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BrielleD11 Asked January 2020

Living Will for dementia patient?

My FIL's doctor is asking for a Living Will since my FIL often refuses medicine. My FIL has been diagnosed with moderate dementia. How would we go about creating a Living Will when he has such trouble reasoning, etc? My husband is his attorney-in-fact. Where do we go from here? Any advice? Anyone have to get a Living Will after diagnosis? Thanks in advance.

Need4Hugs Jan 2020
After a diagnosis of dementia, I believe his decision making skills are impacted. Get a letter from the doctor stating that he is not able to make medical decisions, and if you have HCP invoked then make the decisions for him. I had to do this for my mom. She also started refused her meds. Her reasoning ability was impacted due to dementia and I asked her why she was refusing. She gave me all sorts of strange reasons that made no sense. Knowing this, having the HCP invoked, having DPOA, and the medical letter let me make her decisions. She refused meds which were necessary, so started giving it to her in applesauce. After a while her demeanor changed again, she stopped fighting me and doctors and I was able to give them to her and she took them regularly with assistance.

DrBenshir Jan 2020
If FIL is not in guardianship he can execute a living will. If he is then the guardian can do this for him. FIL may want this so that medical intervention will not be forced on him, but he may not understand it. Write up the document. You may be able to do this with an online form that is specifically legal in your state. Fill everything out for him according to what he wants and his medical situation. Explain simply that this states what medical care he wants and doesn't want, and that this puts his wishes first. He is unlikely to read and understand it if he has moderate dementia, but on a good day he will definitely understand this simple, accurate explanation. He needs to sign it and it has to be witnessed. Make sure his doctor has a copy, and I suggest submitting a copy to the local hospital. That becomes a part of his permanent record there, and will always be available if he comes in through the ER or is admitted. I also suggest taking a picture on your smart phone so that you have that with you should it be needed in other circumstances. This lets you transmit it instantly in any emergency. This is a lot easier than looking for paper documents, and is legally acceptable.

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Llamalover47 Jan 2020
You may want to hire an elder law attorney.

disgustedtoo Jan 2020
When mom/dad set up all their EC atty documents, one long form was included, asking what they wanted done in each instance. I do find it perplexing that when we received copies of will, POAs, etc, this list wasn't provided. I am fairly certain they declined the "heroic" treatments, but don't have any specifics, so I just have to wing it.

Dad has already passed, and mom is now into year 3 at MC. In general, if it is something that is easily treatable, go for it. While it won't really improve the long-term outlook, it will make the PRESENT better. She gets her BP meds, antibiotics for her UTIs, I opted to continue her macular degeneration treatments, to preserve her eyesight, OTCs for any pain/colds, etc. For the not-too-often knee/leg pain, we can only try OTCs or injection. She should have had her knees "done" years ago, before dementia, now it is too late (she is 96.)

When she started to refuse to stand/walk without help, PT was ordered but she refused to comply, so I let that go. So long as she isn't suffering from something easily treatable, I will let nature take its course. At this stage of life (age and dementia), one can only hope that when she does go, it is peaceful/pain free.

It is odd that the doc thinks somehow magically this person with dementia can make rational decisions like this! I think what others suggested might work, to a degree - when he is in his more "lucid" periods, try a discussion about what you and he might do under a given circumstance. He might be able to make some statements about what he would prefer. If possible, record it on your phone, so you can replay it for the doc and have it documented.

Hopefully no one else in the family will "buck" any decisions made... Of course, in the moment of crisis, one can express a different wish, and that should be honored too, if possible! If it happens to be an easily treatable issue, like an infection, I would probably override and work on dad to make him see some sense (the staff in the MC cannot force a resident to take any meds or medical treatment if they are refusing, but they coax and work on them to get compliance!)

AnnReid Jan 2020
There is at least one situation in which this becomes very VERY dicey, as I learned with two of my relatives.
It is this- IF a relative has previously established that they want NO medical interventions, but then, in situations in which they are still functioning at a fairly high level comes down with an infection (in our case bronchitis/pneumonia) should an antibiotic be administered?

I DID permit an antibiotic when dealing with my mother’s care, and she recovered during each instance to enjoy several month’s more peasant quality of life.

I always experienced some personal ambivalence when I allowed it, although I was also completely content with the outcome.

Any thoughts?
cwillie Jan 2020
I think that the role of a healthcare proxy is to weigh the pros and cons and to be the one to differentiate between the letter of the agreement and the true intentions, otherwise we wouldn't need them at all, we'd just go by the written contract. In my mom's case I knew that in her mind no medical intervention meant no heroic measures, no pulling her back from the brink (or beyond, in the case of CPR). Keeping that in mind I allowed antibiotics for her pneumonia but did not send her to the hospital when they didn't work.
cetude Jan 2020
Family care conference is needed to discuss plan of care, and what to do if your FIL refuses to eat and drink. Hospice? Feeding tube? Make sure everybody is on the same boat. If your FIL is still lucid you really need to talk to him what he wants regarding tube feeding vs no tube feeding, and code status. His doctor needs to be kept informed regarding your FIL's plan of care. When I was taking care of mum I was in CONSTANT contact with my brothers what was happening and discussed plan of care. Sometimes I talked to them daily. Just to make sure we were all on the same page.

Grandma1954 Jan 2020
I agree with the POLST. Very detailed as to what to do. It is easy to change if circumstances change.
I will advise you though with ANY document you have like this you must keep a copy with you at ALL times.
I suggest that a copy be put in FIL's wallet as well, make sure the doctor has a copy. If FIL is brought to the hospital for any reason and you do not have that document with you it does not exist until they have a copy so despite what you want done they may do everything they can.
CPR works great on TV and on healthy people but on someone older, frail or ill CPR would be difficult to survive breaking ribs and the sternum during compressions is a difficult recovery.

NeedHelpWithMom Jan 2020
You could set up POLST. It is the most specific of the forms.

JoAnn29 Jan 2020
Is there a Medical Power of Attorney? My Moms read like a living will so no need for one. If none in place I would ask the Dr. how does he think a Dementia patient can provide the information needed for a LW.
BrielleD11 Jan 2020
Yes! My hubby does have Medical Power of Attorney. I'll take a look at it and see where we stand. Thank you!
I know, right?
cwillie Jan 2020
I think I would rely on something like the guides available at Five Wishes and try to bring up the topics over an extended period of time rather than all in one go. Discussing it together as part of your own health care planning would make it less threatening if he was resistant. Given his stage of dementia I think that this should be looked at as more of a guide than a legal document, to help you and the doctors make health care decisions going forward.
Is your husband also health care proxy, or is the lack of that the impetus behind the doctor's request?
BonnieW Jan 2020
Hi
could you give further info on Five Wishes or the topic you mentioned?
thanks

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