All of us or most of us pray that they will go to sleep and not wake up. We have all learned a lot from this site. We know what the future holds for them and we must except what comes our way and do the best we can to deal with it. This is one sitution that we can't say "If life hands you a lemon, make lemonade."
It is not the broken ribs only but the ethical issues regarding CPR on terminally ill patients that is the issue. Briegull not sure if there is another thread where this is more appropriate, if so please feel free to copy and post.
As I mentioned before, if you do not have specific rescusitation orders for your loved one...and yourselves, please make them. Make sure that your family is aware of them as well. We are all on a journey with dementia and AD that has no cure at this time...we may work real hard to slow it down but we all know what the end will be like. Therefore, it is important to have discussions of what you want to do if you or your LO should need CPR. When you call rescue/911, they are under orders to start CPR unless you have a directive not to....the same goes for the ER staff. I know that I do not want my husband's suffering prolonged because I am too selfish to let go. Selfish, or driven by guilt that it is not right not to do everything to prolong life is a feeling that many caregivers have. It is okay to let go when the end is near and even ethically and morally sound.
We have the technology to prolong life...but are we prolonging life for the right reasons? If your LO has discusssed wanting everything done then that must be honored also. But in my experience, if folks knew what AD is like at the end they would do very little to intervene with modern technology to stop the inevitable. Early on in my husband's illness we drew up all the appropriate documents to give POA and living will directions for each other. The best gift I can give him, and my family can give me is a painless, peaceful and dignified death. Doctors do not like to talk about this...think about it..death is a failure for them!
Do not feel guilty if you are not pushing exercise or doing mental games or if your LO is sleeping more. As many have said this is part of the disease. (In my house I check the couch every night to see if my husband has sprouted roots....the perfect couch potato!) Be well!
scs says: When you call rescue/911, they are under orders to start CPR unless you have a directive not to....the same goes for the ER staff.
I know that. And it worries me a lot. What happens if I have left him in the care of a CNA or someone else and they can't reach me immediately? THEY are under orders to call 911, which is under orders to start CPR and take them to the ER which...
you see where I'm going. We have directives that say do not resuscitate but they may not be remembered.. would they work if I weren't here??
Last summer our daughter was with him when he had a fainting spell or TIA. I was out of reach in ME but she phoned me. I told her to call our neighbor. They both said they couldn't wake him up, so they called 911, which didn't do CPR but did take him in to the hospital. They didn't do CPR either, thank heavens, and by the time he was there he was much more awake. They admitted him overnight.. I came down the next day. They had started him on Seroquel - 3 big doses - because when they went to take him for an MRI he yelled because they weren't taking his "bad leg" into account so they tied him down and gave him seroquel. When I got there he was tied down, couldn't walk, they were trying to reason with me that he should go into a nursing home.
I said ok, here's why he was yelling, take off the strings.. a few hours later I asked them for a walker and got him to walk to the door and back. The next day he was much more normal. I kept him in there for the "3 midnights" rule in case I needed it, but got him home and within a week he was pretty much back to normal. I am convinced, however, that in my absence they would have done CPR no matter what papers our daughter gave them (she did take them in)
The three midnights: My understanding is that if someone needs to go into a facility for "rehab," Medicare (note not Medicaid) will pay for up to 90 days if they come from a hospital where they've spent three nights.. either right from the hospital or within 30 days. I wanted to be sure I could get the advantage of that if he was in worse shape than I thought. scs - can you correct me if I'm wrong on this?
I thought in another thread it was said that even with a directive, when you call in 911 they have to do CPR no matter what. Thus the reason to call hospice when they are near the end.
TIA - I have been hearing this commercial on the radio by some Stroke association telling you if you are having a TIA to get to the ER immediately for treatment. Otherwise they may have a life threatening stroke. That is contrary to what is said her and my sister was told with her husband. All have been told nothing they can do but wait for it to pass.
There are bracelets and other medical alert tags that will direct rescue to no CPR. If you need them for transport to the hospital say so when you call. Just make sure all care givers are aware of your CPR directives. All hospitals now ask for living wills on admission. This is put on file on admission and must be honored. So rest easy, if you have given the directive to the hospital they could be held liable if they did not honor your wishes. That's why I shall stresss one more time..have the discussion fill out the paper work!
Last I remember, for Medicare to cover rehab or LTC costs at all, you must meet three criteria:
The 72-Hour Rule - You must have been hospitalized for at least three full days and three full nights. Many hospital stays are three days and two nights. For example, you might go in for a hip replacement on Monday morning and leave Wednesday afternoon.
Medical Necessity- Your care must fulfill the following requirements: It must be medically necessary. It must be care that can only be given in a nursing home, in most cases by skilled personnel. It must result from the condition for which you were hospitalized.
Places Where Care Can Be Given- In almost all cases, patients leaving a hospital go straight to a nursing home for further care.
no CPR or DNR?? are these 2 different orders to have?? i havent done either. not sure i could follow thru if a crisis was at hand. it may help those of us who havent done either to make a decision if we could know how many others have these in place? if its not too personal to ask? and are these two separate orders to have filled out? divvi
The Living Will can state that no CPR is to be done if you don't wish it to...which means Do Not Resusitate (DNR), which you would put on...however, I have one that says I can say "no feeding tube, trach, or other life sustaining measures" and I can pick and choose as the time arises.... Like you, I have no idea if I could follow through when a crisis is at hand....
I just have directives under Living Will stating whatever the standard is. I know when my Mom was in hospital last I told the admitting Nurse and they just wrote it on her chart. DNR and over her bed. Do I need another paper?
i have poa for healthcare and am able i guess to call the shots as they arise. it says he wants no prolongation or heroic measures if terminally ill..but neither of us put in no CPR or DNR in that poa paper. i thought there was another paper as poa you can get to fill out.. that is specific DNR orders for ems or ER.
In my state there is a special form filled out by both family and physician stating no resuscitation even if 911 is called. The form is on a recognized color paper and usually placed on the refrigerator door. Hospice requires it.
Early on all we had was CPR...cardiopulmonary rescusitation, chest compressions and breathing. Then technology kicked in....now we can keep brain dead bodies alive for days in order to harvest organs for transplant! So the terminology for DNR orders came into being. Do not rescusitate...talked about ventilators, airway tubes, pacemakers and the like. Now with the POA and living will you can even be more specific....nothing heroic, no major technology but maybe IV.s, maybe a feeding tube, no antibiotics.
Ideally you would have a living will...with of course the POA to make these decisions. For EMS/rescue/911 you just need to say you have these things and do not want any rescusitation. You do not need to have papers say no CPR or DNR as the living will specifically speaks to those issues. EMS/rescue/911 are usually pleased to know that DNR orders have been discussed as they often have to rescusitate terminally ill cancer patients, stroke patients as well as AD patients and feel guilty doing it!
Divvi the POA gives you authority to make decisions and is good all by itself but the living will can outline exactly what your wishes might be.....can be changed and updated at any time.
It can be very hard to say stop to healthcare providers...I often found myself asking families to take a moment to think about not doing anymore as it just may prolong the suffering. It is a decision everyone has to make on their own....if you are ever in doubt about anything look your doctor or nurse straight in the eye and ask them what they would do if it were their mother/father/husband. They often tell you the truth...let them go peacefully.
Now I think you asked me what time it was abnd I told you how to make a clock...sorry so long winded! :)
Thank you, scs, we appreciate your long winded replies. That's how we learn.
When my DH had his heart attack, as they were taking him up to do the stents, the doctor asked if I wanted him rescusitated/shocked back to life if that happened. I was shocked that he asked because DH is only in the moderate stages of AD and I certainly didn't want to lose him. I guess they have to ask. I, of course, said Yes, Yes!
This information in valuable and really gets us to thinking about what we will do when the time comes. After reading this thread, I will certainly say "No" when he is further along and especially if he no longer knows me or his family. Do we want to prolong their suffering....no way.
In some of these cases, what you may need is an out-of-hospital DNR. I looked in the Indiana statutes for ours, since we live in Indiana, and took it to DH’s doctor to be signed by him and two witnesses. It certifies that he has a terminal illness (dementia) and does not want CPR. It says they can provide him things to alleviate pain or provide comfort. This is just a one-page document, and I carry one in my purse and DH has one in his wallet. We have the medical POA and living wills, but they’re a lot more complicated, and have too many pages to carry around in a wallet or purse. When our home care person starts coming, this out-of-hospital DNR will be hung on the front of the refrigerator, which is where I’ve heard they look for them.
Our doctor had never seen an out-of-hospital DNR before, and made copies of the blank form for future use in his office.
Kentucky has an out-of-hospital DNR form. It must be signed and either witnessed by two non-relatives, or notarized. The doctor does not sign it. It must be given to EMS or hospital when taken to ER or admitted. I also have it in my wallet and DH's wallet and one in the refrigerator. I believe most if not all states have a prescribed form.
Hi Jan..very intresting. Sounds like a reader's digest version of living will. What I think Indiana has done is to make a simple document that can be used in place of the living will. State is to be congratulated for trying to simplify complex issues.
Usually when you have a home care agency or hospice, the DNR is one of the first things they discuss with you and becomes part of the patient's record for all caregivers to follow.
Dazed, ... there is another factor in your post. If I was standing there with my children,.. (in the hospital) and the doctor asked me if I wanted him rescesitated, etc.etc., I would think to myself, "I can't say NO in front of the children..." How often we considered what everyone would "think" if we were to say the wrong thing. So, I intend to be sure my children know about his wishes before the occasion should arise. At that moment, we would not have time to explain anything-even if we were thinking straight.
Last fall when DH was in the midst of a bad spell I told my daughter if he got bad and had to go to the hospital I was not going to do recesitated. She said " well, Mom let's just wait and see later". I think children may be an issue sometimes. I plan to talk with them about this as he gets worse.
Nancy B, that's really something to think about. My children were not there at the time so that was not an issue this time but I do need to discuss this with them. I think they would agree as he gets worse. In fact, my older daughter asked this weekend if any of her Dad's relatives had AD. I told her No, both his grandfathers died with heart attacks in their 60's. She said "So they have blood pressure medications, stents, cholesterol medications and other things to keep them alive now so they can live long enough to get AD?"
Children are often an issue.....important to talk about it to gain consensus but remind them who has the POA. Guilt ridden relatives, folks who were not there for all the grief are particularly toxic! Again, want to do everything to save their beloved relative.
My adult children were upset when I had an organ doner sticker put on my drivers' license. We have since discussed end of life issues. They understand our wishes and we all feel better now.
Last night my sister and I were sitting in the den and I said to her, 'I never want to live in a vegetative state, dependent on some machine and fluids from a bottle to keep me alive. That would be no quality of life at all, If that ever happens, just pull the plug.'
So she got up, unplugged the computer, and threw out my wine.
Nancy B I do not doubt for a minute that YOU did the right thing. We all have different issues at stake but in the end the reality is that our spouses have a FATAL disease. There are quality of life issues at stake and eventually we are ALL going to have to make some tough decisions for our SPOUSES not for OURSELVES. I support you in not running to the ER or calling 911. I am sure that in the future that there will other episodes that present themselves and you will have to make the decision for your spouse. Do not second guess your self on any decision that you make but please do continue to turn to us for support. I am sorry that I have been out to touch for the last couple of days and am very in this post. We have this group for SUPPORT not for judgements or critizisms. I love you and am thinking of you and the entire group daily. Phyllis
Thanks Nancy!! Mary I am just tired. He had to go back to the Orthopedic Hospital. The Doc thought he had damaged some screws in his artifical knee when he fell out the front door, supposed to be an hour fix. When they go in the OR it was the femor and the femoral anchor that were shattered. So ANOTHER 6 hour surgery with horrendous anesthia side effect. Half a day in the ICU and now in a skilled nursing bed with a 24 hour RN. Of course he is begging to come home ,NOT ,he begged the surgeon as soon as he came out of ICU, but he still has 2 drains, catheter and IV. Plus, he is 4 hours from home. I am not going back over until the surgeon asks me to. He is in a private ortho hosp they have gourmet meals and 24 hour on the floor PT. He is where he needs to be, SOOOOOOOOOO I guess we will back to the full time home care aid?? just do not know for how long. I am taking advantage of this hosp stay and recharging my batteries!!!!!! AND I DO NOT FEEL GUILTY!!!!!!!!!! JUSt like a kid out of school for summer break!!!!!!!!!!!!!!!!!!!
I've spoken to my daughter about my husband's end of life issues, and I guess mine as well. I obviously had a very easy job of it. I was in therapy for a short period last year, and the therapist gave me that discussion as "homework". Not officially, but that was how I saw it. The therapist was right. I told my daughter all of my secrets about what I was going to do when the time came, and it turned out that I actually had already told her all of it in bits and pieces. It gave me peace to know that the agreed.
Shellseeker you are a wise woman to take a break when the chance came. Your husband will most likely be so confused as to time that he won't realize you are not with him every moment.