What to do if parent's current stated wishes (with dementia) do not match their previous health care directives? I'd appreciate thoughts.

Hello Ch,

I’m so sorry that you are going through all this :(

You most likely already know this, but, I’m going to tell you anyway, just to maybe give you some reassurance. The reason there has to be a notary present when someone signs the medical POA and directives is so there’s a witness to the fact that they are in their right mind. This legal paperwork can’t be changed by anyone other than the person who signed them. Since your Mom has dementia (so sorry... such a horrible disease), she is no longer legally able to change the forms... they are set in stone. Her wishes, before dementia set in, are what should be followed.

May God bless and keep you and yours.

A patient ALWAYS has the right to change their mind about end of life care. If your Mom is cognizant enough to say to an MD "No, I want to live EVEN IF it means going back to the hospital" it is likely that her current wishes will be followed. When it comes down to the end, many are afraid to die. It is up to the doctor and the POA to act in a way their believe they should. When your Mom can no longer express her wishes you are allowed to act for her, but in matters of life and death, not until then. A doctor also has a lot of power, given your paperwork, your explanations, and etc regarding at least artificial support such as ventilators, etc. But in end of life a person always has a right to change his or her mind about fighting to live. The best way for MDs to phrase things is "IF YOU DIE do you want us to attempt to bring you back". Often they don't say it this way. Almost anyone will give up ventilator and cpr. But few will give up hospitalization for distress in the end.

You follow the wishes they put in writing before the Dementia.

My cousin is having this problem now. His Mom always said if she got where he couldn't care for her he was to out her into a NH. Now she has Dementia and has to be put into a NH she wants to go back to the house she has lived in for over 50 yrs. Of course she does, its familiar to her but that does not mean she is safe there. And cousin owns a business and only in his 50s.

Its now what Mom needs not what she wants. This is where your POA comes in. Her medical should have her wishes. As her representative you should be aware of what she would do if of sound mind. The pros and cons have to be weighed. Her age considered. You make an informed decision on what the Doctor's tell you.

A doctor should never ask a Dementia patient what she wants. My suggestion would be to see if the home Mom lives in will allow Hospice to come in. If yes, contact a Hospice and ask if they will evaluate Mom. If they do except her they can get a doctor to sign off. Mom does not need to know that Hospice has been called in. The aide will come 2 or 3x a week to bathe her. The Nurse will visit a couple of times a week and tell the staff how to handle meds. The staff and you should be able to call the nurse 24/7. Request at no time the word Hospice be used. Mom can be told its just an aide and nurse hired to care for her.

Mom will get supplies like Depends, wipes etc. These supplies should be used for Mom only. We had a poster who found that in the AL her parent was in, was using the Hospice supplies on other residents. So she started keeping the supplies in her car trunk and restocking her Moms room. My Mom was in a NH, so I didn't worry about the supplies. They would have been part of her care whether on Hospice or not. With the AL I paid for Moms Depends and wipes so would not have appreciated hospice provided supplies used on other residents.

Hi,
I’m so sorry you’re going through this. My dad was diagnosed with lung cancer in the fall. He came home and told my mon he wasn’t going to do chemo or anything - he was just going to golf every day and enjoy what time he had left. He did that for a few months, but then was hospitalized for a seizure...it had metastasized to his brain. We chose for him to have brain surgery to remove it to stop the seizures.
He came out of it a little out of sorts and confused. Eventually diagnosed with dementia. Tells the doctors he wants to do chemo and radiation. He’s gone through hell with chemo and radiation, is under 100lbs and is 6’ tall, etc. This is exactly what he wanted to avoid in the fall when diagnosed, but he’s chosen to do it.
It’s so hard to see your loved one going through awful medical stuff, especially when the person you know them to be prior to the dementia specifically said they didn’t want that kind of life.
But it is thee choice. And it’s heartbreaking to watch. All we can do is try our best to support their choices now even though it’s not the choice of the person they were for so long.
I know I’m not adding much, but I just wanted to let you know you’re not alone.

I was in a different situation with my mother who was dying of cancer, but I guess you can see the similarities. Her oncologist wanted her to go through months more treatment – chemo and radiotherapy – while her physician (who knew all her health issues) disagreed. I managed to get the doctors to explain to her in my presence just how much longer she could live if the cancer re-treatment worked. She had been hoping for the same type of remission that followed her treatment 10 years earlier. The new answer was just a couple of months longer, after a lot of painful treatment. She turned it down.

Perhaps it could help if you explained to your mother very clearly what it would mean to over-ride her previous end-of-life directions. Tell her about the heavy blows on the chest to restart the heart, the broken ribs and the pain from that. She is quite possibly thinking that she could go back to the way it was ‘before’. Tell her the true news about the future, don’t sugar coat it.

She may not be able to change her mind now – other posters are not all agreeing – but it will help you to feel better about the outcome, if she makes the same personal decision in what is almost certainly in her best interest.

Take it one day at a time and one decision at a time. I don't see what else you can do.

For me, with hospital visits, the key question was "what am I expecting them to be able to do?" And if there isn't anything - anything that will improve her physical wellbeing in the moment, that is - don't go. If there is, go.

Speaking generally, not about your mother in particular or about dementia as a complicating factor, the trouble with advance directives is that we make these decisions without having actually experienced the situations in which they may come to apply. For example, we might think "no hospitals, I wouldn't want to live in that state after a stroke" but then - hemiplegic, incontinent, unable to speak - suddenly Not Dying overrides everything else.

My late aunt, who by the grace of God did finally pass in peace, was a doctor and knew very well the predicted course of Chronic Myeloid Leukaemia - that it eventually shifts to the acute stage and will carry you off. She wished to be carried off in private, alone in her apartment; and to that end withheld information from everyone except her GP. By chance her DIL was visiting at the time when things went technicolor and was able to take advice and persuade her to be admitted to hospital; here her distressing symptoms were relieved, and she was able to spend her last day or two calmly and to see her son before she died.

It is fundamental to respect people's wishes, but this has to be balanced with responding to their immediate needs which may include protecting them from fear and physical distress - they have to be allowed a change of heart. I hope you have a doctor you can lean on for help with the impossibly difficult decisions you're having to make?

Chdottir, my mom was very clear that she didn't want to be kept alive if death was inevitable. She had DNR/DNI form on her from the moment my dad died (they were 74).

But after a vascular dementia dx at age 90, mom was still technically competent. So when a UTI went septic and she was taken to the ER, gasping for breath with worsening CHF and fluid buildup around her lungs, she was mouthing "do something". Quick thinking POA brother asked if there was something aside from intubation, and there was! A bipap. Mom recovered, diminished, but recovered.

Then her heart stopped working well and she needed a pacemaker. I was distraught at mom's physical and mental condition, but we asked mom what she wanted. She thought about it and said yes, she wanted the pacemaker.

I believe that was mom's last hospital stay. She went back to the NH so diminished and so frail, it looked like another ambulance ride would do her in. We opted for palliative care at that point, meaning that the NH would treat in-house and call us before any ER trip. She lasted another 2 years.

Mom declined slowly from there, fell, declined steeply. We got hospice in and she died 3 days later.

Advice? None. You have to do what you can live with. My mother would have been appalled at her condition, when she would say " shoot me if I get like that". But her older self wanted to live.

I like Barb's idea of palliative care, focusing on quality of life without any heroic measures. I think there can be a very thin line between allowing natural death and hurrying it along - there are all sorts of very simple interventions that can hasten death if they aren't taken, everything from providing pureed food or supplementing calories to withholding CPR. One of the reasons I'm very resistant to the idea of people asking for medically assisted death if they should get dementia is that I have seen people who are living somewhat happily after their diagnosis. In my mind it is like imagining a life altering physical challenge like quadriplegia, how many hale and hearty people say they would rather die and yet fight to live after the fact? .

I just finished signing the documents for hospice care for my dad who has dementia. He’s 90. I’m curious how old your mother is? It’s interesting to me that no one here has really talked about the damage that can be caused to an elderly body if resuscitation is used. When my dad was in the hospital with Covid they discussed this with us. Once we understood that bones can be broken, and that it’s very extreme and frightening for the patient, we agreed to DNR. Dad recovered, and we waited on hospice care to see if he would benefit from OT and PT, which hospice doesn’t allow. He was unable at the time to walk, due to the weakness caused by the Covid and resistance to exercise due to dementia. He was able to do some of the exercises but it wasn’t enough to really strengthen him to the point where he could walk or even transfer from one seat to another on his own, so after we received feedback from the OT that he really wasn’t improving, we decided to go with hospice. The nurse who did the assessment was very careful about not mentioning hospice, none of us in the family have mentioned hospice to dad either, because we know that he wouldn’t understand, he’d think it would mean we’re “letting him die,” which is a common confusion for many regarding the service. It’s actually a healthy progression if the patient has a DNR, and doesn’t respond to physical therapy. The focus is simply on comfort care for the individual.

If mom improves, she can come off hospice which is also a nice thing to know. The confusion that comes with hospice is that when you’re dealing with someone elderly, it’s not necessarily an immediate end-of-life situation, as it would be for someone younger who has a life threatening illness. Some patients can be on hospice for six months or longer. The nurse who chatted with me yesterday while I signed papers, explained that there are several assessments done throughout the months after hospice is started to assess the patient’s progress. The patient can even stay with hospice for longer than six months if they are not improving.

Even tho a person has dementia, she sounds like she has told you her wishes.

She wants to live.

So, you should abide by her wishes.

It's her life, not yours.

Hospice should be called in When your mom is ready, not because you're ready.

People should have the option to say what they want.

My Dad is going to be 97 in a couple weeks. He has Dementia.

Wold I want to live like that? No

BUT, my Dad is living in his own home because that's what he wanted and he has 24 7 Caregivers and yes, all his savings is going to that and there won't be any left for an inheritance.

But, he is getting what he wanted.

He tells me he's going to live to be hundred and I tell him I'm sure he's going to make it. 😇

You might say who would want to live to 97?
Ask someone who is 96. 😇

Prayers

It is easy to say "I don't want anything done" when death is not staring at you straight in the face. Keep that in mind. Things can radically change when imminent death draws closer.

Regardless how bad the Alzheimer's disease, they have their lucid moments. You cannot possibly measure quality of life based on your own level of function. They have their own level and as long as they are comfortable and not suffering they have quality of life.

Hello. this doesnt concern your situation but i have a tattoo on my chest that i had done 25 years ago.

it says ...

no code
no cpr
stroke meds ok

i have paperwork too since the tattoo will be ignored but maybe it will cause someone to look for the paperwork and know im serious.

Maybe a middle ground. Your mother now says she doesn't want to die and is willing to be hospitalized. I believe this should not be disregarded lightly, however no lifesaving measures - just treat the problem and let nature takes its course.

Another option, depending where mom is on her life cycle, would she qualify for hospice? If so, I'd get hospice in for a consultation and to evaluate your mother. If this is a possibility, check out more than one. Using hospice does not mean your mother will die tomorrow (though it does depend on when they are brought in) - my dad was on hospice for about 6 - 7 months. My family used a not for profit hospice for dad's end of life. They were wonderful.

Hospice can make her less anxious as her life winds down. Their responsibility is to keep her comfortable and let her life end with dignity. Some people have been known to graduate from hospice back to their lives as their health improves. And if your mother rejects hospice, then so be it, it is after her life.

I wish you all peace as you struggle with your mother's changes.

Imho, of course she is going to continue being confused as her brain is not working correctly. Perhaps the best option would be Palliative Care.

Hoping for you that some medication adjustments will make her more comfortable.

Making decisions about what treatments to allow and what not to allow is difficult, even when they indicated their wishes many years ago. One thing staff in MC had told me is they can't force anyone one way or the other. Despite dementia, they still have their rights, so if mom says now she wants help, I would provide it within reason. Major surgery, not likely. CPR or feeding tube, no. Definitely no ventilator. Treat UTIs. Treat broken bones (minimally if possible.) If some medications can alleviate what causes her breathing problems, try them.

Some treatments go above and beyond helping someone, like CPR and ventilators. Treating something that doesn't take herculean efforts may be acceptable, especially if it can relieve any discomfort she has and hopefully wouldn't require a hospital stay. If you do enlist hospice, just know that you have to notify them before you take her to the ER.

In general, what I recall that mom and dad filled out was to reject those excessive treatments, like CPR, feeding tubes, etc. For some reason, their choices on those forms (there were many pages!) were never given to me, but I recall seeing them when they were filling them out. My mother was in MC, more or less stable. She took BP meds (long time) and was overweight. She was fully mobile on move in, graduated to a rollator after about 2.5 years, then after 3+ years, refused to stand or walk unaided, so it was wheelchair for her.

Around Labor Day, they called from the facility and put EMS on the phone. Mom had what they suspected was a stroke. She was refusing to go with them and they tried to get me to give the okay. I questioned what the plan was - testing and maybe hospitalization. What exactly would they be able to do with her? She was 97 with dementia, already wheelchair bound and now the stroke impacted her right side (dominant.) I knew she would NOT like being in the hospital and I highly suspected she would fight the testing. I asked to speak with one brother. Our decision (mostly mine) was if YOU can convince her to go for testing, take her, but NO hospitalization. Younger, no dementia, perhaps they could help stabilize her or make things better, but seriously, what can you do after someone's had a stroke at 97? She still refused. She actually asked everyone who called the EMS and when the MC nurse said it was her, mom tried to kick her! The MC nurse called hospice, who denied (based on old medical data on file, because she'd missed the April '20 appt due to virus.) Nurse did TeleHealth and had them come back and they still denied - oh she hasn't lost weight in the last 6 months. WTF? She didn't have a stroke 6 months ago!!!

So, nurse got PT in to see if they could improve her ability to feed herself again and assist in pivoting from bed to wheelchair to toilet and back. She finally was able to get a weight and she DID lose weight, and finally hospice agreed. She remained relatively stable until she had another stroke mid-December. That finished her off. At least they had a spare room in AL where we could be with her (no one was allowed in the MC unit.)

So, if there are simple things that can improve her current condition, treat UTIs, keep the fluid buildup at bay, etc, I would do that. You CAN get her these treatments and medications before getting hospice on board AND continue them. Just because she's on hospice doesn't mean you throw out all treatments and medications and just wait for the inevitable! IF she needed to be checked and/or add medications, you can get off hospice, get it done and go back on. I would do those if it would make her feel better. Nothing is going to prevent the end coming, but if it can be easier with simple treatments and some help from hospice, go for it.

Thank-you everybody for all the thoughtful responses. It is very helpful!

When she was in the hospital I spoke with the doctor and he said she didn't qualify for hospice. I've read on some hospice websites that you have to be at 20% heart function to qualify. Mom is at 25%.

We had a family zoom meeting last night to discuss this. My siblings are amazing, can you believe that there are six of us all on the same page (with variations)?!?! Basically we will be playing it by ear, and might be having more discussions with Mom if one of us catches her at a particularly lucid time. If she goes downhill again and says she wants to go to the hospital we will do that. If she says she would prefer to stay where she is and just get meds to stay comfortable knowing that it means she will die sooner we will do that. In the meantime I will be calling different hospice organizations so we can have one chosen in case it is necessary.

I can say that we all agree that there would be no CPR, no ventilator, no surgeries, no extreme measures of any kind.

2 things you need to help your mom.
1 - She should have a power of attorney for medical decisions already drawn up. This legal document gives you, or the person maned in the document, the power to make medical decisions for her. Yes, you can use the POA to set up hospice for her.
2 - She needs to be evaluated and declared "mentally incompetent." Then, the next of kin or holder of the POA can make decisions for her. If she is considered competent, then she can make her own decisions - even cancelling legal documents that she had previously drawn up.

I suggest you talk to her doctor about her case. Since you have the POA and she has dementia, her doctor should be talking to you about her medical care. Ask the doctor to approach "what does she want" options from another angle - he/she should ask, "what kind of life do you want to enjoy now?"