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!

How are you FEELING? posted by A Mox @ 03:24 AM October 08, 2008

A Mox — Wed, 08 Oct 2008 03:24:53 -0000

tjl - Please understand that you are not alone. My heart goes out to you and I promise I will pray for you and your family. Treasure each moment you have left and make them memories that will comfort you when she is no longer with your family. When the time comes it will be hard on each of you and each will handle the loss in their own way. Please continue to cling to your family for support. Death leaves a heartache no one can heal. Love leaves a memory that no one can steal.

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

How are you FEELING? posted by tjl @ 02:16 PM October 07, 2008

tjl — Tue, 07 Oct 2008 14:16:56 -0000

My mom is probably going to die within a week or two. She has been in a nusing home since 2004 against my wishes (she was living with me) but my 4 siblings made the call (one was poa) We fortunately got past the hurt feelings and are together with our decision to make these remaining days as comfortable as possible. Her youngest granchild (my daughter) turned 21 and wanted to have her first legal drink with her grandma. We didn't make it on that day but Sunday night we went to the nursing home with champagne glasses and fuzzy navels. My daughter will forever carry that picture of her grandma smiling and licking her lips after we toasted. Mom probably didn't imbibe more than an ounce but it was an extremely powerful moment for my daughter and me. Just to see Mom smile again is wonderful. I swear that Mom is in her own way saying goodbye to each of us. For the most part she has not spoken for a year but occassionally a word will slip out at the most appropriate time. As I cuddled with her last night and talked to her I told her that if she is waiting for my son to come she didn't have to-he is 8 hours away in a very demanding job. Each trip he has made home, he has said his peace with her. Since 2002 the five of us (her children) have alternated weekdays and weekends so that she always would eat a meal with one of us every day and very few days have been missed. We are fortunate to all live in the same city and can say goodbye to our 93 yr old mother without any feelings of guilt. It hasn't always been easy but the benefits have far outweighed the disruptions. My children, friends, colleagues and especially my teenage students have been travelling this long highway with me. My best advice to anyone about to head down this path is to not go alone and to look for the humor. Mom provided me with many tales to take to school from flushing her teeth down the toilet to hiding things in her diaper (like honey buns) to swearing like a sailor (I had NEVER heard her curse before) to saying "I love you" when I needed it the most. Please keep us in your prayers.

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.

How are you FEELING? posted by LauraL @ 03:48 AM October 02, 2008

LauraL — Thu, 02 Oct 2008 03:48:31 -0000

Thank you, A Mox. Your perspective helps a lot. I appreciate it. :)

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.

How are you FEELING? posted by A Mox @ 03:17 AM October 01, 2008

A Mox — Wed, 01 Oct 2008 03:17:02 -0000

Laura, I don't think you can really prepare yourself for the death of a loved one. Today is 2 weeks since my father passed away and everything seems so strange. I am worried about my mom. She is as white as a piece of paper and just sits and stares off into empty space. She and my dad were married for 62 years and what a marriage it was. My dad loved my mom so much. I took her to the doctor and he said to let her grieve as long as she needs to. Like your aunt I have taken care of my mom & dad for the last three years - moving in the house with them the last three weeks like I said before. I was the one who did everything for them. She will probably take it hard like I did. I know everyone grieves in their own way. I find comfort in knowing that he is not suffering anymore and he has went home to heaven. I was right there beside him when he passed away and I could almost see the angels coming to get him. Frustrated? No, not really, I am just stressed out. There is so much to do and I still can't see an end in sight. During the 3 years I was with both of them there did come a time when I went to the doctor for my nerves. I had a hard time trying to convience him I did not need anti-depression pills. I was not depressed - just stressed! I did not for one minute mind what I was doing. There was just so much to do and no one to help me. Your aunt will probably feel like me, she will be proud that she was there for him when he needed her most. Please hang in there and I will say a prayer for you and your family.

How are you FEELING? posted by LauraL @ 08:54 PM September 30, 2008

LauraL — Tue, 30 Sep 2008 20:54:51 -0000

A Mox, we are absolutely here for you. Frustrated? Let us know. Scream it all out here, and then maybe we can help point you to the right places on the site that can help you with decision making.

Best to you!

How are you FEELING? posted by LauraL @ 08:53 PM September 30, 2008

LauraL — Tue, 30 Sep 2008 20:53:43 -0000

Hunebe, am thinking of you! Things will sort themselves out as they do. Be positive, think positively, and know you have us here.

How are you FEELING? posted by LauraL @ 08:26 PM September 30, 2008

LauraL — Tue, 30 Sep 2008 20:26:39 -0000

My grandfather is dying. It could be any day, maybe a couple of weeks. While I feel pretty prepared for it, my grandmother is not. They've been married 61 years. Have had four children. Have already buried one, my father.

It's my aunt I'm worried for. When I call down there, she cries. I'm happy to be a release valve for her, but I really worry this will sink her, emotionally. The only daughter, watching daddy die. She had a hard time with my father, her big brother, passing, but this is DADDY, you know? And she's there helping, making decisions, advising, cooking, caring...I worry for her, so much.

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.

How are you FEELING? posted by Rebecca @ 01:29 PM September 28, 2008

Rebecca — Sun, 28 Sep 2008 13:29:44 -0000

Hi A Mox, BIG HUGS to you. And prayers too!.

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.

How do we know when the end is near posted by jaded_heart @ 06:10 AM September 28, 2008

jaded_heart — Sun, 28 Sep 2008 06:10:37 -0000

Generally we know the end is near because of the general physical decline that leads to death. Often there is a period of hours, most often days, where people drift out of consciousness. Once the lungs begin to fill up they are usually gone in 48 hours or less. That's all a huge generalization and there certainly are exceptions of every description to that generalization. I personally have attended cases as a nurse where the physical decline was much less pronounced and the patient remained alert and more or less responsive until the hour of death, but that isn't typical. I've had a handful of alert patients over the years who have told me they were dying even when I couldn't find a measurable decline in their condition ... and then they've died rather suddenly ... leading me to think these were people who were very in tune with their own bodies. I now listen very carefully when a patient makes such an announcement, but those are extremely rare cases. Mostly people go out slowly over a period of time. My father became weaker and weaker over a period of several months (at the end of a six year illness) and was unresponsive for about eight days at the end. His lungs began to fill up about five or six days into it and he was gone in about 40 hours. Hospice provided a good supply of drugs in various forms and I'm satisfied that he was as comfortable as we know how to make somebody in that condition all the way up to the end.

Hospice not just for last few days posted by jaded_heart @ 05:41 AM September 28, 2008

jaded_heart — Sun, 28 Sep 2008 05:41:46 -0000

Hospice guidelines vary from state to state, sometimes from agency to agency ... unfortunately I've been on both sides (20 + year nurse with aging parents). Generally a hospice "certification" is thought to be six months or less, but many people outlive their cert. Typically a new evaluation is done and the cert. is renewed. Hospice just means end of life care focused on quality of life issues in cases where no effective treatments are available or all other avenues of treatment have been exhausted. Some facilities offer in patient options, but the trend in healthcare for the last decade has been in home assistance (including people with nursing home / assisted living arrangements). It's true that once Hospice has taken the case all medications and supplies are generally provided ... mostly due to Medicare part B funding and to a lesser degree depending on your state to more inclusive "bundled services" permitted within state medicare programs. Just as important, there are skilled nurses and medical assistants on call around the clock, so those scarey 2:00 a.m. episodes almost everybody goes through with a dying loved one don't have to be weathered alone. Further, Hospice nurses generally have a direct 24 hour line to a medical director (a doctor) and access to a 24 hour pharmacy for just such emergencies. On top of that, the family has the benefit of having somebody that's done this dozens, if not hundreds, of times before so that when it comes down to the end there is the peace of mind of knowing that everything that should have been done was done properly and in a timely fashion. It doesn't sound like much, probably because Hospice can't give us what we really want which is to make it all better ... but once you've been down that road all the way to the end you'll find it's a huge comfort. I discovered, much to my amazement, that once my father was actively dying my mind shut down and I couldn't function effectively even though I'd done this with other families so many times I can't put a number to it. In the end I was my father's daughter and didn't want to be his nurse ... I'm very grateful to the nurse that was able to step in when I needed her most.

How are you FEELING? posted by A Mox @ 03:20 AM September 28, 2008

A Mox — Sun, 28 Sep 2008 03:20:20 -0000

My dad who was 82 just passed away less than 2 weeks ago. We learned that he had heart problems just 3 short months ago and the heart Dr. could not fix the problem because of his age. The last 3 weeks were the worst I had seen him. When the Dr. told me he was calling in Hospice, I could not believe it. I moved him and my mom to be near me 2 yrs ago so I could take care of them. Now I am wondering how the time went by so fast? I have been trying to work two jobs and take care of them. A month ago I closed up my house and moved in with them. I am the only daughter and my 3 brothers live to far away to help. My dad never let my mom handle any financial decisions so now I am overwhelmed with all the insurance, bills, funeral expenses, and everything else that is thrown at me. She can't help me because she is lost and does not know how. She is 80 and she has COPD and is not physically able to get around. I will have stay with her to care for her. My life has been on hold, but I am proud that I am able to love and care for them. I do need prayers and support, so please someone talk to me.

How are you FEELING? posted by Rebecca @ 02:44 AM September 28, 2008

Rebecca — Sun, 28 Sep 2008 02:44:34 -0000

Hey hunebe, You know what? I don't think there is a way to know how to deal with the end when it comes. What ever is going to come is going to come and you can't really change it. All you can do is sit with it all as best as you can, and allow yourself to feel the pain, the stress, the discomfort, and just sit with it even though there is the incredible urge to want to do something, and the anger because you are completely helpless. Are you close to your dad? I know I had to say stuff to my mom before she went, and one of those things was "Im going to miss you so much".

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