Dementia with no advanced directive; I'm terrified of making the wrong decision on her behalf.

Both of my parents had the conversation with me regarding "end of life." They did not want to be hooked up to machines nor have valiant efforts tried on them to revive them. Both of my parents had a deep faith and trust in Jesus Christ and knew their life here would be but a passing into eternal life (this will affect your end of life decisions).

When my mom ended up in the emergency room due to pneumonia and atrial fib, no one had prepared me for what she did. While I was in the ER with her, she was "disconnecting" every tube on her body! Thankfully, it was only an IV and a catheter. But, I was hanging over her trying to explain that she was not hooked up on any "life support" only an IV giving her medications for the pneumonia she had. This was the hardest day of my life! I knew that my mom didn't want "life support." Yet, at the same time, my hope was that the medications would help her to improve.

When I spoke with the ER doctor who came to tell me they could run more tests, I asked him to do me several favors: 1. Get my mom comfortable, 2. Get her moved back to the nursing care facility where she was familiar with the nurses, 3. Get hospice ordered. He was very kind and did each of the 3 things I requested on her behalf. He later told me that most families think the doctors can heal their elderly loved one and will do everything to promote that including uncomfortable tests, etc. I assured him that my mom (who had Parkinson's Disease) was ready to go home to heaven and that she had requested no life support, no feeding tubes, etc. The DNR (which another doctor and I had signed) had been in place for several years and I wanted to respect her desires when it came time for her to die.

Mom passed quietly early in the morning (almost 6 years ago). I have not regrets with any of the decisions I made on her behalf. We all loved our mom dearly, and even the nurses who were there with her showered her with such love and care.

Hospice personnel are often very helpful (if you have a good hospice group). They are there to support you and your loved one in this final journey. Their advice and counsel is extremely helpful. They should not be "put out" our offended by your questions, they deal with this daily. Ask them for their help when you struggle. You may be surprised at how easy it is for you to get the answers you're seeking.

One way to approach care of a declining patient with dementia:
Think in the moment.
Will this treatment make her feel good right now?
If it hurts to swallow pills, don't give pills.
If it hurts to have blood drawn, don't draw blood.
If it is hard to breath, give oxygen.
If her heart stops, don't cause pain trying to re-start it.

In this past week, I was just presented with this same, heartbreaking decision for my Dad. My Dad dealt with these decisions when my Mom (his wife)and his Mom were dying from dementia. He doesn't have dementia, but has a lot of health issues that have been just deteriorating his body. He was in ICU and he was of sound mind. On Friday, I gathered the courage to have the talk with him about what he would want. It was heartbreaking because I did not get the chance to get fully into the conversation. I came in, and he looks at me and said, "There has to be something better than this." I told him that I actually wanted to talk about this and was glad he brought it up. But then he started talking about poison in the hospital which was on a piece of cloth on the wall, and how it caused 9-11. The nurse then told me he has been off and on with this and thought he was watching too much news. The doctor then came in and we were discussing his case. He then asked my Dad his name, and he said Ralph, which is nowhere close. He didn't know what state he lived in, nor the president. Delirium had kicked in. We had planned on getting durable power of attorney together at the end of this month, but things declined too quickly. This automatically put me and my brother in this spot of being the ones to make these decisions, and just like you, I am terrified of making the wrong decisions.

The next day, one of the doctors called and asked for me to come up right away because it looked like he wasn't going to make it and suggested I give permission for DNR. I told him I can't decide that yet and wanted to have my brother involved. The next few hours was just pure panic as we both were trying to get up in time (I am an hour away, and he is about 3.5 hours away). We made it. That same doctor came to the bedside and told us the situation in front of my Dad and he is able to understand what people are saying and was in and out of lucidity at that time. The doctor was very direct and to the point. Because of how frail my Dad is right now (75 years old), a CPR attempt would end up pretty much crushing him. His ribs would break and probably puncture his lungs and put him in a horrible and painful spot. We were holding his hands, and he started getting agitated and pulling his hands away from us. We asked to talk in the hallway instead.

After much consideration and talk with my brother and knowing how poor condition he is in (Afib, tachycardia, diabetes, severe malnutrition, dehydration, unable to swallow, unable to hold any sustenance in, Neuroendicrine cancer originating in his small intestine in Stage 3, breathing and kidney problems and now delirium/psychosis, and considering what he would do in this situation, we ended up signing the DNR, together with many tears.

This is something we can retract at any time. On Sunday, the palliative / hospice doctor called and asked to meet yesterday. He is suggesting palliative care at this point, and we still have more difficult decisions to make as far as the risks involved with getting surgery to attempt to fix the stricture in his esophagus, and getting a PEG tube in his stomach. So far he is suggesting to not get the PEG tube because of quality of life, but another doctor in the same team is suggesting it. Everything is now on hold for a brain scan because every day, there is something else.

Just know, you are not alone. I am just trying to make sure my gut, my heart, and my mind are all in agreement and I have been researching everything to be sure we are making well-informed decisions together in the best interest of our Dad. It is finding thar balance between comfort and making sure we have exhausted any possibilities of recovery without completely debilitating him.

I am finding this site to be valuable for information and seeing/learning what others have felt and have done in similar situations.

Wishing you and your family the best.

All caregivers worry about making the wrong decisions.
All parents worry about making the wrong decisions.

If there would not be 'quality of life' - sign the DNR.
All that means is, if she passes on, do not resuscitate her.

I know of one man who said, "do whatever it takes if I die." He had a year of living hell after that. He blamed his wife because he didn't want to be resuscitated - but when asked in the ER, he said the above and the wife could only stand there. She couldn't contradict the patient.

When my father said the same thing - I stopped the nurse and explained what he was saying. He signed the DNR himself. He did not want to be resuscitated if he died.

I told my DH, if you see me put my finger in an electric outlet - let them resuscitate me.
If I am just dead, leave me alone please.

My heart breaks for you. Here are some things to consider. Death is natural; interventions may not be. Will her quality of life be worth the quantity of life-for her, for you, for anyone who loves her? As dementia progresses the person my lose their ability to communicate pain and anxiety, and their personality may change to someone very different or very exaggerated compared to the person you knew and the person they want to be. While most all of us here can give you support and hope to give you some comfort, only you can possibly know what answers ring true or best for you. My folks both have dementia of different origins and stages. I have reach the point of knowing, believing, praying that death would be merciful for them. But that is just me and my situation. Try living with each of the different options for a couple/few days and see which one is less awful (because the truth is, neither decision is really “good”). Take your time, and when you have made the decision, know two things. First, there may be circumstances that will change your decision later. Second whatever you decide at the time, you did the best you could for the circumstances and you did it out of love. Be kind to yourself. I wish you peace, comfort, strength, and clarity. Bless yo for taking this on and being so thoughtful about it.

Even with advanced directives, a DNR order has to be written with each new admission; otherwise, they are full code by default. Some people carry that yellow piece of paper stating Do Not Resuscitate signed by a doctor and POA but that does not mean they are automatically a DNR. The order still has to be written--you have to show the paper to the admitting physician then he will write the order DNR. Further, a DNR order is *NOT* written in stone. It can be rescinded at any time during a hospital stay. What you need to do NOW is get together with family and discuss the code status because when an emergency happens, it happens fast.

Great question, I’m going to read all the good replies again - I wanted to see if someone had asked my question yet - is your mother not either the daughter or the DIL of your grandmother? Can she not participate in this?

You don't have to make this decision alone. Reaching out here was a good first step but we can only offer opinions. If you can, find a Palliative Care or hospice professional to help talk you through this decision. Get as much information as you need. Try not to worry. You love her and you'll make the best decision for her because you love her. You can't stop her from dying. All you can do is try to manage her care as best you can.

A year ago, my dad, with advanced stage dementia, was hospitalized with aspiration pneumonia. I have been his primary caregiver and POA since mom died 14 years ago. The hospital social worker asked if he had a DNR; I was horrified. They suggested I contact a hospice company, which I did before he was discharged from the hospital. They (hospice) provided a nurse, a chaplain, and a social worker for me to talk to about this. I understand that he will never get better, never return to the person that I knew before, and that it would be what he would want - for us to let him go to join his family and Mom in heaven, and not be kept alive by machines. That is why we now have a DNR in place for him. This, and taking my mom off the ventilator when she went into a coma after surgery, are the hardest decisions I’ve ever made in my life. But I know this is what they wanted.....

In NJ a DNR is very simple. Its a Do Not Resuscitate order and I am surprised Hospice didn't tell u its needed. When on Hospice a person is being kept comfortable and allowed to go. If Grandma stops breathing, you really want them to bring her back to live like she is? The paperwork just states that no extreme measures will be used to keep the patient alive. CPR is very hard on the body especially with the elderly. A doctor will sign off on the paperwork. Let Grandma go in her time.

I’ve just finished reading the book “Being Mortal” by Atul Gawande. It has been recommended so often on this site that I decided I’d get it. Worth. Every. Penny. It’s a quick read — started one evening and finished the next. His writing style is comforting. Read the book. I think you will feel more empowered to have these hard conversations with your grandmother’s doctors and hospice. Several times, the author says (paraphrasing) people who have those hard conversations and make decisions before the crisis occurs are much less likely to experience depression in the months following the death of a loved one. Ultimately, you are seeking peace.

BlueJay, since your grandmother is already on hospice, you have taken the first big step towards helping her through the final part of her life. A gentle question I would pose to you : what is your grandmother's present quality of life? And do you think your younger grandmother would be happy living in her current circumstances?
I had to make similar decisions for a few people. I asked an uninvolved person what CPR was like for people in their circumstances. The answer wasn't very pretty. Injured ribs and additional problems are just a few of the things that can happen ---- and sadly, only to have the person pass just a little more in the future.
I opted to avoid further pain and suffering for my loved ones. It was a personal choice that worked for me and I wish you peace in your decision making as well.

I'd read the paperwork that has been offered and even ask details about CPR and how that works on seniors who are very weak. Since she is transitioning to death, how long could they keep her alive if they performed CPR?

Are there any other people that your grandmother may have talked to about her thoughts on this when she was able to think clearly.

Your hospice provider probably has a worksheet with questions and answers, I would encourage you to at least read it.
(I'll include a link for one - https://www.health.harvard.edu/media/content/files/health-report-pdfs/Form%202_Health%20decisions%20worksheet.pdf)

If you can't bring yourself to have this discussion then ask the hospice nurse or social worker to go over it with her, they have done it countless times and will be able to answer her questions if she has any.

A very thoughtful book that might be helpful to you is Atul Gawande's Being Mortal - this is not technical or heavy reading but a very good perspective on what is truly important as the end of life nears.

One last thought - when she says "well I don't know, what do you think" it could be that she is watching your reaction and doesn't want to distress YOU, she may be waiting for assurance that YOU are OK.

One of the good things about making decisions for someone who is close to death is that there is no wrong decision unless it causes pain. The person will die, and your decision can only make the process slower or quicker. Who knows which of the two is better? Or which they would have preferred? The paperwork for Advanced Care Directive is often very long and complex, and not suitable for your answers if you have not had a chance to talk it through. There is usually a simple option to make it simply ‘as directed’ by you, or perhaps by you and your mother. Then you make the best choice you can at the time. This is better than the option the care agency may be forced to follow to avoid litigation etc.

You love your grandmother and have her best interests at heart. She trusts you and says ‘what do you think?’. Clearly she wants you to make the choices for her, and your best guess is her best option. Have courage.