line is if her dad is alert, it is HIS wishes that should be regarded above all others.
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You are not expecting too much. Their job is to make his quality of life comfortable. My dad is on hospice. The company is Caris. You can switch to a different hospice organization. I am very pleased with Caris. My dad receives great care from them and the people are honestly caring.
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Medicare suggests the following ways to file a complaint about hospice care:
Contact the patient advocate of the hospice agency.
File a complaint at Medicare.gov.
Tell a Medicare beneficiary ombudsman that you'd like to file a complaint, and he or she can help you.
Sep 10, 2018
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gdaughter Feb 2019
Well, just remember step one is the patient advocate of the hospice agency or wherever else (i.e. hospital) is having their paychecks signed by the same agency you are complaining about. To me that is a waste of time. I've been there/done that. Better to report to the Long Term Care Ombudsman, and better yet to just switch agencies for the time being and deal with the bad place later if so inclined.
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Here's a different approach for you: you need counseling to learn how to support your father and your mother and stop fighting everyone and everything.

How do you support your mother? "My mother and I both care for my father but we do not agree with one another on any of his care." Her life must be excruciating right now. Don't make it harder.

While there are good and bad hospices, I can't believe "every single person on his team is totally incompetent." Talk with the manager of the hospice of your concerns. Learn the facts of his condition, what to expect on his condition, and what hospice can and can't offer. For example, my mom's hospice said we must call them if something issue develops but DO NOT just take her to the ER. If we do, then the medical costs are NOT covered by hospice. If you have a complaint, tell the manager.

You're in great pain yourself at your father's condition and prognosis. I get it. But don't make it harder on him, your mother, and yourself. His hospice very likely has counselors on staff--my mom's hospice did. He helped me enormously. Please seek them out.
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ThereIsNoTry Feb 2019
I totally understand feeling that everyone is incompetent. Surely you can't think 8 days without a BM is not an emergency?
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Hospice doesn't step in unless death is the only outcome. Most people that are dying....want to live. Call your church and have the pastor talk with him. If your Mom is in decent health and has her faculties.....she is in charge, and you should be backing her up. Hospice would not be there if there was any hope of a different outcome.
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acacia Feb 2019
Hospice is no longer available to only those with a life expectancy of 6 months or less. People come in and out of hospice care.
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You are not wrong why they are being pleasant because some of them know that he is not getting the proper care and they can't say anything.I would have a talk with the Dr and be forceful when you speak to him. let him explain why they are not doing what you feel should be done. The sad part is when a patient has a lot of issues like your Dad some Dr's and facilities do not give the care that they should.. I know I was an Advocate for a Patient DPOA and believe me I see that they did there job it was a struggle especially if the are in a Nursing Home. Good Luck be Strong get some answers
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In my opinion only--if he's bed ridden quality of life is zero. Hospice at least will help with his care bringing in home health aides a few times a week for the bed bath, and they will provide a hospital bed. Bed ridden also will cause constipation due to lack of exercise.
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First of all, if he has kidney disease do NOT give Milk of Magnesia or any kind of phosphate-based enema such as Fleets because the kidneys cannot excrete them. This will cause magnesium and phosphate toxicity. His hospice doctor should have prescribed LACTULOSE which is kidney friendly and will flush ammonia. Water and oil enemas are also good. On the average, a person can get impacted as little as 2 days and my experience with stool softeners with my mom is that they simply do not work. If he is on hospice, the nurses should be able to deal with his constipation..but sometimes you have to be proactive and insist on them getting LACTULOSE. If constipation is a chronic problem, use it daily. It is actually not a laxative but an indigestible sugar that once in the bowel will accumulate water thus allow evacuation. The same principle of sugarless candies that can cause diarrhea for some. My mom is insulin-dependent diabetic and it has not affected her accuchecks to the least. Like I said, Lactulose is not metabolized. Lactulose is requires a prescription, and is covered under hospice's formulary so it's free.

Much depends on the lifelong bowel habits. FOR SOME they can normally go once very few days. You have to know their baseline and go from there. Most people evacuate daily, but this is not the case for everybody.

Chances are he is impacted if he has not gone in 8 days, especially if he normally goes daily. He will eventually start vomiting feces. Believe me I seen it happen in other people. Vomiting feces can get in the lungs. Yes it is a medical emergency. Even at a palliative point of view.

If he is taking any kind of narcotics the chances of him getting impacted are much, much higher being a side effect.

KEEP A BOWEL DIARY, that is, write it on your calender when they had a bowel movement and write down the time. Describe if it was very small or very large or average sized. This way you will not lose track when they had their last bowel movement. My mom used to flush, but now she can't due to advanced Alzheimer's. I had to buy a flush lock for my toilet to ensure I had an accurate recording of her last bowel movement. I found a flush-lock on Amazon (it's designed to not allow children to play with the flusher) and it's been on the toilet for years.
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dlpandjep Feb 2019
Very informative - my Mother has trouble with constipation and I have learned a great deal from this post.  It was remiss of me to suggest an enema without mentioning that elderly and especially those with kidney failure should never use Fleets (sodium phosphate) enemas.  Thank you for such a thorough and informative post!!
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When all else fails, enemas work.  Constipation/blockage - why doesn't someone give him an enema?  Geesh.
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Isthisrealyreal Feb 2019
Not all enemas are premade. A enema bag with warm water and an oil could help without causing more problems. Soap is great but can not be used with heart disease present.
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You don't mention your parents ages.

My Dad was over 75 when he went to rehab. Mom put his diabetic socks on. (I asked why, thats why there are aides) She found two open blisters on his heels and mentioned it to the Nurse. They bandaged them but I mentioned it to my RN daughter. She looked at them when she visited. They were showing dead tissue, not good. She went out and demanded an air mattress and someone who knew woundcare. I am telling you this because my Mom was so complacent. I was the one that had that gut feeling. (We had a problem with CNA with attitude and Mom took it. Never would have allowed that from one of her children) Daughter handled that too.

Mom probably feels that Hospice knows best. Not always. There are good ones and not so good ones. It has to do with the staff.
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NeedHelpWithMom Feb 2019
Wow, that’s scary. We usually assume hospice is wonderful but that isn’t always the case. You’re wonderful for caring as much as you did.
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No, your are not expecting too much. Allowing Dad to be in pain and discomfort is not what Hospice is suppose to allow.

Dialysis is not done on Hospice. My GF, who was a juvenile diabetic, kidneys had failed to the point she needed dialysis. Years of needle injections collapsed her veins so regular dialysis was out of the picture. She was being given peritoneal dialysis. She was going to be allowed to to do this on Hospice if they could find or train a nurse who could do it. She passed before this could be done.

The decision to stay on Hospice is your Dads. The reason for it is to keep him comfortable and pain free. There usually is not any hospital intervention. If you and Dad feel he needs/wants to go to the Hospital, then take him. But, Hospice will probably discharge him. Mom really doesn't have a say.

By the way, they are not paying "out of pocket". Everything they are doing is billable to Medicare. The follow up calls are part of the service because they are not there 24/7. If the need for Hospice arises again, get a different one.

I say go with your gut but be aware, that if he stays on Hospice and is not getting dialysis, he will pass from the toxins in his blood eventually. All this should have been discussed before Hospice came into the picture. What they can and won't do.
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NeedHelpWithMom Feb 2019
So good of you to educate us on how the system works. All of us has different situations and we can all learn from each other. Thanks.

You’re right about the differences between hospice facilities or treatment. The first hospice organization that my brother used wasn’t so good. He moved to a different location and decided to use an organization that was recommended by a friend of his and that one was terrific! He wasn’t in any pain, died peacefully. The social worker was very good as well.
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Is there a possibility that he is telling you he wants to "beat this" only because he knows this is what you want to hear? It may be time better spent to accept the reality of your dad's multiple problems and let him know that you will be ok after he passes, as this may be why he is saying this. If you feel that this hospice is acting incorrectly, call others and see if any of them might be a better fit.
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Is your father not competent? I was just wondering as he can stop hospice anytime he wishes. If your father wants to live (other than coronary artery blockages)why is he on hospice? Do you know what his cardiac ejection fraction is? Is he on oxygen?

What is the cause of his chronic constipation? Is cancer causing bowel obstruction? If that’s the case they can perform a colostomy.

As for dialysis, Medicare/Medicaid does pay for transportation to and from. Usually a person is started on dialysis if their kidney function is less than 15 (GFR).

Something is missing here in that there appears to be a disconnect between your mother and yourself & hospice. Hospice isn’t usually ordered unless one has a terminal illness.

The bowel issues bother me. If your father is chronically constipated they should have him on a regimen of miralax, & stool softeners daily. The family usually gives the person meds as the hospice nurse isn’t there 24/7. What is he getting on a daily basis to help him move his bowels?

Its not likely your father will improve enough to have CABG (coronary artery bypass surgery). While I don’t have recent labs, if his GFR is 19 his kidneys aren’t functioning well enough to get him through surgery. A risk too is contrast dye used in many testing procedures. With renal failure using contrast dye is contraindicated as excreting the dye can and will put his kidneys over the line.

Does he have a dialysis access - a catheter for hemo, a fistula or graft? Has he received any dialysis yet? Many times dialysis is performed on an acute basis to get excess fluid removed quickly.

You say you want to help your father “beat” this - what is “this”? Which condition? Do you doubt he needs hospice? If so, then take him off hospice and start aggressive treatment. But with a 100% blockage in one coronary artery and your father being a poor surgical risk hospice is appropriate as a treatment choice.

If you haven’t already, speak with your father’s doctors to get a validation of why your father is on hospice. I imagine your father is on many cardiac medications in an effort to improve what circulation he has to his cardiac muscle. How are they managing his blood sugars now?

I know this is a rough time for your family. Realize your mother is losing the love of her life so it may not have been easy for her to have agreed to hospice and now waiting for him to pass away. It sounds like your mother is comfortable with the decision to place your father on hospice but you are not. Maybe if you talk to his providers you can gain a better understanding of his physical conditions & why hospice is appropriate.
Your mother is likely going through early grieving and her behavior, which you disagree with, can be a coping mechanism for her to get through this.
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cetude Feb 2019
I agree much depends on the patient and condition. My mom will be 90 in six months but with severe end-stage Alzheimer's disease; someone like this would most likely not be a good candidate for dialysis because it would wipe away whatever little energy they have and the frequency of having to get dialyzed; they have to get to a facility three times a week and it takes hours. End-stage renal disease can be managed conservatively.
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Is your father in charge of his own medical decisions? Did he agree to Hospice?

A patient who wants to " beat" his illness is not appropriate for hospice care. Who "placed" him in Hospice?

Can you not get Medicaid or Medicare coverage for transportation to dialysis?

https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.cgsmedicare.com/hhh/coverage/coverage_guidelines/esrd.html&ved=2ahUKEwjng_X4vMzgAhUOMt8KHS6TDC8QFjABegQIDxAG&usg=AOvVaw1A7lRbXXMvq--YPoDvwEI7

Perhaps you should look for a hospice organization that will agree to dialysis. If his terminal dx is not related to ESRD, it appears that dialysis should be provided.
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