Where to spend last days posted by LauraL @ 01:14 AM October 14, 2008

LauraL — Tue, 14 Oct 2008 01:14:21 -0000

Thanks so much for that information, jaded_heart!

Where to spend last days posted by jaded_heart @ 11:15 PM October 11, 2008

jaded_heart — Sat, 11 Oct 2008 23:15:43 -0000

Anybody experiencing substandard care should lodge a complaint with their state's ombudsman (posted by law in every long term care facility in the USA) plus available online at: www.ltcombudsman.org/ [ltcombudsman.org] Also, each state is regulated by a licensure board and facilities are certified by medicare as well as medicaid, providing they accept those funding mechanisms. The state regulatory boards, Medicare, and state medicaid offices will also accept complaints. Your ombudsman can and will research any complaint lodged and direct you to these other agencies at your request. One thing I should mention, complaints that are taken seriously usually involve medical standards of care (best practice standards) or infractions of the Patient's Bill of Rights (see Patients Bill of Rights Act of 1998 for a complete discussion on patient's rights). Individual issues that are serious enough to compromise the quality of care that are not addressed therein should be dealt with on a case by case basis, but be prepared for an up hill battle if your problems are so unique they do not generally affect the typical patient. If your problems are not severe enough to rise to the level that care is actually compromised it may be a matter that should be dealt with on a personal level by family members (i.e., hairstyle / fashion preferences, soft drink selections, alternate meal schedules). Once it is determined that the complaint is not of a frivilous nature and does actually rise to the level where medical care is compromised, I suggest first going to the facility administrator and the Director of Nursing with the complaints. Be clear and specific about precisely what your grievances are and inform them you are willing to bring in the state if the complaints can not be otherwise resolved. Finally, you must be prepared to follow through on these complaints once they are made if changes are to be acheived in any permanent fashion. Good luck.

Where to spend last days posted by LauraL @ 03:48 AM October 09, 2008

LauraL — Thu, 09 Oct 2008 03:48:30 -0000

Hello Anonymous,

I'm sorry you've had a bad experience with that care home. You might wish to share your opinions at our local area caregiving locator, locate the care home you referenced above, and share your experiences on the forms there: http://www.caring.com/local

Best,

LauraL

Where to spend last days posted by Anonymous @ 05:43 PM October 08, 2008

Anonymous — Wed, 08 Oct 2008 17:43:26 -0000

STAY AWAY FROM ADENA CARE HOME IN RIVERBANK,CA. THERE BAD!

Where to spend last days posted by kickmetoo @ 07:17 PM October 07, 2008

kickmetoo — Tue, 07 Oct 2008 19:17:40 -0000

my husband was diagnosed with cancer in may he is only 53, it is spreading rapidly, and we have discussed this same issue, my dad is in a nursing home in Fla i go see him every time that i go to Fla, dad wants to come home but my mom can not take care of him! I would lose both parents, yes they do smell but as learning from my dad and his accidents, THEY THE STAFF CANNNOT HELP THIS! my husband and i have both decided that he is to pass at home, understand i am 47 yrs old, with a bad back! we no this will be a challenge but our daughters will be here too help! HOSPICE IS NOT ONLY FOR THE FINAL DAYS NOW THEY DO SO MUCH MORE! I HOPE AND PRAY THAT WHEN THE TIME COMES I WILL BE ABLE TO HAVE MY ALONE TIME WITH HIM, BECAUSE HE IS STILL WORKING 5 DAYS A WEEK, I MAKE SURE HE HAS HIS MORPINE AND PERCOCETS, TO MAKE IT THRU THE DAY, AND HIS BOSSES RINGTONE ON THE PHONE IS A SIREN SO I NO IF SOMETHING HAPPENS 2 HIM AT WORK THEN, IT WAS MEANT TO BE! ONLY THE GOOD LORD OR HIGHER POWER CAN MKE THAT CALL! ME I HAVE A WILL THAT IF I GET ALZIMEIRS THAN I AM TOO BE PLACE IN A NURSIN HOME, I DEALT WITH MY GRANDMOTHER AND MY HEART GOES OUT TO ANYONE DEALIN WITH THIS ,IT WAS SOO HARD WATCHIN HER AND NOT KNOWING WHAT DAY SHE WOULD NO ME AND WHAT DAY SHE WOULDNT, SO TO EVERYONE WHO HAS SOME ONE SICK TO TAKE CARE OF, IT DOSENT MATTER WHERE OR WHEN JUST LET THEM NO HOW MUCH U LOVE THEM!

SORRY SOO LONG

Where to spend last days posted by jaded_heart @ 06:04 AM October 03, 2008

jaded_heart — Fri, 03 Oct 2008 06:04:57 -0000

My patient that had seen his deceased wife lasted about 40 hours, remaining lucid and fairly responsive all the way through the transition to death. It was more or less what I expected minus the semi-comatose state many people enter in the final stages of transition. He was able to continue to communicate with his son until the hour before death and when his son stepped out to go for a quick sandwich, my patient then peacefully slipped on over to the other side ... sparing his son from having to witness his departure. It ended about as good as it gets for a Hospice case, with the patient being able to orchestrate his own path. That's where the peaceful part ended for me because I was critically short staffed with a new admission to the unit while this unfolded ... so every time the son passed near me and became emotional I had precious little time to offer my shoulder. I did what I could, stopping what I was doing each time he hovered near my work area so that I was at least momentarily accessable to him, but there really wasn't adequate time to ease him through the initial shock. Often family will bond to a primary caregiver during the final days and our very presence after their loved one has passed sometimes disarms them to the point where they become emotional all over again, seeking our reassurance that the death was as easy as we could have made it and generally reliving those last days. It's natural and we do try to be there for all of them, but once again tonight I struggled trying to keep too many plates in the air ... and I'm not so good as a juggler. The family of the new man was already on the unit with that look of white knuckled apprehension, on the verge of full blown panic. Nobody's family is ever happy to arrive on any medical unit as a Hospice case. I know that I was reluctant to embrace Hospice once my father had declined to the verge of death even though I fully understood nobody else was equipped to give him the care he needed. By accepting Hospice I almost felt like I was foresaking my father and I never wanted him to feel I was just giving up on him, so I'm sure that's part of the anxiety for many families. The problem with that little nugget of wisdom is the same as with many other truths Hospice has revealed to me ... I don't have the slightest idea how to fix that and have never met anybody else that does either. Anyway, I'm taking the next week off to visit with my son who is coming home on leave ... in about twelve or fourteen weeks he deploys to Iraq so I need to take what time we get now.

Where to spend last days posted by LauraL @ 03:45 AM October 02, 2008

LauraL — Thu, 02 Oct 2008 03:45:13 -0000

OH, Jaded. Thank goodness for people like you. I think your outlook that only the patient's opinion matters at a time like this is a good one, for it's so very true.

I've been wondering if my grandfather has been seeing my father, or his parents, around him, as his time is short. I'm hoping he does, and that it will all be easy for him.

Where to spend last days posted by Kate Rauch @ 03:58 PM October 01, 2008

Kate Rauch — Wed, 01 Oct 2008 15:58:12 -0000

Hey Jaded,

I hope you got some rest after that heavy night, but as you say, caregivers in your type of job aren't strangers to this kind of thing. Thank goodness for you guys. I'm especially touched by your compassion for the patient, respecting the patient's perspective/place. Their reality. This is so wise. Especially at the end of life. Great that you can help guide family members to a better place. You seem to draw from your experience with your dad. Hope you get time, place, opportunities to restore. Your work is intense. And important.

Where to spend last days posted by jaded_heart @ 05:38 AM October 01, 2008

jaded_heart — Wed, 01 Oct 2008 05:38:56 -0000

Before I found this place I never talked about work to anybody -- after all, most people find my particular line of work a little depressing. Then when my father was in decline and dying I was supposed to be the one that knew how to navigate through the dark night of the soul and didn't dare burden those closest to me. I knew that if I fliched in the face of my father's death everyone around me would unravel as well. There never seemed to be an appropriate emotional outlet for me without risking the well being of those around me -- so please value this community of support you all have built here because it's nothing short of sacred ground for those doing the caregiving. Anyway, I would have given anything to have found this place when my family was going through it, but now is nice too because sometimes work weighs on me a little. Tonight was one of those nights. I worked a second shift tonight that was going sort of rocky ... for me it's always rocky when I don't have enough time to give a situation the attention it truly deserves. Long story short, due to a couple of staff call offs and a new patient admission at 5:00 p.m. we were stretched pretty thin on the unit I worked ... and then one of my in - house Hospice cases ramped things up a little. I'm not sure I should discuss the particulars -- the privacy issue is fine because of the anonymity the internet offers, but this issue is a little touchy for some people mainly because of deeply held personal / religious beliefs. I won't go into detail, but it was a scenerio where my very lucid, actively dying patient told me his dead wife was in the room. It isn't something that happens on a daily basis, but it does happen regularly enough that if you work Hospice regularly I guarantee you will see it. I've seen it many times and I definately have an opinion about it, but this is where the controversy always begins. Some people are convinced it's delirium, others blame the drugs used, and still others believe it's a real phenomenon. I personally don't think it matters what the staff or family believes because that won't change a thing ... and besides, the dying patient is the only one whose opinion matters because they are the one experiencing it. I've seen this phenomenon occur with any number of drug combinations, without any drugs at all, to people who were devoutly religious and to those who believed nothing in particular. I can't explain it away. In fact, the only thing I know for certain is that once a patient begins communing with the dead they aren't long for this world. Hours probably, days maybe, a week or more would be an enormous long shot, and I've never seen one survive longer than that. I just wish I'd had more time to stay at bedside because the situation seriously stressed the family members who were there. I think I talked the son back away from the edge, but as busy as I was tonight I can't be sure I found the right words to make any real difference. I know the patient was fine with it but they generally accept this sort of thing because they saw it with their own eyes.

Where to spend last days posted by Cathie @ 11:34 AM September 30, 2008

Cathie — Tue, 30 Sep 2008 11:34:27 -0000

Dear Jaded_Heart, You sound just exactly the kind of person I want around my mom if/when she has to live in a constant care type facility for those that are just dying because it's their time. You sound as if you understand what a beautiful event to pass on into the next plateau REALLY IS. My mom said that she was there with her Dad when he passed and that he opened his eyes, looked at her, and gripped her hand tighter and then He was gone. Mom said that Grandma was just so peaceful and was ready to go, she'd been waiting long enough for Grandpa to come get her. Mom said that she turned her head towards my mom, I can't remember mom said anything to Grandma, but momsaid she turned her head towards the light of the window and then was gone. Mom said that it was a beautiful thing for her to be there with Grandma. I want to be there with my mom I just can't let her die alone. I am going to close now. I can't hardly even see through the river of tears Good night. JADED_HEART, I LIKE YOU..... YOU DO HAVE WHAT IT TAKES.... KNOW THAT! ! ! ! ! ! ! ! ! ! ! ! ! ! !

Where to spend last days posted by jaded_heart @ 05:47 AM September 29, 2008

jaded_heart — Mon, 29 Sep 2008 05:47:40 -0000

Thanks for the nice words but I'm not sure how consistently I measure up to what I imagine someone with a true calling for Hospice really is. I've drifted away from it many times but always seem to get drawn back again. Don't get me wrong, I've met a few people along the way that fit that exact description and must be meant to serve in the Hospice area, but they are very few and far between. The rest of us just do the best we can in the moment, try to remember it's not our death to orchestrate nor our family to grieve over and allow ourselves to be used as a necessary resource. We try to leave our emotions at the door but invariably a few sneak in. It's a difficult area for everybody ... but one that makes sense to me for the most part. For me end of life has a rhythm very similar to labor and delivery ... a spiritual rythm, an emotional rythm, and an almost palpable physical rythm.

Where to spend last days posted by Kate Rauch @ 02:38 PM September 28, 2008

Kate Rauch — Sun, 28 Sep 2008 14:38:37 -0000

This is an inspiring story, and I totally agree with what you say, about the "how" being ultimately more important than the "where." But she had you, as part of the "where," and maybe when she was shopping around for places to die she sensed good-people in your ICU; as part of the where. The people are the "where" and the "how," now that I think about it. It merges together. Hope I'm not getting too philosophical here. At any rate, I don't think your lost any battles. From the description of her death, this was a win. Sounds like you've found your calling. . Do you feel this? Thanks for sharing this experience.

Where to spend last days posted by jaded_heart @ 06:37 AM September 28, 2008

jaded_heart — Sun, 28 Sep 2008 06:37:51 -0000

Many years ago when I was fresh out of nursing school I was at work one day where I met a woman who was shopping for a place to die. She had rejected the in home options as a matter of personal preference although in home Hospice services were widely available in our area even then. She toured many local Hospice units ... a couple were free standing units while several were departments of local hospitals or nursing homes. Technically we were a long term ICU and generally didn't accept Hospice cases, but she had the funds to go where she wanted and she ended up wanting to check in on our unit. I was her primary nurse for the two or three months she lived and I never met anybody more alive. She made quite an impression on our staff mainly because she was conscious and able to move around on a unit heavy with brain injuries and ventilator cases. She did many amazing things .... had her hair done every week up until the week before she died and shopped for a new spring wardrobe five or six weeks before she died. Every day or two she had lunch plans or a manicure appointment or went to her garden club events. She was amazing and she lived every single day she got ... I never saw her waste even one. Eventually I became her willing accomplis, loading her with Morphine before she set off for the day and signing out her PRN Percocets for her to take along with her ... until the time came that she needed more and more morphine, then I'd time my lunches so that I could "drop in" at the hairdresser or nail salon and "happen" to have an injection ready for her in my pocket. It was a battle I understood from the beginning we were bound to lose, but there was so much dignity and grace wrapped up in her little mundane activities that I couldn't stop myself from wanting to believe we could stave off the inevitable one more week and after that just one more! Then came the day it caught up with us and she really was too frail to keep one of her appointments. Within a week her family was gathered by her bedside as she slowly slipped away. My point is that the where isn't sonearly important as we think when compared to the how ... not when it comes to death. How one faces that final tragedy is the real question and I've never been able to determine who posses that regal strength of character I witnessed all those years ago ... at least not until I see it, then I'm always in awe.

Where to spend last days posted by Cathie @ 04:55 AM June 04, 2008

Cathie — Wed, 04 Jun 2008 04:55:08 -0000

THANK YOU REBECCA..........

Where to spend last days posted by Rebecca @ 07:24 PM June 03, 2008

Rebecca — Tue, 03 Jun 2008 19:24:35 -0000

Wowsers. You know it is sooo hard to care for our parents, our grandparents. Dealing with our siblings.... well actually pretty much any relationship .

And I think some times we just need to vent, to feel heard, to feel appreciated, and one of the tough things about the caring process is that sometimes those we are caring for can't express that appreciation back to us. That is one of the reasons that I like this group here. I can express my feelings, I can offer my opinion, and it feels safe and trustworthy. I am here because there is a caring community here and I value all your opinions and all your experiences.

Where to spend last days posted by Cathie @ 04:01 PM June 03, 2008

Cathie — Tue, 03 Jun 2008 16:01:39 -0000

Dear Anonymous, (both responses) Where was I? Was I available? YES>>>> I sure wouldn't want you related to me in that situation. Whether they know who you are on this planeor not, they will know if the afterlife. AND I HAVE WORKED AS A VOLUNTEER IN THOSE PLACES. MAYBE YOU SHOULDN'T CONDEEM ME UNTIL YOU HAVE WALKED IN MY SHOES. i hope your family isn't as cold to you as you appear to be to others.

Where to spend last days posted by Anonymous @ 03:46 PM June 03, 2008

Anonymous — Tue, 03 Jun 2008 15:46:23 -0000

Responding to the statement: "Those places are gross, they smell like pee, poop and death, and I would think unpleasant." When a disabled person of any age cannot control bodily functions, in any setting whether a personal home or public facility, controlling odors is extremely difficult. If you haven't tried it, maybe you should volunteer in one of those "gross" facilities and see how well you would manage. We certainly don't want our loved ones to suffer, so it behooves us to do as much as we can to help their situation. Our assistance doesn't have to be limited to a parent or grandparent. Trained volunteers can do a lot to alleviate lonliness of those in nursing facilities. In many cases, those suffering with dimentia are not aware of whether the volunteer is a stranger or a loved one who has come to visit.

Where to spend last days posted by Anonymous @ 03:36 PM June 03, 2008

Anonymous — Tue, 03 Jun 2008 15:36:58 -0000

Cathie, I feel compelled to comment on your remarks about your Mom 's "shipping" your Grandmother off to a convalescent hospital and "went on with life". I wonder where you were when that decision had to be made? Were you available at all hours of the day and night to assist in your Grandmother's care. Even when expert medical care is not required, the requirement to physically lift an elderly person from a bed to the toilet or wheelchair is often more phycially demanding that a daughter or son can manage. I am 60 years old. My Mother with Alzheimer's disease is 86. She can no longer control her bodily functions, has forgotten how to stand by herself, and has other deficiencies too numerous to list. After a recent hospitalization and after 16 days caring for her in her home, leaving my husband alone 100 miles away, I had to give up and place her in a Nursing facility. I would bristle if my son or daughter made the remarks that you have made about your Mom's decision. When you haven't walked in her shoes, you should not JUDGE your Mom's decision. I could say more but maybe you get the point!

Where to spend last days posted by Cathie @ 10:53 AM May 29, 2008

Cathie — Thu, 29 May 2008 10:53:29 -0000

Hello all, I just joined and was reading everyone's comments. I definetly don't want to die in a hospital. I don't want to die alone. I don't have any children plus I don't know if I would want my kids to see their mom die. (if I had them). It really depends on how I die. I would like to have my dog at my side and or cat, I do know that when I die I want any "fur-children" that I have to be put to sleep and put with me. In fact, the dog I have now, Heather, when she dies I am going to have her cremated(spelling?) and I am going to keep her with me and I want her put with me when I die. I know that it will just be her physical remains and that her spirit will already be waiting for me someplace else, but I don't want to make the journey by myself and if she is with me then her spirit will find my spirit quicker and then we can go together. My Grandmother died in a convalesent hospital and my mom took her pictures from home for her to look at. But, I think that was more for my mom. Grandma didn't have any serious illness or disease she was just old. I don't believ she should have been put there at all and that she should have been able to die at home.

she didn't like to be fussed over but my mom and her twin brother were in charge and taking care of her and when she got where she required alot of personal care, some loss of control regarding certain body functions and needed more watching because of she'd fall they decided it was more than they wanted/could/should or had time for and shipped her off to a convalesent hospital and went on with life. Those places are gross, they smell like pee, poop and death and I would think unpleasant. Now, if she had a serious illness where she needed medical personnel to administer meds to make her comfortable then I think a hospice would be the place to be. One like Jen described sounds nice. There are so many pressures and stress involved when you are losing someone you love that having understanding caring and experienced people around is almost a necessity. The first few minutes/hours after a death are very critical and can make or break a survivor whether it's a friend or family that is left behind. When it's my moms time, I sure don't want paramedics rushing in and taking her away from me at least not until I had some quiet time with her, alone. But, I would want someone knowledgeable in that kind of situation to be there. I know I am gonna lose it when moms time comes and to have a bunch of strangers around her would make me VERY TENSE>> For me personally, I just want to nod off and then be gone. Advance directives are nice, mom has one so I know her wishes on that matter and I can/will abide by her wishes. I want her to die here at home, I want to be with her, I don't want people scaring her, I don't want it loud and unpleasant for her. I want her to be able to feel God's presence and hear His comforting words. I don't want her to go at all. Good night.

Where to spend last days posted by LauraL @ 04:06 AM May 12, 2008

LauraL — Mon, 12 May 2008 04:06:59 -0000

Hi Cita,

I'm so sorry about your father. What an awful situation, and I'm sorry things happened the way that they did. Your comment at the end about the tattoo leads me to remember - it may well be important that we get advice from our loved ones one what they want to have happen in certain situations so we're not guessing -- some sort of advance directive on care.

Thinking of you,

Laura

Where to spend last days posted by Cita @ 01:01 AM May 12, 2008

Cita — Mon, 12 May 2008 01:01:27 -0000

My daddy was 90 years old, diagnosed with Alzheimer's in his early eighties. He had done well for most of that time but started to go downhill rapidly. We moved him to an Alzheimer's unit about six weeks ago. The sixth week he fell and they had him taken to the ER, where he spent 23 miserable hours, lots of tests but little attention except for me. They sent him back to the Alzeimer's unit. Eleven hours later he fell again, in the early morning hours. When they found him, they again sent him to the ER. More tests but little attention from the staff even though I kept telling them he was behaving strangely. He was so agitated, so obviously miserable and confused. But they said he was fine and decided to discharge him. As they removed the IV, his heart stopped. Suddenly they were reaching for equipment, alarms going off, people running in with crash carts. Now he had their attention!

It's not that I regret that he died. I know that had he lived he would have gone through so much suffering that he didn't deserve. But I can't help but feel that ER was an awful place for him to have to die. Yes, I was with him. But still I wish he had died in his bed, or even on the floor where he fell, near his bed and his chair and his things, and people who knew him and cared about him. The ER is cold and uncomfortable and unpleasant and frustrating and minutes are very long and hours take forever and a daughter's caring isn't enough to....

My gut reaction is to want to tattoo on my forehead, "When I am old and confused, DO NOT take me to the Emergency Room."

Where to spend last days posted by LauraL @ 04:39 PM March 14, 2008

LauraL — Fri, 14 Mar 2008 16:39:32 -0000

There is a certain romance or appeal about that, isn't there? At the same time, i picture being in a lovely room with light and color, lilacs in a vase, my favorite music, and I just slip away.

Where to spend last days posted by Bodhi @ 07:39 AM March 12, 2008

Bodhi — Wed, 12 Mar 2008 07:39:21 -0000

I remember reading or perhaps seeing some old movie, where there's this old indian, and he's decided its time for him to die, so he just gives away his stuff and walks away into the mountains somewhere to wait for death.

There's something about this idea that is quite appealing. I believe that if I knew I had alzheimers or something like that in my future, I'd want to be able to gently walk off in the woods some cold winter's night and just go to sleep before it became a nightmare for someone else.

Where to spend last days posted by Kate Rauch @ 03:44 PM March 10, 2008

Kate Rauch — Mon, 10 Mar 2008 15:44:55 -0000

This is a fascinating discussion. Imagine choosing a place to die. I always picture my dad just dying wherever he happens to be at the time: grocery shopping, reading the paper at his dining room table, behind the wheel of his car --- oh dear on this one! He's 85 but still hanging in there. But has heart failure, so is at risk for a heart attack.

These would be the best way to go, except for while driving where he could take others with him.

With a terminal illness one does have more choice, which is really tough, though at the same time one of those beautiful things. Sort of. I mean, I can see the beauty in this --- the place of death.

Most people probably choose at home. I wonder about fixing the house or room up in any special way, like with flowers or art work, keeping it clean. Or just leaving things how they've always been. This is probably the most comfortable.

Any of you have personal experiences with this? Do you prepare the final nest in any specal way, or leave it be, in its natural state?

Where to spend last days posted by LauraL @ 12:06 AM February 28, 2008

LauraL — Thu, 28 Feb 2008 00:06:48 -0000

It does seem like we are moving towards hospice care like some new moms are going for doulas and midwives at home or birthing centers - less invasive and scary than a hospital.

My grandmother died under hospice care at home, while my father was in the hospital. I can also recall a cousin of my grandmother's dying at home, where he wanted to be. His grandchildren would pop in and say Hi to grandpa, then go about their playing business, and he loved it.

I guess if I had to choose for myself, I'd want to be at home; at the same time, I'd worry that I could turn the room I died into someplace scary for my children/grandchildren. Hm.

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