What to do if parent's current stated wishes (with dementia) do not match their previous health care directives? I'd appreciate thoughts.
I feel my Mom currently has no quality of life (see below for background).
Back before dementia started she wrote some explicit health directives. Under those directives we would not hospitalize her again. We would call in hospice. My brother tried to talk to her about this when she was in the hospital and she said she wanted to live. Shortly thereafter she told my sister that if she had to stay in her (great) adult family home, she would rather die.
I don't think Mom can really understand her options at this point. She can communicate and answer questions, but I don't think she can really put it all together. I think when she says she wants to live, she is thinking of living like she was able to live years ago, not how she lives now. I think if the Mom of 5 years ago could see where she is now she would say, "Hospice, definitely".
I'm sure some of you have dealt with this. What happens if the family says, "yes, hospice" and when the doctor asks Mom she says, "no, I want to live even if it means the hospital". We have all the paperwork , health directives, medical POA, etc. I believe I could live with myself if I chose hospice anyway. But would that be allowed, even with medical POA? My siblings and I are all on the same page, and that page is that we hope she dies peacefully in her sleep. But that hasn't happened yet so we are trying to prepare for the next crisis.
For background: My Mom recently suffered acute onset heart failure https://www.agingcare.com/questions/mom-has-developed-breathing-problems-and-edema-and-will-be-seeing-the-doctor-tomorrow-466525.htm?orderby=oldest
She was hospitalized and after a week they were able to balance her heart and kidney functions and she was discharged with no edema and no breathing problems. A week later bloodwork shows some problem with kidney function so the diuretic will have to be decreased. Plus her blood pressure medication may need to be adjusted because her blood pressure is on the edge of being too low.
We were fortunate enough to find a fantastic adult family home for Mom. In the short time she has been there they have been great. However the hospital stay, then another change to the AFH plus a UTI (caught by the AFH), have really increased her dementia. She is very confused and angry and sad.
Thanks for any thoughts.
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?"
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.
And furthermore, that you are seriously considering the -ethics- of your situation, even though the legalities will not be an obstacle either way.
Thank you for inspiring, and affirming one more person that gets it.
Best wishes
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.
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.
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.
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.
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
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.
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.
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?
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.
We have a client who is dying of lung cancer which has invaded his trachea. He was offered radiotherapy to reduce the tumour and ease his breathing, 30 mile round trip and treatment five days running. He told me that his oncologist had said "after all, you've got nothing to lose." I haven't seen him since the treatment finished, he was doing well during it and breathing a little more easily; but I could have told the oncologist that this client finds intimate personal care deeply shaming so the oncologist had better be damned sure the client won't become incontinent. That particular client certainly does have something to lose - his personal dignity.
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.
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.
Whether to go to the hospital at all is the harder thing.
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.