We started our journey Jan 2007. By Jan 2008 Dave had to retire. Final testing and official diagnosis April 2008. Jan 2009 no driving, finances or anything at all higher level. Not even Jan 2010 yet and Dave has day care 3 hr or more a day because he can’t recall how to do enough tasks to not get bored and feel useless. He cannot travel anymore as it’s like having a big 3 yr old…he can’t make the shower work, find the light switches in new places, etc, etc…way too much hassle & stress for us both. I went on my first trip alone this past week and everyone managed. Of course I put everyone through a mini-training course, with highlights in a folder for their reference. Makes me wonder whether my DH e will be in a facility by Jan 2011 and dead by Jan 2012. He has always told me matter-of-factly (not at all depressed) that he would not be in a facility very long, so not to worry about that expense, and that he would be dead before 2012 when his term life insurance is up for renewal. Up until now I was not ready to let him go. But I think I'm ready...my husband is gone anyway, just his body and sometimes very fleeting glimpses of 'him' inside his brain peep out.
We got a DNR last week. In NE the paramedics are legally required to revive unless a DNR is on file with the local sheriff's office. So my POA and his 5 Wishes would not mean squat if he had some issue outside our home. All the caregivers are good with no resuscitating.
Thanks for listening. And, you might want to check into what is required of the ambulance crew if called in your city, state, county. Some places require a DNR 'renewal' every 6 months. I was told at a Caregivers meeting that if your LO dies at home, make sure they are really completely dead before you call EMS as sometimes even with a valid DNR on file, EMS insists on resuscitation.
Libby-in Florida there is a very specific DNR you can get that states even if EMT's are called there is to be no CPR. The doctor and POA must sign the document and it must be printed on canary yellow paper. I think the print has to be in red. I had to get it when Hospice took over my husband's care.
I am an RN that teaches Paramedics in Los Angeles County so I know this topic well. California used to have very specifc requirements and any 'DNR' had to be on a specific form, etc.
Now almost anything is acceptable (outside of a phone call from "the doctor" WHILE resusitation is in progress). Including DNRs, Advanced Directives, DPAHC, Living Wills, Notes written into NH charts, etc.
HOWEVER. . . . As somebody who has been on many ambulance runs and worked in ERs the question that the rescuers always want to know (and it IS a good question) "If you have a DNR, why did you even call 911?" "What do you expect us to do?"
From the view of the ambulance crew and the ER staff it always looks like the family is trying to shift the responsibilty for "not treating" onto us rather than sticking to their (DNR) decision.
The moment of death can be very difficult but if there is a DNR (or other end of life directives that specify 'no care' or limited care) dont call 911. Make sure that EVERYONE involved with care (professional or family) knows this and understands the directives. Whenever somebody dials the three magic numbers at the time of death, it only make things harder for all concerned.
Laws may vary by location but in California when somebody is 'dead', a call can be made directly to either a funeral home or even the Coroner.
Best suggestion: Dont call 911 if you dont want 'everything' done. . . .
Excellent advice, m-mman. We went through this when my mother was trying to die. We knew she was very ill, didn't have much time left, but when she would have a stroke or seizure we did not know what else to do. I'd never been with a dying person before. Without realizing it I believe I was calling 911 for comfort for "the living" not my dying Mom. The last time we called them as they were pounding on her poor frail body I realized my mistake. I could not bear to see them treating her so roughly -- although they were only trying to save her life -- and asked them to stop. They explained they could not -- they had been asked to come and by law had to do their job to the best of their ability. It only gets worse once they make it to the hospital. Without proper documents there is no way the folks at the hospital are going to let your loved one die in peace.
Don't know if I will have the strength to "not call" when the time comes but I hope I do.
I now realize how smart it was of Rose Kennedy, when her husband died, to go down to the pool and swim for an hour before calling anyone. This was years ago and my reaction at that time was negative. Today it really makes sense. And even in a hospice care place they suggested a feeding tube for a dying man I knew and his daughter had to tell them NO.
I have been on both side of this issue, as a daughter, daughter-in-law, friend, and as an EMT. It is NEVER easy. Emotions are high, very raw for the family, very legal for the EMT's. I think that above all we need to RESPECT THE WISHES OF THE PATIENT. May we all learn a lesson from the example of Rose Kennedy.
I remember when I brought my husband home from the AD facility to care for him at home...his physician told me to make sure that if I found him actively dying to not call 911 as they would come in and by law have to do everything to preserve life. Well, by that time there was not much of a life to preserve...lying in bed in a fetal position.....so I listened well and luckily he died during the night with nary a whimper....I slept through it all. Such hard decisions to have to make.....
A distant cousin of mine told his wife: "I'm having a stroke, don't call 911." She couldn't bear it and did call. This discussion is helping me imagine not calling.
Hospice told me when they accepted my husband in the program, that should he be dying, to call Hospice and they would take care of everything for me. They had me fill out the DNR, and like Nancy, ours was black ink on white paper. Hospice specifically told me NOT to call 911.
My husband had another mini-stroke during the night last week, and has lost some of the ability of the wires from the brain connecting to the muscles in his right leg. Last night after I "helped" him back into the den from the bathroom, he stood in front of his recliner and I turned him around. He just stood there. I asked him if he needed help sitting down and he said "yes." This is all so devestatingly sad!!!
Briegull, thanks for asking. It is a short circuit wire - sometimes it connects and sometimes it doesn't. I can see him trying to find the connection before trying to get up, or picking up his toys. He can't remember how to get food on his fork now. I load the fork for him, and he can get it to his mouth. But to answer your question, he isn't any better, and I honestly don't think he'll get any better at this point.
From the perspective of an emergency nurse who works with paramedics and someone who has seen more than one human die in front of me. While we studied 'death and dying' in nursing school, we were not taught much about what the actual process looks like.
I do not mean to be graphic and it is not my intent to upset board members, BUT if you have never seen it . . . Dying is NOT like they show on TV. It is rarely quick and it is rarely silent. The human body struggles to stay alive.
It also IS NOT comfortable to the person who has to watch it! Even experienced medical staff commonly find reasons to 'leave the room', cover up the process with oxygen masks or even give medication to 'hurry the process'.
For whatever reason the transition between worlds has interested me and I have often taken other nurse's patients because I knew their nurse would botch the event. (for both the patient and the family) I once stopped a patient from being taken from ER to surgery until they had met with their family. (the doctor didnt tell the patient or family anything) Because I strongly suspected the patient would not survive I all but insisted that they say good-bye to each other. They didnt understand it at the time but they did share a few words and a kiss - the patient was gone 30 minutes later. I never spoke with the family again but it was my hope that they had a memory they could hold on to.
I have held hands until they became limp. I have wispered into ears telling people to go into the light and even said silent prayers such that the dying person's pre-deceased family might meet them and guide them on their journey. But I have never worked as a hospice nurse.
I dont know exactly what hospice workers do to prepare the family for the final minutes/hours but too many times I have seen that the family was not prepared at all and it is the poorly prepared families that come into an ER.
MAKE NO MISTAKE IT IS A DIFFICULT THING TO PREPARE FOR!
Personally I first experienced the moment of death through non-family members, so I could be detached and professional. I will never know how I would react if my first event was with someone I loved. But for everyone on this board who will have to go through the dying process with their spouse, PLEASE learn more about what will happen. PLEASE talk to your care professionals about how "it" will happen.
Yes nobody wants to think about it, nobody should have to go through it, but when you do it is always easier when you know what to expect. When you know what to expect you CAN turn it into something beautiful.
A big hug to everyone who has to help someone we love, leave us.
I have been at the bedside of a number of family members when they died and they all seem to go peaceably. The one I remember most is when my daddy died. The nurses were working with him and I heard this little voice singing "I come to the garden alone while the dew is still on the roses". Most of us are familiar with this hymn. Daddy loved to sing and had a very good voice and it was a comfort to me knowing he left this world singing.
I was with my daddy when he died, too, Bama. He had cancer and my mother and I and a friend had been taking 8 hour shifts staying with him. It was on my watch that he died. He had been "asleep" for days - not a coma, but just shutting down, I think. His breathing changed, and I just knew that he was going. Within a minute, he was gone. It was very peaceful. We had all said our goodbyes the week before. We knew he wasn't going to be waking up.
mmm-man, thank you for sharing......just as each Alzheimer's patient is different, I think that their passings are going to be different as well. I don't know if those who are widows and widowers are inclined to share that information here or not.
Thank you for this very interesting information. I, personally, want to be prepared. And, I will speak to our PCP about what I should do when the time comes. Thanks, again.
I would imagine a death in the ER would not be peaceful. I have had the privilege of being with my medical patients dying and it was not a struggle. They simply stopped breathing. My at home patient had her family with her and they did well with the process. Another home care patient passed in the hospital with his family and myself at his bed side.
Well, my husband died over a two week period...the length of time that he would not or could not eat. He just gradually slipped away...there was no struggle and no fighting the end. My children and oldest grandchild had said their goodbyes and I then didn't let any family into his room. He was losing weight so quickly that he looked skeletal....it was not pretty. I had not been sleeping well during that time and would get up many times during the night and go to his room and could see that he was still breathing...then one Saturday night I fell asleep on the couch about 9 and when I woke up it was 4 in the morning. I knew in an instant that he must have died....I really believe that is why I finally slept thru the night. So, I wasn't there at the end, but I didn't fret over that fact.....I was there for the hard part of the journey....the everyday struggle of living with Alzheimer's. To me, the dying was not the hard part....it was the living that was so difficult.
My father was scheduled for surgery, but they sent him back to his hospital room saying he wasn't strong enough. My brother sat beside him reading a magazine. He could hear our father breathing. Then it stopped. He told the nurses, "It's quiet in here." Peaceful passing at 95.
After reading about the 911 calls/responses, since we have DNR and end of life directives, I won't be calling 911 if the end has come or imminent.
Years ago we were leaving on a long trip and our oldest best beloved cat had serious congestive heart failure. We knew he'd probably die when we were gone, with all the trauma that would entail, so I took him in to be "put down" beforehand. Now we'd had many cats die, but it happened that I'd never been with one being put to sleep, and this was traumatic for him and for me - he struggled as the meds spread through his body, and I felt that I had betrayed him. I have since learned that giving him a tranquillizer ahead of time would have probably prevented that happening.. vets call it "the excitement" and it doesn't happen always - but I've never been able to force myself to stay with a pet since. A couple of years ago Fox-cat had an embolism overnight that paralyzed his hindquarters; my daughter found him and took him to the vet, said that he just sortof drifted away, as best she could tell through her tears.
From what I'm reading here it sounds like both ways can happen with a natural death; I would guess that sedatives would probably be appropriate.. It's good for us to know that it is not ALWAYS peaceful, but also good to know that it CAN be.
Siem and I were with his mother when she died, and with his father until shortly before. We had gone home at midnight thinking it might be hours yet and were going to relieve his brother at 4 AM. What I remember is that it took longer than expected, although they were given morphine, and that the breathing was very labored. Sometimes they would not take a breath for so long that I thought they were gone, and then they would "catch" another breath. I was curious how the staff of the nursing home knew that death was near, and that they should call us in, even though it was still several hours away.
Like Sandi*'s hubby, Claude just gradually slipped away. He had been in a light coma for about 5 days. He was still aware as he would squeeze my hand when I asked him to.
I got up about 3AM to go to the bathroom. I went over to his bed to see if he was covered up etc. While I was holding his hand, he took a deep breath, let it out and was gone-very peacefully.
Jeannette, I don't understand how the staff knows death is near either. Claude's brother was in a NH under hospice care. We got a call about 7AM that we needed to come asap. We were standing around the bed reminescing about his life. All of a sudden, he seemed to smile at what someone said, took a breath and was gone. Again, it was a very peaceful passing.
Gee, this was such an interesting post. I never really thought of doing anything other than calling 911. But it makes sense. I do have a DNR. Why put your loved one through all the stress of fighting the process.
I've never been with someone at the point of death. It's a scary thought. I would hope my DH passes in his sleep ... if not I pray I have the presence of mind to do the right thing. And what is that? To stay and hold his hand and offer comfort and loving words?
I do pray now that God does not let this go on for too long. Heal him or take him. I feel like I've already lost him and gone through a heavy greaving process. Boy this is hard.
I have been fortunate with spouse, parents, and several very ill cats, that the ending for each was essentially peaceful. In the case of my DH and also my mother, breathing became somewhat labored over a period of hours but neither seemed to be in pain. I held their hands and talked to them as their breathing just gradually decreased. Some minor restlessness was taken care of with anti-anxiety meds. I have also experienced the death of my patients in the hospital. By and large, especially in the case of patients who have been chronically ill, their passing was as described as above by Nora. It is a huge help for family members to understand what is happening, and I would urge spouses of those in later stages to ask your doctor what you can expect at the end. For me, there was satisfaction and a sense of consolation to be able to be with my husband those last hours as he was dying and tell him it was okay to let go because I had his back.
If they are on hospice, you call the hospice nurse. If not, you can always call the funeral home of your choice and they will instruct you who to call. The laws probably differ from state to state, county to county, city to city. When my mother passed in March of 08, I called the hospice nurse and it took her 2 hours to get here. The people from the funeral home and lots of our friends and family were at the house for about an hour before the hospice nurse arrived.
In some states you can call the coroner. Also, if you call the funeral home, they will probably call the coroner. Someone has to sign the death certificate.
If they die at home, I have always wondered if there was a different procedure when they died. Wouldn't someone need to determine the actual cause of death, (heart attack) (stroke) (natural causes) (embolism). Is that what the Hospice Nurse can state? Or does it have to be signed by a doctor? TWO hours for Hospice to come out??? That's terrible. Was it a weekend? I know we just have an "on call" nurse on the weekend and she has to be all over Greater Houston on weekend days.
I believe if the patient has been under a doctor's care for an illness for a certain period of time (a month???), the death is usually presumed to be caused by that disease. When it happens, ff you are working with hospice, call them. Because my dad died around 3 AM, I did not call the hospice nurse until 6:30 AM because there was really no need to get someone out in the middle of the night. I changed him, bathed him, left him quietly in his bedroom until morning. The hospice nurse officially declared him deceased, I called the funeral home, they came.
The evening before my brother passed, several family members and friends were around his bed at the nursing home. He'd just been brought there from the hospital that morning, and he was put in a room on the 2nd floor that was in the process of being remodeled. Not many people there. (I wondered later if they felt he wouldn't live long; so put him up 'out of the way.') Anyway, at one point he said, "I'm going to kick the bucket." I don't remember how people responded, but later I wished I'd asked him what made him say that. Anyway, the next morning he died from gastrointestinal bleeding. friend's mother had said she was going to die, and her daughter asked how she knew, and she said, "I just know." And she did the next day. Death is an interesting phenomena.
OK, just got off the phone with the Hospice Nurse Administrator. She said if we thought they were 'going', to call them. If he is indeed, gone, they will declare him dead and their information will go on the Death Certificate. Sometime, she said, they are NOT dead, but barely breathing..and they do not respond to stimuli,and families are surprised when the Hospice Nurse informs them they are alive! Doesn't happen often, but she said it has happened several times in the past.
I took the opportunity to ask her what is happening here. Foster is falling almost every day, doesn't know how to walk - or push his walker without my guidance. He picked up his walker and tried to carry it in front of him once. His inability to move his feet forward in a walk...rather, he marches in place. She said that is sooo typical of advanced Alzheimer's. and soon, he'll not be walking at all.
We were looking at pictures this afternoon and he had no idea who I was in most pictures.....but he did recognize President Reagan and could still say 'aaagun". Great Republican,,,to the death!!! Some things will never change.
My Dad went into cardiac arrest 3 times, before he was stabilized with a pacemaker. After he was better, I ask him if he saw or heard anything. He said, he had, however, wasn't going to mention it, because he thought we would think he was crazy. He said, he was lying nude on a grassy hilltop, he looked up & there were his parents...both deceased for many years. He said, they didn't speak, but smiled at him. He said, he wanted to get up so bad to join them, however, he couldn't. Then they faded away. He said, he was not scared & felt very peaceful. I always felt if he had joined them, he would not have recovered. That is what I am going by, that when the time comes for my husband, his mother will be there to show him the way.
My Uncle in England was sitting in his chair and he told my aunt he "was going" and died there and then. As far as I know he hadn't been seriously ill. When I was leaving England to come home (here) a few years ago my Mom told me she wouldn't see me again and I told her she would because I would be back. She was right she didn't see me again, she died before I went back there. My Mom had heart problems but when she told me this we were in the elavator on the day I was leaving. My favourite brother was in a Hospice care center with bone cancer. Of course I had to go home and see him. I got home on a Wednesday, he died on the Sunday. Who knows what will happen and when.
When my sister died of cancer we knew she would go within a short time. we were taking turns keeping her lips and mouth from getting dry. She was totally unresponsive. Then she opened her eyes and reached for me. She hugged me, then pushed me away and hugged her son. Then she relaxed and was gone. Her daughter and I dressed her while her son called the hospice nurse. The nurse took care of all the details.
Nancy B, yes it was a Sat. and the on-call nurse was an hour away, but it still took her 2 hours to get there. The nurse declared her deceased, but the funeral home got her PCP to sign the death certificate. When the nurse got there, I was very rude to her. I couldn't help myself. About 2 weeks later, when hospice called me for my exit interview, I told them how unhappy I was and she said, "Dear, you sound like you need grief counseling." I hung up on her.
My mother died in the hospital of lung cancer. She had been very bad for several days, sleeping and not communicating with anyone. The night before she died she rallied and asked for all the family to come to her. She said her good-byes to each family separately. She then slept through the night and most of the next morning. About noon she opened her eyes, reached out her hand and said "I want my mom" and quietly took her last breath. There is no doubt in my mind that her mother was waiting for her on the other side.
This is one of the most interesting post that I have read. I really enjoy all of the information shared on this site but really appreciate the information on this post. So many questions have been answered with the different way things happened to your loved ones. Thanks to all of you that shared your information. It is scary but so needed.
I am just filling in the forms for my dh's first day at day care and there is a question added handwritten at the bottom of the form in a single word: Resuscitation? yes/no
As Pris says above in a different context I'm not really ready to think about this yet, but I'm going to have to answer No. If I don't answer, I'm sure Yes will be assumed and will be the normal procedure. I am also assuming that we will be given a form to fill out and I don't know how dh will react to that.
I have watched three members of my family die, my 5-1/2-month-old grandson, my dad (my sister and I took care of him at home with the help of hospice), and, last year, my mom. My grandson's death was extremely difficult for me (but he died peacefully). My dad did not struggle. He had complications after surgery and wanted to go home. We were with him at his home for a week to help take care of him. My mom fell and hit her head forcefully and had a brain hemorrhage. I watched her for 4-1/2 days in the hospital (we had her in hospice) and there was no struggle. So, to say that everyone struggles to stay alive is just not true. All three of these deaths were peaceful and I was so glad I was with them at the end. I hope and pray that when the time comes, my husband's death will be peaceful, too.
This is from the daily e-alert from Health Sciences Institute:
Care giving has two stages: aggressive and palliative.
If you're diagnosed with type 2 diabetes, for instance, it's time for aggressive care. You eat mindfully, exercise regularly, get frequent check ups, and work with your doctor to prevent or manage the health problems that trail that disease.
Terminal cancer patients who are in hospice receive palliative care. No preventive measures are taken. It's all about reducing pain and providing comfort.
But when caregivers are not informed about the nature of advanced dementia, inappropriate aggressive care is common and can be harmful to the patient.
In a recent study in the New England Journal of Medicine, researchers found that a very large percentage of bedridden dementia patients received aggressive treatments described as "burdensome" when their caregivers didn't understand advanced dementia. Treatments included emergency room visits, hospitalization, insertion of feeding tubes, and other measures that did more harm than good.
Lead author of the study, Dr. Susan L. Mitchell, told the New York Times, "When family members understood the clinical course of dementia and the poor prognosis, the patients were far less likely to undergo these distressing interventions."
It's simple, but it couldn't be more difficult. The caregiver has to readjust to a new concept of care. As one medical school doctor told the Times, palliative care does not mean less care.
Lori, the key word here is "advanced" dementia. My DH is an early stage 5. I don't consider him "advanced" as yet. Still, our family doctor (or rather, the assistant who is in charge of DH's diabetes check-ups) wants to order an ECG for him in January, just because this is standard practice for diabetes patients at intervals of (I'm not sure) two or three years. AND I don't think I'm going to do it, it would be a waste of health care resources. I would not want him to have surgery or a pacemaker, so why have the ECG? (It's a genuine question, I really want to know, is there a good reason he should have this done?)
This thread has given me a list of things I need to dicsuss with the Dr. at our next visit. I wonder if the business office at our clinic would be helpful in getting the proper papers in place.