hospice

Parent Cafe
1

<p>I would like to open up a discussion about hospice to teach and learn about the subject from the cc community. </p>

<p>I have been working with a medical hospice for several years and the experience has changed my outlook in a positive way. The work with so many people who are my age or younger has helped me realize that every day is a gift. That’s not to say that I don’t still get on my pity pot occasionally and definitely still eat too much junk food but I “don’t sweat the small stuff” nearly as much as I used to.</p>

<p>I read recently that no matter how hard we try we “can’t keep the sun from setting” and in this world death is inevitable. I polled a random group of people recently and asked them “if you were told that you were at the end of your life, how much time would you have?” and I received answers everywhere from 2 years, 2 months, 2 days, to “the minute the good lord calls me home”.</p>

<p>Our terminal illness may take weeks or years to unfold and patients and caregivers get tired. It is exhausting to be a 24/7 caregiver and many people can not afford help. It is not uncommon to hear a patient or caregiver say “I want this to be over!”. Is this patient or caregiver suggesting that one be “rushed to the cemetary” or are they expressing feelings of fear/anxiety/guilt/fatigue over the dying process? There are lots of different types of pain both physical and psychosocial/spiritual and people have different ways of communicating their pain. I believe there is a difference between “giving up” and “letting go”.</p>

<p>I also read recently that “we die the way we live” and I see this every day in hospice. People who approach life’s stresses in an easy going manner generally are accepting of whatever nurse, cna, volunteer, bed, drug arrives for their aide while people who are controlling and bossy tend to complain about the staff, the quickness of return calls, the bed is too small, the mattress not right etc etc. Families that had good communication prior to illness are able to work together and communicate during illness while families that were at battle before battle still. Now certainly hospice is staffed with human beings so we do make mistakes and sometimes don’t return a call soon enough or send a faulty piece of equipment or fail to meet someone’s needs adequately but hopefully this does not happen often.</p>

<p>For the most part I have learned that people live their lives as fully as possible up to the point when they become comatose and are no longer able to eat/drink. I know of someone who acquired a piece of art two weeks before death and was so excited about the placement of this acquisition on a wall that he could see from his hospital bed. After entering hospice people still go to the theatre, parties, and family celebrations and they still laugh, cry, worry, vote and do all the things that we are all doing right now, only they know that the number of days left in this world is limited but then again that is true for all of us.</p>

<p>I would love to hear about other’s experiences with hospice both good and bad.</p>

2

<p>busyparent - I came to CC now to see if anyone had posted about Charlton Heston dying today. He’s had Alzheimer’s for several years; we’ve had many, many dementia patients on our hospice service, and I suspect he had hospice, too.</p>

<p>I guess from my perspective, the question is, when you’ve been given a terminal diagnosis, why would you not do hospice? What alternatives are there? There’s home health care, but even those agencies will cede to hospice at the end. I’ve worked in hospitals as a chaplain, also, and I’ve seen how hospitalized patients die without the benefit of being on a hospice service. I urge anyone to avoid this at all costs. And yes, while the people from hospice aren’t perfect - for we are all working with so many unknowns at all hours of the day and night (in fact I’m on call this weekend) - I can’t even imagine a family/nursing home/hospital trying to care for someone who has been terminally diagnosed, without the support of hospice. </p>

<p>We had hospice with both my grandmother, father and mother. They took place in a nursing home, residential home and hospital, respectively. I wasn’t working for hospice when my grandmother and father died, but I was when my mother did. Out of all the things that might have surprised me the most about working for hospice is the overwhelming amount of education that needs to be done. I am shocked by the number of people I run across in our agency (patients/families) who really have no idea of what hospice does. They know it has something to do with end of life, but beyond that, they are clueless. Those who have utilized hospice services before and have had good experiences are our best teachers.</p>

<p>While I was in seminary, I knew chaplaincy was something I felt drawn toward. When I was doing my first unit of clinical pastoral education, I became enamored with hospice, as one of my peers was also a hospice chaplain (an ordained rabbi). His stories, his passion, his selflessness, his love for making a difference opened my heart to consider hospice chaplaincy. What still amazes me is that ten years ago, I couldn’t even talk about death, dying or any issue related to end-of-life. When my parents wanted to talk about wills and such, I avoided it like the plague. And here I am now, feeling like I want to take on the job of telling the world about it.</p>

<p>For some people, hospice won’t be an option. Their parent/spouse/loved one, will die quickly from a heart attack, stroke, car accident or something similar. And those kinds of deaths have their own positives and negatives, as a death under hospice care does.</p>

<p>Let me state very firmly, if someone is not happy with the care they are receiving from a hospice agency, they need to communicate that to that hospice’s complaint line (it is law that upon being admitted to hospice, the family must be given that number). If it is not resolved, please changes hospice agencies. Our agency gotten many patients who were unhappy with other agencies, and we’ve lost some patients to other agencies. Every hospice is not working at 100% 365 days a year, and sometimes they’re in transition. So transfer to another agency and get the support you deserve.</p>

<p>I also would like to point out that 95% of what hospices do are regulated by medicare, and most private insurance companies follow medicare guidelines as far as what they will cover. So find out what medicare provides under the hospice benefit, and know that that does not change from agency to agency. So if you think you’re not getting enough time with the hospice staff (you think they should be there every day when the patient is stable), it may not be different with another agency because we’re all accountable to medicare.</p>

<p>I was lucky… we had wonderful care for my family, when needed. We’ve also experienced the loss of my 25-year old nephew in a car accident last summer. They are totally different experiences for obvious reasons. And how everyone experiences the death of a loved one is dependent on their own context of relationship with that person and prior experiences with death. I respect those who feel uncomfortable with the idea of death, but I suspect that most adults on this board have had some experience with it, at least with their parents or in-laws. I, too, would love to hear both the good and bad experiences.</p>

<p>edited: I just read the first story of Heston’s death, and while I vehemently disagreed with his stance on gun control, I have to say he approached the end of his life with an unforgettable attitude: “I must reconcile courage and surrender in equal measure.”</p>

3

<p>As I have posted before here, my dad, an alzheimer’s patient living in a residential facility, has been placed in hospice care. I am so grateful for this because I am the only one who ever goes to see him and, shamefully for me, I do not go often enough. My dad does not know me any more and cannot speak any more. He is very lethargic and fairly unresponsive most of the time, yet he still enjoys food, so I just take him a milkshake and help him eat it. The visits are pretty tough, though, because he is so very impaired now and I hate that it becomes more and more difficult to remember him as he was all of my life: the most intelligent, perceptive and irrascible (sorry, I am pretty sure I spelled that wrong, but it fits my dad!) person I have ever known.</p>

<p>Any way, the hospice staff stays in touch with me and there are not only clinical staffers but volunteers who go to visit him. It helps a bit with the guilt I feel for not going enough. He is getting wonderful palliative care and I never knew this sort of thing was available for alzheimer’s patients. </p>

<p>RE the death of Heston: Early in my dad’s diagnosis, when he was still very verbal (though he was already moderately to severely impaired) and we spent much of every day together, the announcement was made about the fact that Charleton Heston had been diagnosed with alzheimer’s and there were many, many news stories about the disease. After listening to one of these news stories my dad, a brilliant retired clinical psychologist, said to me: “I think I might have alzheimer’s”. We had been to multiple docs by then and he had been in and out of various treatment facillities, etc. But this is when, at least for a moment, he KNEW and expressed to me that he knew what lay ahead for him. It broke my heart. Thankfully, at least now, he has peaceful days because he does not “know” what is going on so much any more.</p>

<p>Lord, I hate this diesease!</p>

4

<p>My mom died of Alzheimer’s 8 years ago. Among the very few bright spots and comforts that came to her, and the rest of us, during the long and harrowing years that led up to her death, hospice was one of the brightest and best. </p>

<p>Every single person connected with that particular hospice was kind, fully engaged, and helpful. The compassion they showed for my mom, for my dad (before he died - of a stroke most likely brought on by the unremitting stress and sadness of caring for my mom), and for the rest of us was unstinting, and the respect and quiet good cheer they never failed to bring to my mom was unbelievably moving and wonderful to see. </p>

<p>At the very end stage, they were crucial in providing palliative care, and in helping my brother and me keep the nursing home staff from interfering (in well meaning ways, but still) with her comfortable passage out of life. </p>

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<p>Churchmusicmom, I’m glad you have access to hospice help. Hugs and the most heartfelt sympathy to you. One thing I can promise you: Time will absolutely soften the memory of this stage of your dad’s life, and will bring you back the memories of the wonderful father you’re describing. </p>

<p>My mom, too, was brilliant, and was also blisteringly funny. I don’t know if this happens to you, but I have a hugely angry reaction to the continual parade of articles that appear, touting “rigorous education” and “keeping your mind sharp” as ways of fending off Alzheimer’s and other dementias. It would have been hard to have a more rigorous education, or to stay more engaged, than my mom did. She was teaching gross anatomy in medical school even after her diagnosis (don’t worry, folks - that part of her thinking went chugging right along for a good while).</p>

5

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<p>I couldn’t agree with you more.</p>

<p>I suspect that the people who write these articles are confusing a correlation with a causal relationship. It may be true that people who stay involved in mentally demanding activities are less likely to develop Alzheimer’s disease within the next few years. However, I suspect that this is because people who are developing the early stages of the problem that will eventually be diagnosed as Alzheimer’s begin to find mentally demanding activities to be more difficult than they used to be and choose other activities instead.</p>

6

<p>While my mom was not an Alzheimer’s patient, but she did have a terminal illness and my family utilized the services of a local hospice a couple of year’s ago. </p>

<p>I cannot tell you how much my family appreciated the hospice workers and the care given to my mom and all of us. I honestly think hospice did more for the family than for my mom. My mom was dying, but was not ready to die, so it was a very long drawn out process. The hospice staff really helped us deal w/the situation and supported us for the duration. </p>

<p>I am a firm believer in the hospice mission, and lifetime supporter of their efforts.</p>

7

<p>RE reactions to touting “rigorous education” to “ward off” the onset of Alzheimers’:</p>

<p>As I said, my dad was a clinical psychologist and I believe he knew well, at some level, what was happening to him. He did a fabulous job of hiding it from us for many years before a sudden medical crisis exacerbated his dementia dramatically and horribly. If anyone could have fought off this beast, it was my dad. </p>

<p>I will share one very touching moment. My daughter, who is in her junior year at Barnard, and I went to visit dad about a year ago. He was pretty much unresponsive and did not recognize us. I just talked to him, though, and in the course of my monologue, told him that she was a neuroscience major. He just started smiling and then laughing and looked right at her. We both wept. What a blessing, though, to know that those mental clouds parted long enough to let that ray of sunshine into his life. I will always cherish that…</p>

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<p>busyparent - I think you have been involved in hospice work much longer than I have (four years, and mostly part-time). Can you see any trends in hospice care? Anything different now than it was when you first started? Anything on the horizon that might change? I have to think that with the ever changing state of health care, the hospice industry is not immune to its own transitions, but I’m just too new on the scene to see it. I kind of know what my own agency has had to struggle with, but what about industry wide?</p>

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<p>My mother died two years ago today, and the last three months of her life were spent receiving home hospice care. I couldn’t be with her all the time, although I traveled to see her as often as possible. The hospice nurse and caregivers were a godsend. The nurse in particular called me regularly, not only to tell me how my mother was doing, but also to ask how <em>I</em> (as an only child, and actually the only relative my mother had left) was doing. My mother’s last days were pain-free (she had cancer) and I can’t say enough about all the caring people, from the administrators down to the aides, who helped her, and me, through that difficult time.</p>

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<p>I am taking a beat to recover from churchmusicmom’s posting above, as it stirred memories of how my Dad, through Alzheimers, somehow recognized a few big events, such as college graduations and news of new babies, on some days but not others. We never know what might penetrate, which is why the maddening repetition of data might, in fact, pierce through the clouds on any given day. Thank you for your fine posting, and I’m so glad the “Neuroscience” news got through!</p>

<p>But the very fact that we are chiming in with positive conversation about end-of-life visiting is a testimony to Hospice. In my experience, as clergy wife, it’s the Hospice workers who set the emotional climate for the visiting family to conduct themselves AS the family they are. Aside from tending to the physical care, quietly, they interpret patients to families. Anyone who does anything daily is more of an expert on it than we who encounter such a few times in our lifetimes. </p>

<p>I’m recalling now the family of a young man who was born with debilitating mental limitations. His hospice team, encountering a man in his early 20’s, worked around him in an institution where he’d lived for a number of years. They were able to pool information with his actual family, such that they functioned as two families. At his funeral, they communicated as if one was the maternal set of parents, the other the paternal set. Two extended families. And our congregants were emphatic that they believe his life was lengthened by their care, and certainly their peace was deepened, by the hospice team, all of whom attended the funeral and many stops in during the “shiva” home mourning days, all on their own time.</p>

<p>It does not surprise me to read obituaries and see how often the families ask for donations to a Hospice organization.</p>

<p>One of the things I notice Hospice does is take on enough that it frees the actual family to be a family, so that their time together with their loved one is about simple communications and not so much stress over whether they’re caring for them “the right way.”</p>

<p>To me, hospice seems to work like a support system for families who are able to take support from others. As for the person in the center of all this, I just think about Sarah (the Biblical Sarah), who “lived all the days of her life.” That is mentioned specifically as part of who she was. She must have been the kind of woman who experienced and made the most of each day. After all, doesn’t everyone “live all the days of a life”? Well, we do and we don’t. It seems to me that Hospice lets everyone, from the terminally ill patient to the surrounding family, live those final days more fully, as well. If all we have is time, then the Hospice teams seem to make the time count for so much more.</p>

11

<p>I have been the primary caregiver of 4 parents, three of which have passed away (both in-laws and my father, a year ago Christmas). My father-in-law should have had hospice. We knew nothing about it; the hospital where he was operated on for the brain tumors told us nothing about it. Thankfully for him and my husband, he did not linger. We had hospice for my mother-in-law, Parkinson’s, and my father, renal cancer. We were with each parent as they took their last breaths … and I cannot say enough wonderful things about the hospice/vitas group we used. My mother is stage 6/7 alzhiemer’s, and she’s been living with us the past couple of years. (She moved into our home with Dad several months before he passed away). On 4/14 … I will be moving her to a memory care unit ALF because it’s time … and, frankly, I’m exhausted after having been the family caregiver for the past six years. We will most likely have her evaluated at her move by the facility physician, with an eye toward hospice. They provide that extra layer of eyes and care that’s so very helpful. Thankfully, we’ve heard through the facility that she’s probably eligible as the rules for dementia and hospice have changed and become more flexible in our state. The dignity that hospice helps preserve and the compassion for the patient and the family are truly a Godsend.</p>

<p>zebes</p>

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<p>Hospice= angels on earth in my opinion and experience.</p>

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<p>I have passed through the portals of having my father die in hospice and my mother die in my home with the help of doctors and a caretaker helper within the past year and a half. It’s no fun. The hospice experience for my dad and his family lasted 5 days. He said his goodbyes and was out of here. My mom lingered after his death and finally I brought her to live with me. We each have to do what we have to do. There was dignity in both experiences for my parents and for the family. I mention portals because with this sort of experience you are never the same again.</p>

14

<p>We had hospice when my mother died after battling lung cancer. Absolutely one of the finest organizations we’ve ever worked with. My mother insisted on dying at home. Hospice enabled her to do that with dignity and all her children at her side. If you are looking for a place to donate your time or money, I can’t think of a more deserving organization.</p>

15

<p>I moved to the city so I could help take care of my grandparents, because my mother was not inclined that way although she was an only child.</p>

<p>My grandfather went first- he had colon cancer & I wanted to care for him at his house- with the support of neighbors and visiting nurses, but that freaked out my grandmother- who " thought it would be too much trouble" & he died in the hospital.</p>

<p>( My own father died suddenly from an accident in his early 40’s)</p>

<p>My grandmother had heart problems and was having small strokes at a time when I was overwhelmed with the care of my 2nd child, who had very complex needs. I was existing on about 3 or 4 hours of sleep everyday for years. Yes I did go crazy.
Because my mother had total charge of all of her mothers papers, she was placed into a nursing home a distance & I was told that she wasn’t cognizant. When I managed to go visit her I was horrified to realize that, that wasn’t true.
I tried to visit her more often after that, because she wouldn’t eat and I fed her, but it was very difficult and she didn’t last long.</p>

<p>I have no idea of the state of my mothers health- I know she has many illnesses, and she goes to practitioners 3 or so times a week, but she could live for years in this state- she isn’t that old, but her brain is pretty much gone- if it was ever even there-really an interesting case if you weren’t her child.</p>

<p>( I have two siblings that live closer to mother- and who have control over her estate- I disagree with their decisions, but while mother supposedly agrees with me, she gave them power long ago & they don’t let her express herself)</p>

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<p>My sister-in-law died last month, from cancer. The hospice people went to the hospital when she was rushed in, though my brother took her home, where she died peacefully the next day. He does not have family nearby (a plane ride for all of us), but my brother says the hospice people continue to call, and visit him! I would like to thank all people involved in hospice. You are angels on earth.</p>

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<p>I have two relatives that were hospice patients when they died from cancer; no complaints about the hospice care itself, but both absolutely did not want to stop cancer treatment and entered hospice kicking and screaming, so that was a problem…</p>

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<p>I have only had a fleeting acquaintance with Hospice, but I can tell you why it was fleeting… my mother, who had severe emphysema and was on full-time oxygen for seven and a half years (five years longer than the lung specialist told us she would survive), thought the local hospice–run by her assisted living facility–was prone to “helping people along.” </p>

<p>Hard to tell if there was any truth to that notion (I personally doubt it), since she commonly thought the worst of people–but she did die only 3 days after she agreed to go into hospice, within twenty four hours of completing the paperwork. Of course, she went in because she could no longer manage for herself at all and had a serious infection to boot, but I’m quite sure her belief that they would kill her didn’t help her to recover.</p>

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<p>muffy - just curious. If they did not want to stop cancer treatments, then why did they agree to enter hospice? If they were strong enough to enter kicking and screaming, then were they not able to make the decision themselves?</p>

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<p>teriwtt - One was persuaded by doctor to sign the DNR and enter hospice but did not want to; the other one really put up a fight and threatened to sue the doctors if they wouldn’t keep treating her. I was told by the priest at the hospice facility (who was actually VERY nice) that I needed to help my relative have a “good death experience.” </p>

<p>One of my relatives actually had more than enough $$$ to pay out of pocket for doctors to treat her even if they thought it was futile and insurance wouldn’t pay, but I was advised that doctors do not have to treat patients if treatment in their opinion is unlikely to do anything. I guess that makes sense?</p>