DD2 was home for a few days from college, and I told her if I go first, she will have to help dad with everything. I will be stepping her through it all, show her the documents, make a list. Also to keep dad from throwing useful stuff out - will help her be aware of valuables - again H has no idea. My breath would be wasted trying to tell H. He was almost in a cold sweat for a MD appt for him - turns out he doesn’t require surgery on his hand for the ganglion cyst, and he will be more careful with overuse with mouse at work.
I suggest that when writing a health care POA document, be specific about end-of-life care wishes. The grey areas tend to be artificial feeding and use of medications, especially antibiotics. If you don’t want to be “kept alive,” these are things you might want to nix in your POA.
How do you feel about a dementia patient who wants to live forever? How do families make decisions in this situation? Luckily, we aren’t there yet and may never be, but it does worry me.
A person with dementia is unable to make decisions so it would be a decision of the family and the HCPOA. When my parents were competent they made living wills. In addition, I asked them “if the best you can expect with any lifesaving measures is to be in a nursing home the rest of your live, would you want to be kept alive?” They said “absolutely not.” I plan to base my decisions on that answer.
My mother before and during early dementia to moderate dementia wanted ‘everything done’. In the end when she was severely demented and a emergency surgery was suggested the family doctor and I discussed it and refused.
Interestingly, if I had not had the good open discussions with her doctor before time this could have gone differently. She was a no code and I was the POA. But, the hospitalist was an aggressive surgeon. It was a long shot surgery with an anticipated year long recovery.
The family doctor was may age but practiced geriatric internal medicine as a calling and with a big heart.
Another issue with the progression through dementia is medications- I think anyone would agree that medications which affect quality of life should be continued, things to allow the person to be as comfortable as possible, but after that, what about blood pressure meds? Probably smart because a stroke could cause further impairment, but what about cholesterol meds, those are to prolong life; do we prolong life when we are no longer able to care for ourselves? What would I want? I would not want to be in a nursing home or needing ADLs & have life prolonged if I was not functioning well, but if I still had enough mental state to know people and participate in life, what then? When would I stop those meds? Others?
And tests? Prostate screening, colonoscopy, mammogram, cardiology tests, etc. when do we stop those, by choice, I mean, not be government directive; not talking death panels, just me & my family choosing.
My mother had mild frontal-lobe dementia develop in the last year-plus of her life. After the neurological tests, the neurologist went through all of her meds and the advance directives with her and us. The dr is also the head of in-patient palliative care at the hospital, so we knew that the advice he gave was well thought-out.
The DNR was important, but also how she felt about antibiotics, especially since she had multiple UTIs. Those would be ok, but none for pneumonia. Testing was fine, but treatment for cancer, organ failure, etc. was out. Although she’d had breast cancer at 60, she stopped mammograms by age 80. Colonoscopy stopped by then as well. Her oncologist did some tests because her WBC count was so high, but she’d decided earlier that if anything was found, no treatment. We entertained briefly infusions for anemia, but it would have been too hard on her.
She had surgery last summer to remove a large clot in her bladder because it gave her severe pain and it couldn’t be removed with a catheter, but that was it. Repeated trips to the ER were horrible and caused further decline, but they had to be balanced with resolving the UTI problem.
The doc recommended discontinuing all vitamins and minerals. No diabetes meds and occasional BS checks only. Keep the BP med until pretty much the end and then re-evaluate. She had an antidepressant and anti anxiety med to help keep her mentally there as well as one of the altzheimers drugs for as long as it was helping. If it was a med keeping her alive, but she couldn’t enjoy living or even understand living, then it was on the short list to go. It’s one thing to treat with no other real health problem, but at age 88, with significant issues and the treatment would prolong rather than cure, it’s another thing entirely.
We were fortunate that mom wanted to discuss these things before it was really necessary and that she wanted her children to be included. The inlaws are not that way at all, which makes things tough. Mom passed in her sleep without us having to make any other decisions, but we were armed with early knowledge to do so if need be.
Mentally there, elder makes the decision. Unable to understand, it’s up to the advance directives and whoever had POA to decide.
@zeebamom , the way you approached the meds is exactly where we are now with our Mom. I sent her a bottle of gummy vitamins, then wished I hadn’t (she actually seemed to be more alive with them). I got Mom on hospice to stop the hospital visits and the whole 10 months, she didn’t need them to stop a hospital visit. One month after they took her off… back tot he hospital. I feel so lucky they took her back after the hospital trip and jsut recertified her for 60 days. The only med she is on is her thyroid and a back up anti anxiety pill, but they don’t give it to her because she has to request it… ??? she can’t even request help to go to the bathroom!
Feel your frustration @esobay . Common sense is not so common.
zeebamom, congratulations to your family for being able to have useful discussions on this topic. As you can see from your in-laws, it is not at all universal. FIL was being fed medicines long after he had mostly forgotten how to swallow. He expected to recover completely, and would not refuse any treatment. His example is one incentive for me to talk to DH and the kids now, before it gets close to decision time.
I’m curious whether anyone has a parent or other family member who has expressed the end-of-life wish to be helped to die. I do. The family member does not have a fatal illness but she has thought about the issue of having intractable pain.
@rosered55 , my Dad did. Had it written up while he lived in Oregon, which has had the plan in place for a number of years. Unfortunately, Dad had to move to Idaho to live with my brother and Idaho doesn’t have it. So Dad had his medical plan and orders for sustaining life to “DO NOT DO ANYTHING! If I break my leg, leave me there, if the EMTs come I won’t let them touch me.” My brother won’t be able to honor it that strictly, but at least there won’t bee feeding tubes and CPR…
I haven’t updated my end of life directive given CA’s new law allowing it. I should do that. Problem in OR (and I think CA) is that you can’t get it until 6 months to the end… and as we all know someone can live with dementia years and years and years and…
Yup. And scared the dickens out of me. I agree with voluntarily, gently ending one’s life after solid consideration, when it’s about a grave illness. But wasn’t emotionally or intellectually prepared to be the facilitator.
Sometimes, the idea makes sense but we’re still too emotionally close to handle the actions asked of us.
Same here, @lookingforward.
I’m curious whether anyone has a parent or other family member who has expressed the end-of-life wish to be helped to die.
Yes. My dad has always maintained that if he gets Alzheimer’s, we should “call Dr Kevorkian”. He saw his own father go through Alzheimer’s, and it has been his biggest fear. He now has Alzheimer’s. A few times, when my mom has left the room, he has implored me to “get him some pills”. He does live in a Death With Dignity state, but he is not 6-months-terminal, and he would not pass the competency test. My mother has completely opposite views, and will likely seek out every possible medical treatment for him, for many years to come.
Does he want to die now, or does he want pills for some future date?
Probably for some future date? No details were discussed, because it’s an impossibility.
My family member might be stocking pills. I’m not sure. The family member has the typical infirmities of old age but is doing pretty well for a person of his or her age. A few years ago, the family member asked other family members if they would be willing to assist with death. I said that I supported the family member’s right to end life on the family member’s terms but that I knew I would have a hard time actively assisting, not for fear of legal repercussions but because I would just find it hard to end another person’s life. It was an interesting and uncomfortable discussion.
The catch 22 of Competency and near death are so sad. As I have mentioned, my Mom took care of her Mom through 10 years of Alzheimers. And repeated SO many times, “Don’t let me go there!”… I would have stopped it if I had any way possible.
I’ve been rethinking some things that Grandma did, like eat her denture soaking tablets. Was she confused or was she trying to get out? I have no qualms about stopping all Mom’s life extending drugs (statins mostly) Everything but the thyroid. No flu shot, no blood pressure meds.
I just came back from the monthly visit to mom, I know it doesn’t seem like much to those taking daily care of aging parents. It is the better choice for our whole family. Mom is delightful/cheerful/and very confused according to the care staff. If she was with me, both of us would be the opposite of delightful and cheerful. BUT if there was a legal pill I could sign for and give her, yep, plus I’d put one in my pocket for myself for later. It is something I’ve thought about since the time Grandma was tied to the bed (at her own home) because she’d gotten a blood clot in her leg and had it amputated. She forgot she didn’t have a leg and kept falling. Mom has forgotten how to walk often, although she uses her toes and scoots around the AL place in her wheelchair. But at some point, I can see her just parked and needing to be tied in.
It was a typical kind of hard visit. She still knew me sort of… at least she knew she knew me even though she got my name wrong. That is OK, I had just talked to my brother and then kept calling DS by bro’s name one dinner recently.
Anyway, it is a heatbreaking choice, I know pets are not people, but we love them and we don’t let them die suffering. Whay do we do it to people we love more?
I don’t know @esobay. It’s something I have wondered too. My MILs situation is probably the most heart-breaking thing I have ever seen personally.