This is a question I have and someone probably knows the answer. My dh has taken another down hill slide. He can't walk now to speak of and hospice has told me to put him in his wheelchair and for him not to use his walker. Guess you could say he is basically bed bound. Therefore, I will be looking at Board and Care places early next week. Sleeping at least 20 hours a day.
A friend came by and made the comment I should call his dr. or take him to the hospital..."he looks terrible". I told her hospice was taking care of him and I only wanted palliative care. Then she said.."I don't know how you can do this..he looks so bad." My dh is actually in a form of heart failure and his legs, feet and arms are various shades of blue and brown from poor circulation plus very puffy and swollen. And he is now on oxygen almost 24-7. The hospice nurse told me what to look for in the discoloration of his feet, hands and arms and call them if I see it. I really don't understand what to look for...I think it was Mottled skin or something like that.
Anyway, I got to thinking, maybe I should call the dr. (our gp who my dh hasn't seen in two years) and see if she would put him in the hospital. I know hospice would stop then and could restart...but, if our gp says he needs to be in a nursing home...who pays for that nursing home? That is my other question and could someone tell me about this change in the color of the skin when a person is actually going to die. I am just totally exhausted and frightened here alone today.
Judith, I can only tell you my experience. When my mother died at age 90, her skin was pale and cold to touch for about 3 days before she died in her sleep. My husband choked on his saliva for 2-3 days before he died, but his skin remained warm and of a good colour, but he died when I was not there, so I can't say about the colour at the end. But he was warm for at least 2 hours after death, and my daughter who went back into his room after the undertaker took away his body said the bed was still warm to touch. I didn't want them to take him until his body temperature was cold, but the nurse and undertaker said it was not uncommon. I never saw it during my nursing career. All of the patients I had who died showed signs of cyanosis, that is, their arms and legs were splotched with blue : bigger than bruises and more diffuse. All of them began to cool almost immediately and their limbs stiffened. Sometimes this stiffness made it difficult to prepare the body for the morgue. My conclusion is that the signs of death can vary. Absence of a heart beat and respirations are what make medical personnel use to pronounce death. I'm sorry you are alone and tired. It is a most difficult part of the journey. Prayers going up for both of you. Much love.
My doctor sent DH to the hospital for three days. From there, he went right into the nursing home. Medicare paid for 21 days. By then, the paperwork for Medicaid was started.
Husband was in alf when the final crisis happened. I relied on hospice only. This was in part due to what had happened during the previous month. It was also due to husband's specific wishes in a health care proxy.
Based only on what I know, to be under the care of a hospital is so different from hospice care. It all depends on what you feel is the right thing to do. As I experienced it, the hospice nurse looked at skin color.
Mottled seems a good (?) word to use, it was bluish- purple. Following is graphic- please Judith, stop if this is not what you need at this time. It started with his feet and lower legs, also his hands; that bluish tinge. His body cooled very quickly after death; it seemed to cool even in the extremities before.
Of course, you must do what you need to do. My husband too, was totally in bed or in a wheelchair. Dealilng with the fact, or at least that is how it was presented to me, that he would never walk again was one of the most difficult aspects of all this ****.
Hospice explained to me that if husband went to a hospital for any reason, including a fall, or a fracture, that they would have to change the billing from hospice to insurance. My husband was not eligible for medicare because of his age, but hospice said that if that happened the change from insurance back to hospice could be almost immediate.
judith i am no dr nor have training, but it would sound as with the mottling of lower extremities your DH is having significant cardia issues. if he goes to the hospital its my understanding that hospice is released and his regular insurance picks up to pay. then youu can go back on hospice if needed. hospice can follow them to facilities as well, ie Nursing home or home again. i thinkothers have stated medicare does pay for some 21days or so if they are send to rehab after 3 full nights in hospital per drs orders. you can get a counselor at the hospital to explain more to you if needed. above all what we want, is for them to be painfree. i know when my dads extremites turned mottled near the end it was quite painful. you should feel comfortable calling your hospice DOCTOR and reviewing his critical care at this point maybe instead of the nurse. they may offer some insight. divvi
Thank all of you for your comments. One of the worse things is this being the first experience with this ever changing condition. It changes not only from day to day but hour to hour. And, knowing little to nothing about what is serious to what is just part of a long process is driving me crazy. And, then when I add the fact that I am alone it is almost something I can hardly bear. Of course, being tired doesn't help.
I think my worse fear was that when I was trying to get him out of bed and into the wheel chair he would fall and I wouldn't be able to get him up. I finally just told him he was going to have to stay in bed until I had help on Monday. Of course it seems he always gets worse when I have no help here.
If you are not planning to treat your husband, then leave him in the care of Hospice. If you take him to the Hospital and they only do observation and happen to keep him in observation status for several days, (Yes, I said several days) you can go into the hospital now, think you are a full admit, be in a room for several days and still be listed as observation. During the observation admission only his Part B insurance and supplemental insurance will pay, it is looked at as out patient. You can even be a full admission for a day or two then changed to observation admission in the middle of the stay and you will never know it until you get a bill, observation admissions will not pay for any routine drugs they give you such as your regular prescriptions you take at home, however you will be given the medication while in observation and charged an arm and leg for them.
If your husband does not have a full admission stay for at least 3 days and nights and is sent to a Nursing Home then you will pay the full room and board for the Nursing home visit. Medicare will pay zero for the room and board, only for the physical therapy, etc. just the same as if he were out patient.
I tell everyone, be sure and ask if you are a full admit. It is not totally up to the Doctor, he can do a full admit, then the review board can change it during your stay. Be informed, check with the financial department before you are discharged and ask how your stay is classified, if full admit for all days or has it been observation for any days.
Looks like a catch-22 - if they change the admit to observation before the full 3 days are up; and you would never know until discharge?? I would think that your admitting doctor and you should have a discussion about what outcome you want and need; but don't know if this is possible? It's awfully hard to keep all of this together in the midst of, perhaps, a crisis situation.
Vickie, Yes, it would be a good idea for the discussion with the admitting Doctor, however that in itself will not necessarily always result in the outcome you want. The final say comes from the Quality review board, not your Doctor, they go by certain required Medicare criteria in the record in order for it to be a full admission.
Vickie sometimes the Doctors just go ahead and use the Observation Admission rather than go back and forth with Medicare and the quality review board. It is not unheard of for Medicare to take back days that have been deemed as full admission.
As I say, always check with the Doctor and the Financial department BEFORE being discharged to a Nursing Home for any reason. Make sure it is a qualified stay
Thank you...I'm so glad I asked this question and got answers not only for myself but answers that may help others. I will now take this option off the table.
The reason this hospital to NH came into my thoughts is that since my dh seems to be failing rather fast and is cared for by hospice I have a concern of placing him in a Board & Care just for a few months...but I also have concerns that he is not getting continued care by anyone except me and I am not a nurse yet I see a change in his skin, his temp being lower then normal, I have a difficult time keeping him in bed which hospice told me I should do because sometimes he can't walk very well and he is very unstable on his feet.....I keep saying to myself...what if this...what if that happens...and I am here alone. If he falls I can't pick him up and will he be on the floor for hours before someone from hospice can get here to get him off the floor?? And, this is just amazing to me!!! He can hardly sit up in bed and within hours when I am in another room here he comes...walking into the room... I nearly faint. How did he do that??? Two hours ago he couldn't sit up in bed. This is like nothing I have ever seen or heard of. Then in less then an hour he is wanting to go back to bed and looks like someone that will drop dead any minute. It is like I am living in a dream world.
The other night he was on oxygen and abut 3:00 in the morning I hear him in his bed...and I wake up and look and he has gotten out of his hospital bed and put on his clothes and is sitting on the edge of the bed. This is someone that hasn't been able to put on his clothes by himself for weeks. How did he do this???
The ALF I was thinking of placing him in will now cost $2,000 a month more then it would have 2 months ago because they have 4 levels of care and he has advance from the #1 level to the #4 level.....The VA nursing homes I could put him in for free are like 45 miles away in heavy Ca. traffic and I do not hear very good reports about them. And, the hospice people told me I needed to know if I put him in a nursing home he probably will die much quicker...(what a quilt trip that is) yet I don't want him to linger in this condition either...Catch 22.
Once in hospice there is a shift to comfort care. Hospice only does things to make him comfortable, not to fix anything.
While hospice is often done at home and at the hospital (when my father was dieing he was already in the hospital so he was moved to a hospice wing) but there is also care at a hospice. While there is often a waiting line to get in is this a possibility?
Talk with the hospice nurses about your observations. They may tell you this is to be expected or something else.
JudithKB, My mom had a pacemaker so I am not quite sure how this worked in her case, I think kept her going maybe longer than she otherwise would have. My mom was pretty comatose the last day or two of her life but a good week before, the nurses took the nail polish off her big toes..I asked way and was told to check circulation as often before much else shows any signs the nail will take a bluish tinge. What I noticed the week before she died, her legs would get a sort of tea dyed egg look but then it would fade and her legs would look normal...but pale creamy white..pretty actually. But this is really the only thing that continued until just a few hours before actual death. When I went to move her a little for comfort, I noticed that the back of her arms and shoulders looked like she had black and blue bruises..I was told the blood was "pooling" and this could come and go...I didn't notice her getting especially cooler..we had blankets on her..It was Nov. After she was gone, we kept her at home for a few hours, hospice was there and they took care of fielding calls for us and they were very helpful when the funeral home team came. They shielded my mom's remains from public view..the neighbors were all in the street on this sunny pretty day so I had the funeral home folks, who came in an unmarked van, take her out with the sun on her face one last time..( for all the neighbors knew at that moment she was on her way to a care facility)...and then they drove off... It was a hard day made a bit easier thanks to our hospice of Houston team.
Judith this is so crazy your guy one minute getting up. the next not walking. It has GOT to be those synapses that sometimes connect sometimes don't. Oh dear friend this is a very hard time for you.
It sounds so much like our mates in the earlier stages....one day just out of it and cannot speak and tripping, the next day remembering more and walking better.
I wanted to say something about the mottled skin. Of course it is different because my sister was in her last week of like, in a semi coma, and had cancer. yes she got all the above described.
But like Mimi said, her skin looking beautiful. The day before she died, her face glowed like an angel, creamy white and smooth and unblemished, truly pretty. I like to think, it was because she was feeling better on her way to a peaceful place.
Regarding Medicare paying for NH after 3 days in hospital - this is ONLY for Rehabilitation. If they determine that it was for custodial care they will not pay. Based on Judith's description of DH I would say he would not qualify for rehab. Best to check on this before admitting to hospital.
Marsh, Yes you are correct on the rehabilitation part. Generally when the person has been a full inpatient admit for 3 days and nights they WILL qualify for some rehabilitation, to get them back to the point they were before the admission. It is not hard to qualify for the rehab once the true full 3 day admission has been met. The tricky part is the 3 day stuff. It did not use to be this way, when I worked in the hospital billing the Hospitals were not allowed to keep a patient as observation for more than 24 to 48 hours, this new trick has been slipped in on people.
Hospitals have what is called Utilization review departments who review hospital admissions to determine if the patient meets the inpatient criteria. They compare your visit with Medicare rules to determine if your stay meets Medicare rules for full admission. We have to remember Hospitals are for ACUTE care and when the care no longer meets those acute guidelines then the visit is downgraded to observation. Hospitals are more careful now because if Medicare often decides the service the patient received did not meet acute criteria, and therefore will not pay for the service.
The bad part of this all is that Medicare does not require Hospitals to notify the patient of their obversation status
This has nothing to do with the New Health care law, this was in effect before that. All I am trying to do is let JudithKB be aware of this in case she drops Hospice to take her hubby to the hospital
JudithKB I would talk to hospice, ask them how close to the end they feel he is. If you do end up needing to place him Hospice will get that done for you also. As far as payment, it will come from your own funds until you can qualify for some type of help unless hubby meets the requirement for full admission and then onto rehab nursing home.
Hospice just re-newed with medcare approval for another three months or it is 6 months. But, anyway they are still here for awahile. It is his heart that probably will take him down.
I just had such a bad weekend with worry that he would fall and break somthing and what would I do. I feel (at least for today) I have no choice but to place him in a Board and Care for his own safety because he is at risk here with me. He cannot remember or follow my directions anymore...when I tell him he can or cannot do something. 1. He doesn't understand 2. He doesn't remember.
Hate to say this, but the hospice nurse in charge is not my favorite person in the world. I know she probably is good....but, I feel she may be under-estimating how bad my dh is...and of course I may be over-estimating. But...it is just all so frightening when I am alone for several days with him and I see the declines. We kind of started off on the wrong foot. I knew my dh had taken a nose dive in early May and his neuro who has been seeing him told me he thought he had ayear and anything less he couldn't give an estimate. Also, the first two hospice nurses that came said they thought 6 months or less. I have always thought he would not make it much past the first of the year....Then the main hospice nurse comes off vacation and when she comes she says...."No...way...it could be a couple of years." So I have little faith in her judgment and whatever she says I am fearful she is just saying what I want to hear. He looked good when they first came 3 months ago but was on a decline....he weighed 140 the first time they came now he is down to 128. He is on oxygen almost 20 hours a day or his oxygen level drops down to 90 or 91. His pulse go up and down ...down to the high 50s and then jump up to 110...even while my little meter is on his finger. Also today his temp. has not gone above 96..6 and has been below normal for the past 3 days. I wish I were a nurse.
Judith-as you know I am a nurse. Many times I have sat with a person who was actively dying and still alive when my shift was over. Some events are in the loving hands of a higher power.
While most people have found hospice to be helpful, some have not. Some hospices are better than other, some hospice nurses are better than others, sometimes there is simply a poor match. If you don't feel comfortable with a nurse, can you contact hospice to ask for a change or get another perspective?
Judith, you can call your Hospice Group and speak with the Director of Nursing and simply ask for a different nurse. I cannot imagine the Hospice nurse telling you that your husband will die sooner if he is placed in a nursing home. She sounds very negative if you ask me.
My husband fell over and over again, and if it was at a time I couldn't get a neighbor to help me, I called 911 and said that this is NOT an emergency, but that my husband had fallen and I needed help getting him up and back in bed. Within minutes the EMS guys showed up and helped get him up, and tucked back into bed. They would come to the house in the EMS Van, but would not have their lights flashing or using their siren. They never charged me a cent.. and I must have called them ten or twelve times in all. That does NOT interfere with Hospice care, or it certainly didn't in our case. I was told by Hospice ..NOT to call Hospice to come help pick him up when he fell because of the risk of injury to the nurse. I'm sure all Hospice providers are different, but that was why I knew to call 911 when my DH fell.
Judith, Do you believe that placement in a Board and Care will be better for him at home, do you really believe he will be less likely to fall? I really doubt it. He most likely will not get near the supervision he has had home with you. I worried all the time about my husband falling., once did call 911 to help get him up, but he never broke any bones. Don't worry about what might never happen, just do the best you can for him. If he does fall and break a bone then of course off to the Hospital you would send him, and with a situation like that he would qualify for the full admission stay. I would opt to keep him home, and keep Hospice. Nancy B is right, call Hospice and get a different Nurse, I know I had to do the same thing at one time, in fact I had to do that twice.
JudithKB, so sorry that you had such a rough weekend. you will make the right decison for your DH. Be strong, I know that you are tired, but you know in your heart what is right for him. As far as the falls, do you have a hospital bed with rails on it? Rails are wonderful b/c even if they do want to get up like your dh did, they usually cannot figure out the mechanism to release the rail. They usually make alot of noise trying to get it down. I have called the fire dept many time to get my dh up out of the yard, etc. They are always very helpful. Hugs and prayers to you.