"End of Life choices" with dementia.

Absolutely agree ,

Welcome to the forum. This is a controversial topic due to religious beliefs. It would take enactment of laws that give people the choice to end their lives when certain conditions are met. It is really uncertain what those conditions should be and who would decide.

@rea this is going to be long because of how strongly I feel about it. First let me say my heart goes out to you and your husband. I am sorry so many of us are faced with this issue. I have cared at home for 3 family members that lost their neurological capacities. My sisters was glioblastoma and she was able to refuse treatment, so the worst part of hers was relatively short over her last few months. My brothers was due to a chronic illness, both the treatments and the illness took his mind away little by little over the last 2 years of his life. My dad’s was Alzheimer’s, a long slow decline. 2 of the above begged me to help them end their lives multiple times at various points along their journeys. That was soul crushing. They had been rugged outdoors men for most of their lives. Their bodies were almost too resilient or we could have just declined treatment for any opportunistic virus or infection, and let them go more softly.
And now, 2 years after the last passing, in what appears to be a healthy body, I have been diagnosed with 3 (because hey - go big or go home:). somewhat ominous issues. All are at the “we need to monitor this every 6 months” stage. The 3rd diagnosis is the only one that scares me… Parkinsonism, because I already know my mind is going.
This actually has been an unexpected gift for me, because
I have been able to make my peace with it and make decisions and preparations on how I will proceed.
They freed me to move forward JOYFULLY with the time I have left.

As you pointed out, in the USA we are limited in our power to act on our wishes even in states that allow DWD or MAID. We need to make our voices heard and try to update the laws surrounding end of life care and decisions. I am making that one of my priority EOL causes. But I admit I don’t expect that will change within my lifetime, so I have my own plan in place.

I have my POLST, Advanced Medical Directive, and beneficiary paperwork all done. I have made it crystal clear with what remains of my family and my PCP what my wishes are.
Hugs and strength to you- you are not alone.

@royce
I absolutely agree. It needs to be discussed and debated vigorously, instead of avoided just because it is hard.
Options not mandates.

@janna2 Thank you for your reply I feel for you and what you are going through. I belong to Final Exit Network, and donate to Compassion and choices. I'm glad you have a plan in place. G

My husband has Alzheimer's. I noticed he was off in 2017. His cousin, G, a Presbyterian minister who worked with refugees around the world and was 10 years younger than he, lived in Canada. She immediately applied for Medical Assistance in Dying (MAID) when she got her diagnosis of AD, a few years after my husband. She told me that she did not want to waste away and take resources from someone who could use them.
I was raised Roman Catholic, lapsed for the last 50 years, and I still had difficulties accepting her decision. We had a Zoom call with her sister a few weeks before she died, and she was a husk of the person I knew. I made peace with her decision.
In Canada, only 5% of MAID recipients have dementia and most recipients do not have strong religious affiliations. Consent is tricky. I wondered if G would manage to give consent just prior to her death.
Meanwhile, my husband is currently happy and content, and doesn't want to die. When he was younger, he was the first person to say if he got a terminal illness or incapacity, he would kill himself.
Our nephew, also in Canada, 62, had an adverse reaction to Heparin after open heart surgery, and his life was hell the last 10 months. He was unable to gain any physical function, plus had one serious infectious disease after another. He opted to die by not eating, and he was gone in a couple of days. His wife resisted his decision initially, but came to terms with it.
I haven't done much research on programs like MAID in the US, but I have read it's nearly impossible with a diagnosis of dementia.

@suzi2835 Hi and welcome to Mayo Clinic Connect! I could tell that you’ve been ‘checking’ out the discussions for awhile but that this your first time joining in! I’m glad you joined us!
Suzi2835, are you in a caretaking/giving situation at this time? Maybe you could tell us a little more about yourself.again, welcome!

Oddly my husband who has many health issues, had always had a DNR and insisted on no heroic measures. His last hospitalization we came to realize his DNR was out dated, needing a Dr’s signature. He refused to sign a new one, now feeling differently about it. He won’t really discuss it ( severe depression) leaving me bewildered.

@tsc I think you are probably right about MAIDS in USA with dementia, because the person can't really give consent , and our bodies just seem to want to keep living. When my husband and I were in our 70s we signed up for Long Term Home Healthcare. Thank goodness! so my husband is still at home and and is in good condition in the morning, when he starts sundowning, not so much. Stopping eating would probably be a choice in the future.

@rea

My husband and I never really discussed it. But because of our shared religious beliefs, probably wouldn’t have decided on using medical assistance in dying. He developed Alzheimer’s and wasn’t the same person, but he lived apparently quite happily for a number of years. The first time he got pneumonia, the antibiotic worked, but the second time, when it didn’t, I declined to have him admitted to the hospital because he would be scared and hurt and not understand what was happening. And he died quickly. My overall takeaway from this, “When the time comes, you know.”