Please please please talk to your loved ones about end of life wishes

[Ottakee]

I am currently sitting in the heart center ICU family room with 2 uncles and an aunt.  another aunt is the patient.  She is very ill.  
 

Without going into all the details, this aunt and her husband have never talked about end of life wishes.  He said he doesn’t know what she would want but also doesn’t want to ask her.   This is putting added stress on the medical staff here (she is currently a full code) and other family members.

Just please have these hard discussions with your family sooner rather than later.  Nothing needs to be set in stone but knowing your wishes and you knowing theirs makes for sitting in an ICU waiting room much easier.

[HomeAgain]

I am so sorry about your aunt.

I hope when my time comes, dh and the kids remember the many conversations we've had around the dinner table about this.  Neither of us want herculean efforts - we're not afraid of death but we would prefer not to have prolonged life without quality.  Beyond that, we put full trust in whomever needs to make the decisions.

[Kassia]

I'm so sorry.  You've had a lot of heartache and losses in such a short time.  Sending hugs.

[Pawz4me]

Hugs, @Ottakee. You've had way more than your share of bad stuff to deal with recently.

And I wholeheartedly agree with you regarding letting next-of-kin know your wishes.

[wathe]

4 minutes ago, Ottakee said:

I am currently sitting in the heart center ICU family room with 2 uncles and an aunt.  another aunt is the patient.  She is very ill.  
 

Without going into all the details, this aunt and her husband have never talked about end of life wishes.  He said he doesn’t know what she would want but also doesn’t want to ask her.   This is putting added stress on the medical staff here (she is currently a full code) and other family members.

Just please have these hard discussions with your family sooner rather than later.  Nothing needs to be set in stone but knowing your wishes and you knowing theirs makes for sitting in an ICU waiting room much easier.

Yes, yes, yes, yes, yes.  This is so important.  

Without advance care planning (which can be as simple as just discussing wishes, values and goals with one's spouse or other person who would be thrust into a substitute decision maker role if one were to be incapacitated), people get invasive care that they might not want.  Causing unnecessary suffering and perhaps also preventing death with dignity.  

It also causes tremendous stress for substitute decision makers, who really do feel social pressure to "do everything", and rarely understand what that actually means, or the limits of what invasive care and resuscitation can actually accomplish.

It's also traumatizing for HCP to feel forced into providing invasive care that they know very well may be both unwanted and futile.  Crunching frail elderly ribs with CPR (as a common example among many other invasive procedures) case after case after case, year after year after year,  knowing it's most always futile, really does wear HCP down and is a contributor to burnout.

Speak Up Canada has work books and resources to help anyone to get started.  They are Canadian, but the principles are the same no matter where you live.

[Catwoman]

I'm so sorry, @Ottakee.  😞 

[Katy]

In the US, If you have strong wishes and you don’t think your family will make the choices you would, you can likely file the paperwork with the hospital network you use. 

I have more than once seen a family member insist on drastic measures to save someone who didn’t want such measures, but because the hospital didn’t have the paperwork there was nothing they could do. 

[Beth S]

When we were updating our wills (in USA), we also updated our Living Will which gives these directives.
You can file it in advance with your hospital (esp. on your Portal) so it is linked to your emergency treatment.

As a further more controversial note, our parents had funeral/burial pre-planning that we were unable to easily execute.
Sometimes the medical situation is so much different from what the patient was expecting . . . so please don't feel like it would all be easy if it was pre-planned.

Basically, unexpected sudden terminal illnesses are very difficult to navigate.
But you should get lots of support here from the Hive!

Edited July 4 by Beth S

[Ottakee]

@wathe   The icu doc last night said that the Medicine was the easy part of his job but these situations are what makes medicine hard.  I felt so bad for him and the young female PA ….knowing that neither of them would want to run a full code.

I am trying my best to explain to the husband what CPR would mean in a tiny frail lady but he doesn’t want to “give up”.  I said this wasn’t giving up on her.

[Carol in Cal.]

Yeah, I’m glad you’re talking about CPR.  Even with an almost full code preference, CPR on someone very old does a lot of harm and probably not too much good.  Broken ribs are the least of it.

[Harriet Vane]

Praying, friend 

[Ottakee]

17 minutes ago, Carol in Cal. said:

Yeah, I’m glad you’re talking about CPR.  Even with an almost full code preference, CPR on someone very old does a lot of harm and probably not too much good.  Broken ribs are the least of it.

But it is so hard to explain to some people (like this uncle) what all happens with CPR and an elderly person.   I am just the niece in law (my ex husband’s side of the family) which means I have no decision making power.

[Ottakee]

1 hour ago, Pawz4me said:

Hugs, @Ottakee. You've had way more than your share of bad stuff to deal with recently.

And I wholeheartedly agree with you regarding letting next-of-kin know your wishes.

This is one more holiday at the hospital.   My brother died the first week of March, my mom the first week of May and now we are here the first week of July.

[mommyoffive]

I am so sorry for this situation.  The poor husband.   Just lots of prayers and hugs to everyone.  I am so sorry @Ottakee

[Carol in Cal.]

26 minutes ago, Ottakee said:

But it is so hard to explain to some people (like this uncle) what all happens with CPR and an elderly person.   I am just the niece in law (my ex husband’s side of the family) which means I have no decision making power.

Yes, that is so true.

[athena1277]

I have a friend who worked for many years as a paramedic.  He said that when you have an elderly relative that doesn’t want all the drastic measures, you need to take their paperwork with everything spelled out and tape it to the bedpost.  He said if he gets called out because a family member that doesn’t want to stop at anything to keep the person alive calls, they have to do the CPR and everything unless someone can find that document.  Make sure your family knows where to find it.

[wathe]

45 minutes ago, Ottakee said:

@wathe   The icu doc last night said that the Medicine was the easy part of his job but these situations are what makes medicine hard.  I felt so bad for him and the young female PA ….knowing that neither of them would want to run a full code.

I am trying my best to explain to the husband what CPR would mean in a tiny frail lady but he doesn’t want to “give up”.  I said this wasn’t giving up on her.

It really is hard.

One way to present  it is that CPR doesn't actually fix anything. Rather,  it buys time to reverse whatever problem caused the arrest.  If the cause of the arrest isn't reversible (like, say, end-stage metastatic cancer, or end-stage COPD), then CPR is futile -- it can only cause harm.

[wathe]

Just now, athena1277 said:

I have a friend who worked for many years as a paramedic.  He said that when you have an elderly relative that doesn’t want all the drastic measures, you need to take their paperwork with everything spelled out and tape it to the bedpost.  He said if he gets called out because a family member that doesn’t want to stop at anything to keep the person alive calls, they have to do the CPR and everything unless someone can find that document.  Make sure your family knows where to find it.

Here, paramedics look for it on the fridge.

Image is for example only.  The actual forms have serial numbers.

[wathe]

We are fortunate here, that MD's do not need consent to withhold CPR if CPR is clearly medically inappropriate.  We almost always try to meet family/SDM where they are, and make decisions that respect their wishes, but draw the line at care that is clearly medically inappropriate.  My ICU colleagues are very good at this.

It's trickier in the ED, because often the resusc decision needs to be made before the HCP have the necessary information to determine if CPR is medically inappropriate.   So in the absence of an advance directive or DNR order, we err on the side of resuscitation.

Edited July 5 by wathe

[Ottakee]

38 minutes ago, athena1277 said:

I have a friend who worked for many years as a paramedic.  He said that when you have an elderly relative that doesn’t want all the drastic measures, you need to take their paperwork with everything spelled out and tape it to the bedpost.  He said if he gets called out because a family member that doesn’t want to stop at anything to keep the person alive calls, they have to do the CPR and everything unless someone can find that document.  Make sure your family knows where to find it.

We were told in our area to tape it to the door and the fridge door.

[PeterPan]

1 hour ago, Ottakee said:

But it is so hard to explain to some people (like this uncle) what all happens with CPR and an elderly person.   I am just the niece in law (my ex husband’s side of the family) which means I have no decision making power.

I'm going to flip this. When people don't talk about it, it's ok to spin/interpret this as "I trust you to make the right decision in the moment" and that's what I would tell this person. She trusts him to make the right decision. Then have the docs explain things so he can understand how things work out. As you say, being full code is sometimes not in a person's best interest, depending on their overall health situation. Their doctor should have had a talk with them about changing to DNR if it was appropriate, so it could mean this person maybe didn't see a doctor regularly or didn't have health conditions to make that eminently necessary.

I've seen people at the end do *more* than the person wanted, because they aren't quite ready to let go, didn't understand all the medical things going on, etc. Sometimes people end up going the hard way or a bumpy way because that's just how it's going to work out for their story. It's not easy to watch.

Can you bring in the hospital social worker to help?

[Elizabeth86]

I’m so sorry about your aunt.

I wanted to add that it is super important to have conversations an your wishes with the ENTIRE family . I’ve witnessed this recently and it is ugly. 

[Ottakee]

7 hours ago, PeterPan said:

I'm going to flip this. When people don't talk about it, it's ok to spin/interpret this as "I trust you to make the right decision in the moment" and that's what I would tell this person. She trusts him to make the right decision. Then have the docs explain things so he can understand how things work out. As you say, being full code is sometimes not in a person's best interest, depending on their overall health situation. Their doctor should have had a talk with them about changing to DNR if it was appropriate, so it could mean this person maybe didn't see a doctor regularly or didn't have health conditions to make that eminently necessary.

I've seen people at the end do *more* than the person wanted, because they aren't quite ready to let go, didn't understand all the medical things going on, etc. Sometimes people end up going the hard way or a bumpy way because that's just how it's going to work out for their story. It's not easy to watch.

Can you bring in the hospital social worker to help?

The doctors and palliative care team has meet with the family daily but uncle just doesn’t totally understand ( likely some learning challenges) and doesn’t want to give up.

we are talking about someone who has 20 iv pumps running, kidneys are shutting down, heart is at 20%, has 90+ % blockage on both sides of the heart, extremities are ice cold due to poor circulation, blood pressure keeps tanking and on and on.

uncle also doesn’t really fully understand that if her heart stops they don’t have time to call him at home and ask him then what to do.  
 

he will be devastated when she passes.  They relied on each other a great deal.

My heart also just goes out to the medical team trying to navigate this while knowing that most/all of what they are doing is futile and if they have to do CPR would be painful.

[Ottakee]

1 minute ago, Elizabeth86 said:

I’m so sorry about your aunt.

I wanted to add that it is super important to have conversations a your wishes with the ENTIRE family . I’ve witnessed this recently and it is ugly. 

Sorry to hear that.  My siblings know my wishes and my kids do too.  And it is written down.

[hellen]

11 hours ago, HomeAgain said:

I am so sorry about your aunt.

I hope when my time comes, dh and the kids remember the many conversations we've had around the dinner table about this.  Neither of us want herculean efforts - we're not afraid of death but we would prefer not to have prolonged life without quality.  Beyond that, we put full trust in whomever needs to make the decisions.

It is your kids who will make the decisions. The doctors on our unit generally won't have that sort of conservation with a patient's family until weeks or months have passed and nursing staff puts their foot down.  

It's not just Herculean efforts.  It's also the small efforts.  I'm not in the ICU so our long term patients have a trach and a PEG.  It's hard to watch the terrible quality of life these patients have for the last months of their life.

A DNR is void in most ORs.  You can be a DNR prior to surgery and after the surgery but not during the surgery.  I think some people don't know this and imagine a peaceful death in the OR if things don't work out.

[Ottakee]

11 minutes ago, hellen said:

It is your kids who will make the decisions. The doctors on our unit generally won't have that sort of conservation with a patient's family until weeks or months have passed and nursing staff puts their foot down.  

It's not just Herculean efforts.  It's also the small efforts.  I'm not in the ICU so our long term patients have a trach and a PEG.  It's hard to watch the terrible quality of life these patients have for the last months of their life.

A DNR is void in most ORs.  You can be a DNR prior to surgery and after the surgery but not during the surgery.  I think some people don't know this and imagine a peaceful death in the OR if things don't work out.

In my case it will be my brother as my kids all have special needs and I am their legal guardian and he is back up guardian.

Hospital has been talking with us regularly, but for aunt , the decision is in uncles hands.

Needing to be a code in the operating room is a thing and hospital explained that to uncle as well.

[Bambam]

Yes, my DH does not want to talk about it. So I talked with my kids.  I'm still fairly young with at least 25 years of expected life, but you never know what could happen. 

I'm so sorry your family is going through this. 

[Faith-manor]

Mark and his brother sat down with MIL today and guided her through the process, clarifying wishes and expectations while also clearly establishing their boundaries in terms of what level of care they are willing to provide. I think that last part is VERY important. People might be of the "do everything humanly possible to save me" idea because they think no matter how fragile they are, no matter how much care they need, they will be in their home with relatives providing all this care. So since they get to have their kids and grandkids around 24/7, it doesn't sound so bad to survive in very poor physical condition.

But if the family puts a boundary on the level of physical care offered and indicates that the patient will need to enter a nursing home or hire CNAs and nurses in order stay in their home, they may feel differently. Families need to be honest with each other. In MIL's case today when they started, she wanted all the stops pulled out except dialysis. She has seen a lot of dialysis patients when she was a nurse, and decided that was not for her. She also told them she was expecting me to take care of her physically. When Mark told her that I would only be continuing with driving her to and from appointments, helping her in and out of the car or pushing a wheelchair, doing her grocery shopping, picking up meds and other errands, and sitting and visiting with her according to my schedule because we have 3 grand children I will NOT be losing my relationship with in order to become a 24/7 caregiver for her, she immediately changed her tune. 

She did ask if we thought any of the grandchildren would be willing to move in with her. We told her no. An unpaid job as a family caregiver puts them at huge risk of poverty. They all have jobs with health benefits, 401K, and salaries they can count on. Their lives could be completely wrecked from this situation. They love her, they want to visit when they can, and they want to help when they come to visit and already do so. She has 10 grandkids and not a single thoughtless, selfish one in the bunch. She is very lucky. But this doesn't equate to wrecking their lives so she can stay in her home surrounded by relatives.

Once this was made clear, she went a very different direction with her directives.

Brutal clarity delivered with grace is needed in these situations. Have the tough conversations.

[Kanin]

44 minutes ago, Faith-manor said:

She also told them she was expecting me to take care of her physically.

 

44 minutes ago, Faith-manor said:

She did ask if we thought any of the grandchildren would be willing to move in with her. We told her no.

WOW! I'm so impressed with this conversation.

And look... turns out she had VERY different ideas about this than you guys did... and you wouldn't have known without the conversation. 

[Carol in Cal.]

It probably won’t help in the OP’s situation, but …

I lean toward more intervention than most, and yet would refuse CPR over age  80 or so.  This is because my view is that once your heart stops you have actually died.  So it is more morally valid to leave it stopped than to avoid other interventions that would prolong existing life.

[Ottakee]

@Faith-manor it would be different if she invited one or more grandkids to move in with her (assuming they are local to her) rent free but still realizing they won’t provide 24/7 care and they will still work and have a social life.

These are hard conversations and many family members don’t understand all that is involved in providing 24/7 total care.

[Ottakee]

Just now, Carol in Cal. said:

It probably won’t help in the OP’s situation, but …

I lean toward more intervention than most, and yet would refuse CPR over age  80 or so.  This is because my view is that once your heart stops you have actually died.  So it is more morally valid to leave it stopped than to avoid other interventions that would prolong existing life.

Yes, especially when the heart stops as it is severely weakened and damaged with no hope of it improving much if any.

[Faith-manor]

1 minute ago, Ottakee said:

@Faith-manor it would be different if she invited one or more grandkids to move in with her (assuming they are local to her) rent free but still realizing they won’t provide 24/7 care and they will still work and have a social life.

These are hard conversations and many family members don’t understand all that is involved in providing 24/7 total care.

No that really isn't an option. Rent free does not do them any good when there is no employment in their fields here. It again would be setting them up for failure and poverty. This area is very economically depressed.

[fairfarmhand]

1 hour ago, Faith-manor said:

Mark and his brother sat down with MIL today and guided her through the process, clarifying wishes and expectations while also clearly establishing their boundaries in terms of what level of care they are willing to provide. I think that last part is VERY important. People might be of the "do everything humanly possible to save me" idea because they think no matter how fragile they are, no matter how much care they need, they will be in their home with relatives providing all this care. So since they get to have their kids and grandkids around 24/7, it doesn't sound so bad to survive in very poor physical condition.

But if the family puts a boundary on the level of physical care offered and indicates that the patient will need to enter a nursing home or hire CNAs and nurses in order stay in their home, they may feel differently. Families need to be honest with each other. In MIL's case today when they started, she wanted all the stops pulled out except dialysis. She has seen a lot of dialysis patients when she was a nurse, and decided that was not for her. She also told them she was expecting me to take care of her physically. When Mark told her that I would only be continuing with driving her to and from appointments, helping her in and out of the car or pushing a wheelchair, doing her grocery shopping, picking up meds and other errands, and sitting and visiting with her according to my schedule because we have 3 grand children I will NOT be losing my relationship with in order to become a 24/7 caregiver for her, she immediately changed her tune. 

She did ask if we thought any of the grandchildren would be willing to move in with her. We told her no. An unpaid job as a family caregiver puts them at huge risk of poverty. They all have jobs with health benefits, 401K, and salaries they can count on. Their lives could be completely wrecked from this situation. They love her, they want to visit when they can, and they want to help when they come to visit and already do so. She has 10 grandkids and not a single thoughtless, selfish one in the bunch. She is very lucky. But this doesn't equate to wrecking their lives so she can stay in her home surrounded by relatives.

Once this was made clear, she went a very different direction with her directives.

Brutal clarity delivered with grace is needed in these situations. Have the tough conversations.

I guess it just boggles my mind that someone would make those assumptions. (Not dogging on your mil because she’s far from the first instance that I’ve heard of, simply using this as a jumping off point) I have 3 lovely daughters and a son who all love me dearly. I don’t presume they’ll drop their own interests and families to provide care for me around the clock. It would be nice but honestly I think I’d prefer a nice place where they can visit me. In watching other situations play out, a person can have a relationship with a daughter or daughter in law, but an intensive caregiving responsibility changes that. In the words of my dad “I can hire people to bathe me and wipe my behind, but I can’t hire anyone to be my daughter.” I’d prefer people to visit and love me than to expend their energy and wear themselves out intensively caregiving.
 

This is different from “moms a bit feeble, and needs to live with family so she doesn’t fall and lie there unattended.”

but yes, being clear with what you’re capable and willing to do does impact these conversations.

[Ottakee]

14 minutes ago, Faith-manor said:

No that really isn't an option. Rent free does not do them any good when there is no employment in their fields here. It again would be setting them up for failure and poverty. This area is very economically depressed.

Yes, not being local with their jobs makes that a no go.

[Faith-manor]

27 minutes ago, fairfarmhand said:

I guess it just boggles my mind that someone would make those assumptions. (Not dogging on your mil because she’s far from the first instance that I’ve heard of, simply using this as a jumping off point) I have 3 lovely daughters and a son who all love me dearly. I don’t presume they’ll drop their own interests and families to provide care for me around the clock. It would be nice but honestly I think I’d prefer a nice place where they can visit me. In watching other situations play out, a person can have a relationship with a daughter or daughter in law, but an intensive caregiving responsibility changes that. In the words of my dad “I can hire people to bathe me and wipe my behind, but I can’t hire anyone to be my daughter.” I’d prefer people to visit and love me than to expend their energy and wear themselves out intensively caregiving.
 

This is different from “moms a bit feeble, and needs to live with family so she doesn’t fall and lie there unattended.”

but yes, being clear with what you’re capable and willing to do does impact these conversations.

My husband's cousins are having the same issue with their mother, mil's twin sister. She told the kids they were worthless the other day for not moving into the house to provide her full time care. She told them she is grieved she ever had them since they turned out so selfish. None of them are retired yet, and have jobs that are not in the area, and would not be able to get jobs in the area. The closest is 1 hr away, and the others are many states away. She doesn't appear to care about their futures or her grandkid futures.

I know of others. We have a friend going through something VERY similar with his dad and mum. He isn't retired yet, neither is his sister, their oldest brother is taking care of a very medically fragile wife, and the other brother passed away last year. They expect the not retired children to move a thousand miles to them, and for their in laws to quit their jobs and do full time care. The conversations are not going well this week for them. I feel like we all needed to have these conversations 20 years ago when parents first began retiring. The boundaries should have been drawn long, long ago. But with MIL, it wasn't my business to do anything except say what I am and am not willing to do.

Also, to whomever brought up CPR, thanks for doing that. We know about it from DD who used to be a paramedic. But a lot of people do not understand how awful it is on a fragile body.

[fairfarmhand]

6 minutes ago, Faith-manor said:

My husband's cousins are having the same issue with their mother, mil's twin sister. She told the kids they were worthless the other day for not moving into the house to provide her full time care. She told them she is grieved she ever had them since they turned out so selfish. None of them are retired yet, and have jobs that are not in the area, and would not be able to get jobs in the area. The closest is 1 hr away, and the others are many states away. She doesn't appear to care about their futures or her grandkid futures.

I know of others. We have a friend going through something VERY similar with his dad and mum. He isn't retired yet, neither is his sister, their oldest brother is taking care of a very medically fragile wife, and the other brother passed away last year. They expect the not retired children to move a thousand miles to them, and for their in laws to quit their jobs and do full time care. The conversations are not going well this week for them. I feel like we all needed to have these conversations 20 years ago when parents first began retiring. The boundaries should have been drawn long, long ago. But with MIL, it wasn't my business to do anything except say what I am and am not willing to do.

Also, to whomever brought up CPR, thanks for doing that. We know about it from DD who used to be a paramedic. But a lot of people do not understand how awful it is on a fragile body.

Is it because they grew up in a time where there was a majority at home wife? Have they lost touch with how expensive life is? Do they not get it that things like well paid pensions don’t exist for most people any more and it’s up to employees to save save save for retirement? 
 

i do know many elders assume this because they did it for their parents, forgetting that dropping everything to care for granny for 6 months is drastically different than dropping everything to care for granny for 6 years, and that’s what most of us may be facing as people live longer with debilitating illnesses.
 

or were these people all just really self focused all along?

my dh asked me (he’s 5 yrs older than me so it’s likely that I’ll outlive him) if I would sell the farm to be near the kids if they moved off. I thought about it and said I guess I’d have to. I said it’s my job as a parent to make it as easy as possible on my kids should I need help. As much as it would pain me to leave this farm we’ve built and where our family has lived and loved for decades, I would sadly have to. It does look like my kids will stay local as the job market is good. I can picture me moving into a grannny cottage out back and letting a kid and spouse and grandkids have this big house. It really is suited for a family. I guess I don’t understand older people making it all about themselves as they age. 

[Faith-manor]

1 minute ago, fairfarmhand said:

Is it because they grew up in a time where there was a majority at home wife? Have they lost touch with how expensive life is? Do they not get it that things like well paid pensions don’t exist for most people any more and it’s up to employees to save save save for retirement? 
 

i do know many elders assume this because they did it for their parents, forgetting that dropping everything to care for granny for 6 months is drastically different than dropping everything to care for granny for 6 years, and that’s what most of us may be facing as people live longer with debilitating illnesses.
 

or were these people all just really self focused all along?

my dh asked me (he’s 5 yrs older than me so it’s likely that I’ll outlive him) if I would sell the farm to be near the kids if they moved off. I thought about it and said I guess I’d have to. I said it’s my job as a parent to make it as easy as possible on my kids should I need help. As much as it would pain me to leave this farm we’ve built and where our family has lived and loved for decades, I would sadly have to. It does look like my kids will stay local as the job market is good. I can picture me moving into a grannny cottage out back and letting a kid and spouse and grandkids have this big house. It really is suited for a family. I guess I don’t understand older people making it all about themselves as they age. 

I do think it is a combo of self centeredness but also one of not getting it. They are the 1st generation to have such extensive medical science to prop them up while living so very unwell. If MILs grandparents had fallen and busted a hip, it was pretty well over. No one was intubated to help them breathe, and being bed bound made them very weak very quickly without a lot of medical procedures and support drugs to allow this to go on for years. They did not experience their parents having these conversations with their grandparents. My great grandparents kind of naturally expired when something big came along. My grandfather limped along 10 years after his third heart attack due to new advances, but he still died in his early 70s. Now, he could probably go until his 90s. He would have been miserable and house bound, but availing himself of all of the medical options would have allowed that. And the real kicker with mother in law was when her own mother was diagnosed with dementia at 78, she was packed off within 2 years to the nursing home (not a good one eithet, just whatever was the cheapest) because she and her twin had NO intention of taking care of her. So in this case, my MIL was being a real tart expecting care she would never have been willing to give.

Oddly though, Mark and J were able to navigate it pretty well with her. I thought it was going to be a LOT worse. Our youngest child who is her favorite grandchild (and yes, she plays serious favorites in the family) was there and held her hand and reminded her that she is very much loved, and that he knew it was hard and hurtful to have to discuss these things. I have to wonder if that made a difference. She is jolly now, and having everyone for dinner at her house tonight. She made a pie, and we ordered barbecue to pick up so it should be festive (fingers crossed) after such a tough morning.

[Carol in Cal.]

In fairness, I think that most of these people were SAHMs for at least part or maybe all of their adult lives.  So to them, it looked like just a matter of taking that show on the road to provide for elderly family members.

Having said that, my mother was furious that none of her four children would quit their jobs and come and live with her so that they could stay in the firetrap of a family home.  She asked us each, one by one, separately.  We each have families and jobs where we currently live, and this would have been difficult.  I took quite a bit of time off from work and lost a great deal of income for them even without doing that, but that was a bridge too far.   And when I did stay with her for a couple of days when my dad was in the hospital, it was absolutely horrible.  She was furious with me for starting to warm up a dinner for her (because she always wanted to eat at 5 on the dot) without her telling me to do so and exactly what she wanted—I had picked her second choice from the day before since she had not voiced any preferences.  She was furious with me for staying away too long with my dad at the hospital.  And she was furious with me for going to church on Sunday, because I was there to take care of her and how dare I go to church.  She was not really all that laid up at that point, so it wasn’t like I needed to support her to and from the bathroom or anything.  The second night I was there, the trundle bed in the extremely cluttered ‘spare bedroom’ (read this as junk room with a bed stuck in a corner) partially collapsed with me in it, and she didn’t even call out to see if I was OK.  The whole situation was just unbelieveable.

And really, although she said that she had done so much to support the previous generation during her SAHM life, the fact is that all she really did was visit her own parents to help them with bills and bookkeeping every two weeks.  She never even considered inviting my dad’s mother to stay with us after her hospitalization, and she certainly didn’t go and nurse anyone, ever.  So there was an element of delusion in the mix as well.

ETA:  I did, when I was younger, offer (in writing, even) to take a leave of absence from my engineering job to stay with and take care of my grandparents while my grandfather recovered from back surgery, since my grandmother already needed a lot of care because she had cancer.  I could afford it and had that kind of leave available from my employer.  Looking back on it, it’s interesting that there were two housewives with empty nests in the family who could have done so but did not volunteer, which in retrospect is a bit odd. And my mom was one of them.  I felt like I could offer because it was a specific time frame that everyone could agree to, not open ended.  And I would probably have figured out how to do something like that for my parents if they had a well defined, short time frame need, but it was an open ended, utterly miserable, thankless situation that would not have gone well at all.

 

Edited July 5 by Carol in Cal.

[Ottakee]

This stuff is just all HARD.  Medicine is changing so much and so fast.  Uncle thinks she should just get a new heart (her sister, my MIL did get a kidney transplant and lived another 20+ years) or that the meds will just clear out decades of plaque and make her strong again.

I appreciate modern medicine for so many things (I had experimental life saving heart surgery at 3 1/2 that is now much more of a minor surgery--but at that time had a 50/50 chance of surviving the surgery) but yet I wonder how much we are just prolonging death and increasing suffering.  And to be honest, I don't want money to drive medicine, but end of life care in ICU is extremely expensive.

[prairiewindmomma]

I think grief/denial/bargaining clouds a lot of decision making also. Of course your uncle wants a magical fix to your aunt so that her problems go away. He’s not ready to face change or say goodbye. It’s hard for everyone to navigate, for different reasons. Hugs to all of you!

[Ottakee]

29 minutes ago, prairiewindmomma said:

I think grief/denial/bargaining clouds a lot of decision making also. Of course your uncle wants a magical fix to your aunt so that her problems go away. He’s not ready to face change or say goodbye. It’s hard for everyone to navigate, for different reasons. Hugs to all of you!

Yes, that is it.  Going from being home a week ago living their life to “she has only a few days to live” is a huge shock.

[Ottakee]

Just an update.

Finally last Sunday they moved her to DNR status from a full code.

She went home Monday for a few hours on hospice but despite everyone spelling things out very clearly to uncle he didn’t understand he would be the caregiver at home…..and a few hours later she was back in ER via ambulance.  They took her off hospice care.

Tuesday care manager called and asked me to come to a family conference Wednesday which I did.  Uncle, son and daughter. 2 SiL, 1BIL were there and her brother was on speaker phone from California.  Decision was made to keep her on the IV meds until Saturday noon and then move to hospice care….staying in ICU and moving to hospice care at any moment it was needed.

She passed away about 2:35 today.

 

i think that this plan allowed family to better see that she was failing and not getting better but also gave her the high level ICU care she needed and then hospice and hospital staff was there when she passed.

[Laura Corin]

@Ottakee I'm sorry for your loss.

[Miss Tick]

You are such a kind, generous person

[prairiewindmomma]

May the family find peace and comfort in their grief.

[Ottakee]

27 minutes ago, Miss Tick said:

You are such a kind, generous person

Thank you.  I try but this year has been a lot.

[Kassia]

6 minutes ago, Ottakee said:

Thank you.  I try but this year has been a lot.

Yes, it has been so much.  I'm very sorry.  

[mommyoffive]

I am so very sorry for your loss. I am thinking of your whole family today and sending some prayers.  Lots of hugs to you @Ottakee, I am sorry this year has been so hard.