End of life issues....an ICU nurse looks at intensive care......trigger warning

[Katy]

We didn't do viewings after my FIL or my mother died.  It was about $600 each for the cremations.  Catholics discourage the spreading or keeping of cremains so we also bought plots at the cemetery.  That was fairly pricey but includes the right to bury up to 6 more people if they are cremated.

 

I ordered an urn vault online for my mother after realizing that the cemetery sold us one for $500ish dollars for my FIL. And that was at the diocesan cemetery.  My mother's urn vault was "nicer" than his and I paid $95.  I'm not sure what makes grave vaults comparatively nicer but I swear there was blue metallic spray paint on the one we were sold for my FIL.  I had no idea though before we paid that high price for one for my FIL that such a thing was even needed.  And when they said I needed one, it didn't occur to me that there were much less costly options online.  

 

I realize this might be sensitive, but if you don't mind, would you share the link for the place you bought this?  I helped someone look online once, the site we found seemed a bit sketchy, and they decided to go with the expensive option in front of them instead.

[goldberry]

OTOH, it can be very difficult to make the living will in enough detail to allow the spouse not to have to make any decisions, since it is not feasible to forsee all conditions and possibilities.

For this reason, I have chosen not to stipulate what extent of life saving measures I want, since I cannot predict the prognosis after the event that renders me unable to give my opinion - be it a car accident or a terminal disease. Being resuscitated after an accident in my 50s may restore me to full health; being resuscitated in cancer surgery at age 80 may just prolong suffering.

I have given power of attorney to my husband to make medical decisions for me. We also have ongoing conversations about the quality of life that we find acceptable, and so I trust that he will interpret my wishes in the context of the situation and decide in my best interest. I cannot be certain that this will lead to the "right" choice, but since we have no crystal ball, I feel that is the best I can do.

 

This is exactly my choice also!  DH and I feel the same about things, so I trust him.  I don't want to be kept alive if it is clear there is no realistic hope for recovery, and he knows that.  But, I didn't want to have a will too specific that he felt forced to stop procedures when he thought they really might help.  Also, I wanted him to be 100% okay with the choice he made, and not feel forced into it by too many specifics in my will.  He knows how I feel, and I know he will honor that to the best extent possible.

[Guest]

Yes, I edited to correct that.

 I think I sounded rather snippy with my response.  Please forgive me.

[goldberry]

My dad is 85 and has lots of heart problems.  But he is fairly healthy otherwise, active, out and about, and takes care of my mom (83) who has mid-stage dementia.  He had to have an implanted pace-maker/defibrillator this past year, and also go on some pretty heavy duty meds to keep him from going into afib. His heart stopped twice before we got it figured out.  But there was no consideration of not treating.

 

My mom has had a long and hard life, and even before her dementia felt like she was "ready to go" and did not want anything prolonging her.  Now with her dementia she rarely leaves the house.  She is angry most of the time, because she is paranoid and confused about things.  When someone comes to see her, she visits, but she won't come to family gatherings anymore because she gets scared and confused.  Mom has heart problems too.  She has flat out said to all of us, if my heart stops, do not revive me.  Do not call 911 until you are certain I am gone.  We will honor that.  We are not going to tell her, but you could have a few more years..

 

Two totally different situations that have nothing to do with age, but everything to do with quality of life, and also with just choice.  

 

My friend's dad is 85.  He is in a wheelchair, but still has friends, visits, etc.  About 3 years ago he had a quadruple bipass that was very hard on him.  After recovery, he made it very plain to the kids - no more surgery.  Done with that.  So he continues with medication, was recently in the hospital for fluid in his lungs, but that is his line - no surgery.  They will honor that.

 

Each situation is different.  I agree it is a form of age discrimination to assume that older people don't know what's best for them and can't decide what they want and don't want.

[SparklyUnicorn]

It's not done at all in Germany; I never heard of it.

Really, why would I want to look at the waxen embalmed corpse?

 

Oh it gets even crazier.  I have several family members who take pictures of the dead bodies.   Good grief.  We had it for my mother, but that was not my choice.  My sister wanted it so I figured since I didn't care I'd let her go with whatever she wanted.  I would have been fine with cremation followed by dinner out somewhere. 

[Reefgazer]

No worries!

I think I sounded rather snippy with my response. Please forgive me.

[LucyStoner]

Oops double post.

Edited March 7, 2017 by LucyStoner

[LucyStoner]

I realize this might be sensitive, but if you don't mind, would you share the link for the place you bought this? I helped someone look online once, the site we found seemed a bit sketchy, and they decided to go with the expensive option in front of them instead.

My mom died nearly eight years ago. I'm pretty sure it was this place but I can't say for certain. http://www.perfectmemorials.com/navy-medium-classic-marble-the-perfect-urn-vault-p-1873.html?products_id=1873zmam=40893252&zmas=1&zmac=1&zmap=PM2873&gclid=CjwKEAiA0fnFBRC6g8rgmICvrw0SJADx1_zAUi7QstdWEZw99kEC557toTJxlD_CdRI3fHpSm8q0VxoCO3Xw_wcB

 

The one I am linking looks very similar to hers but we did green instead of blue. I remember we had the plaque personalized and the options on this site look familiar though I imagine a lot of vendors sell the same thing. The place was very nice. Also, my mom's name was a less common spelling of a common name and a woman called and confirmed they had it correct. She was very kind and didn't upsell me, she just wanted to make sure it arrived to us with the correct name. I'm almost certain it was this site but it was a bit hazy. My mom died 5 months after my younger son was born with some health complications so we were burning the candle on both ends.

Edited March 7, 2017 by LucyStoner

[Jean in Newcastle]

Just one addition on the whole medicine thing.  Everyone in dh's family was saying that it was MIL's choice regarding meds and so they were undermedicating her.  But she had dementia.  She couldn't make that decision.  Yes, if they had continued she would have died but it would have been a painful miserable death.  I lobbied for medicating her appropriately.  It won't prolong her life as such but it won't hasten her death either.  And it makes the life she has left bearable even if her mind is going.  She does have DNR orders etc. on file and none of us would try to change that. 

[TechWife]

I have been on multiple medications for quite a while.  I am doing fine.  If I am still doing fine at 80, I will still be taking multiple medications.  At this point, my dh knows that I do want to be revived.  I don't have dementia and I am not that old.  OTOH,  I can't understand the idea of medicating end-stage dementia patients unless it if for something that makes them feel better.  So asthma medications make someone feel better- having an asthma attack kill you is NOT a pleasant way to die.  High blood pressure, heart medications, anti-clotting medications don't make you feel better.  They help prevent death and I really don't see why we should work so hard to prevent death in end-stage dementia.  Notice= I am saying end- stage, not any stage of dementia.  Early stage dementia is a whole different animal and a person in that stage is aware of their surroundings usually, can enjoy life, etc.

 

I know and have met plenty of 80 and 90-year-old people who have their faculties and seem pretty healthy.  One friend of mine is mid-80's and just had an ambulatory spinal surgery to put something in her spine to prevent collapse and bad pain.  She recovered very quickly and is back to being her usual self.  In my view, better her get some care than some other people who are younger, don't care for their bodies at all and are leading destructive lives.

 

High blood pressure meds and anti-clotting meds help prevent strokes. Not all strokes are fatal. Living with the after effects of a stroke is life altering for everyone involved under normal circumstances.  My father had dementia. I can't imagine caring for someone with dementia post-stroke. 

 

I have a hard time with your last paragraph. It comes across as very callous. My brother was an addict who led a destructive life. He was also a human being. I would hope that he would have gotten the same care that your friend did. Just because he was an alcoholic didn't mean that he deserved to live in pain that could be prevented by a surgery.  

[TechWife]

It might be helpful to talk numbers here since there are many care givers on the board right now who are facing these future decisions when it comes to funeral planning.

 

 

These prices are for a mid-sized town in Georgia. They are only a couple of months old. 

 

Basic Burial Package  $5490

Includes: 

Removal of remains - $275

Basic services of Funeral Director and staff - $2000

Washing and disinfecting remains (no embalming) - $150

Minimum non-metal casket  - $1895

two hour visitation prior to a graveside service - $300

Funeral hearse - $275

Graveside service - $595

 

Additional funeral home costs (these are as needed/as requested): 

family vehicle - $275 (this is to have someone drive the family to the cemetery and back to the funeral home)

flower van - $100 (to transport flowers from the funeral home to the cemetery and/or the family home)

transfer to/from airport - $375 (additional $3.75 each mile over 50)

transfer of deceased from funeral home to place of autopsy and return to funeral home $900

embalming $950

special care for autopsied cases $250

refrigeration per day $50

use of facility & staff services for visitation (per day) - $595

use of facility & staff services for visitation (same day of service) - $300

Use of facility& staff services for funeral in chapel  - $595

staff service for funeral at other facility - $595

use of faculty and chapel for memorial service w/out remains present - $595

staff services for memorial service at another facility - $595

staff services for memorial service at another facility w/out remains present - $595

equipment and staff services at graveside service - $595

shipping container (for airline transportation of remains w/in continental US) - $150

international shipping $3100

consulate document fees $400

register book $50

50 memorial folders $75

life tributes DVD $100 + $20 for each additional copy

laminated obituaries - $2

box of 25 acknowledgment cards - $25

 

 

Direct Cremation $2325.00

Includes: 

removal of remains $275.00

basic professional service $1300

cremation fee $750

 

Additional cost: 

urns $350 - $545

 

Don't forget to add applicable taxes for your state. 

 

 

I don't have exact prices for the cemetery because my parents were buried at a national cemetery at no cost to us (my father was a veteran). We estimated this benefit saved us about $6,000 for each of my parents, a total of around $12,000.  By no cost, I mean that we were not charged for any of the fees cemetery's charge for - the plot, the vault, opening/closing the grave, canopy & chairs and perpetual care.  I highly recommend all veterans' families seriously consider this option. The veteran and spouse can both be buried there, in any order.  In some cases, dependent children can be buried there. There are restrictions on days of the week (Mon-Fri unless died on active duty or rank of Colonel or above, in which cases they will do a weekend burial). You also have to schedule a specific time and if you are late, you may have to wait until the end of the day. Burials are scheduled in 30 minute intervals. The cemetery personnel are extremely professional, there is the presentation of the flag by active duty personnel as well as taps played by a live trumpet player (not a recording). The downside for us was that we couldn't go directly to the gravesite. The service was in a pavilion and then they transported the casket to the gravesite for burial. We could have watched from the roadside if we had desired. They don't allow people in the area with open graves because there are multiple graves open at one time and they are in a row, so there is no room. I don't know if all national cemeteries do it this way. The cemetery is also one hour from my parents' home, but we are not ones to visit cemeteries frequently, so that was not a detriment to us.  Their grave marker was also provided at no cost (Dad's information is on the front, mom's on the back). You need to have a copy of the veterans discharge paper - it's Form DD214. I don't know what the process would have been if we had not had the DD214. Thankfully, my father kept every single military order he ever received.  

[TechWife]

I realize this might be sensitive, but if you don't mind, would you share the link for the place you bought this?  I helped someone look online once, the site we found seemed a bit sketchy, and they decided to go with the expensive option in front of them instead.

 

Not vaults, but Costco does sell caskets and urns. There are a few states they can't ship to, Georgia being one of them. 

[TechWife]

I typed out a lot and decided that I was over sharing. So, here are my abbreviated comments. 

 

My parents died seven weeks apart. My father died in the ICU, my mother in inpatient hospice. Both deaths were unexpected. They were 86 years old. 

 

The ICU experience was much better than the hospice experience. We found the ICU nurses to be caring, compassionate and realistic. In no way could I say that my father was over-treated. When everyone realized that his condition was, in fact, terminal, they advised us of the options (none would actually cure him) and respected our decision to withdraw treatment. They provided palliative care there in the ICU and cared for the whole family's needs. They took great care of my father and were amazing when he actually died. In contrast, the hospice nurses seemed, at best, indifferent. That's the only way I can describe it. The morning my mother died, we couldn't get a nurse to come in and give her pain medicine - we had waited for 1 1/2 hours. The nurse actually walked into the room a few minutes after my mom had stopped breathing. She actually shrugged when we told her. The hospice nurse was making rounds at the time, and he, too, seemed indifferent.  Not all of the nurses and hospice personnel were indifferent, some were quite kind to my mom and to all of us. However, there wasn't the personal care or personal touch we had experienced in the ICU.

 

 Because of this, I will say that my experience has not been that of an overly aggressive ICU. I don't doubt they exist, but I don't think it's a universal experience. 

 

 

 

Edited March 8, 2017 by TechWife

[SparklyUnicorn]

well that's it...I can't afford to die

 

 

[TechWife]

well that's it...I can't afford to die

I'm grateful my father had two small life insurance policies. We used one for his expenses and the other for mom's.

[SparklyUnicorn]

I'm grateful my father had two small life insurance policies. We used one for his expenses and the other for mom's.

 

My mother bought a very small insurance plan before she was diagnosed with cancer.  It was one of these no questions asked, but you have to live for at least X amount of time to collect on it.  She died three days past the required length of time.  It was enough for a modest funeral. 

[eternalsummer]

My dad was cremated for not a ton of money-  I think around $500?  Maybe less.  I bought a lovely urn on Etsy of all places for less than a hundred.  We rented a meeting house in a local nature preserve/park area for $200 or so and did potluck food; my uncles played (they are professional musicians).  There was no officiant as we are not religious.  It was really nice, actually.

[eternalsummer]

I should note that we did call around a *lot* to find the cheapest rate in the city.

[Laura Corin]

My mother doesn't want to plan her funeral.  I intend to have her cremated cheaply and then meet my brothers near her childhood home, and scatter her ashes there.  The cremation will cost £1,000 all in.  Then we just pay for an urn and a weekend away for my brothers and me.  She doesn't have any friends.

[fairfarmhand]

Particularly if the need for care resulted from a lifetime of willfully irresponsible choices.

 

Anyone who has not served as a full time caregiver to an adult that lacks cognitive function yet still has the ability to create emotionally and physically demanding situations, cannot fully comprehend what it's like to do it for a full 24 hour cycle, days, weeks, years on end. I'm not trying to shut down comments from anyone who hasn't done it, but suggest that if you haven't walked this road, or in tandem with someone who is doing it, you likely need a reality check. Things come up that you never could have imagined.

 

Home care is not cheaper. If you price private full time services equal to a nursing facility, it's way pricier. If you expect a family member to do it, you still need respite caregivers. Dementia patients don't keep normal schedules, and unless you never plan to leave the house and can groceries etc shipped to your door, you need sitters. You need to childproof the house to beyond the degree necessary for children. You have to figure out patient transport to medical visits. The caregiver sacrifices an income and more, as their own relationships drop off because they are no longer free to commit to any activity other than caring for the elder. Children of caregivers have their activities restricted because their parent is not free to transport them to games, practices etc. The caregivers' own physical and emotional health suffers to a degree that results in increased medical costs. I could go on and on...

Thing is this: those who advocate at home caregivers often don't envision years spent doing g this. Most people think oh end of life care? Oh six months...several weeks.

 

You can do it for a few months. After that its grueling.

 

And people can live for years in bedridden states, incontinent, incoherent.

 

People say oh changing adult diapers that can be done by family.

 

What happens when it's a 175 pound man married to a 110 pound woman? What if he's combative? What if he lacks the upper body strength to help turn himself?

 

And doing this several times a day for months or years? Not that simple

 

 

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