Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 My Dad's Dr. suggested hospice in mid-October and my Mom was floored. He did a little backpedaling for her to help her cope, but I could read between the lines. Dad was down to 128 pounds from being over 170 or 180 most of my life and the Dr. said that the weight loss qualified him, mostly to help Mom deal with this new idea. Anyway I spoke privately with the doc in the hall later and he DID say he did not expect Dad to be around in 6 months. I still thought he would last until Thanksgiving and most likely Christmas, but he died on November 4th - after having some very good days up until the end almost as I just posted a minute ago. You just can't tell what the journey may hold, but the hospice was a huge help in our case as Dad was still at home but was becoming more than Mom could handle. I was very concerned that she would get pulled down with him, in both the physical sense and also emotionally. I just can't say enough good things about hospice....best wishes for the smoothest " journey " possible through all this. > > > When will you know it is time for Hospice? The assisted living director talked with me about it the other day. She said not to think of this as a " death notice " , but as some comfort measures. I guess it would be more palliative care than actual hospice. > > The doctor told us Friday, that within a year if not sooner, she would probably be bed ridden and not know us. On one of her bad days I can see this, but then on a good day I don't and think she may out live us all. Her oxygen level at the doctor's office was in the 70s and she refuses to use oxygen at home. I know this can't be good for her organs and it increases her confusion. > > Any opinions about Hospice? > > Thanks > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2011 Report Share Posted March 30, 2011 Hi, As the commentators on TV say, " just to make sure there are no conflicts of interest, we're sponsored by...... " I've been a hospice bedside volunteer for 8 years and a university professor in communicative disorders for 30 (I'm retired now). With that qualification, let me try to address your questions and concerns. Remember, this is from a " volunteer's " point of view and it may not reflect what's behind many of the decisions I'm not privy too. 1. Admission Although there are various criteria for admission, the most important one is that the person has 6 months or less to live, and that prognosis is made by a physician. The hospice can use an outside physician (e.g., your mother's), or their own, or a combination of both. I believe the 6 month figure is related to either insurance or medicare regs, but I'd defer to others opinion on his. I'm not sure who told you 12 months, but I haven't heard that before as a criteria for admission. 2. Physicians I know I'll get in trouble with my physician friends, but I believe most physicians can be divided into those who understand palliative care (pain reduction) and end of life issues, and those who don't. Those who don't probably constitute 90% of the medical community. That's just a guess, but I think I'm giving them too much credit. It's not their fault really. In the past there was no training in med schools for end of life issues. From what I hear from new grad's, it now constitutes a lecture or two. So why the long expose of Doc's? I believe they can be the fulcrum point on which someone can gain admission or not. You may need to find a palliative care specialist (there are ones) that can say, " Based on my examination, this person has six months or less to live. " The focus here is on saying or writing the words. 3.Hospice Questions Here's my take on what the various questions could mean. Remember, I'm not a member of the medical community. Incontinenance-it's a signal of decline weight loss-as a disease progresses, it robs the body's ability to metabolize food, so while eating may be normal, weight loss still increases ability to sit unassisted-muscle tone decline can signal general decline 4. Hospice Nurse Reaching Out I think that the hospice nurse was sending you a very positive message. Essentially, " here's a way we can qualify her. " I would grab the opportunity. From your email I couldn't tell if this will be a hospice service in the home or in a stand alone facility. If it's in the home, you'll still need help caring for her. She'll have regular visits from a nurse, social worker, spiritual counselor, and if requested a volunteer. But all of those hours together won't total more than 8-10 hours a week. I would ask for a reevaluation asap. The contact from the nurse could be routine (contact everyone who doesn't qualify after a few months) or it could signal a decline in enrollment. Sometimes, for no reason, there can be huge shifts in enrollment in the best hospice services. I would let the nurse know how distressing the last assessment was and see what can be done in advance to minimize it. 5. When to Enroll Finally, what I've seen is that enrollment in hospice occurs much later then it should be. I often hear, " I didn't want her to think I've given up on her, so I waited until she was close to dying. " I think this is a big mistake. Enrollment in hospice is one of the best last gifts you can give to someone. The care and compassion received makes dying easier and creates better memories for caregivers. Hope this helps. Take Care, Stan > Can anyone tell me something about the " approval " process for getting hospice involved in care? About eight months ago my mother's cardiologist and neurologist referred her to hospice due to uncontrollable swings in blood pressure, and hospice came to evaluate, but felt that she was not within their 12 month life expectancy parameter for inclusion at that time. The process of evaluation was very stressful for all of us, and although I don't think Mom was fully aware of the implications, she doesn't like strangers in her space, asking her questions, asking her to move about, etc. Since that time hospice has been in touch to find out how things are going and they feel that re-evaluation would be appropriate now. However, it was difficult enough to go through the first time that I want to delay until I feel relatively certain that my mother is declining rapidly and irreversibly. She still has very good days where she can walk and talks lucidly interspersed amongst the days that she can't walk at all and only mutters or is uncommunicative. At this point she needs a full time caregiver to help her do everything, so the hospice care would be a big financial help, but when I ask her neurologist about this she punts and says she doesn't know much about the hospice process. I was surprised by some of the questions that hospice asked over the phone to evaluate her condition. Incontinence of the bowel was one (she is occasionally, but not always), weight loss, and the ability to sit unassisted on the side of the bed. This last I found very surprising as we hadn't focused on her falling backwards when left sitting for any length of time. Does anyone know what this is a sign of? The hospice rep also said that given Mom's various diagnoses (Lewy's Bodies, MSA, Parkinson's Plus) that they might find that she is declining more rapidly and thus could be covered earlier than another patient showing similar symptoms that has only been diagnosed with Alzheimers, for instance. Can anyone give me any feedback on all of this? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2011 Report Share Posted June 24, 2011 Judy, I'm glad you have the help of hospice at this time. It can be a wonderful thing for many families. Carefully check the comfort kit. Get the RN to go through it with you, if needed. Many kits in the US contain Haldol. This should not be given to someone with parkinsonism or LBD. Also, if you want to donate your mother's brain upon her death so that the diagnosis can be confirmed and that the tissue can be utilized for research, I encourage you to make those arrangements now, well in advance of death. Many families discuss this matter with leaders from their religion -- rabbis, priests, etc. -- to receive some guidance on the matter. Robin > > Dear friends - > > I met with hospice this morning and what a relief ! > We now have a team of people from > The nurse and doctor to a rabbi and everything in between - to support mom and us in this chapter of a trying journey! > > Today they will deliver a box with meds and other things that we may need in an emergency to keep mom comfortable! we are also reassured that now that mom is accepted to the hospice program we will never have to call 911 or go To an emergency room again! Instead we have a number to call for the hospice team 24:7 > > They are not proactive with any interventions and thankfully will let mom's body and spirit tale the lead! > > The most painful part is mom not recognizing me anymore- > > Will keep u all posted! > > God bless! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2011 Report Share Posted June 25, 2011 Dear Judy This is wonderful news. I am so pleased for you and your mum. God bless you both as you walk this next stage of your journey together. Elaine (61) from Sydney Australia Carer for husband Jim (82) who was offically diagnosed LBD Oct 2009, but symptoms began at least 5 years before. Jim died peacefully in hospital on 12th February 2011. <http://groups.yahoo.com/group/LBDcaregivers/message/98474;_ylc=X3oDMTJydXBx bTJzBF9TAzk3MzU5NzE1BGdycElkAzIxNDEzMTgEZ3Jwc3BJZAMxNzA1MDYyMjE1BG1zZ0lkAzk4 NDc0BHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEzMDg5ODk2MjU-> Hospice Posted by: " Judy " <mailto:jrstraussb@...?Subject=%20Re%3A%20Hospice> jrstraussb@... <http://profiles.yahoo.com/drjudy1010> drjudy1010 Fri Jun 24, 2011 10:30 am (PDT) Dear friends - I met with hospice this morning and what a relief ! We now have a team of people from The nurse and doctor to a rabbi and everything in between - to support mom and us in this chapter of a trying journey! Today they will deliver a box with meds and other things that we may need in an emergency to keep mom comfortable! we are also reassured that now that mom is accepted to the hospice program we will never have to call 911 or go To an emergency room again! Instead we have a number to call for the hospice team 24:7 They are not proactive with any interventions and thankfully will let mom's body and spirit tale the lead! The most painful part is mom not recognizing me anymore- Will keep u all posted! God bless! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2011 Report Share Posted June 25, 2011 Hi Elaine and friends I appreciate your kind words and support! Never a dull moment in the land of lewy body ! I was over at moms house this morning and had some resistance from one of the caregivers about hospice ! Many people including this part time caregiver who supplements care for mom to relieve the full time girl several days a week and e sry other weekend,thinks hospice is a program that hastens death! I had to sit with her & review the material left by the agency to reassure her about the palliative care protocol and educate her about what palliative care is about! Judy Office email: Jrstr@... Sent from my iPhone > > > Dear Judy > > This is wonderful news. I am so pleased for you and your mum. > > God bless you both as you walk this next stage of your journey together. > > Elaine (61) from Sydney Australia > > Carer for husband Jim (82) who was offically diagnosed LBD Oct 2009, but > symptoms began at least 5 years before. > > Jim died peacefully in hospital on 12th February 2011. > > <http://groups.yahoo.com/group/LBDcaregivers/message/98474;_ylc=X3oDMTJydXBx > bTJzBF9TAzk3MzU5NzE1BGdycElkAzIxNDEzMTgEZ3Jwc3BJZAMxNzA1MDYyMjE1BG1zZ0lkAzk4 > NDc0BHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEzMDg5ODk2MjU-> Hospice > > Posted by: " Judy " <mailto:jrstraussb@...?Subject=%20Re%3A%20Hospice> > jrstraussb@... <http://profiles.yahoo.com/drjudy1010> drjudy1010 > > Fri Jun 24, 2011 10:30 am (PDT) > > Dear friends - > > I met with hospice this morning and what a relief ! > We now have a team of people from > The nurse and doctor to a rabbi and everything in between - to support mom > and us in this chapter of a trying journey! > > Today they will deliver a box with meds and other things that we may need in > an emergency to keep mom comfortable! we are also reassured that now that > mom is accepted to the hospice program we will never have to call 911 or go > To an emergency room again! Instead we have a number to call for the hospice > team 24:7 > > They are not proactive with any interventions and thankfully will let mom's > body and spirit tale the lead! > > The most painful part is mom not recognizing me anymore- > > Will keep u all posted! > > God bless! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2011 Report Share Posted June 27, 2011 Will keep you in my prayers, Judy! Helene in NY > > Dear friends - > > I met with hospice this morning and what a relief ! > We now have a team of people from > The nurse and doctor to a rabbi and everything in between - to support mom and us in this chapter of a trying journey! > > Today they will deliver a box with meds and other things that we may need in an emergency to keep mom comfortable! we are also reassured that now that mom is accepted to the hospice program we will never have to call 911 or go To an emergency room again! Instead we have a number to call for the hospice team 24:7 > > They are not proactive with any interventions and thankfully will let mom's body and spirit tale the lead! > > The most painful part is mom not recognizing me anymore- > > Will keep u all posted! > > God bless! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2011 Report Share Posted June 27, 2011 Hi Helene and friends Helene, thank you for your prayers- so far so good - team is simply observing- nothing new to report Will keep you all posted. God bless! Judy Office email: Jrstr@... Sent from my iPhone > Will keep you in my prayers, Judy! > Helene in NY > > > > > > Dear friends - > > > > I met with hospice this morning and what a relief ! > > We now have a team of people from > > The nurse and doctor to a rabbi and everything in between - to support mom and us in this chapter of a trying journey! > > > > Today they will deliver a box with meds and other things that we may need in an emergency to keep mom comfortable! we are also reassured that now that mom is accepted to the hospice program we will never have to call 911 or go To an emergency room again! Instead we have a number to call for the hospice team 24:7 > > > > They are not proactive with any interventions and thankfully will let mom's body and spirit tale the lead! > > > > The most painful part is mom not recognizing me anymore- > > > > Will keep u all posted! > > > > God bless! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2011 Report Share Posted December 5, 2011 My mil has been declining steadily but in other ways not so much. For awhile it seemed parkinsons and lbd were in a neck and neck race to the end. Then LBD took over much more. She has trouble swallowing pureed food now and thickened water. It gets caught in her throat and there is a lot of coughing and retching to get it out. She thinks she's swallowing but somehow it's not working. We decided to get her signed up with hospice now and see if that would be any help. We signed her up Friday. They said they had local people and worked with local hospital and gave every indication of being available if and when needed. She had been on ampicillion for a uti for a week when we signed her up with the hospice on Friday. The antibiotic seemed to be working and she seemed well enough considering. Saturday though her urine smelled real strong and she was a little cranky. Sunday she was extremely cranky and complaining of a lot of pain in the areas that she has pain when she has a big uti. So I called the hospice to ask for some help - a ua collected and some antibiotics to tide her over. I was told to give her morphine for the pain (which I could not because I have no idea what her reaction to it will be and didn't want to try and see without someone else here). I decided she was in enough distress and her temp told me she had a raging uti, resistant obviously to the antibiotic. For us that means trying to get a UA done and also a shot of rocephin to knock it back while the oral meds reach peak levels. The hospice didn't have anyone available, it was Sunday. So I told them I would elect to take her to the ER where I knew they would do this. I got a lot of flack about not allowing nature to take it's course. I told them I had to do my best and to let this go seemed negligent to me. They said I would have to sign a revocation form and I said that's fine, I can see I really have no choice. The would not have someone out to the house until Monday or Tuesday. So we got my mil to the ER and I signed the revocation form and my mil had a very bad uti and they gave her a shot of receipin and sent us on our way. Pretty simple I thought. I also thought we asked this hospice provider all these questions before and were told yes this would all be fine. But It turns out it isn't so fine afterall. I'm going to sign her up with another hospice provider tomorrow who says they will not have these shortcomings and I hope it's true. I just can't see dealing with this 9-5 M-F only. This means my husband would NOT have the benefit of sitting down with a social worker and his mom to talk over some things (needed) and other supportive things. So I need to find a provider that is a little better on the hours of availability. Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 Dorothy, Pat is right, I think. You may not be ready for hospice. Your MIL may be, and may need hospice, but you also need to be ready. You may even need to actively pursue being ready, for your MIL's sake. Mom was not diagnosed with LBD, Parkinsonism, and Alzheimers until she was in about the middle stages. That was because neither she, nor we, her family, were ready to admit what was happening. Before her diagnosis, Mom had her end of life documents done and I was deeply involved in the process. She and I have talked extensively about what she did and didn't want. Mom has been given two very real opportunities to leave this life and (I believe) move on to the next level. Blood clots and close to a diabetic coma. But I panicked. I took her to the ER and she received extensive care. Now, she is in the late stages of her dementia - a place she feared and wanted with all her heart to avoid - and in a NH. We have since made a change and I don't make the medical decisions anymore. This was my choice. My sister is stronger and is more likely to let Mom rest when she gets the next opportunity. You might want to let someone else take over the medical decisions (if there is someone) you aren't ready to make. Mom's not on hospice yet. She's a tough old bird and may live for many years yet, though she is 89. Her mom lived to 94. I pray, though, that she won't. When Mom's mind is functioning, her life is torture for her. I don't know if I'll have the strength for hospice, when that opportunity presents itself, but I have been told by Mom's geriatrician and his CNP that they are there to help me through it. I get regular mental health counseling, including emotional help, on a regular basis. It really is helpful. You might want to try a couple of sessions to see if it helps. The point is, Dorothy, that you need to be ready for hospice and take advantage of the caregiver support they are supposed to provide. If you don't get it from the hospice provider, look for it through your own doctor, the clergy or local support group. If you can still talk with your MIL, find out what she wants. There are sometimes moments of clarity that allow this. And then try to accept it - with help. BTW, when Mom gets a UTI, it is very painful. In her case, it *is* comfort care to try to clear it up. But then, she is not on hospice yet. When that happens, I think we will need to talk with the staff about what frequent issues she has and whether to treat or not. I hope they won't be so rigid as your first agency. I do believe that, as family, we have some input into what is and isn't comfort care. It's so hard to get your head around letting your LO go. You are not to blame if you aren't able to do it yet. But do try to get to that place. I'm still working on it. Kathy > Dorothy, > It is my understanding that Hospice will not provide or prescribe > antibiotics ever. They only will provide pain control medicines or > psychiatric meds for COMFORT ONLY. They believe in letting nature take its > course when death is inevitable anyway. They do not consider UTI's > something worth treating, it is the means to the ultimate end- death. They > would not give antibiotics for pneumonia or ANY infection, as in their > estimation that would only be prolonging the suffering. It sounds to me > like you need to rethink using Hospice as their goal is only to ease the > DYING process. When you sign up for Hospice you are accepting the fact > that your LO is actively in the DYING process. > It sounds like you are not ready to admit that. > Good Luck, > Pat M. > 58, wife/caregiver of Bob, 75 dx PD 2003, LBD 2009 > > > > > ** > > > > > > My mil has been declining steadily but in other ways not so much. For > > awhile it seemed parkinsons and lbd were in a neck and neck race to the > > end. > > Then LBD took over much more. > > > > She has trouble swallowing pureed food now and thickened water. It gets > > caught in her throat and there is a lot of coughing and retching to get > it > > out. She thinks she's swallowing but somehow it's not working. We > > decided to get her signed up with hospice now and see if that would be > any > > help. We signed her up Friday. They said they had local people and worked > > with local hospital and gave every indication of being available if and > > when > > needed. > > > > She had been on ampicillion for a uti for a week when we signed her up > with > > the hospice on Friday. The antibiotic seemed to be working and she seemed > > well enough considering. Saturday though her urine smelled real strong > and > > she was a little cranky. Sunday she was extremely cranky and complaining > of > > a lot of pain in the areas that she has pain when she has a big uti. So I > > called the hospice to ask for some help - a ua collected and some > > antibiotics to tide her over. I was told to give her morphine for the > pain > > (which I could not because I have no idea what her reaction to it will be > > and didn't want to try and see without someone else here). I decided she > > was in enough distress and her temp told me she had a raging uti, > resistant > > obviously to the antibiotic. For us that means trying to get a UA done > and > > also a shot of rocephin to knock it back while the oral meds reach peak > > levels. The hospice didn't have anyone available, it was Sunday. So I > > told them I would elect to take her to the ER where I knew they would do > > this. I got a lot of flack about not allowing nature to take it's course. > > I told them I had to do my best and to let this go seemed negligent to > me. > > They said I would have to sign a revocation form and I said that's fine, > I > > can see I really have no choice. The would not have someone out to the > > house until Monday or Tuesday. > > > > So we got my mil to the ER and I signed the revocation form and my mil > had > > a > > very bad uti and they gave her a shot of receipin and sent us on our way. > > Pretty simple I thought. I also thought we asked this hospice provider > all > > these questions before and were told yes this would all be fine. But It > > turns out it isn't so fine afterall. I'm going to sign her up with > another > > hospice provider tomorrow who says they will not have these shortcomings > > and > > I hope it's true. I just can't see dealing with this 9-5 M-F only. This > > means my husband would NOT have the benefit of sitting down with a social > > worker and his mom to talk over some things (needed) and other supportive > > things. So I need to find a provider that is a little better on the hours > > of availability. > > > > Dorothy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 My father was with hospice the last 3 months of his life (he died 4 weeks ago). They provided all the meds that were needed for the condition for which he was approved--Parkinsons. If you want your LO to use an antibiotic, they don't care, but I'm not sure they would pay for it. They do not force you to let your LO die. Their goal is to make the process as comfortable and painless as possible. They provide all the things you need to make them comfortable: hospital bed, walker, potty chair, oxygen etc. It was amazing how mouch was provided and how wonderful their care was. Calling hospice was the smartest thing we did. They don't take over your LO's care. They help you do the things you decide you want done. If you want to prolong life, it's okay by them.   A few times we suspected my father was getting asparation pneumonia. The nurse, who came once a week, told us to watch and if it got worse, call her. They don't want the patient to suffer and having an infection makes them suffer. They can't prescribe an antibiotic because the ones who come to your home are nurses, not doctors. They will contact your doctor for you, however, and make recommedantions as to whether you should take your LO to the doctor or hospital.  Many patients are actually " graduated " from hospice care when their condition improves. Calling hospice is not giving up on your loved one. It's recognizing you need help and they will provide help IF your LO is getting worse and the condition they have is life threatening. They often provide help for over a year, depending on the situation.  One of the wonderful things they have is respite care for the care giver. If approved, you can request to let your LO stay at the hospice house for 1-5 days and you can get a break. Some people use it to take a vacation or to go out of town for weddings etc. The best thing about all of this is that it's FREE. We paid for nothing  Sorry to contradict, but I've just been in a Hospice situation and I would hate for anyone to hesitate calling them for fear they would force them to let their LO die with infection etc. They would not. They are very in tune with the wants and concerns of the family. The ones we dealt with were angels. If at any time you are not happy with their care, you can terminate their services. I would strongly suggest that anyone who is caring for someone who is declining rapidly to call Hospice for help. C  ________________________________ To: LBDcaregivers Sent: Tuesday, December 6, 2011 8:46 AM Subject: Re: Hospice Dorothy, It is my understanding that Hospice will not provide or prescribe antibiotics ever. They only will provide pain control medicines or psychiatric meds for COMFORT ONLY. They believe in letting nature take its course when death is inevitable anyway. They do not consider UTI's something worth treating, it is the means to the ultimate end- death. They would not give antibiotics for pneumonia or ANY infection, as in their estimation that would only be prolonging the suffering. It sounds to me like you need to rethink using Hospice as their goal is only to ease the DYING process. When you sign up for Hospice you are accepting the fact that your LO is actively in the DYING process. It sounds like you are not ready to admit that. Good Luck, Pat M. 58, wife/caregiver of Bob, 75 dx PD 2003, LBD 2009 > ** > > > My mil has been declining steadily but in other ways not so much. For > awhile it seemed parkinsons and lbd were in a neck and neck race to the > end. > Then LBD took over much more. > > She has trouble swallowing pureed food now and thickened water. It gets > caught in her throat and there is a lot of coughing and retching to get it > out. She thinks she's swallowing but somehow it's not working. We > decided to get her signed up with hospice now and see if that would be any > help. We signed her up Friday. They said they had local people and worked > with local hospital and gave every indication of being available if and > when > needed. > > She had been on ampicillion for a uti for a week when we signed her up with > the hospice on Friday. The antibiotic seemed to be working and she seemed > well enough considering. Saturday though her urine smelled real strong and > she was a little cranky. Sunday she was extremely cranky and complaining of > a lot of pain in the areas that she has pain when she has a big uti. So I > called the hospice to ask for some help - a ua collected and some > antibiotics to tide her over. I was told to give her morphine for the pain > (which I could not because I have no idea what her reaction to it will be > and didn't want to try and see without someone else here). I decided she > was in enough distress and her temp told me she had a raging uti, resistant > obviously to the antibiotic. For us that means trying to get a UA done and > also a shot of rocephin to knock it back while the oral meds reach peak > levels. The hospice didn't have anyone available, it was Sunday. So I > told them I would elect to take her to the ER where I knew they would do > this. I got a lot of flack about not allowing nature to take it's course. > I told them I had to do my best and to let this go seemed negligent to me. > They said I would have to sign a revocation form and I said that's fine, I > can see I really have no choice. The would not have someone out to the > house until Monday or Tuesday. > > So we got my mil to the ER and I signed the revocation form and my mil had > a > very bad uti and they gave her a shot of receipin and sent us on our way. > Pretty simple I thought. I also thought we asked this hospice provider all > these questions before and were told yes this would all be fine. But It > turns out it isn't so fine afterall. I'm going to sign her up with another > hospice provider tomorrow who says they will not have these shortcomings > and > I hope it's true. I just can't see dealing with this 9-5 M-F only. This > means my husband would NOT have the benefit of sitting down with a social > worker and his mom to talk over some things (needed) and other supportive > things. So I need to find a provider that is a little better on the hours > of availability. > > Dorothy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 Sounds like to need to find a different hospice provider.  C   ________________________________ To: LBDcaregivers Sent: Tuesday, December 6, 2011 2:59 AM Subject: Hospice  My mil has been declining steadily but in other ways not so much. For awhile it seemed parkinsons and lbd were in a neck and neck race to the end. Then LBD took over much more. She has trouble swallowing pureed food now and thickened water. It gets caught in her throat and there is a lot of coughing and retching to get it out. She thinks she's swallowing but somehow it's not working. We decided to get her signed up with hospice now and see if that would be any help. We signed her up Friday. They said they had local people and worked with local hospital and gave every indication of being available if and when needed. She had been on ampicillion for a uti for a week when we signed her up with the hospice on Friday. The antibiotic seemed to be working and she seemed well enough considering. Saturday though her urine smelled real strong and she was a little cranky. Sunday she was extremely cranky and complaining of a lot of pain in the areas that she has pain when she has a big uti. So I called the hospice to ask for some help - a ua collected and some antibiotics to tide her over. I was told to give her morphine for the pain (which I could not because I have no idea what her reaction to it will be and didn't want to try and see without someone else here). I decided she was in enough distress and her temp told me she had a raging uti, resistant obviously to the antibiotic. For us that means trying to get a UA done and also a shot of rocephin to knock it back while the oral meds reach peak levels. The hospice didn't have anyone available, it was Sunday. So I told them I would elect to take her to the ER where I knew they would do this. I got a lot of flack about not allowing nature to take it's course. I told them I had to do my best and to let this go seemed negligent to me. They said I would have to sign a revocation form and I said that's fine, I can see I really have no choice. The would not have someone out to the house until Monday or Tuesday. So we got my mil to the ER and I signed the revocation form and my mil had a very bad uti and they gave her a shot of receipin and sent us on our way. Pretty simple I thought. I also thought we asked this hospice provider all these questions before and were told yes this would all be fine. But It turns out it isn't so fine afterall. I'm going to sign her up with another hospice provider tomorrow who says they will not have these shortcomings and I hope it's true. I just can't see dealing with this 9-5 M-F only. This means my husband would NOT have the benefit of sitting down with a social worker and his mom to talk over some things (needed) and other supportive things. So I need to find a provider that is a little better on the hours of availability. Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 A footnote for my earlier post: I realize not all hospice providers are the same. The point I was trying to make is that it's okay to switch to another if you are not happy with the care or attitude of the one you're with. Ours was wonderful, but obviously, there some out there who are not.  Also, they will not (as a rule) approve your LO for the program unless they feel they are in the last few months of their life.  C  ________________________________ To: " LBDcaregivers " <LBDcaregivers > Sent: Tuesday, December 6, 2011 9:55 AM Subject: Re: Hospice  My father was with hospice the last 3 months of his life (he died 4 weeks ago). They provided all the meds that were needed for the condition for which he was approved--Parkinsons. If you want your LO to use an antibiotic, they don't care, but I'm not sure they would pay for it. They do not force you to let your LO die. Their goal is to make the process as comfortable and painless as possible. They provide all the things you need to make them comfortable: hospital bed, walker, potty chair, oxygen etc. It was amazing how mouch was provided and how wonderful their care was. Calling hospice was the smartest thing we did. They don't take over your LO's care. They help you do the things you decide you want done. If you want to prolong life, it's okay by them.   A few times we suspected my father was getting asparation pneumonia. The nurse, who came once a week, told us to watch and if it got worse, call her. They don't want the patient to suffer and having an infection makes them suffer. They can't prescribe an antibiotic because the ones who come to your home are nurses, not doctors. They will contact your doctor for you, however, and make recommedantions as to whether you should take your LO to the doctor or hospital.  Many patients are actually " graduated " from hospice care when their condition improves. Calling hospice is not giving up on your loved one. It's recognizing you need help and they will provide help IF your LO is getting worse and the condition they have is life threatening. They often provide help for over a year, depending on the situation.  One of the wonderful things they have is respite care for the care giver. If approved, you can request to let your LO stay at the hospice house for 1-5 days and you can get a break. Some people use it to take a vacation or to go out of town for weddings etc. The best thing about all of this is that it's FREE. We paid for nothing  Sorry to contradict, but I've just been in a Hospice situation and I would hate for anyone to hesitate calling them for fear they would force them to let their LO die with infection etc. They would not. They are very in tune with the wants and concerns of the family. The ones we dealt with were angels. If at any time you are not happy with their care, you can terminate their services. I would strongly suggest that anyone who is caring for someone who is declining rapidly to call Hospice for help. C  ________________________________ To: LBDcaregivers Sent: Tuesday, December 6, 2011 8:46 AM Subject: Re: Hospice Dorothy, It is my understanding that Hospice will not provide or prescribe antibiotics ever. They only will provide pain control medicines or psychiatric meds for COMFORT ONLY. They believe in letting nature take its course when death is inevitable anyway. They do not consider UTI's something worth treating, it is the means to the ultimate end- death. They would not give antibiotics for pneumonia or ANY infection, as in their estimation that would only be prolonging the suffering. It sounds to me like you need to rethink using Hospice as their goal is only to ease the DYING process. When you sign up for Hospice you are accepting the fact that your LO is actively in the DYING process. It sounds like you are not ready to admit that. Good Luck, Pat M. 58, wife/caregiver of Bob, 75 dx PD 2003, LBD 2009 > ** > > > My mil has been declining steadily but in other ways not so much. For > awhile it seemed parkinsons and lbd were in a neck and neck race to the > end. > Then LBD took over much more. > > She has trouble swallowing pureed food now and thickened water. It gets > caught in her throat and there is a lot of coughing and retching to get it > out. She thinks she's swallowing but somehow it's not working. We > decided to get her signed up with hospice now and see if that would be any > help. We signed her up Friday. They said they had local people and worked > with local hospital and gave every indication of being available if and > when > needed. > > She had been on ampicillion for a uti for a week when we signed her up with > the hospice on Friday. The antibiotic seemed to be working and she seemed > well enough considering. Saturday though her urine smelled real strong and > she was a little cranky. Sunday she was extremely cranky and complaining of > a lot of pain in the areas that she has pain when she has a big uti. So I > called the hospice to ask for some help - a ua collected and some > antibiotics to tide her over. I was told to give her morphine for the pain > (which I could not because I have no idea what her reaction to it will be > and didn't want to try and see without someone else here). I decided she > was in enough distress and her temp told me she had a raging uti, resistant > obviously to the antibiotic. For us that means trying to get a UA done and > also a shot of rocephin to knock it back while the oral meds reach peak > levels. The hospice didn't have anyone available, it was Sunday. So I > told them I would elect to take her to the ER where I knew they would do > this. I got a lot of flack about not allowing nature to take it's course. > I told them I had to do my best and to let this go seemed negligent to me. > They said I would have to sign a revocation form and I said that's fine, I > can see I really have no choice. The would not have someone out to the > house until Monday or Tuesday. > > So we got my mil to the ER and I signed the revocation form and my mil had > a > very bad uti and they gave her a shot of receipin and sent us on our way. > Pretty simple I thought. I also thought we asked this hospice provider all > these questions before and were told yes this would all be fine. But It > turns out it isn't so fine afterall. I'm going to sign her up with another > hospice provider tomorrow who says they will not have these shortcomings > and > I hope it's true. I just can't see dealing with this 9-5 M-F only. This > means my husband would NOT have the benefit of sitting down with a social > worker and his mom to talk over some things (needed) and other supportive > things. So I need to find a provider that is a little better on the hours > of availability. > > Dorothy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 There are differences in Hospice care companies, a lot have to do with differing state laws. My experience with Hospice was in Miami, FL in 1999 with my father in law. He was under the care of Vitas Hospice there and their policy was not to treat infections with antibiotics, just to give pain meds to keep the dying person comfortable. Pat M. > ** > > > Dorothy, > > Pat is right, I think. You may not be ready for hospice. Your MIL may be, > and may need hospice, but you also need to be ready. You may even need to > actively pursue being ready, for your MIL's sake. > > Mom was not diagnosed with LBD, Parkinsonism, and Alzheimers until she was > in about the middle stages. That was because neither she, nor we, her > family, were ready to admit what was happening. Before her diagnosis, Mom > had her end of life documents done and I was deeply involved in the > process. She and I have talked extensively about what she did and didn't > want. > > Mom has been given two very real opportunities to leave this life and (I > believe) move on to the next level. Blood clots and close to a diabetic > coma. But I panicked. I took her to the ER and she received extensive > care. Now, she is in the late stages of her dementia - a place she feared > and wanted with all her heart to avoid - and in a NH. We have since made a > change and I don't make the medical decisions anymore. This was my > choice. My sister is stronger and is more likely to let Mom rest when she > gets the next opportunity. You might want to let someone else take over > the medical decisions (if there is someone) you aren't ready to make. > > Mom's not on hospice yet. She's a tough old bird and may live for many > years yet, though she is 89. Her mom lived to 94. I pray, though, that > she won't. When Mom's mind is functioning, her life is torture for her. > I don't know if I'll have the strength for hospice, when that opportunity > presents itself, but I have been told by Mom's geriatrician and his CNP > that they are there to help me through it. > > I get regular mental health counseling, including emotional help, on a > regular basis. It really is helpful. You might want to try a couple of > sessions to see if it helps. > > The point is, Dorothy, that you need to be ready for hospice and take > advantage of the caregiver support they are supposed to provide. If you > don't get it from the hospice provider, look for it through your own > doctor, the clergy or local support group. If you can still talk with your > MIL, find out what she wants. There are sometimes moments of clarity that > allow this. And then try to accept it - with help. > > BTW, when Mom gets a UTI, it is very painful. In her case, it *is* comfort > care to try to clear it up. But then, she is not on hospice yet. When > that happens, I think we will need to talk with the staff about what > frequent issues she has and whether to treat or not. I hope they won't be > so rigid as your first agency. I do believe that, as family, we have some > input into what is and isn't comfort care. > > It's so hard to get your head around letting your LO go. You are not to > blame if you aren't able to do it yet. But do try to get to that place. > I'm still working on it. > > Kathy > > > On Tue, Dec 6, 2011 at 7:46 AM, Mayhew > wrote: > > > Dorothy, > > It is my understanding that Hospice will not provide or prescribe > > antibiotics ever. They only will provide pain control medicines or > > psychiatric meds for COMFORT ONLY. They believe in letting nature take > its > > course when death is inevitable anyway. They do not consider UTI's > > something worth treating, it is the means to the ultimate end- death. > They > > would not give antibiotics for pneumonia or ANY infection, as in their > > estimation that would only be prolonging the suffering. It sounds to me > > like you need to rethink using Hospice as their goal is only to ease the > > DYING process. When you sign up for Hospice you are accepting the fact > > that your LO is actively in the DYING process. > > It sounds like you are not ready to admit that. > > Good Luck, > > Pat M. > > 58, wife/caregiver of Bob, 75 dx PD 2003, LBD 2009 > > > > > > > > > ** > > > > > > > > > > My mil has been declining steadily but in other ways not so much. For > > > awhile it seemed parkinsons and lbd were in a neck and neck race to the > > > end. > > > Then LBD took over much more. > > > > > > She has trouble swallowing pureed food now and thickened water. It gets > > > caught in her throat and there is a lot of coughing and retching to get > > it > > > out. She thinks she's swallowing but somehow it's not working. We > > > decided to get her signed up with hospice now and see if that would be > > any > > > help. We signed her up Friday. They said they had local people and > worked > > > with local hospital and gave every indication of being available if and > > > when > > > needed. > > > > > > She had been on ampicillion for a uti for a week when we signed her up > > with > > > the hospice on Friday. The antibiotic seemed to be working and she > seemed > > > well enough considering. Saturday though her urine smelled real strong > > and > > > she was a little cranky. Sunday she was extremely cranky and > complaining > > of > > > a lot of pain in the areas that she has pain when she has a big uti. > So I > > > called the hospice to ask for some help - a ua collected and some > > > antibiotics to tide her over. I was told to give her morphine for the > > pain > > > (which I could not because I have no idea what her reaction to it will > be > > > and didn't want to try and see without someone else here). I decided > she > > > was in enough distress and her temp told me she had a raging uti, > > resistant > > > obviously to the antibiotic. For us that means trying to get a UA done > > and > > > also a shot of rocephin to knock it back while the oral meds reach peak > > > levels. The hospice didn't have anyone available, it was Sunday. So I > > > told them I would elect to take her to the ER where I knew they would > do > > > this. I got a lot of flack about not allowing nature to take it's > course. > > > I told them I had to do my best and to let this go seemed negligent to > > me. > > > They said I would have to sign a revocation form and I said that's > fine, > > I > > > can see I really have no choice. The would not have someone out to the > > > house until Monday or Tuesday. > > > > > > So we got my mil to the ER and I signed the revocation form and my mil > > had > > > a > > > very bad uti and they gave her a shot of receipin and sent us on our > way. > > > Pretty simple I thought. I also thought we asked this hospice provider > > all > > > these questions before and were told yes this would all be fine. But It > > > turns out it isn't so fine afterall. I'm going to sign her up with > > another > > > hospice provider tomorrow who says they will not have these > shortcomings > > > and > > > I hope it's true. I just can't see dealing with this 9-5 M-F only. This > > > means my husband would NOT have the benefit of sitting down with a > social > > > worker and his mom to talk over some things (needed) and other > supportive > > > things. So I need to find a provider that is a little better on the > hours > > > of availability. > > > > > > Dorothy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 , this is not true. All four hospice agencies we interviewed indicated that they do treat infections - including uti's an pneumonia - because they consider it part of comfort care. They do however want to avoid treating it in a hospital - and this is what we also wanted. Dorothy Re: Hospice Dorothy, It is my understanding that Hospice will not provide or prescribe antibiotics ever. They only will provide pain control medicines or psychiatric meds for COMFORT ONLY. They believe in letting nature take its course when death is inevitable anyway. They do not consider UTI's something worth treating, it is the means to the ultimate end- death. They would not give antibiotics for pneumonia or ANY infection, as in their estimation that would only be prolonging the suffering. It sounds to me like you need to rethink using Hospice as their goal is only to ease the DYING process. When you sign up for Hospice you are accepting the fact that your LO is actively in the DYING process. It sounds like you are not ready to admit that. Good Luck, Pat M. 58, wife/caregiver of Bob, 75 dx PD 2003, LBD 2009 > ** > > > My mil has been declining steadily but in other ways not so much. For > awhile it seemed parkinsons and lbd were in a neck and neck race to the > end. > Then LBD took over much more. > > She has trouble swallowing pureed food now and thickened water. It gets > caught in her throat and there is a lot of coughing and retching to get it > out. She thinks she's swallowing but somehow it's not working. We > decided to get her signed up with hospice now and see if that would be any > help. We signed her up Friday. They said they had local people and worked > with local hospital and gave every indication of being available if and > when > needed. > > She had been on ampicillion for a uti for a week when we signed her up with > the hospice on Friday. The antibiotic seemed to be working and she seemed > well enough considering. Saturday though her urine smelled real strong and > she was a little cranky. Sunday she was extremely cranky and complaining of > a lot of pain in the areas that she has pain when she has a big uti. So I > called the hospice to ask for some help - a ua collected and some > antibiotics to tide her over. I was told to give her morphine for the pain > (which I could not because I have no idea what her reaction to it will be > and didn't want to try and see without someone else here). I decided she > was in enough distress and her temp told me she had a raging uti, resistant > obviously to the antibiotic. For us that means trying to get a UA done and > also a shot of rocephin to knock it back while the oral meds reach peak > levels. The hospice didn't have anyone available, it was Sunday. So I > told them I would elect to take her to the ER where I knew they would do > this. I got a lot of flack about not allowing nature to take it's course. > I told them I had to do my best and to let this go seemed negligent to me. > They said I would have to sign a revocation form and I said that's fine, I > can see I really have no choice. The would not have someone out to the > house until Monday or Tuesday. > > So we got my mil to the ER and I signed the revocation form and my mil had > a > very bad uti and they gave her a shot of receipin and sent us on our way. > Pretty simple I thought. I also thought we asked this hospice provider all > these questions before and were told yes this would all be fine. But It > turns out it isn't so fine afterall. I'm going to sign her up with another > hospice provider tomorrow who says they will not have these shortcomings > and > I hope it's true. I just can't see dealing with this 9-5 M-F only. This > means my husband would NOT have the benefit of sitting down with a social > worker and his mom to talk over some things (needed) and other supportive > things. So I need to find a provider that is a little better on the hours > of availability. > > Dorothy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 Evidently they and Medicare have changed or have different policies since my experience with them in Miami FL 1999. Pat M. > ** > > > , this is not true. All four hospice agencies we interviewed > indicated that they do treat infections - including uti's an pneumonia - > because they consider it part of comfort care. They do however want to > avoid treating it in a hospital - and this is what we also wanted. > > Dorothy > > > Re: Hospice > > Dorothy, > It is my understanding that Hospice will not provide or prescribe > antibiotics ever. They only will provide pain control medicines or > psychiatric meds for COMFORT ONLY. They believe in letting nature take its > course when death is inevitable anyway. They do not consider UTI's > something worth treating, it is the means to the ultimate end- death. They > would not give antibiotics for pneumonia or ANY infection, as in their > estimation that would only be prolonging the suffering. It sounds to me > like you need to rethink using Hospice as their goal is only to ease the > DYING process. When you sign up for Hospice you are accepting the fact > that your LO is actively in the DYING process. > It sounds like you are not ready to admit that. > Good Luck, > Pat M. > 58, wife/caregiver of Bob, 75 dx PD 2003, LBD 2009 > > > > > ** > > > > > > > My mil has been declining steadily but in other ways not so much. For > > awhile it seemed parkinsons and lbd were in a neck and neck race to the > > end. > > Then LBD took over much more. > > > > She has trouble swallowing pureed food now and thickened water. It gets > > caught in her throat and there is a lot of coughing and retching to get > it > > out. She thinks she's swallowing but somehow it's not working. We > > decided to get her signed up with hospice now and see if that would be > any > > help. We signed her up Friday. They said they had local people and worked > > with local hospital and gave every indication of being available if and > > when > > needed. > > > > She had been on ampicillion for a uti for a week when we signed her up > with > > the hospice on Friday. The antibiotic seemed to be working and she seemed > > well enough considering. Saturday though her urine smelled real strong > and > > she was a little cranky. Sunday she was extremely cranky and complaining > of > > a lot of pain in the areas that she has pain when she has a big uti. So I > > called the hospice to ask for some help - a ua collected and some > > antibiotics to tide her over. I was told to give her morphine for the > pain > > (which I could not because I have no idea what her reaction to it will be > > and didn't want to try and see without someone else here). I decided she > > was in enough distress and her temp told me she had a raging uti, > resistant > > obviously to the antibiotic. For us that means trying to get a UA done > and > > also a shot of rocephin to knock it back while the oral meds reach peak > > levels. The hospice didn't have anyone available, it was Sunday. So I > > told them I would elect to take her to the ER where I knew they would do > > this. I got a lot of flack about not allowing nature to take it's course. > > I told them I had to do my best and to let this go seemed negligent to > me. > > They said I would have to sign a revocation form and I said that's fine, > I > > can see I really have no choice. The would not have someone out to the > > house until Monday or Tuesday. > > > > So we got my mil to the ER and I signed the revocation form and my mil > had > > a > > very bad uti and they gave her a shot of receipin and sent us on our way. > > Pretty simple I thought. I also thought we asked this hospice provider > all > > these questions before and were told yes this would all be fine. But It > > turns out it isn't so fine afterall. I'm going to sign her up with > another > > hospice provider tomorrow who says they will not have these shortcomings > > and > > I hope it's true. I just can't see dealing with this 9-5 M-F only. This > > means my husband would NOT have the benefit of sitting down with a social > > worker and his mom to talk over some things (needed) and other supportive > > things. So I need to find a provider that is a little better on the hours > > of availability. > > > > Dorothy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2011 Report Share Posted December 6, 2011 There are others here who have their loved ones in hospice that also have uti's treated. Reading their posts here is how I came to understand this was a reasonable thing to explore with the various services here. Dorothy Re: Hospice > > Dorothy, > It is my understanding that Hospice will not provide or prescribe > antibiotics ever. They only will provide pain control medicines or > psychiatric meds for COMFORT ONLY. They believe in letting nature take its > course when death is inevitable anyway. They do not consider UTI's > something worth treating, it is the means to the ultimate end- death. They > would not give antibiotics for pneumonia or ANY infection, as in their > estimation that would only be prolonging the suffering. It sounds to me > like you need to rethink using Hospice as their goal is only to ease the > DYING process. When you sign up for Hospice you are accepting the fact > that your LO is actively in the DYING process. > It sounds like you are not ready to admit that. > Good Luck, > Pat M. > 58, wife/caregiver of Bob, 75 dx PD 2003, LBD 2009 > > > > > ** > > > > > > > My mil has been declining steadily but in other ways not so much. For > > awhile it seemed parkinsons and lbd were in a neck and neck race to the > > end. > > Then LBD took over much more. > > > > She has trouble swallowing pureed food now and thickened water. It gets > > caught in her throat and there is a lot of coughing and retching to get > it > > out. She thinks she's swallowing but somehow it's not working. We > > decided to get her signed up with hospice now and see if that would be > any > > help. We signed her up Friday. They said they had local people and worked > > with local hospital and gave every indication of being available if and > > when > > needed. > > > > She had been on ampicillion for a uti for a week when we signed her up > with > > the hospice on Friday. The antibiotic seemed to be working and she seemed > > well enough considering. Saturday though her urine smelled real strong > and > > she was a little cranky. Sunday she was extremely cranky and complaining > of > > a lot of pain in the areas that she has pain when she has a big uti. So I > > called the hospice to ask for some help - a ua collected and some > > antibiotics to tide her over. I was told to give her morphine for the > pain > > (which I could not because I have no idea what her reaction to it will be > > and didn't want to try and see without someone else here). I decided she > > was in enough distress and her temp told me she had a raging uti, > resistant > > obviously to the antibiotic. For us that means trying to get a UA done > and > > also a shot of rocephin to knock it back while the oral meds reach peak > > levels. The hospice didn't have anyone available, it was Sunday. So I > > told them I would elect to take her to the ER where I knew they would do > > this. I got a lot of flack about not allowing nature to take it's course. > > I told them I had to do my best and to let this go seemed negligent to > me. > > They said I would have to sign a revocation form and I said that's fine, > I > > can see I really have no choice. The would not have someone out to the > > house until Monday or Tuesday. > > > > So we got my mil to the ER and I signed the revocation form and my mil > had > > a > > very bad uti and they gave her a shot of receipin and sent us on our way. > > Pretty simple I thought. I also thought we asked this hospice provider > all > > these questions before and were told yes this would all be fine. But It > > turns out it isn't so fine afterall. I'm going to sign her up with > another > > hospice provider tomorrow who says they will not have these shortcomings > > and > > I hope it's true. I just can't see dealing with this 9-5 M-F only. This > > means my husband would NOT have the benefit of sitting down with a social > > worker and his mom to talk over some things (needed) and other supportive > > things. So I need to find a provider that is a little better on the hours > > of availability. > > > > Dorothy > > > > Quote Link to comment Share on other sites More sharing options...
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