I'm so angry.
Dying shouldn't be like this. It shouldn't be about battling with the healthcare provider in order to obtain adequate care for the patient. It shouldn't be about watching your loved one suffer incredible mental anguish and physical pain. Hospice is supposed to be about palliation, about making sure the patient is comfortable. My dad's the opposite of comfortable.
Our hospice provider isn't doing a thing to help get Dad's extreme agitation under control. Their answer is always to give more meds. And I'm definitely in favor of meds, when they're needed. However, the meds aren't helping.
Dad needs in-patient care, but the hospice provider says they can't locate a facility in which to place him. That's the wrong answer, as far as I'm concerned.
With Dad writhing around in bed, about to go into full-blown combative mode, I call the hospice nurse manager.
"What's the status on placing Dad in a facility?" I ask.
"Well, I've called every facility we're contracted with, and none of them can take him," she says.
I say nothing in response. Tension-laced silence flows across the phone line.
"The thing is," she continues, obviously flustered, "Medicare guidelines require us to use a facility that has an RN on staff 24/7, and there simply isn't one in this town. So, there's nowhere to admit him."
I channel my anger into the iciest tone I can muster. "So, what's your plan?"
She begins to make an excuse, and I interrupt her. "You need to understand this is now a patient safety issue. Dad is pulling out his hair and poking himself in the eye, he's so agitated. You have a moral, ethical, and legal obligation to keep Dad safe and to keep anyone else from getting harmed."
Again, silence stretches between us.
"Let me call you back," she finally says. I say nothing and hang up. I think I've made my point.
Two hours later, the hospice nurse manager calls back. "We're going to do intensive comfort care," she announces. "We'll have an RN at the bedside beginning at 7:30 tomorrow morning, and she'll stay the entire time you're at work. She'll be there for the next two days. Her job will be to get his agitation stabilized. Will that work for you?"
Although this still doesn't solve the overnight problem, I agree to the plan. My hope is that a couple days of intensive nursing will get Dad's symptoms controlled and his medications titrated properly.
Lee tells me I'm a lioness and that I did the right thing. He says Dad would be proud of me. I'm not looking for accolades. I just want Dad's suffering to end.
Hi Malvasia, Thanks for your comment. If you have concerns about what you are paying for with your mother's current nursing service, I would definitely ask someone from the agency to go over the bill with you. Good luck, and thanks for sharing -- Emily
A nurse comes to see my mom once a week. Can they actually assign a nurse to stay when she takes a similar turn? Interesting. I received the billing paperwork for one month, which I finally had the time to actually read this week. How can they charge nearly 10K for a month? We see a nurse once a week. They have dropped most of her meds, and as I stated previously I am paying for the aspirin. Do they pay for the bed and oxygen out of this sum? I don't remember seeing any bill from the supplier,or her other insurer but it has only been a few months.
I have used hospitals several times for my 82 year old mom with dimentia.They found things hospice did not.Several times i alerted hospice my mom has a urine infection.To no avail.Then severe leg pain.Finally I took her to the Er.They found blood clots in her legs and her white count was off the charts,from the urine infection.Yes she had to re register for hospice,but her clots did not spread thanks to the er doc who put in a filter.I would take her again in a NY minute.
I was blessed and relieved that my beloved grandmother lived out her days in a lovely facility. She also had dementia. Our government completely paid for her care, my only sorrow was that she was unable to move to the facility closer to my home. Even though they were sister companies the closer one would not accept her as a Medicare patient. Through this experience I realized that our government does care for our elderly in a responsible way. So sorry for the loss of your father. Blessings
@anonymous, the hospice social worker in the Midwest: you have simultaneously made me angry and broken my heart. I sincerely hope others read your comment. The RN 24/7 requirement is ridiculous. Thank you for letting us know Medicare revoked this requirement a year ago. If only my hospice provider were as well-informed.
This is a heartbreaking story. I agree with everyone's concern and their empathy for you and your Dad. My comments may not help you at this stage but perhaps they will help someone else. I am 24 years younger than my 101 year old husband, who has progressive memory loss and dementia. For the past 10 months he has been enrolled in Hospice. I have found that Hospice can provide emotional support, provide some medications and supplies, and have an excellent volunteer respite program that, at first, gave me time to do food shopping and errands, before my husband's condition worsened and, as volunteers, there had to be someone at home with him when they visited. Basically, Hospice does not provide Home Health Aides and they are mandatory when family members are caring for an aged person with dementia. There is no way that one or two family members can do this alone. The Hospice Social Worker found a good Home Health agency to help me. At first I hired an aide twice a week (4 hours a day) but it was not enough. The Hospice Social Worker suggested I apply for Veterans Services - my husband is a World War II Vet with a Purple Heart . It took months to get through but he now receives 2-1/2 hours Home health Care a day, paid for by the VA ,and I pay the same agency for an additional 1-1/2 hours a day, for a total of 4 hours a day 5 days a week. This is saving my life! In addition, the Geriatric doctor at the VA took my husband off all the so called sleeping medications which his doctor had put him on, which had given him severe mental disturbances and did not help him sleep. The doctor also took my husband off Ativan, a milder anti anxiety medication, because it causes imbalance if used more than a week, and contributes to falls. It took a couple of months to stabilize my husband but he is now sleeping better, on his own, and does not have the deep mental disturbances that had been caused by the medications. I was told there are no good medications without severe side effects to help people with dementia sleep. I could not have persevered without Hospice, but I think it is important to know that Hospice cannot provide the kind of care that an elderly person with dementia requires. If you want to keep your mate or parent at home, you must hire Health Aides to help. A conversation our nation and its doctors MUST have is the wisdom of providing a pacemaker to an elderly person. It is shocking to have someone you love nearly die when their heart rate suddenly drops, but it is better to let them die naturally, as nature intended, than to save an elderly person who has memory loss by implanting a pacemaker, or to give any elderly person who will advance into dementia, if not allowed to die naturally. We need to add no pacemaker to our own end of life instructions, along with do not resuscitate.
Dear Elizabeth, I'm a hospice social worker in the Midwest, and I'm so sorry to hear what you're going through with your hospice providers. Their information is dated. As of last year, Medicare dropped the requirement that a facility used for respite care have a 24/7 RN. They should be able to place your father in *any* facility they're contracted with. And if their contracted facilities don't have beds, they should be beating the bushes with other facilities asking for a "one time only" contract so they can get your father appropriate care. Again, I'm so sorry for all the stress you're experiencing. I want you to know that all hospices are not created equal. The place I work for would never leave a client or the client's family in such a lurch. You're in my thoughts as you deal with this headache. I hope things get better with your dad soon.
It was a reality check. Most people have no idea what goes on behind closed doors and what caregivers have to endure. I've been there and done that but not to the extreme of what these folks have had to endure. God Bless Them.
Elizabeth - just last week I lost my temper with a medical director who was offering an excuse why I had not received a call back from the doctor about my mother's pain. After I retold the facts as I saw them in a quite angry and confrontational way, the messages I had left were passed to the doctor who cleared his afternoong and spent over an hour answering my questions. While I may have over reacted and spoken in anger, I got the result I wanted. My questions were answered, mom's medicines adjusted, and another layer of RN nursing was brought in. While I'm sorry I lost my temper, I am not sorry at all that I stood up for my mom. I hope you are not sorry that you speak up for your dad. He cannot speak for himself. Watch that scene from Norma Rae when Sally Fields takes up for her mother in righteous anger. Things may happen, but they "don't happen to my momma!" We must speak up for those who cannot speak for themselves.
My dad was put into a nursing home in TN about 400 miles from where I live. After two weeks he became violent and they moved him to a geriatric psych ward. I had been in the process of finding a nursing home in IL to take him when this happened. After he went into the psych ward, I hit road block after road block trying to find a place here. Even Alzheimer units, who are supposed to be able to deal with the violence, would not take him. Finally the social worker told me to wait until they got him back to the nursing home he origianally was in to try. I finally got him into a home here in IL. They are great with him. We have him off all the meds that they had put him on in the psych ward. We tried to get him on hospice but at this point he doesn't qualify. All the diagnosis that he was given in TN seem to not be true now. My point is, keep pushing. Don't give up. We are our loved ones' voice at a time like this. The company may not be happy with us, but, they may have to face the same situation at some time in the future, and will find what it is like. It is hard when we have to see someone we love in pain and I know that during those times it is hard to remember that all things come in God's time. I found this to be true when I got the call that we found a nursing home in IL as I was on my way to TN to pack my mom's house. I was able to arrange medical transport for the next day and within 48 hours, my dad was home.
I totally understand. My folks are in a nursing home but all they do is sleep and mumble. There's no attempt to get them involved in anything. Plus, when my mother heard the word "hospice", I think she gave up. It is pitiful to watch people you love be absolutely tortured by this disease. I feel for you.
Oh how I feel for you. I was in a similar situation for some time a few years ago. My situation was not as bad as yours, but I was caring for a person who I loved (my grandpa) and who was in great pain. The burden became so great that nobody else in my family could shoulder it, they were so traumatized themselves by being around him. The medical system and its provisions were not helping. Initially I had problems getting him into a hospital bed at all, and caring for him at home was impossible. As it goes....I stepped in to take over his care, alone, towards the end. Here's what I hope you take from my story. I didn't realize it at the time, and I would do the same thing over again in the same sitaution (if I was able to)...but I really hurt myself in the process. The combination of the sleep deprivation, inevitable focus on depth, and exposure to the jarring images of his struggle and discomfort....those visions never went away. In the end, when I lived with him at palliative care in the hospital for the last week.....they discovered he had throat cancer as well, and said that he could choke on fluids (he hadn't been able to keep food down for a few weeks). The decision was made to withold all food and water until it forced him into cardiac arrest. I was given no input into the decision. My grandfather was angry about it, and kept asking me to give him water, the nurses only let me keep moistening his lips...I knew he was in agony, and he felt that we were effectively killing him. I just sat by his side the whole time. When he died, I just felt relief. I didn't think it was strange when the nightmares started, given what I'd been through. But I slowly became more not like myself over time. In th end, I was diagnosed with Post Traumatic Stress Disorder, which was believed to trigger Major Depression. I was sick and off my feet for a long long time. I wish I had recognized the symptoms and gotten help for mysellf in the intervening months between his death and my breakdown....maybe that would have helped me recover more quickly and get treatment before things were so bad. I lost my job. I lost my partner of 10 years. And I'm lucky to have gotten through it. Granted, my doc thought I had milder, undiagnosed depression that was forecully unleashed by my development of Post Traumatic Stress Disorder. Maybe (and I hope) depression isn't going to be an issue for you. The point here is this: I know you're already stressed out so much....and I hate to be the bearer of bad news....but your situation sounds very much like mine. I thought I was OK when it was over, and I was NOT. I just wanted to tell you my story, and make you realize that this won't be all over when your dad passes away.....then you need to start to heal, and take your self care SO seriously. I would proactively get counselling if I were you, partly to have an outside prespective on your condition. Realize now that you're probably have to embark on a long road to self-healing. Knowing what you're up against will give you a huge head start. Sending love and strength your way..... Jen
Elizabeth, From what I can gather you must live in a small town. As I live in a rural area as well, I can understand. There is not always an opportunity to obtain another hospice provider. And if there are limited facilities in your town, it does make it difficult to find room sometimes. I'm not making excuses for hospice, I'm just saying to some of the other people posting here that everyone's circumstances are different. We don't all live in large cities with an endless supply of doctors or hospitals or hospice providers. We have to do the best with what we have available to us. Some people need to back off. Elizabeth, you are doing the best you can for your dad under the circumstances. I hope the nurse from hospice is helping your dad calm down and helping you get the respite you need. I'm sending positive thoughts your way.
Dearest Sister ELIZABETH _____No need EVER to justify yourself or your choices here... This is NOT a competition to see who's right or "righter" and who's "wrong." This is SUPPORT - from EVERYBODY.... Support coming in myriad forms... And with ANY support group, the COMMON UNDERSTANDING always MUST be - "Take what you can use - and leave the rest." (Knowing that what you choose to "leave," may not be your answer at THIS time, it might come in handy sometime in the future...) As usual, I wish ONLY the very best for you and your family, and I sincerely hope things return to a "manageable" state for you as soon as possible... God knows I, too, have faced the impossible... As Always, Galowa xoxo _______ ©suzannemcable.08.01.2010
You're doing the right thing Elizabeth. Anyone telling you otherwise is just wrong. Your father is getting the care that he needs for these next few days which gives you a few days to light a match under Hospice's ass. Keep on keepin' on! Your Dad would be proud.
Elizabeth, I've been "negotiating" with a care provider group who my loved one is "stuck" with for over two years. Galowa has good imput as another medical professional and someone caring for a loved one. I am an Occupational Therapist caring for aloved one with advanced Multiple Sclerosis. When pushed I went to Department of Human Services who was "supposedly" overseeing the provider, ended up fileing appeals to an arbitration judge and went through arbitration and on my loved one's behalf won. The biggest asset I found was, my unwiillingness to give in or up using my "voice" and an ombudsman provided free of chaege as part of the grievence process who new the "system" and "provider" here and was totally client support focused. I found her and she may have been one of a kind, I don't know as the provider hasn't given me much of a problem since and we actually seem to communicate better though I will never have respect for them for having put my loved one and us through the stress and loss of peaceful living time which is all he has left. You are your Dad's caregiver and an adovocate for him and the silent others in your area who have no voice. Keep up the fight for peace for your Dad, you and your family. Take care, Jo aka madcitywoman wyzeyze@sbcglobal.net
IF I could "...get my hospice provider to live up to their end of the bargain... admitting Dad to the hospital via 911 would be moot..." _______ Dear Elizabeth - I share much of your history, have experience dealing with other people's mental illness, and am a caregiver for a parent terrified of hospitals. I do know the role hospice should play. But I also KNOW that effective use of our society's well-intentioned but highly imperfect medical system sometimes requires creativity. Perhaps, as an R.N. you're so much a PART of our medical system that it's difficult for you to see the need to TWEAK that system from time to time... I provide care for my 82 yo mother, who was/is mentally ill, has Alzheimer's Disease, and is difficult at best. I've cared for her (going on six years, without help from ANYBODY but my husband,) in my home, while raising two teenaged sons. During this time I have learned to be neither PATIENT nor TOLERANT toward UNPROFESSIONAL "professionals." I am ALWAYS reasonable, but I CANNOT WAIT for ANYONE to LEARN HOW TO DO THEIR JOB. If in your situation, I would have my mother admitted to the ER for extreme pain. I would provide the medical info necessary for my mother's safety, but I would insist they call in my mother's PERSONAL PHYSICIAN (who, in order to BECOME her "personal physician," will have learned to work WITH ME as a PARTNER…and have agreed to be "on call.") I would stay with my mother until her PERSONAL PHYSICIAN arrived, and we'd made mutually agreeable plans for my mother's immediate and short term care management. In the past, I have LITERALLY taken my mother and WALKED OUT of doctors' offices when not being well-served. I did the same at a hospital once, going immediately to a neighboring hospital. When something is not working, I VOTE WITH MY FEET. There is NO TIME in your father's life, or yours, for the Hospice group with which you are working to be operating on a learning curve!!! IF YOU DO NOTHING ELSE, FIND A NEW HOSPICE PROVIDER!!! In your anguish, in your exhaustion, your upset and grief - you may BELIEVE you are "thinking straight," but you KNOW, deep down, that caregivers shouldn't need to engage in P***ing matches, such as you describe, with their hospice providers… Like others here, I wish you all the best, and am sorry for your pain and your father's suffering. My primary intention, however, rather than to comfort, is to offer alternatives for you to consider… The SAME alternatives you might come up with yourself, if you had the mental/psychological energy to do so You are NOT a nurse here, My Sister. You are a distraught, grieving, exhausted DAUGHTER. So, FIND A NEW HOSPICE SERVICE… or, there is always 911. ; - ) With the greatest empathy, "practical love" and concern, I am - Galowa _____ ©suzannemcable.07.31.2010
I think you did the right thing Elizabeth! You have more patience than me given the circumstances you are dealing with and the length of time that you've been dealing with it. Don't let up on Hospice; continue to hold them accountable for doing what they are supposed to do! I'm just sorry that you are having to fight to get the help from Hospice that your dad and your family need. I guess it's your love for your dad that keep you and Lee going. You've got to be totally exhausted! You're still in my thoughts and prayers though. I'll check back in next Friday. Take care! Cathy
I understand where you're coming from, Galowa. There are other factors involved, of course, that readers are not aware of. Such as Dad's fervent wish never to see the inside of a hospital again. But to your point: if your loved one is on hospice care and you call 911, then your loved one must be discharged from hospice. After the crisis has passed, your loved one may be re-admitted to hospice. This is why, when a patient is admitted to hospice, the provider emphasizes to the family "never" to call 911 but only to call hospice -- because they are assuming total care of the patient. My point is that our hospice provider is failing in this role. They are failing to provide care that they are morally, ethically, and LEGALLY contracted to do. My viewpoint is that I should not HAVE to call 911 because hospice should be taking care of Dad and getting him into in-patient care under hospice. Their Medicare certification requires that they be able to do this. Personally, I do not want my dad going to a geriatric psych ward. As a nurse and the daughter of a person with a serious mental illness, I am all too familiar with psych wards. I do not want my dad there during what may be his last days on earth. Please remember there is never one perfect solution to any problem. We are managing the best we can under the circumstances into which we've been thrust and within the history and context of our lives and family relationships. My frustration lies in getting my hospice provider to live up to their end of the bargain. If they would just do that, then the question of admitting Dad to the hospital via 911 would be moot.
"I JUST WANT DAD'S SUFFERING TO END." When the "latest" compromise "solution" hospice offers up does not work, and/or you and your husband finally "hit the wall" - either from staying up all night OR from staying up all night and watching your father suffer - MAYBE you'll get the idea that calling 911 WILL HELP - BOTH YOU, and YOUR DAD! What HOSPICE cannot accomplish, HOSPITAL PERSONNEL can do in a FLASH. This, I know from personal experience. 911. Why everyone seems so afraid to use this option - especially when no other option is taking care of the problem... I just don't understand...? It WORKS 100% OF THE TIME. I do wish the very best of luck for you, and I sincerely hope things work out for all of you - sooner rather than later... Always, Galowa ©suzannemcable.07.31.2010