Yes. It’s hard and sad. My grandfather died two years ago. He was 97 and a veteran of WW2 and Korea. He was active, strong, and mentally sharp. A few weeks before he died he was told he had colon cancer. He chose not to treat it. I admire him so much for the way he bravely walked through the last few weeks of life. That courage left a legacy he couldn’t have anticipated.

Everyone should watch this! Hugely important topic and kudos for bringing this up. My mother in law was diagnosed with Alzheimer’s several years ago, during the depths of the pandemic. We were thoroughly unprepared for the situation and the lack of support. We (husband and I) both work full time. Dozens of health emergencies where doctors patched her up and booted her out of the hospital and into our care. The county department on aging provided “assistance”. by sending a box of incontinence supplies (wrong size) three months after we asked for help. I’m not exaggerating when I say that situation nearly killed all of us. My job allows two weeks off work for this. It took her four years to die. We cannot keep ignoring this crisis. This is a product of pure for profit thinking and misogyny (“women will just take care of this stuff”). Please keep talking … I appreciate you!

Thanks for raising this subject in a thoughtful way.

This video and these comments are exceptionally important. Don't kick yourself for your decisions in hindsight Angela, at the time, an often overwhelming time, they were right. I went through the same with my mom. She had a a form of mild dementia and then had a first stroke. Like you I opted for the surgical intervention with the first stroke as it was hard to know if she would recover fully or not (Kaiser here was great, it was my decision as her caregiver, in our family case it was me the son rather than my sister who took on those duties as I was more able, and they gave me all the options/possible scenarios and did not push). She recovered partially but still needed full time care in Assisted Living after (very thankfully she had the means financially to do so) despite the heroic work done for her at the exceptional RIO (Rehabilitation Institute of Oregon - also avail to those who can afford it.) Here is the point of my post prompted by your spot on video. Mom gave the tremendous gift of making clear what she wanted - no treatment if she had another stroke. We were already set up with me knowing her wishes clearly before the first stroke as well and why I had Power of Attorney for her after her dementia diagnosis. The second stroke came and we did not treat, Kaiser again was great and did not push, in fact the surgeons and doctors said they thought I was making the right decision not to treat. Kaiser hospital has special quiet comfortable homey room especially made for those accepting end of life more naturally. Then she went home to the Assisted Living (who were also great) to wait out her final week under hospice care (yet again Kaiser was great here with home hospice). It was a true generous gift for us to have talked all this out ahead of time so I was legally and mentally prepared to act in accordance with her wishes. She left in a dignified way in comfort because of the decisions we took and had prepared for. I have since gotten all my own health care directives, end of life planning, POLST docs done even though I am younger (50's) so my own wishes will be carried out and to ease the physical and mental burdens on who will be making decisions for me/caring for me if/when I am unable. Death in our complex legal and political systems is complicated and like any other great important part of life (college, having a child, profession, saving for retirement, investing, etc.) it is so much better to prepared ahead of time. I'll use that word once again because it is so fitting and true - it's a gift! Truly blessed are the caregivers Angela (I thank you for being one!) and your video is right to point out that our system does little to support them, unless you can afford Kaiser, RIO, Assisted Living, etc., but they are luxuries for the fortunate and it's still very hard with those helps! The government does precious little to help. For those who contend that we are "God's country" and/or "the greatest nation on Earth", let them see how great or holy ordained they think this country is when navigating end of life care for a loved one not financially fortunate (and here I don't mean poor....for all that care you need to be actually fortunate and prepared which is maybe the most damning!). Sorry for this ramble for anyone who made it this far. Angela's comments today really struck a chord. If you made it this far, give yourself and loved ones that gift -prepare. 🙏❤️🌎

I’ve read two books in the last few months that have helped clarify my views on caregiving and end of life care. Who Cares: the Hidden Crisis of Caregiving and How We Solve It by Emily Kenway, and The In-Between by Hadley Vlahos. As a society, we desperately need to stop ignoring this issue!

Angela, this reminds me that even in death we have been conditioned to look away from it. Rather than returning our bodies to the earth to feed the soil, many of us are influenced to opt to embalm and preserve with nasty chemicals in sealed coffins.

I lost my Mom to dementia and then my Dad. My Dad had taken care of my Mom by himself for seven years before she spent the last two years in dementia care. After a series of falls and rehabs, he gradually wore down. He elected to not get operations for his kidney problems. Financially, my sister and I were fortunate that he had saved money and had long-term care insurance, but most people don't. In his last two years, my sister and I each spent about 4 months a year caring for him. I miss them both.

It's going to be a big issue in a couple of decades when a labour shortage starts to really kick in.

@lisasmith2288

Ай бұрын

A couple decades? It's horrid NOW! Anyone who could retired during covid, died or took disability. Being a nurse sucks these days.

@nate4fish

Ай бұрын

@@lisasmith2288take a look at other countries farther along the curve, it’s way worse than the USA

I lost my dad 5.5 years ago to idiopathic pulmonary fibrosis. He'd known for years that it was what would kill him, and he moved close to me when it got to the point that he started needing help. At every appointment, the doctors would offer some new expensive medication that might give him six more months. At every appointment, we would discuss it, then refuse it, because six more months didn't mean six more healthy months. I vividly remember, about a month before he died, during our daily check-in call: "How you doing today, Dad?" " Okay." "Not having a great day?" "Honey, there are no more great days." It broke my heart. It also firmed my resolve to not take extreme measures for anyone at the end of their life. Because while I would love to have more time with my dad, I wouldn't have wanted him to have to endure even one second more of "not great" than he did.

I've said this for years. It is not just the USA. I've seen it in the Netherlands. Nowadays even when someone doesn't want treatment anymore when they feel their life is fulfilled, it can take a long time before doctors decide to give permission for euthanasia.

I think a lot of people have learned this about dogs, because it is more obvious how selfish you feel when inflicting an extended life of misery on an animal, for your own benefit. There's usually a pretty clear point at which they obviously give up, and we know to let them go. For ethical reasons, having anyone besides the elderly person themself decide when to go is *rife* with the potential for abuse, but I think it is telling, the number of medical professionals I know who strongly favor DNR orders, for themselves.

We almost never ask, or listen to the only people who should actually get a day in end of life care, the people being cared for, I see and if life care givers repeatedly talking about patients literally begging to be let go while family insists on forcing care on them..... The greatest thing for so many would be being allowed to live until the day they died, and that simple desire is being denied to do many

I think we should normalize talking to our loved ones about our end of life care. My mom has been having these convos with me and my brother since we became adults. She's very healthy and active in her late 60's so we are probably a decade or two away from this issue but it has helped me to start thinking about my end of life and what I want. My partner and I are having these conversations with each other as well which I think will help lessen any chaos or drama that happens after deaths because loved ones don't know what their person wanted and everyone's got conflicting ideas about what should happen.

The last year and a half of my mom's life was the hardest time of her whole life. She was 74 when she passed. First she fell and broke her femur and had surgery. Then from being immobilized she developed a wound on her heal. (She had diabetes for several decades, lost he4 sight, kidney and bladder infections constantly, multiple toes amputated, meaning multiple medical traumas.) Within 6 months she fell and broke her pelvis, same s8de as her femure break and heel wound. 12 days before her 74th birthday they amputated her left leg at the knee because the wound on her heel became sepsis. When she woke from surgery she was confused, in extreme pain and was asking why he leg hurt so bad. (One of my brothers had power of attorney). I had to tell her that they amputated her leg. She responder with "Why can't you guys just let me die!?" The infection basically put her into what looked to me like a coma. All she could do was sleep, refusing to eat, drink or any manner of consciousness. This was the third time being placed into a rehabilitation center, but no real rehabbing. When i went to see her on her birthday, she was mostly a shell of who she use to be. I have videos of that day and 1 year prior. Clearly in comparison those two videos shows the dramatic change. Within a few monrhs she was diagnosed with 4th stage brain cancer, found only because she fell out of her wheelchair twice that morning and was sent to get an x-ray because she had an obvious egg on her forehead. She passed 12 days after that diagnosis. For more than a year she was having terrifying hallucinations and progressively more difficultly with verbal communication. When she broke her femure I told the Dr. that she was having hallucinations, the first time I had witnessed her experiencing this. He said it's sundowners from alzhimers. I told him she hasn't been diagnosed with alzhimers and she hasn't presented with other symptoms of that disease. I told him I had worked with alzhimer and dementia patients throughout my 20s. Something else was going on. I can't imagine the pain she might have been suffering. With her inability to verbalize, she was at the mercy of people that couldn't recognize what she was really going through. And with what I've witnessed in multiple people, they could live years with cancer starting somewhere in the body and in the end it metastasized to the brain. I only wish I could've gotten the morphine for her and refuse the amputation for her.

Silent gen parents here too. It is so difficult to manage. ❤❤❤

My dad has something parkinsonsish/lbd and also almost died of pneumonia recently. He never fully recovered. I agree with this! Even tho the topic is extremely uncomfortable

@flowerpixel

Ай бұрын

Also he's had tias. I think the only reason he didn't have a full blown stroke is bc he's on blood thinners. He just turned 88

My grandmother passed two years ago due to a twisted intestine. She was 89. There was a possibility of surgery, but it didn’t have great chances of success, and the doctors said it was likely the issue would come back soon anyway. I overheard someone on the other side of the family saying that they thought it was fucked up that my grandmother “committed suicide in front of her family” because she had refused the additional care. I thought it was an incredibly fucked up and presumptuous thing to say.

I went through it with both my parents fairly recently. Are we helping people live longer, or just die more slowly? Unfortunately I think more often it’s the die more slowly side and it’s so exhausting and terrible.😢

I would love to see you become mayor of Portland Oregon. Tbc, it's not just this view into your expertise it's also about the relationship between schools and food security. ❤❤❤❤❤❤

@ParkrosePermaculture

Ай бұрын

I can't be bought by special interests so I could never make it in Portland politics. Look at what they did to JoAnn bc she was a regular citizen.