Death w Dignity experience NSFW(?)

[Scrapr]

I may be a bit graphic here so read at your own risk. We are all going to pass & this was my experience with my late wife. Yours will be different. DwD is right for some people & not for others. About a third of people requesting DwD do not end up using the drugs. For us it was very right for us


Mrs Scrapr had been having trouble swallowing the summer of 2017. The nurse practioners were looking at GERD & things like that. It was really getting bad by Fall to the point she could only swallow liquids. Mrs Scrapr was Dx in Nov 01, 2017. (always remember that day) As she came out of the initial testing I looked at survival rates for esophageal cancer. It was very poor. I never told her & never looked again. She went through a feeding tube, radiation & chemo & then surgery in March of 2018.

Post surgery testing showed she was clear. 20 biopsies & all clear. Then the summer/Fall of 2018 she started having pain in her shoulder. Testing showed it had come back. Stage 4 at that point. The doc said "I can't cure you. She underwent more radiation then with a drug that was just out of clinical trials. That drug had saved a good friend of ours with a different cancer. So we were hopeful. But this was a moonshot....our last chance.

In February or March of 2019 she was having some fluid retention & they did a stent in one of the arteries. It helped "a little" . The stent was to get the blood to flow around a tumor in the carotid artery. This was the time that we realized time was short. We had kind of been in denial. The oncologist never really talked about the prognosis. He just wanted to treat the symptoms as they showed up. Crisis to crisis. He did not like to have the hard talk. In April we talked about the tumors amongst ourselves. They were growing & multiplying. We talked about the tumors on her windpipe & how that would grow. That the end would not be quick. It would probably press then the windpipe would adjust & she would breathe better. Then not. And the not breathing well periods would get longer & longer. At one of these appointments we told the oncologist we wanted to request DwD. This starts the process. It takes a minimum of 15 days. Our took about 20 days to do the 2 doctor appointments, have friends sign off on her request, and get the drugs.

We were staying at her Mom's house in separate bedrooms. I woke up one night & something told me to check on her downstairs. It was 3 in the morning. She was sitting up in bed with a look on her face I had never seen before. She was badly scared as she was having a hard time breathing. We went on hospice the next Monday. There were a few hiccups on getting evaluated & "into" the hospice program but they sorted out fairly quickly.

We had moved full time to our vacation home in Bend & she said that is where she wanted to pass. Every chance we could get a few days we would run over (it's 3 hours from Portland) On our last trip I was getting us ready to go back to Portland (more appointments). She was on the couch all night. I think she knew her time was close. She was up all night thinking. I pushed back a little but knew deep down that this was it. DwD has people in the program to come to your home & mix the cocktail & take some pressure off the family. I called around a bit but nobody was available. It was kind of last minute. So it was up to me

She called our son who was working at the time. They had a good cry. He took off work. Then she whatsapp her best friend who was in Greece at the time. They had a little back & forth. I asked her if she wanted to get "dressed" and she said no. I knew she was serious now. Her appearance was always important to her.

I was apprehensive on mixing the drugs. What if I did it wrong? There are 3 drugs taken a half hour apart. The last 2 they say to drink with wine to help with the taste. She had our wedding flutes on display so i took them down & poured a bit of wine. There was some measuring to do & I had to ask her about that. She was kibbutzing me & we were laughing. By the 2nd drug we started getting more serious & I asked where she wanted to scatter our ashes. We decided on our favorite vacation spot Little Cayman. We reminsced on our happy times. When we met & were first dating. Our boy's birth. Her helping him grow up & mature. She told me to find someone else & to have a good life. The last cocktail was about 10 or 15 minutes in & she said I don't think this is working. 2 or 3 minutes later she says Ohh...now it is. Our last words were I love yous to ea other. She closed her eyes as I held her & she slipped away. I held her & cried for about a half hour.

I called the funeral home (it was all prearranged) and after a bit of back & forth they came & were very respectful. I held her & cried as they wheeled out her body.

She/we were sad that it had to end way too soon. I would call it melancholy not sad. At some point a month or 2 from the end she saw an older couple tottering down the sidewalk holding hands. She said we aren't going to get that are we. I had to agree. She was a force of nature & I miss her. I am proud that I did right for her. On the 17 months from Dx to death I was at every appointment & treatment. We became much closer during this time & I'm thankful for that. After she passed I looked at her drug log that hospice had her fill out. I noticed that the morphine was getting more frequent & larger doses. She did not tell me about doing that. So she was hiding that from me. (or i should have looked) In the end the morphine was not going to help her condition (IMO)

I started dating earlier this year & have found a special woman. We are really good together. I have had a few breakdowns when a trigger comes up. I am decent if I know it's coming but the surprises are hard. She is good about letting me process it & talk about it if I want to. Part of it is me recognizing my own emotions. So work in progress

More info on DwD. The stories were very helpful to me

https://deathwithdignity.org/stories/

Oregon DwD FAQ

https://www.oregon.gov/oha/PH/PROVI...NRESEARCH/DEATHWITHDIGNITYACT/Pages/faqs.aspx

 

[Out-to-Lunch]

Thank you so much for sharing that. I am crying, but it is a bittersweet kind of crying.

 

[finnski1]

Thanks for sharing that. It can't be easy but I know you two did the right thing.
DW and I are in our early to mid 60's so this subject doesn't really come up. Thanks for putting it in perspective.

 

[ExFlyBoy5]

Thank you for sharing this deeply personal story. It was an unfortunate situation but I am glad she had the choice to DwD. I have always thought that it is a travesty that in all 50 states you are able to help a furry critter ease their suffering yet we aren't able to do this for our human companions in most states. I can only hope that if I am in a similar situation, I will be able to get somewhere that I can DwD.

 

[RobbieB]

My first wife died at home with home hospice care. Pancreatic cancer. The morphine kept her out of pain and she passed about 2 weeks after she stopped eating.

Yeah, sucks.

 

[athena53]

Thanks for your story. I wish this were an option in other states as well. My DH died peacefully at home with support from hospice; he pretty much just faded away over the last month. I still feel that it was a privilege to be there with him at home when he died even though I'd never seen anyone die before.

It's always a personal decision but for me, taking every last dose of chemo I can get when it has an almost zero chance of extending my life appreciably will not be an option. I hope that if it comes to that I can say "Game over" like DH, your wife and my late mother.

 

[rodi]

Thank you so much for sharing. I, also, am crying...

But since my mom, dad, and brother have all died from Cancer, and I was there at the end for them - morphine only does so much.

 

[Amethyst]

Scrapr, thanks so much for sharing this. What a good life you two had.

I only wish a DWD option existed for dementia, which has hit every family member who lived into their 80s. I do NOT want to live with it. Talk about a total lack of dignity.

 

[omni550]

Scrapr,

Thanks for sharing your very personal and touching story.

My eyes are watering.

DwD as a choice is definitely needed throughout the U.S, imho.

omni

 

[Dtail]

Thanks for sharing this personal situation. Brought tears to my eyes.
I am glad you were able to find love again.

 

[O2Bfree]

Thank you for sharing that. You both knew the end was coming and were able to be together when it did. We should all be so fortunate when an end comes.

 

[braumeister]

Incredibly moving story. Thanks for sharing all that.

Very reminiscent of my father’s case, he had the same thing. The difference was that he didn’t have that option, despite really wanting it. His last few months were grim. Good to know that your DW’s last days were better.

 

[ExFlyBoy5]

Thank you so much for sharing. I, also, am crying...

But since my mom, dad, and brother have all died from Cancer, and I was there at the end for them - morphine only does so much.

Not doubt. Both my Mom and Dad died at home (same hospice company and even the same RN and case manager 5 years apart) of COPD and while the morphine did help, it was still a slow death for both. Mom had a tougher time overall but Dad had issues with delirium which was difficult to watch. They both would have preferred to DwD but the state they lived in made it illegal and pretty much impossible.

 

[Teacher Terry]

Such a difficult situation but I am glad your wife had that option. A friend of mine died from the same cancer and it was slow and horrible. Glad you have found love again.

 

[Reach]

Thank you for sharing your story and links. A very moving post.

It was helpful to understand what a DwD scenario might look like as an alternative to hospice.

 

[ivinsfan]

Your story is so moving. Processing this by writing it down must be so cathartic for you and is a big part of healing.


I have a good friend and shirt-tail relative who just lived through this in Feb.


I am profoundly happy for you and your new friend. Just having the courage to share your life with someone is a big step. God Bless you and I can tell you are a good man.

 

[ImThinkin2019]

Scrapr, thank you for posting this. I'm sure you have helped many people by describing the process.

Your description of the actual drug delivery and effects sounds like the method is very humane. That's comforting.

Glad you have found someone else. She must be a wonderful person. Best wishes to both of you!!!!

 

[donheff]

Thank you for sharing Scrapr. I hope that choice is available to me when the time comes.

 

[Walt34]

Thank you for posting that.

 

[savory]

Thank you for sharing this. We should all be able to share a love like you did with your wife.

The timing for me for helpful. I am beginning to do some end of life planning. It is a subject we as a society do not do great communication. You should know what you shared is very helpful and meaningful to me. And, I really appreciate it.

Thanks

 

[GoodbyeYellow]

Thank you for sharing, and your bravery in going through that and then relating it is immeasurable. Glad to hear you are healing.

 

[Scrapr]

Thank you for sharing your story and links. A very moving post.

It was helpful to understand what a DwD scenario might look like as an alternative to hospice.

DwD is not an either or with hospice. Hospice is very good. Really helped my FIL when he passed. They have a lot of ancillary support that helps a lot. Mrs Scrapr was on hospice as well. The thing is the Feds (Medicare?) fund hospice. So hospice nurses & docs will only go so far. I suspect they don't want to be a part of a "death panel" or look like they are helping people die by their own hand. The DwD is it's own thing. The hospice is very careful to draw a line of not helping w/the DwD process. So anything with DwD had to be through the DwD program. Questions, process & the help to mix the cocktail had to go through that program. IIRC our health provider answered many of our questions.

Thank you all for your thoughts. I was crying while writing it out. I had to come back to it a couple times. It became too long for ShokwaveRider post on his BIL. And it seemed to be a topic of interest so I made it's own post

 

[Beststash]

I've had two kinds of cancer and treated with Immunotherapy in one case, Chemo and Radiation in the other. I always said that if faced with the choice I would not take Chemo. All of that changed- you begin to think, "What do I have to lose? Why not?"

When you get the diagnosed it is a mental trip that I would not wish on anyone. The real disappointment for me was that after retiring at age 52 and totally focusing on health at age 66 it happened. I was probably in the best shape of my life. I walked 6-8 miles every day, stopped drinking, felt like I was 30 years old. It didn't matter.

Having said that I am now 70 and am so far NED (no evidence of disease). After going through the treatments for about a 4 year period in one case and 2 year period in the other I now go every 3 months in one case for "port flush" and every 6 months for scans, etc. I will keep my port indefinitely, it's not a big deal - I don't even feel it.

Bottom line - I belong to the DWD movement because I am not naïve enough to think that my diagnosis is not significant. I live day-to-day and appreciate life much more than previously. A cancer diagnosis makes you acutely aware of your mortality.

BTW -weed helped me through the chemo especially. I think it is silly that people make such a big deal about it's usage. Are we that damn stupid? Yep.

I am grateful that I retired early because you really cannot predict the future. It amazes me that I have already been retired for 18 years - time really does pass so fast.

When I say that "money is the least of your concerns" as you age, I mean it. If you are fortunate enough to be able to retire at an early age and that is your goal - my advice is simple - just do it.

I think it is insane that we treat our pets better than we do humans when it comes to end of life decisions. Weird. Just weird.

Peace

 

[RobbieB]

Hopefully, more states will make this alternative legal.

When I signed up for home hospice they informed me that this would prevent a police investigation after death. Yeah, just what the bereaved need eh, a police investigation.

 

[Scrapr]

Hopefully, more states will make this alternative legal.

When I signed up for home hospice they informed me that this would prevent a police investigation after death. Yeah, just what the bereaved need eh, a police investigation.

When I called the funeral home they mentioned that they would have to wait for a Medical Examiner to come first to release the body. I didn't know what would happen in the "after" part. I had the drug bottles & instructions lined out on the counter. In the end I the the funeral home worked it out & came over maybe 2 hours after she passed. I probably should have worked that out before we started the process. I really didn't know if we would be in Bend or Portland when she passed. So I had a Funeral home on the ready in each city

Pot did help with some of the side effects of chemo & the disease. She mostly did edibles but some vape. She was getting advice from our 23 year old boy. (LOL)