Have any of you written out detailed instructions about the kind of end-of-life care you would want for yourself?
I certainly have thought about it more with the health issues facing many of the older ones in our family.
Recently a relative with dementia was diagnosed with a large blood clot and prescribed blood thinners. The general idea seemed to be that it was lucky this was found in time so that the clot did not break off and cause a massive, possibly fatal stroke. But then afterwards, the thought arises that perhaps a massive, fatal stroke would have been better…the dementia is so distressing.
What would you want if you had dementia?
@lizardly I am so sorry for your sudden loss. My aunt died on Christmas 2 years ago and it is really a tough thing to holiday about.
I’ve had explicit advanced directives since my mid 20s. Everyone should!
My dad keeps putting off writing his advanced directives and I wish they were in place now. Assuming he makes it out of the hospital this time, we’re going to have to insist he do it immediately.
I appreciate your post, @JustaMom5465. I will be thinking about that article for my dad and myself. My mom was in hospice for twelve hours before she died. She did okay the first couple of days in the hospital, when it was just a stroke affecting her left side, but then when it became clear she couldn’t swallow, needed a feeding tube, then was sliding down to needing a breathing tube due to pneumonia, I started thinking about where to draw the line. Meanwhile, she had various oxygen masks that were uncomfortable to her, couldn’t get up to use the bathroom, and her veins got harder to stick. She was in more and more pain and had no prospects for getting better. I got the elusive doctor to come talk to my dad and lined up hospice people to talk to all of us.
We didn’t know she would die so quickly. My brother and I had resolved to take turns being with her around the clock and figured it would be three to five days. Her hospice experience was not perfect. It was the no food or drink/ sedated with Dilaudid and Ativan/no CPR exit described. That she died so quickly confirmed our decision to let her go.
@MaineLonghorn - I’m sorry to hear of the recent setback with your father. This must be so hard on you and your family.
@Lizardly - My MIL passed away suddenly at the end of September. We live a 4 hour flight away as do three out the four siblings but like your father, my FIL lives in an area he knows well, still gets around well and has friends. He has no health issues but I was a little concerned about food until I found out that he gets meals on wheels four days a week. I always thought that MOW was for low income people, but it’s not. He pays about $5 for each meal and it’s a nice plate of food that comes around lunch time.
Let me add that even with written advance directives the family has to follow them. My dad, the health care POA, the guy who got to interpret all the vague language in the written document, had the hardest time letting go. The positions he took were not unreasonable, but were not in accordance with my mom’s wishes.
Thinking of my own situation, I think my kids should be my POA. They listen better than my husband and I think will be more likely to execute my own wishes instead of their own.
@lizardly, I think choosing a POA for those reasons is a good decision. And easy to include language that allows one of them to bow out if they are far away at the time. My own DH put both me and our daughter on his because he is more … um Doctor accepting? than I am and he was honestly worried that I would not ask for aggressive treatment. Since I know that is what he would want, of course I would! But he put our daughter on as well to keep me honest I guess. Because I put in mine that I don’t even want anyone to touch me and no needles at all if I am not awake enough to give my own consent. I’d rather die absolutely. (also I watched my grandma and mother die of dementia and am more worried about that than a heart attack that might be “curable”. ) My dad has me as his POA even though he lives with my brother because my brother is very soft hearted and would hold on to every minute and Dad knows I’d let him go per his wishes.
@MaineLonghorn I am so so sorry to hear about your dad and the ICU. I forgot to mention it out loud but I did send you energy when I heard. hugs in the hard time!
We have a MOLST, which states that my mother is DNR, no artificial hydration or feeding, and no transport to hospital. At one point she was on hospice, but we kept these limitations so that the assisted living has to call me before sending her to the ER (they will send her with a splinter!), and I am supposed to be notified of hospital procedures (in one case, the hospital inserted a nasogastric tube without calling me and I told them to call me in the future. They also gave ativan and after talking with PCP I nixed that).
I have an invoked proxy due to my mother’s dementia, as well as P of A.
So far I have been in two situations requiring a decision about hospice versus continuing care. I volunteered for hospice, have read many books about end of life philosophy and practice, and have always been interested in these issues. However, both times, I rejected the hospice path in favor of medical treatment. I surprised myself.
The first time, we thought it was colon cancer, but a second MD thought it was diverticulitis. One surgeon wanted to operate. We said no, and put her on hospice. However, I decided to consult another surgeon, one who was interested in the “intersection of surgery and palliative care.” This second one did a low impact sigmoidoscopy, stopping at the first sign of pain on my mother’s face. This was a pallliative approach. She confirmed it was not cancer and gave my mother strong antibiotics. We went from having hospice nurses and the kit with morphine etc. to my mother returning to (relative) normalcy.
Flash forward a year and my mother was in the hospital looking like she was having triplets, after two days of vomiting. Intestinal blockage (not constipation as first thought). The diverticulitis had progressed. She had a nasogastric tube in and went into delirium, trying to pull it out, lunging for water in the sink which could choke her etc. The hospital had someone sit with her 24 hours a day. Terrible suffering. Pitchers filling with green bile, horrible.
I called her PCP, the cardiology NP, our palliative care nurse, hospice and talked with hospital docs. And my brothers. As P of A I had to decide whether to do surgery or not. I decided to let my mother go and called hospice to come pick her up to take her to their beautiful facility, My mother’s delirium was a factor: as a person, she was just no longer there. We wanted to end her suffering with the NG tube.
Well, hospice told us they would have to do an NG tube too, and a surgical vent of her intestines, which were so full of air and bile that she was hugely swollen. Noone can die comfortably of bowel obstruction, without these interventions, they told me.
So I and at this point my brother, reversed, sent the hospice nurse away, and asked the surgeon to do the colosostomy they said would relieve her. She did better than expected with the surgery. Once the NG tube was out and she left the hospital, she returned again to (relative) normalcy. There was an unspeakable period in the hospital after surgery when her system emptied out, but after that everything stopped at the level of the colostomy,
As I have written, the colostomy poses some issues at assisted living and as long as I do the wafer changes, she avoids nursing home (or I can hire someone, always an option.) My mother’s dementia causes her to constantly ask what “this big thing” is while she pats her colostomy site, and she thinks the stoma that sticks out is poop and calls staff all the time to empty the bag when it is, in fact, empty.
But I left her last night in her new Christmas sweater, (Maybe) reading the paper with the tv on, before dinner. She seemed so unwell last week but yesterday she even worked on a puzzle (or seemed to) downstairs. Grandchildren visited over the holidays and although she gets them mixed up and tells them I am her mother, and doesn’t know their names, she has fun with them. Enjoying things as much as she can.
I guess my point is that these end of life decisions can be pretty darned complicated and I am afraid of giving up too early, but also afraid of holding on too long. This post doesn’t relate to any previous posts. Everyone is making good decisions. It is just very tough in a lot of ways that medicine gives us this burden of decision-making, with parents who are not competent in one way or the other, no matter what our parents may have said when they were competent.
As the good days wane and the bad days increase, I confess to wondering how this will all end and what role I will have to play in that. I kind of hope she dies simply in her sleep.
We have Advance Directives, but you can’t predict or specify everything. I have told my kids not to approve curative care if I have dementia, but where will they draw the line?
So important to pick a POA for health care that aligns with your values. H’s family has a big divide with some people feeling that aggressive treatment no matter what is always the answer. H never had any of his family as his proxy or even back up. He knows they would blow off his wishes.
DH and I did our advanced directives a year ago. Both kids have copies of them, although only one of them is given authority to be the point person in talking to doctors.
My mother is 98yo with severe dementia - she is DNR, comfort measures only.
I want to echo compmom. While the details of my father’s situation are different, there are times of angst and worry, even with the MOST form signed and available, even with hospice in place. My father’s begs for death one day and begs for better health the next. I wish I could say I had a level head, but I do not.
My mom wrote her wishes 20 plus years ago when she wanted to live forever. She wanted all the care possible. Now she has wished she would die at least weekly if not daily, for the past 2 or 3 years. She’s tired, confused (dementia), just worn out from life and wishes god was done with her here. I hope she passes is her sleep so I don’t have to figure out how her end of life care should be handled. But so far, she’s healthy as a horse, even though unable to care for herself in almost every single way.
My loved ones are also physically fairly strong although very tired and confused. They still know all of us kids and most of the grandkids. Dad always says he feels lousy but that’s how it is.
They could well continue another decade, absent some sudden horrific infection. Their memory gets shorter all the time.
Anyone have experience with Silver Sneakers? For themselves or their parents? I came across a few older threads on it. I think my dad would like the class and if he gets access to an indoor pool that would be even better for him.
Wednesday we were talking about possibly signing DNR orders. Friday morning, Dad started breathing on his own and they took him off the ventilator. Saturday, he sat up in his chair, watched TV, called me, and walked a couple of hundred feet! Such a rollercoaster. He’s been moved out of ICU into a step-down unit. They told us Wednesday that his yeast infection was probably back. Now they say the culture came back negative. It’s all good news, but so exhausting. What will happen tomorrow?
@Lizardly - the challenge with the Silver Sneakers program is that the reimbursement rate is so low that it is hard to find a place that will accept it. My old gym accepted it but they had to add an additional fee because they were literally losing money by only accepting the reimbursement.
I thought all YMCAs offer it. Or some community centers. My Y offers the classes. Google it.
ML, we’re with you. Medicine can be imprecise. But we’re sending the positive and hopeful vibes, in prayers or other forms.
Silver Sneakers varies widely. Not accepted at some Y’s. Full membership included at others. Our local Y says it is 1/2 off membership, but when I call Silver Sneakers they say it should be totally free. I don’t understand how Y’s can offer free membership. Our Y is not inexpensive. On the other hand, my Medigap policy is definitely not cheap either.