A Fitting Final Gift From Jimmy Carter

[malaise]

https://www.nytimes.com/2023/08/28/opinion/jimmy-carter-hospice.html

When former President Jimmy Carter entered hospice care in February, many assumed that his death would be imminent, a matter of weeks at most. But six months later, he is still spending time with family and friends, still enjoying moments with his wife of nearly eight decades. Life continues, albeit under a shadow.

As he now approaches what has been reported to be his “final chapter,” Mr. Carter’s decision to enter hospice and to continue publicizing that choice is a fitting final gift of candor from a former president to an American public that has long been uncomfortable with our own mortality.

Here in the hospital where I work as a critical-care doctor, the very word “hospice” so often conjures the idea of death and defeat. Just a few days ago, I found myself in a conference room with a man whose wife was dying. She was in her 50s, with cancer that had infiltrated her chest and abdomen. Her time was short, a matter of months at most, and she was in pain and scared, and wanted to be at home. So I suggested to the husband that we consider hospice. I said the word gently, but even so, my patient’s husband flinched. No. His wife wanted to do everything, to fight, to not give up. It wasn’t time for hospice. Not yet.

That is why hospice services are so often engaged late, in the days immediately before death, if at all. Half of patients in hospice are enrolled for only 18 days or less. One-tenth are in hospice for only one or two days before they die. It is easy to understand how this happens. After all, to choose this path is to acknowledge that we will all end, a reality that few of us are willing to face until there is no choice left.

———-
My hope - he’s still enjoying ice cream on October 1 - his birthday.

[Joinfortmill]

1. Thanks, doc. We need to hear this.

[malaise]

2. Someone should send it to MoscowMitch

That is all

[2naSalit]

79. He's too scared...

To die. Like my dad, he knows what he did during his life and that he ruined the lives of many people and he's afraid of going to hell. Not sure there is such a place but if he believes there is and people who do bad things end up there when they die... I hope he is miserable about it the whole time until he finds out.

I have a very different view of what takes place when we die but that's another topic altogether. And I am not afraid.

[malaise]

80. He sure looks terrified

There will be no tears here

[2naSalit]

81. Nor here.

[Croney]

3. This happened with my mother, two years ago.

She was 98 and still capable of getting around her home with a walker, and didn't have any obvious signs of imminent decline, so I was surprised when her husband decided it was time for hospice care. He knew her condition better than I did. It turned out to be a wonderful improvement to their quality of life. She lived about six more months, and died peacefully.

[malaise]

4. Death with dignity

is the best option. Your dad was right.

[vlyons]

5. As a 76 yr Buddhist with heart disease, I'm not afraid of death

No one knows the day or hour of his death, but all things are impermanent, including us. I don't really know if reincarnation is true, but I like to keep an open mind about it. If so, I wish for each of us to have the most auspicious rebirth possible. That's why it's important in this life to train my mind away from the negative emotions of greed, hatred, and ignorance, which are what keep us locked in suffering. The practice compassion and wisdom and to work for the benefit of others are what makes a happy life.

[druidity33]

6. over the years...

i have come to really appreciate your perspective on our issues as a society and democracy. Thank you SO MUCH for continuing to advocate for a right path forward. I try to let go of the negative emotions and attachments as best i can... it's hard in this day and age.

[vlyons]

11. Thank you so much

Negative emotions are not real, they only SEEM real. They have no mass and can't be weighed on a scale. They are devoid of intrinsic self existence, as is everything else -- including us. This is the Buddhist teaching on emptiness, which is what is called "wisdom." We do feel emotions, pleasant and unpleasant. Best to recognize when they arise and let them go. That is a big part of training the mind not to get sucked into negative emotions.

[malaise]

7. My essential philosophical truth is that everything that lives eventually dies

so fearing death is folly. I am just happy to have been born and to have enjoyed a healthy and happy life. When I see the pain and suffering on this planet, I realize that I have lived a charmed life. I have absolutely no fear of death.

[Magoo48]

13. Everything you said, and I keep my own end close, as a welcome visitor in my thoughts. Peace.

[central scrutinizer]

8. Our experience

My wife was diagnosed with pancreatic cancer on April 15, 2016. She endured chemotherapy and radiation therapy but was so miserable that she decided to stop treatment and entered hospice care. The oncologist had her on OxyContin and fentanyl patches for the pain but they were not helping much. The day she entered hospice, their medical staff started her on methadone and the change was dramatic. They said the fentanyl patches weren’t doing anything because they require subcutaneous fat for absorption through the skin. She was skin and bones. The methadone with occasional oxycodone pills enabled her to resume normal activities. She signed up for an art class, was able to drive again. She was in hospice for almost eight months before she died at home with family present.

[malaise]

10. Wow! That's a horrible cancer

So glad she found comfort.

[peacebuzzard]

12. your wife was a lovely person,

so glad she enjoyed art again and was at home. I am so sorry for your loss.🌷

[mountain grammy]

23. She was able to go on her terms..

and had 8 months of actual living. This is an experience that could help so many. Thanks for posting.

[central scrutinizer]

56. The only advantage to a terminal diagnosis

Is you get to participate in planning. She opted for a green burial; no embalming, no casket, no cremation. Her family and friends created swatches (knit, crocheted, appliqué, embroidery) that were sewn together to make a shroud. Her brother constructed a shrouding board in his wood shop. The shroud contained a small pouch for notes that the mourners wanted to send with her. We then filled the grave ourselves.

[progressoid]

59. Beautiful. EOM

[mountain grammy]

62. Someone once said

I don't worry about dying, I just don't want to be there when it happens.

I've always told friends and family, if I die in my sleep don't be sad, because I'm not. That said, I admire your wife's decisions and when my time comes I hope to have the same courage and foresight. No matter how old she was, I'm sure she is so missed and loved. What a remarkable person.

[brer cat]

9. K&R

[musclecar6]

14. Jimmy's

Had a long life and marriage and both he and Rosalind have done a lot of good with their lives. We democrats and independents and more than a few republicans think the world of them. When we get down more than a little bit as we see the awful direction taken by the off rails evil leadership of our National Disgrace and his willing congressional sycophants, it helps to focus on Jimmy Carter, Barack, Michelle, Joe, Dr Jill, Kamala and the First Gentleman, Bill and Hillary, and so many others that have worked very hard to be kind and help others less fortunate.

We are the party that helps other as a mantra, the Republicans used to try and meet us halfway. Now unfortunately, they only strive to help themselves with no regard for honesty, integrity or decency. Maybe when the Orange Menace finally winds up hopefully convicted and sentenced to prison, things may start to change.

[Fla Dem]

28. No truer words were ever written

Jimmy Carter, Barack, Michelle, Joe, Dr Jill, Kamala and the First Gentleman, Bill and Hillary, and so many others that have worked very hard to be kind and help others less fortunate.

We are the party that helps other as a mantra, the Republicans used to try and meet us halfway. Now unfortunately, they only strive to help themselves with no regard for honesty, integrity or decency.

musclecar6

Thank you!

[musclecar6]

61. Thank You

For the kind words..

[plimsoll]

15. I would guess that the funeral arrangements are all set out too.

It's something people don't seem to want to do for themselves usually, so they leave it on their family when they're least able to cope.

[spanone]

16. K&R

[Deminpenn]

17. Too late smart

Enrolled my dad too late. Had I done so earlier, he'd have passed at home where he wanted to be. Chose hospice for my mom just as she started to decline. Nurses were wonderful. She was well cared for, had all she needed and died peacefully.

[kentuck]

18. I so hope that Jimmy makes it to his birthday.

Still my favorite president.

[democrank]

21. He's my favorite president as well.

The Carters are a real national treasure….their humble ways an example for all of us.

[EYESORE 9001]

19. I want to believe that I would enter hospice and/or palliative care ASAP

if I were facing something similar. My spiritual leanings are all over the place, and although I don’t fear death or punishment in whatever afterlife may await, I still want to avoid agony if possible.

[tiredtoo]

20. I just went through something similar myself

82 years old living with COPD for many years. 4 years ago i was diagnosed with pulmonary fibrosis also. Upon going to Dr. Google I found the prognosis was about 2 years after diagnosis it ends. Well, it is now 4 years so, I feel like I am living on borrowed time. Have some in home help as I live alone with my dog. One of my helpers just got a different job and her availability is limited. Palliative care nurse has been pushing hospice care. After getting prices and services available from private care operations I asked about hospice care. Showed her the list of what private care would provide me. (shopping, light house cleaning, banking, doctor appointment transportation and so on). She said they don't do any of that stuff, they take care of my health needs. Not all needs they would not take me to foot doctor for nail trimming or eye doctor for wet macular degeneration shot. And this is why I choose to avoid Hospice care until the last possible minute.

[mountain grammy]

26. Are there any good senior care organizations in your area?

We have a local Council on Ageing and a decent senior center that offers transportation for seniors to access services and some in-house assistance. In our isolated community it's been a great resource for many seniors living alone.

Good luck to you. I don't think many people think they'll end up alone, but I see it all the time, and even in my own future.

[tiredtoo]

39. Yes, we have county commission on aging

I was getting help from them and then it stopped. I called and they said they will look for another service to help me. It has been a month and nothing yet.

[mountain grammy]

43. I'm so sorry..

I hope your situation improves soon. If it's been a month, I would try to call them again. I did some volunteer work for out local group and this does happen because the volunteers and staff are usually old and the turnover is constant. Please try again. They may also be able to suggest other resources.

Bottom line, getting old in America is too often a bad experience because of a severe lack of public health facilities.

[malaise]

29. Enjoy every 'extra' minute

[summer_in_TX]

78. My dad was in hospice care for about nine months.

He died June 20.

In our case he was able to stay in his home as he wished. We were able to arrange for a foot doctor who traveled to continue to come treat him in his home. His toenails were too thick for us to manage and he was being treated for nail fungus for part of that time. His macular degeneration was at a point where he didn't think the shots were helping anymore and he was very thankful not to keep doing them.

Dad was lucky to have five of us kids to help with transportation, shopping, food, and personal issues like his enemas. We had a hospice case manager overseeing his care and home health folks coming in for two three-hour blocks until the last month or so when he needed 24 hour care. My sister who his executor had to track how various items were paid for, but his personal funds were stretched thin by the end.

[The_REAL_Ecumenist]

22. More people need to understand that Hospice DOESN'T ALWAYS DEATH....My BFF's daddy

FLUNKED hospice 4 times over the course of 15 years until he "graduated" to the afterlife in 2011. I "FLUNKED" home hospice in 2011 but didn't realise it until 5 YEARS LATER, I was clearing out old paperwork and found out. I laughed my kneecaps off & went to show DH. The look on his face , (as I continued to laugh myself into literal tears). So, for President Carter to teach the country grace, happiness. love & peaceful acceptance of the doorway we all will walk through.

[wendyb-NC]

24. Thank you for posting, Malaise

That' is a beautiful tribute to former President Carter. It also, offers some sage words for us all, to ponder.

[malaise]

31. It is a lovely tribute

[Botany]

25. Jimmy and Rosalynn Carter's final gift to all of us.

Grace. And all over America people living in homes that they helped to build.

I hope they are in the same room and get to hold hands.

[NowISeetheLight]

27. My Dad

My Dad utilized Hospice of the Valley in AZ. He actually went in and out twice before finally passing. By that time, I was living in South Carolina and really appreciated the great care he received. Having worked in hospitals in Arizona prior, I was familiar with HoV. They kept me updated almost daily in his status and I still remember the morning in my office when they called and said he "passed peacefully in his sleep last night".

I remember one ICU patient with stage four lung cancer in the hospital I was working at. It had gone metastatic and was in her bones and liver. She was in her late 70s, and her sister absolutely refused to let her go. I'd sit in case management meetings and everyone was just livid. She lingered for months until the hospital ethics board had to get involved. She was trached and on a vent for months and was basically a vegetable. I always swore if I ever got that sick, I'd be moving to Oregon where they have assisted suicide. I have no intention of lingering if I can avoid it.

[malaise]

32. People are terrified of death

Given my world view, I find it impossible to process.
We’re all going to die so wake up and live.😀

[NowISeetheLight]

33. Absolutely

I'm more afraid of suffering and lingering. Quality of life is what matters. I'm totally fine with the knowledge that one day I'll check out. Who wants to live forever anyway.

[malaise]

41. I think that's generally true

😀

[tiredtoo]

40. Not afraid of dying but

I want to spend as much time left as possible enjoying each and every moment. The message I got from hospice is: they will keep me comfortable as I die. They said I will no longer be receiving my regular meds. Blood pressure, cholesterol and so on. The big one for me was not taking me to eye doctor for shots to control macular degeneration. I would prefer not going blind prior to death. After death I don't really give a shit but, I want to see stuff while I'm still living.

[malaise]

42. I get it

The benefits of living in a shithole country is that no one gives a flying eff if you choose euthanasia. 😀

[Oppaloopa]

69. Wonderful Thank you Malaise

[malaise]

71. Just for you 😀

[bdamomma]

83. So wake up

and live.......Amen to that. Live each day to the fullest!

[malaise]

88. A beautiful song

[Attilatheblond]

35. Think I heard Vermont has an assisted death system now

Last edited Thu Aug 31, 2023, 11:07 AM - Edit history (1)

Always wanted to see Vermont. So many of the best people I ever met came from there. And I so love hills, mountains, and trees. Have checked rail service as I really hate to fly. There's a way.

edited for typo as my fingers aren't awake yet

[NowISeetheLight]

37. Experience

New England is great. In the 90s I drive OTR semi for several years. It was my first "real" job after years of trying to survive after leaving the Navy. I was able to be alone.

The job wasn't easy, crazy hours, not enough money and living in a truck is different. But the travel was incredible. I visited Maine one fall as the leaves were changing. It was just beautiful. I kept a map in the truck and by the end of my driving career I'd been to 49 states and six Canadian provinces. I also drove on nearly all interstate highways in the US.

The longest run I had was picking up one of those play palaces in Illinios for a new restaurant in Juneau. It was a Burger King I think. I had to deliver to a pier to offload and a boat took it over. It was only 8000 pounds so an easy load. One other run I had was over Christmas week. I loaded in Connecticut and delivered in Sacramento six days later. I was late as I was stuck on Elk Mtn in Wyoming on I80 for two days at a rest stop due to snow. I don't miss the hours but I do miss the freedom.

[blm]

30. Such a needed sentiment in today's world.

[Wounded Bear]

34. K & R...nt

[jaxexpat]

36. How many can afford to spend months in hospice?

I think you're hitting the wrong buttons, doc. Reality for most is that it's out of network and out of pocket. For them, there is no real choice. Nor does the healthcare/health insurance cabal encurage longterm hospice. Quite the opposite in fact. If you're uninsured, it becomes code for homeless. In any case, it's a culvert for your last days and hours.

People's perception of hospice has practically nothing to do with their use of their very good services.

[Ms. Toad]

45. Medicare covers nearly all of the costs of in home hospice care.

Room and board is generally covered by original Medicare (depending on the supplement police purchased)

Private insurance also generally covers it.

[ShazzieB]

50. Good to know!

[jaxexpat]

58. Ther OP was premised on exemplifying Carter's 6 months stay.

Do you believe Medicare or an affordable private insurance will cover that? I knew a woman dying of cancer who was evicted from hospice after 5 weeks even though she had "affordable insurance" which, it turned out, refused to pay the hospice's rates. I'm not sure what her situation with Medicaid was, but being Florida, it did in no way intervene. She lasted 8 weeks after the eviction. Somehow, they relented and allowed her to return for her last week of life. I suspect her doctor intervened some way, but the only certain thing I know is that by then she and her husband had exhausted all their resources. Her employer sponsored a crowd funding web site which was their only source of funds for her last month. Her husband was also dealing with "Desert Storm" PTSD the whole time. It was very all around sad for everyone.

A toast, everyone, to Ginger, a real person who faced real "monsters".

[Ms. Toad]

60. Medicare does.

And the Carters are not "staying" in hospice. They are at home. The only question under Medicare is payment for room and board (not applicable to the Carter's situation. Hospitalization days are relatively limited (60 days for a single co-pay, then $400/day for the next 30 in a single year, then $800/day for up to 90 lifetime days). All supplements add 365 days of hospitalization to the basic Medicare coverage of 60 days, and pick up part or all of the copays. Most Medigap plans cover most of all skilled nursing facilities.

As to qualifying plans under the ACA - I don't have any direct experience with tha - but a quick search indicates that at home hospice (as the Carters had) is covered.

As to the woman you referenced, there are horror stories, especially before the ACA. The ACA changed a lot of things, including lifetime caps which heavily impacted cancer patients. And Medicaid is different from Medicare. Assuming she had a traditional insurance plan, even under an ACA plan, her options for where she obtained her care would have been limited.

[jaxexpat]

65. I was thinking about in-facility care only. Of course, in-home care would be more affordable.

Thanks for your time.

[BumRushDaShow]

87. We went through that with our mother

She was in the hospital for about 5 days and then transferred to a hospice facility for 2 days when she passed away there. Her Medicare and her supplemental federal survivor's FEHB (Federal Employees Health Benefits) health insurance plan covered everything for the hospital stay 100% but NOT the hospice, which we picked up (although the federal insurance may have covered any meds while in hospice as the bill we got was a flat rate for room and board and I don't remember if that was comprehensive or what).

[HappyLarge]

86. I am a hospice nurse

Medicare and private insurance cover hospice care in the home 100%. But care in a facility is NOT covered by Medicare if you are on hospice. Medicaid (if you qualify) will pay room and board fees for patients using Medicare. Private insurance varies, some do have a room and board benefit for patients on hospice, it depends on the individual plan.
Most LTC insurance plans will also pay for 24h care for hospice patients without a waiting period.
If you are referred to hospice it’s a good idea to accept the referral and have the hospice people come out and explain it all and let you know your options based on your personal insurance situation. It doesn’t cost anything and you don‘t have to sign up for it if you don‘t want it.

[RussBLib]

89. Welcome to DU

Good info. It's all just too damn complicated with the private insurers prying and bribing their way into the Medicare/Medicaid programs. Wish we could streamline it

[Snackshack]

38. Thank you.

I’ve thought this myself and what an amazing man he is.

Trigger warning:

My mom decided she was done with treatments for cancer Dec. 2003. “Quality over Quantity” she said. I disagreed but I was not in a place then to help financially as I could be now…which really sucks when I think too hard about it.

Her insurance told us they would pay for no more unless she came up with several thousands dollar because she had reached a limit someone (death panel?) had decided that was what her life was worth. This after refi of house and selling off almost all she could… by 0930 on 4/27/2004 she was dead and I probably would have been also if not for Hospice.

She left Mesa and went to Parker Az for her last days. We have been going there all my life had family there. The Hospice in that area was a lifesaver. I had not been a caregiver before and I was not prepared to watch my mother starve to death. Which in the end is what technically killed her. She had a DNR and NO feeding tubes specifically so she weighed all of 72.6lbs on that day in April.

~1 month before she passed she still able to get around on her own and we could get time together but the last 35-30 days was pure hell. She became bedridden and slow faded away. That was when Hospice stepped in a literally threw me a lifeline with a nurse who came by every day to check on her and me. I couldn’t stop the cancer from taking her but I could keep her in familiar surroundings, keep her lips moist (throat cancer and surgery had damaged her ability to do so) and do my best to help keep the pain at bay.

I could not have cared for my step-father or grandmother after this if not for Hospice support at that time. There is just no possible way I could have. I was so naïve about what was coming,… totally naïve.

Hospice is the only organization I donate to because of the miracle organization it is and when I pass if I have anything left of value I will also give to them. There is no way I could ever truly repay them or the wonderful nurse who came to that place and helped because they cared. I suggest to anyone who will listen to do the same.

[malaise]

46. Sound advice

Mom had a DNR - she died in hospital after a fall but she had been I’ll for some time.

[Snackshack]

48. I'm sorry for your loss 😥

Thanks you.

I didn’t know her until I was 10 and it’s without doubt the toughest/hardest loss of my life and brought about a total re-wiring in my head from top to bottom that still surprises me almost 20yrs later.

I remember friends saying “time will make it better” but it doesn’t I have only found acceptance. It’s weird the disease was chronic but the end was acute and that has left an imprint on me of every second of that time.

[Ms. Toad]

44. I have friends who have been on hospice more than once.

Giving up the fight to stay alive, at nearly all costs, made life so much easier that it freed them up to live a bit longer.

[malaise]

47. Isn't that amazing

It’s the only way to live and die

[Snackshack]

49. So true

..and sad that it takes something so devastating for us to see our priorities are unwell and change.

That definitely happened with my mom from Dec 03 to mid March 04 I took a leave and stayed with her in Parker and it was some of the best memories I have now. Even though at that time she was already visibly ill so there was no ignoring it.

[Blue Owl]

51. K&R

[Attilatheblond]

52. My sister had horrible dementia, but was not able to stay in a care facility

To say she was difficult would be a massive understatement. If in a care facility, she would have had to be kept sedated all the time as she was damned stubborn and ornery.

Her spouse and our former paramedic brother managed to keep her at home and reasonably calm. The hospice people helped there in the last months and were immeasurably helpful with all the paperwork details when she just recently passed.

We should be grateful for such people, so caring, calm, rational, prepared. And I will always be grateful for the way Jimmy Carter lovingly taught those who would pay attention. His wisdom, kindness has been amazing.

[Recycle_Guru]

53. knr

[Initech]

54. Jimmy Carter is a national treasure!

[Mysterian]

55. I'm crying thinking about losing Jimmy

I love Jimmy and Mrs. Carter so much.

[Kennah]

85. You're not alone

[central scrutinizer]

57. One more note about hospice

They offered group grief counseling at no cost to the family after the death. The group met once a week. It helped me recover.

[Deep State Witch]

63. My Cousin Has An Inoperable Brain Tumor

We don't know how bad the cancer is, but we're trying to talk him into entering a hospice program. That way, things are open to the patient that normal Medicare won't cover. My MIL volunteers as a visiting hospice person in Florida, so my husband got all of the details from her.

[mamacita75]

64. Final gift

is truly what it is, Malaise. Thank you for sharing this. Later stages of life need to be discussed and shared like it is a part of life because it is. Most folks are afraid to face the fact that we all die. Not addressing it doesn't make it go away.

Jimmy Carter is such a dignified man. He has taught us so much about what life can be if we only open our eyes. Living your life for others is the best reward. Then, allowing others to care for you is enriching for all.

My studies were in Gerontology and death and dying, the mourning process and how we conclude our journey. I was a nursing center administrator in the 80s. The grieving process is gut wrenching. My mother was taken care of having hospice in our home for her. It was an enormous help and took off so much of the stress with long illness care knowing it was terminal. I highly recommend hospice for folks. Not all experiences are the same though.

I do hope he has ice cream on his birthday. Did not realize it was October 1st!

[malaise]

66. Welcome to DU

Many people can’t even use the words die or dead.

[SpankMe]

67. My mother-in-law went in to hospice on a Monday

She was gone on Friday...5 days in hospice. It wasn't cancer, it was upcoming natural old-age death. We had no idea it would be that quick.

On the other hand, I've known 2 elderly people who entered hospice - and never died. They left hospice care after somehow recovering from their seemingly terminal illnesses. One died naturally in her sleep 3 years later. The other is still living! And drives everywhere!

[malaise]

68. LOL for the on driving

😀

[liberal N proud]

70. My brother is in hospice and still mobile

We went to visit him, he still driving, we went out to eat. He has terminal cancer.

Hospice means, no more chemo, no more hospitalizations. He has hospice care that visits him at home.

[AllaN01Bear]

72. my late mom died @ home on xmas . i was in a kingman az hospital when

my late dad died . his fam was with him when he died . me included . we made it easier for him to cross over.

[W_HAMILTON]

73. If you qualify for hospice, get it.

Put aside the negative connotations.

You can qualify for it even if you aren't about to pass away and, no, contrary to the conspiracy theory, hospice does not "kill" people or made them pass away more quickly.

My mom had dementia and had been going downhill for a few years. She qualified for hospice for maybe two years, but I put it off because I had those same negative thoughts and worries about what it entailed. Finally, her care just got to be too much for me, so we entered a hospice program to get some extra help.

As (bad) luck would have it, I believe the day after we started hospice, she had a stroke.

The extra help I was hoping to get now became necessary help that still wasn't as much as was needed given her newly diminished state. Unfortunately, she passed away after maybe four months being discharged from the rehab facility back to home care with hospice.

Having said that, the hospice team was incredible. Oh, how much better our lives would have been had we opted for hospice earlier on when she qualified for it. So, anyone that bother to read my story, I hope you listen to my advice. From what I've heard, I wasn't the first person to tell them that I regretted not seeking their help sooner.

At worst, give it a shot. If it isn't for you, you can always terminate the care and go about it on your own.

[FirstLight]

74. Thank you for this... After seeing both my parents pass in 2022-23 it was a real eye opener

We never got to the hospice stage, Mom's stroke was so dibilitating that we had to make the decision to let her go, make her comfortable etc. It still took her 11 days to finally be at rest. (It was horrible having that conversation with the Dr and family in her room, she was still conscious and coherent, holding my hand. When the Dr suggested a feeding tube, she squeezed my hand so tight and visibly shook her head at me... I'm crying remembering it)

Dad's dementia spiraled after that, he was just lost without her. AFtter 60 years of marriage, I can't imagine. They were going to move him into hospice when his gallbaldder failed...he went septic before they could do anything. we spent the last days holding hands with eachother and telling jokes and stories so he could hear how wonderful our lives were because of our parents. We were so lucky to have parents that truly loved eachother...

They died exactly one year, and one day apart...by 12 hours...

[malaise]

76. That must have been unbearable pain and grief

[WinstonSmith4740]

75. I went through some serious changes when the doctor said "hospice".

My husband passed in 2010 after fighting cancer for 2 years. When the word "hospice" entered the conversation, I pretty much had the same reaction. (His cancer was not beatable...Lynch Syndrome.) I was adament that he was going to be "...at home, where he belongs". What I didn't understand, and what the nurse gently explained to me, was that hospice can come to you. I don't know how those folks do it...they are literally angels on earth. He really didn't need a lot of care, I was pretty much able to take care of his needs. But once he entered hospice care, his pain killers and any other drug was totally covered by Medicare. Hospice didn't cost us a cent. I was fortunate enough to work for a school district that honored Family Medical Leave, so I was able to pull my salary while I stayed home with him for his last month. So he was at home in my arms when his time came. Where he belonged.

I'm glad your patient is fighting. Sometimes miracles happen, but I know the fear and dread. But hospice care is in a league of their own. Even after Mike passed, they kept in touch with me for at least 6 months...checked in to see how I was doing, let me know about meetings and gatherings, especially at the holiday season. I had a very good support system with my family and friends, but it was good to know that there was someone I could call at 2 in the morning if I needed to. Knowing the person you love the most in the world will not be there to grow old with you is awful. But somehow, those folks made the transition a little easier.

I wish your patients the best.

[malaise]

77. Hospice sure sounds like the best option

when the reality of death is inevitable.
Sorry about your loss - glad they eased your pain.

[bdamomma]

82. A very nice

insightful post. Thank you, Dr.

[Roy Rolling]

84. A Legend

Love me some Jimmy Carter. He was a great president who gave us hope after the McGovern loss/Nixon debacle.

[senseandsensibility]

90. He embodies the meaning of service

I am literally in awe of his goodness.