General The End Of Your Life

[Chew Toy McCoy]

Best taking the end of your life into your own hands story told by Bill Burr.

 

[Nycturne]

It’s also easy for things to deteriorate really quickly, leaving loved ones trying to figure out the way forward.

Kind of on this topic...

My older sister was born with multiple chromosomal defects which left her stunted developmentally, and wholly unable to communicate, let alone care for herself. She was expected to survive maybe 20 years, but we celebrated her 50th a couple years ago. There's no trust that the system would give two shits for someone in her condition, so the last couple years have been working with my parents putting together a trust to pay for her care when my parents are gone, which me and my other sibling would take over as guardians and manage her care.

We've been also dealing with the cat's Small Cell Lymphoma for the last two years (with a 2-5 year prognosis). So I was blindsided when I got the call from my father last night that my sister was dying. Her colon was twisted, and the only options in front of us were to let her go, or to do surgery and have her use a colostomy bag for the rest of her life. Because she can't comprehend things at even the level of a child, there is basically no way that would work.

Because the Death with Dignity Act in Washington State doesn't cover her (she is unable to communicate her desires), we were left just watching her struggle at the end. While we all had the time and opportunity to say good-bye, it just wasn't possible to have someone there 24/7 while we waited for the end. Ultimately, she passed this morning around the time my father was getting ready to head back into the hospital. It would be been better if we could have been present at the end, instead of having to juggle our parents' health with the desire to be there at the end. It sucks.

 

[Alli]

It sucks.

I’m so sorry for all your family has been/is going through. It definitely does suck.

 

[Eric]

Kind of on this topic...

My older sister was born with multiple chromosomal defects which left her stunted developmentally, and wholly unable to communicate, let alone care for herself. She was expected to survive maybe 20 years, but we celebrated her 50th a couple years ago. There's no trust that the system would give two shits for someone in her condition, so the last couple years have been working with my parents putting together a trust to pay for her care when my parents are gone, which me and my other sibling would take over as guardians and manage her care.

We've been also dealing with the cat's Small Cell Lymphoma for the last two years (with a 2-5 year prognosis). So I was blindsided when I got the call from my father last night that my sister was dying. Her colon was twisted, and the only options in front of us were to let her go, or to do surgery and have her use a colostomy bag for the rest of her life. Because she can't comprehend things at even the level of a child, there is basically no way that would work.

Because the Death with Dignity Act in Washington State doesn't cover her (she is unable to communicate her desires), we were left just watching her struggle at the end. While we all had the time and opportunity to say good-bye, it just wasn't possible to have someone there 24/7 while we waited for the end. Ultimately, she passed this morning around the time my father was getting ready to head back into the hospital. It would be been better if we could have been present at the end, instead of having to juggle our parents' health with the desire to be there at the end. It sucks.

Geez that's terrible news, I'm sorry you and your family had to go through this. At the same time it sounds like you guys gave her the best life possible throughout all the additional years she survived and bless you all for that. Thinking about you and your family today, hang in there.

 

[Nycturne]

Geez that's terrible news, I'm sorry you and your family had to go through this. At the same time it sounds like you guys gave her the best life possible throughout all the additional years she survived and bless you all for that. Thinking about you and your family today, hang in there.

Our cat has been a huge help today: being a cuddle bug, showing extra patience around her meal times, and following me like a little shadow. I don't think I'll ever stop being amazed at this little creature and her intelligence.

We've had friends of the family that foster children (and adults) with various developmental conditions. So we've seen first hand how weird the system can be for these people. It's not something my parents wanted for my sister, and I have to agree. The expectation was that she would have her basic needs met (fed, cleaned) but her quality of life would be poor from being ignored beyond that. Because of that, I have to say I'm a little relieved that we won't have to go through the complexities of managing her care after my parents are gone. I don't think my sibling and I would have seen eye to eye on her care, and I dreaded the heated arguments, and the difficulties getting our sister a caregiver with regular oversight would entail. It's better than the alternative, but I'm honestly not confident I could have protected her the way she deserved, but signed up to do it anyways.

To be honest, we kinda thought my sister would figure out how to be stubborn enough to outlive us all, even though she's the eldest sibling. So we were getting ready for my parents end of life care, and I was distracted on the side with the cat's health issues. This just hit us out of nowhere. It was little more than 48 hours from first symptoms to gone. And she was made as comfortable as possible, with her being able to sort-of sleep the last time I saw her. So it could have gone much worse.

But it reinforces my earlier thinking in the thread, where getting all this outlined ahead of time is hugely beneficial if you want some sort of DNR or to take advantage of a Death with Dignity law. Because when the time does come, who knows what might make it difficult or impossible to pursue your actual wishes in this sort of end of life care. In our case, there wasn't much we could have done anyways, as the local law is setup partly to avoid a guardian from making a selfish choice while claiming to act on behalf of their ward. But that's a bit of an edge case.

 

[Eric]

As my FIL winds down things have gone from bad to worse, his constant falls have landed him in the hospital twice, where he is forced to stay for weeks at a time while he recovers. He's diabetic and refuses to take his medications, leaves soiled diapers all over the house for his wife to clean up (which regularly makes her sick) and flat out refuses to have any outside help come in and assist.

It's a terrible situation but what really bothers me is his constant orders of coca cola and ice cream, which my wife keeps ordering for him on instacart, all while he's wasting away and seething in anger/confusion. The state of Oregon says he has a right to sit at home and die if he wants, so it puts us in a real predicament. Not sure what we'll do going forward but I told my wife I would stop ordering his pure fat/sugar diet. I think she's more worried him becoming violent with his wife if we stop though.

 

[Herdfan]

As my FIL winds down things have gone from bad to worse, his constant falls have landed him in the hospital twice, where he is forced to stay for weeks at a time while he recovers. He's diabetic and refuses to take his medications, leaves soiled diapers all over the house for his wife to clean up (which regularly makes her sick) and flat out refuses to have any outside help come in and assist.

It's a terrible situation but what really bothers me is his constant orders of coca cola and ice cream, which my wife keeps ordering for him on instacart, all while he's wasting away and seething in anger/confusion. The state of Oregon says he has a right to sit at home and die if he wants, so it puts us in a real predicament. Not sure what we'll do going forward but I told my wife I would stop ordering his pure fat/sugar diet. I think she's more worried him becoming violent with his wife if we stop though.

While not an exact comparison, my MIL is going through something similar with her oldest daughter.

Jennie is 66 years old and has always been a large person. Probably 5'-8" and has always been well over 250 lbs. She came over to help us pack up in preparation for our move. This was August and we hadn't seen her since Christmas. She had lost 75 lbs without trying. Huge , but she was unconcerned. She also feel at least twice while she was at our house. Fast forward a month and Jennie took her mom and uncle on a 10 hour drive to visit another aunt. This aunt's daughter was there and she just happens to be a Dr. who ran a palliative care facility. So maybe she knows something. She told Jennie that from looking at her she suspected diabetes, but Jennie blew her off.

Went to visit over Thanksgiving and Jennie was using a walker to get around. By Christmas, she had stopped driving, moved into her mom's house and was basically unable to walk. She finally went to the Dr and guess what, she had diabetes and had basically lost function of her legs. So she was sent to rehab to try and build up her strength. She got there and proceeded to keep doing things that got her sent back to the hospital. Finally my MIL gave up and let her come home saying she wasn't going to send her off someplace to die. It was rehab, not a long-term care facility. So today she is bedridden and my 89 year old MIL is her carer. Jennie doesn't want anyone else doing thing so hiring outside help is out of the question. So she is doing her best to kill her mom, whom she has never gotten along with. My MIL is looking at this as a way to fix a relationship, but Jennie wants no part of that.

And in an almost identical situation, her mom goes to Starbucks on an almost daily basis to get her scones and some way over-sugared drink because that is all she will eat.

This is the reason our Living Wills have been updated to specifically say my MIL is to have zero say in our care if needed. She has shown she is unwilling to do what is necessary to provide proper care for Jennie, so she probably wouldn't for either of us. So she's out.

 

[Nycturne]

Seeing a lot of similarities with what my parents are now going through. Mother's in the hospital now after being bed ridden for a couple months now as part of a failed rehab attempt, and it's clear that moderate dementia is now in play. Doctors and nurses are suggesting it's "Sundowners", so that's not helping. She's gotten the nickname of Houdini at the hospital for how she escapes the restraints they are using to prevent her from pulling out her trialysis and IV lines. But it's been clear her memory is going as she didn't remember me calling her on Christmas, and I think she still thinks it was my brother that dropped in the weekend before she went into the hospital a couple weeks ago.

But the thing I didn't quite expect is that I guess my brother took issue with my father pointing out that the e-mail updates helps keep me in the loop as well (I never asked for it, per se). If it wasn't for the fact that she's been in a place that's 2hrs each way (traffic is a pain here), I'd likely have dropped in, or if me reaching out asking what I can do to help wasn't met with silence. Last time I did talk with him he was saying his wife was putting something together to help our dad since he's been having to make do at home, and that they would ask that I contribute to helping pay for it. I said sure, just let me know what's needed, and BTW, my partner has being dealing with the same thing with their dad, so maybe get their input. Silence since then. I've talked to the SIL more than my brother in the last couple weeks.

So I guess how do you deal with the sibling that basically has never really proactively reached out or followed up getting in this mood? I'm tempted to just confront him on it and point out that I would have moved mountains had he been willing to ask, but I also don't want to be the one to light the bridge on fire as it were.

Our family tends to just let a lot of annoyances slide which has been how we get through a lot of friction, but when the insinuation is that I somehow don't care about our mother, that stings.

 

[Eric]

Seeing a lot of similarities with what my parents are now going through. Mother's in the hospital now after being bed ridden for a couple months now as part of a failed rehab attempt, and it's clear that moderate dementia is now in play. Doctors and nurses are suggesting it's "Sundowners", so that's not helping. She's gotten the nickname of Houdini at the hospital for how she escapes the restraints they are using to prevent her from pulling out her trialysis and IV lines. But it's been clear her memory is going as she didn't remember me calling her on Christmas, and I think she still thinks it was my brother that dropped in the weekend before she went into the hospital a couple weeks ago.

But the thing I didn't quite expect is that I guess my brother took issue with my father pointing out that the e-mail updates helps keep me in the loop as well (I never asked for it, per se). If it wasn't for the fact that she's been in a place that's 2hrs each way (traffic is a pain here), I'd likely have dropped in, or if me reaching out asking what I can do to help wasn't met with silence. Last time I did talk with him he was saying his wife was putting something together to help our dad since he's been having to make do at home, and that they would ask that I contribute to helping pay for it. I said sure, just let me know what's needed, and BTW, my partner has being dealing with the same thing with their dad, so maybe get their input. Silence since then. I've talked to the SIL more than my brother in the last couple weeks.

So I guess how do you deal with the sibling that basically has never really proactively reached out or followed up getting in this mood? I'm tempted to just confront him on it and point out that I would have moved mountains had he been willing to ask, but I also don't want to be the one to light the bridge on fire as it were.

Our family tends to just let a lot of annoyances slide which has been how we get through a lot of friction, but when the insinuation is that I somehow don't care about our mother, that stings.

I wish I had an answer to this, it seems far more commonplace with families than I would've believed before going through something similar myself with both my own and my wife's families.

It sounds like things are strained with your brother which is a shame but certainly getting updates from your dad should not be an issue, hard to wrap my head around that one. If it's me I'm directly communicating with my parents regardless of what any sibling says, nobody can take that away from you. At least you have your SIL there for some sort of go between if needed.

Hang in there, I know it's tough watching a parent go through this stuff, all we can do is be there for them. In my case after my dad passed I felt like I didn't reach out to him enough and suffered an incredible amount of guilt over it, so I promised myself I would not make the same mistake with my mother. I called her enough that there were times she wouldn't pick up the phone lol, which was always fine by me because I knew that meant I was doing my job. I felt a lot more comfortable after her passing as a result.

 

[Nycturne]

I wish I had an answer to this, it seems far more commonplace with families than I would've believed before going through something similar myself with both my own and my wife's families.

It sounds like things are strained with your brother which is a shame but certainly getting updates from your dad should not be an issue, hard to wrap my head around that one. If it's me I'm directly communicating with my parents regardless of what any sibling says, nobody can take that away from you. At least you have your SIL there for some sort of go between if needed.

And I get it, stress and anxiety do weird shit to people. Especially when it’s over a period of months/years. But the thing both my father and brother do that bothers me is this whole thing of creating an expectation, never voicing it, and then judging people or getting angry when that expectation wasn’t met. So it rubs me the wrong way when they do that on top of not responding to my offers of help.

For my part, I’m already just depressed from the fact that she doesn’t remember when I do call or visit in the last couple months, and mistook me for my brother a couple weeks ago. To the point that the PT nurse thought I was my brother. Doesn’t help that it seems that these sort of situations triggers a sort of social anxiety disorder for me (probably need to see someone about that before it leaves me with a regret I don’t want).

Hang in there, I know it's tough watching a parent go through this stuff, all we can do is be there for them. In my case after my dad passed I felt like I didn't reach out to him enough and suffered an incredible amount of guilt over it, so I promised myself I would not make the same mistake with my mother. I called her enough that there were times she wouldn't pick up the phone lol, which was always fine by me because I knew that meant I was doing my job. I felt a lot more comfortable after her passing as a result.

It’s a bit messy to be honest. I’m a bit far away to be there regularly to step in with any real power of attorney, and because of the dementia setting in, my father was prevented from seeing my mother as there were allegations that he might have kicked her in the face when she was admitted to the ER (Narrator: no, that didn’t happen, it was an infection my father called an ambulance for). So my brother and SIL are bearing the brunt of things at the moment. And I don’t really want to accidentally burn bridges while they are doing this for her, as it just seems incredibly petty to risk that.