Took my husband to a VA doctor today for a physical. After taking a case history and examination of my husband this doctor out of the blue says....'YOU KNOW YOUR HUSBAND QUALIFIES FOR HOSPICE CARE...DO YOU WANT ME TO CONTACT THEM?......Wow...it was like someone threw a bucket of cold water in my face. I was dumb struck. I didn't want to question what he meant or how my husband qualifies because I didn't want to upset my husband with the answer the doctor might give when I didn't have a clue what the answer would be. Needless to say, when we left his office I was a basket case. I had explained to the doctor that my husband was very functional during the office visit. My answer to the doctor, which was kind off the top of my head was: " That would be good maybe someone could come in once a week or whatever you think is necessary"
Does anyone have any idea why the doctor would say that to me....do you think he knows something I don't know??? I am still in shock.
It is a shock the first time you hear it, the first time I was told that, Lynn was still functional as well, and yes was a huge shock!! ((big hugs of understanding)) If your dear husband is still very functional it seems to me it is a bit early to be calling them in, but they offer a wonderful support system. Alzheimer's patients qualify much sooner for hospice than most other illnesses, keep that in mind. It isn't so much that your doctor believes he is in end stage, but more, maybe you could use the many services they offer. Deep breaths ((Judith)), maybe to give you some peace of mind you could call his doctor and ask why he feels hospice would be a good option for you.
Thanks Nikki...with all you have on your plate right now it is so kind of you to respond. I am going to have them come and see what they offer. I was just so shocked because having the doctor say that was the last thing I thought I would hear at this stage of the journey.
JudithKB--it will be well worth your time. I had questions and needed answers. Last January, I called and asked how to get my answers. I was told to ask our PCP to refer us. 2 1/2 hours after our appointment started, they had enrolled him. I was in shock. He qualified under the classification of "debility". They were with us until midJuly, when they ere required to disenroll him because the Meicare guidelines or Hospice care had been tightenbed and he no longer met them. His Nurse and CNA were very upset about this, as was I, because they could see his on going decline. The problem--the gukdelines are still primarily physical levels of function, and his declines are in cognition, speech, communication, sequencing, etc. They will be back. We know this. I joked that they need a "Hospce Jr" program for patients like my DH. They told me there are some programs in testing stages for people like my DH, but they juist aren't available yet.
Why did the doctor say what he said? I'm going to hit you with some tough love.
All dementias a fatal. Your husband has at least one fatal disease if he has dementia. Either your husband has reached the point where he would qualify for debility or he would actually qualify for dementia. Your doctor thinks it is time for a hospice evaluation.
You should get the hospice evaluation. My husband had two of them. One literally less than 24 hours before he was taken to the hospital and then placed in a nursing home. Both experiences were very good and just being able to talk to the RN was useful.
The hospice I was talking to provides a bath aide EVERY DAY and an RN visit more than once a week. In addition to the 24/7 nurse on call who knows your husband's case, hospital beds and other equipment, and most medications.
The pre-hospice programs are called Palliative Care and they are beginning to show up all over the country because there are a lot of people out there, and not just with dementia, who need something that isn't quite hospice. Not so much in-house help although they do provide some, but that 24/7 hot line nurse is part of that program as well as other in-house services. If my husband had stayed home with me I'd have gone looking for that, but I literally never heard of it until after he was hospitalized.
Judith, I was asking for hospice, just to provide some morphine for pain and oxygen for dyspnea, I had no clue how far along Jim was and I'm in the medical field. Take a deep breath, listen to your doctor, gracefully, gratefully accept all the help you are offered and know that you ARE NOT ALONE. We are always here. Love ya, Arms around, Susan*
Thanks for the comments. I am going to have whatever they offer. I guess I had one vision of hospice and there is more then one. It will be helpful to know I have someone to call besides the police when he gets into one of his "moods"....like a couple of weeks ago. My DH also has severe lung problems and a heart condition.
The first time my wife was considered for Hospice, she didn't qualify. A couple of months later, after a hospitalization for pneumonia, she did qualify. She has been recertified once. The help I get: a nurse comes every week to check on her, a massage therapist comes every 2 weeks to give her a massage (I told them I need it more than she does); a social worker comes periodically to see if I need any more help (she gets showers at the day care center she attends); a volunteer comes every week so I can attend Rotary meetings; I get 5 days respite every 90 days - she stays in the hospital while I can go away, such as visit our daughter. There are more services available, but that's all I need now. When things get tougher they will provide a hospital bed, have aides come in every day to get her cleaned up, etc. Regarding calling for help, once your LO is on hospice you call the hospice nurse, not 911, for emergencies.
Yes, Judith, the lung and heart are probably what pushed him into it. Mine's on Hospice, after being evaluated a while back and turned down. He gets twice a week baths from the aide, weekly visits from the nurse who is very helpful and understanding. You can also get some pills, ointments, etc through them (free) and some places provide a lot of paper goods. Rhode Island does not.
Yesterday he was on a bit of a verbal tear. Watching Curious George and repeating phrases over and over. I finally gave up trying to get anything done downstairs and went up to be nearer. He was shouting loudly, "giant elephant giant elephant giant elephant." I have no idea why. He didn't want anything but to shout "giant elephant." Okay, shout away!
Judith, I love my fellow caregivers here so much! They all gave you great advice and I was just like you in having a certain understanding of what hospice does and is. What I think they are saying is don't rule out any help at all that any organization has to offer. The truth is for me I may not be able to afford to put my DH in a NH when I think he should go and in that case I would need someone to come to the apartment. All of this is a shock and I am sure that it is to all of us but one of the things that was said I think in one of the blogs is that we are living day by day in their world not ours. I hate it too and I am sure we all do. Please take advantage of all the help that is offered. Ciber group {{{{hug}}}} :-)
Thanks again everyone for your comments. I guess I have been living in my own little AD world and just trying to survive. I never gave hospice a thought other then it would be something we might need in a year or two. I know I have been feeling like I have all on my plate that I can handle right now and just too tired to investigate what is available so I am looking forward to learning somethings I probably need to know.
Close to Stage 7, usually with some complicating factor that makes it difficult for them to function. My husband basically can't walk, is incontinent, doesn't make sense when he talks. The service I get from the hospice service in RI is a weekly check by a nurse, a PT and a sociologist and a chaplain on call, and twice a week visits from a CNA (nurse's aide). I also got a hospital bed, a geri chair, would have gotten walker or wheelchair, or commode or bath chair if I needed them. Some hospice places provide paper goods (bed pads and depends). Mine does not. All of this is paid for by Medicare. They also pay for meds, ointments, etc, that you may need for comfort care.
It makes sense if you're planning on keeping your spouse home, that you identify a hospice provider and get an evaluation before you necessarily need it, to get an idea of what your local place can offer, when they can offer it, etc.
In my case I have to have help getting him in and out of bed to change the bed and him every morning and every evening, so I have a private CNA who's willing to come for just an hour or so each day that the hospice one doesn't come. That is NOT paid for by medicare, although I can deduct it as medical expenses on my taxes.
Thanks for all of the information. I contacted our doctor to find out what is available to us and am anxious to hear back. I too thought hospice of any kind was only available in the very last stages of life.
This morning I contacted the Home Care office of Kaiser. The Pallitive care in only when the person is bed ridden, not eating, etc. Sort of like Hospice. Disappointed but who knows maybe something will pop up for us to get some respite.
Hi all - After reading through this discussion, I am wondering if anyone has run into this situation. My husb got a high fever about 8 weeks ago & it rendered him unable to walk. I called Hospice that first day & we were certified. He was better after about 3 days of antibiotics, but continued to have a low-grade fever (under 100) every single nite, which indicated to me something was still wrong. One day before our "six weeks mark" in Hospice, I got a call from the nurse saying they were going to discharge us because he 1) wasn't getting any worse; 2) could live another 2 years; 3) We have LTC insurance so I had some help...My DH cannot speak, bath, dress, walk w/o help, i.e. he will get his feet tangled up & try to turn & fall, cannot feed himself, cannot even figure out how to pick up a glass, let alone hold it to take a drink...he is 24x7 full-time care & yes, I do have LTC insurance and yes, I do have a "helper" M-F that helps me so I can work...It seemed almost unspeakable that we would be "discharged" after such a short time on Hospice. I tried to transfer to another & was basically told that if he can walk & doesn't have "frontal temporal lobe" type dementia, then we don't qualify. On Fri of this past week, his fever "broke through" the low-grade to 102...I had to literally cut his T-shirt off him because he was dead weight, soaked in urine, and unable to help me in any way. All this happened @ 6am. As of yesterday (Sat afternoon) we have been reinstated with Hospice and the nurse who did our intake said his breathing looks like his kidney's might be failing or having serious trouble. It is hard to know "what's different/new/changing" enough to tell these intake people because to me/us, we are dealing with the changes and trying to just "deal with it" vs keeping track of it...at least I had not been "writing stuff down" like I did early on when changes happened...Now I'm just trying to keep my head above water most days let alone journal :-( I was just wondering if anyone else out there has had issues with Hospice ~ I always have heard "O don't wait til the end to call them in"...And then when I tried to get them involved, now there's this IN/OUT/IN again thing...I don't even have them do much, but as someone else said on this thread, it's nice to have a nurse some out once a week & check him, answer my ?'s, give a little support, etc. It's not always about the patient, but about US too. I did speak with the Director of the Hospice when this latest incident started, telling her about what all I'd been through & what I was told about why we were being discharged. She did say that Medicare has the criteria that they follow...The problem is I've seen others get on & stay on...doesn't seem fair.
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/214102241/m/1471008592 natsmom, this info is what our hospice uses per medicare to requalify. late stage 7 and one of the so called 'co-morbidity' accompanying issues within the last 12mos. i would seriously speak with your hospice director and show them a printout of what medicare deems qualifying. also get his HOSPICE dr to come out and to DOCUMENT it into his hospice chart his ongoing uti and possible kidney infection as its one of the secondary qualifying factors for medicare guidelines within a 12mo period. they are getting very strict now in many hospices - some still are using the 'debility' prognosis' and seem to be able to keep them on - sounds to me as if you are getting the runaround. i would take it to the top and find out just what your particular hospice guidelines are and see for yourself. divvi
natsmom, It is NOT FAIR, nothing seems to be fair with the dreadful disease. Your husband qualifies and I agree with divvi, I would climb a mountain to the top with this. In some ways I would wonder if I even wanted that particular Hospice. I also have had my problems with the Hospice group. I do know that it is all in how your nurse does the charting as to the re-certs. You get a good Nurse with experience in doing re-certs and you are good to go, if not they will discharge them in a heartbeat.
Thanks, Divvi & Jane...I appreicate ALL and will keep these things in mind, should the need arise. Got a hospital bed today because it's just sooo hard on my back trying to change him and help him stay clean. The new nurse mgr that signed us up again has been with this Hospice for years & she is totally on-board with our situation & feels we did not get the right treatment initially. Jane, you are right about the correct nurse...apparently ours did not do her part, which led to the discharge, etc...hopefully we're on board now for a bit anyway. I am exhausted from fighting this disease, including the "system" that goes along with it.