Time for hospice and Im really scared
Comments
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Terri, I don't think you are morbid in wondering what "the end" will be like. It is something that none of us can know. But I can share what I observed as my father died in hospice care. He had end stage lung disease and a whole bunch of other problems the last few weeks of his life, and I am sorry we did not get him into hospice before we did. He was taken from his hospital room with all its schedules and vital signs and interruptions and put in a private room that was quiet and had chairs for family. He was awake and aware for the first day, WITHOUT pain or problems breathing because he was getting enough meds and oxygen to keep him comfortable. After that, he slept mostly, and seemed to be comfortable because his breathing and heart rate were normal. My mother was by his side, holding his hand. At some point, we had all told him we loved him and it was OK for him to go as to ask him to stay longer was only being selfish on our part. He passed peacefully about 2 am with my mom holding his hand, his only son in the room with him, the rest of us within 5 minutes so that we could support each other. It was a remarkable time, and I can nearly equate it with the birth of a child. And in fact, that passing of the spirit from the earthly body is much like the birth into something else, and we just don't know what that is. I don't think there is any reason to fear it, I think it is just different. I don't know if there is "an afterlife" or if we just fall asleep, but either way seems to be OK.
That doesn't mean we don't grieve the anticipated loss of being with our loved ones, of being with our pets, of playing music or making art. We DO grieve those losses, and so in some way, dying relieves the suffering from this grieving. And yet while we are here, we share as much love and kindness as we can, find beauty in little things, find gratitude for those who love us and other little occurrences throughout the day. Like being able to thaw out your well without spending a fortune on a plumber!!!!!
I hope your visit with your nurse goes well. Know that we are here for you, and you can ask or ponder anything you like!
Hugs.
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Hi Linda & Terri
Linda I think we all needed to here your wonderful words, as usual you are kind and reassuring . Terri you are not alone in your thoughts of how things will be. Hopefully Linda as helped.
Hugs Mara. X0 -
Linda, you wrote an example of exactly what I meant. That was wonderful. Thank you.
I don't think I'm scared of the end being an afterlife or not. I just wonder how I'll go. My nurse just clams up. I don't want to suffocate. I want to be medicated enough so that I go peacefully. That's what I wonder the most I guess. I've heard stories of both in people with lung mets but usually not on hospice. Maybe my nurse is just being careful to follow the law so it doesn't look like asssisted suicide. I hope that's all it is and that she won't let me suffer.
Teri0 -
Teri, I believe Oregon has a "death with dignity" act if you are interested. I think Washington and Vermont also have passed laws that allow a terminal patient, especially in hospice, to request medication that will hasten death at a time of the person's choosing. I am not necessarily in favor of or opposed to these laws, and don't know if I would choose to request the medication myself, but have certainly considered it, in which case I will have to move to one of those states that have these laws.
No one should have to suffer during the dying process - medications can relieve that, and some of them CAN hasten things a bit, but the main thing is to keep a person comfortable and not struggling to breathe or in pain. It doesn't sound like your nurse will let you suffer, but you may have to ask for more meds.
There was a wonderful woman on another thread that had also investigated palliative sedation; I don't know if she used it, but it is legal in most states I think .... don't quote me on it. Basically, you can request to be sedated, WITHOUT IVs or feeding tubes or etc., and at some point the body dies, but it takes anywhere from a few days to a week or so. Hard on the family, but easy on the patient. If this is too much information, I will stop - I don't want to overwhelm you or cause you more distress, so if I step over the line, please say so.
And meanwhile, we continue to keep a lookout for that wandering goat of yours! Any further sightings?
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Teri, I think that we all do wonder what the end will be like. I hope for all of us that it is as peaceful as described by Linda
We are getting another cold blast from old man winter today. It is a good thing that DH and DS got the outside lights up and brought home the Christmas tree yesterday. It is certainly not the fullest nor the most envied of trees, but DS was so very proud that he picked it out and cut it all by himself. So that makes it the most beautiful to me. I got the lights on it today and will get a few decorations out tomorrow. A little bit at a time.
Wishing you a peaceful evening Teri.0 -
Hi Teri! We all have those thoughts of what our passing will be like...........not the death itself but the process of. I have been present at several deaths and I must say that they all have been different but peaceful.
I was present when my mother passed at the beginning of this year. She had very bad lung disease and was on oxygen 24/7 to help her breathing. During her dying process the doc prescribed pain meds as well as midazelam (versed) as required and my siblings left it to me to decide when they were needed........I watched her carefully to make sure she was in no pain or discomfort and her passing was very peaceful. She asked at one point where my father was and we told her 'waiting for her'........she settled and passed peacefully.....there was no struggling for breath, they just got shallower as the process progressed until the time between breaths became longer and then just stopped.
I'm sure your hospice nurse will make sure that you are comfortable when the time comes.
As always, we are here for you and will discuss anything you need to help make sure you are at peace with this whole process.
No sighting of the errant goat lately over here.......lol......I would have thought the warmer weather we are having would be a great attraction?!
Stay comfy........
Love n hugs. Chrissy0 -
Hello Teri! Just stopping by to see how you are doing. Staying warm and toasty I hope! It makes me smile that there is a comfort here talking about things that most people find taboo. I hope you receive answers to your questions, Teri.....giving you the peace you desire. Just wish I had some of the answers!0 -
Hi Teri,
I haven't been here for a few days - checking in to say hi and hope your days are peaceful and comfortable. I'm glad we can lift your spirits here. I think this latest conversation has been good for us all - I hope it was comforting for you. Speaking of comforting, it kind of feels like we're all sitting with each other, sharing stories. I hope you can feel us there with you.
It's really snowing and blowing here! I teach preschool and just might have a snow day tomorrow! Are you getting much snow there?
Sending warmth and light and love to all, Amy0 -
I do feel like we are all sitting in a room together. Watching out the window for a certain wandering goat...0 -
Not morbid at all! In fact, I think it would be odd if you weren't having those thoughts! Praying for peace and comfort for you!0 -
Not morbid. My Mom passed from breast cancer (to brain & lungs) in NY and Dad from lung cancer (to pancreas) in CT. Both passed peacefully surrounded by family with empathetic nurses being very caring and generously setting the morphine IV's as high as needed for total comfort.0 -
Well, you've all helped me feel way better about the dying process. I can't imagine my hospice nurse letting me suffer either but she just won't say so out loud. But I do believe that's just the legal sysem raising it's ugly head into the middle of our healthcare.
Linda-N3, yes, Oregon does have Death With Dignity but I don't think I could do it. But it's good to know it's there if I need it.
Chrissy and Chanah, thanks for the examples. They made all the difference.
I'm sitting here looking out the window. No snow at all (darn it)! I'm at a high elevation (1,200') but have no accumulation. The sun's out. Go figure!
I have not seen Deuce nor has my friend, Richard. I hope he was able to find warmth during this last cold snap because it has been below freezing for a week, like down at 11 or 16 degrees farenheit, and I know some animals can't handle those temps without a barn.
I will try to get Richard to go out and look for him in the junk cars today. Maybe he found some good leather seats to curl up in.
I hope you all are having manageable pain and symptoms today. (((HUGS))) to everyone.
Teri0 -
Hugs to you Teri. Thinking of you.
Pam0 -
Thinking of you while sitting in the infusion room getting my weekly chemo. Stay warm and comfy!
So great to hear from you.0 -
I have a question for you Teri. If you were to get anemic would hospice give you a transfusion to correct it, if it made you more comfortable? Obviously it wouldn't correct the underlying cancer issue, but in the short term.
I am glad you are comfortable and more peaceful. sorry about Deuce but he's an independent critter and as you pointed out.. probably found a nice truck seat to curl up in. stay warm. The snow was pretty while it lasted. This cold is a bit much though. Take care. Hugs.
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People who have had near death experiences report that it is very peaceful and they almost always don't want to return. It doesn't seem to matter about the palliative drugs either. People see people who have passed (my Aunt woke up and said "the girls say it won't be long so why am I still here), the girls being her sisters who have passed. I have no explanations for it but I do know that it occurs and it is warm, embracing, and loving. I read a book by Pin Van Lommel about scientific research into NDEs and you may find it very comforting as I do (my Dad is in hospice as we speak). Sending you warm cyber hugs and if you please, the title "Consciousness After Life".0 -
Hey Teri. It is freezing here in Illinois...and icy. My brother-in-law had cancer throughout his body when he passed. He was in tremendous pain before he stopped treatment. When he stopped and was just being treated for pain, he was much better. Most of the time he was pretty out of it but in no pain. When he passed it was very peaceful. He simply went to sleep and his breathing became very shallow. His heart would stop for brief moments and then restart..but the length of stopping increased and became more frequent. He then just passed. I've also talked to a couple of other people who loss loved ones to brain cancer. They also said that their loved ones slipped into pain med induced comas and just passed in their sleeps...again with no pain. I believe with the better use of pain meds most people do pass away peacefully and without pain. I don't blame you for worrying and it isn't morbid. I also have been concerned about that too. Who wouldn't be?
As for Deuce, maybe he's been taken in by someone else. They can wander pretty far at times and he may have found a new home himself. Hugs to you!0 -
Hi Teri! I'm glad that we were able to help put your mind at ease at least a little.
It's been a busy day today.........had to drive over to the next town to do my fortnighly shop, have my treat (nails done) and go for my eye test. I like to do as much as possible so I don't have to drive over another day.......lol. Well the nails are done and looking gorgeous again, the larder and fridge are stocked and I don't have to change my glasses but I do have the beginnings of cataracts in my right eye which would explain why I feel it wont focus.......sigh, just another thing to add to the list.
I was watching very closely for My Deuce but no luck.........maybe he has found a swanky new vehicle with leather seats.
Hope your day was a peaceful one and one that help little pain for you.
Love n hugs. Chrissy0 -
Hi Teri, We all love you too. Sorry to hear you have been unwell. I hate being short of breath too. I am glad the nurse has helped you through the infection and made you more comfortable. I am sure all of us wonder what it I'll be like "at the end". I think about that a lot too. It is also very cold here in Southern California. I have to admit I got a chuckle out of you unfreezing your well with the hair dryer.
I wonder of that devil-May-Care-Deuce was lurking about watching you unfreeze the well??
Hope you continue to feel better, Teri. and that the nurse can help you keep nice and warm and comfortable. I am sending you many gentle hugs. All of us are thinking of you. Good night.0 -
Bon, I laughed at the thought of Deuce as a reindeer. I think you might be on to something here!
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RoseValley, hospice said that if I got an infection, they would give me antibiotics for it. But I, myself, am still confused about your question. I've had the same one only a different example, and I'm still confused. They said that I am dying anyway of the cancer so they won't do anything to prolong (or shorten) life but they will treat all my pain and discomfort so does that mean they will give me uppers so I'm not too fatigued and not do a transfusion? I'm not sure.
BluePearl, Thank you. I will check on that book. I may already have it.
Chrissy, I just love to hear about your outings. How far is the nearest town anyway?
Bon, you are hilarious! Deuce coud be a reindeer because he can fly. He used to jump 6 foot fences when other goats were being held in 4 foot fences. Which is why he's out and about now. My friend Richard raises goats and I told him that when he took my goats he was going to have to make his fences taller. He didn't believe me. But he does now.
Hope everyone is having a good day today. Here, the sun is out and it's finally above freezing.
Teri0 -
Teri when dad was in hospice they would treat an infection or anything that caused discomfort. However, they said if he would have a heart attack etc they would not treat as he had DNR. We were not to call 911 or an ambulance. We were only to call hospice.. They kept him comfortable. However, some of the drugs I don't think were necessary. They were giving him stuff that made him hallucinate (which were some kind of pill to calm aggitation). Dad wasn't aggitated. One night he kept waking up and taking his clothes off. This was so not my father. He was very modest and would never do that in front of his daughters. However, they would come whenever we would call if we stressed it was an emergency. I think they wanted the family to do too much medical things and make too many medical decisions by ourselves. They were always very nice. I think it was just me as my sister and her family said they were wonderful. So, I do think they did enhance dads passing but would never come out and admit it.
Donna0 -
Thanks Teri I was just wondering since you still had a palliative MD on board if that made a difference. I know from experience that anemia can be corrected quickly with a unit or 2, but of course would only last as long as the life span of a red blood cell.. so not long term if your marrow is depleted.
I had to laugh about your comment on the flying Deuce, able to jump a 6 foot fence! Years ago we adopted a gorgeous black and white border collie from the pound. We couldn't figure out why Nellie was at the pound, this beautiful dog! We had her for 7 months before taking her back to the humane society and paying them to call rescue. Nellie could sail straight over a 6ft fence from a sitting position. No lie. she was an Olympiad jumper! She was container proof... no structure could keep her in. I had the elementary school call me and tell me Nellie is in the Boys locker room come get her... she's in a soccer game at the school... running down a busy street etc.. She LOVED kids and we live near an elementary school so off she went " walk-a-bout or rather run about! " We couldn't keep her contained and finally had to give up. (we have had 3 border collies.) My husband said she was the smartest dog we ever had.. and on a mission. Kind of like Deuce!
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RoseValley, I think I figured out Hospice. Whenever I ask them about this type of thing they fall back on their mantra that they will neither prolong nor shorten my life. That tells me that no matter what may be killing me besides cancer, they won't fix it.
Now, you also have to remember that you still have your old insurance while you're in hospice. So if you're on Medicare, you'll still have Medicare to treat the anemia. As long as you don't have them treat anything to do with your hospice condition. Then you've "decided" to opt out of hospice and go back on insurance. You can get back on hospice but you have to go through all the paperwork again.
I hope I didn't confuse you more. Or myself! Lol!
Teri0 -
Teri, sending loving thoughts to you. Bev
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Wow Teri, as if cancer itself isn't confusing and stressful enough, hospice and insurance issues sound crazy too. It seems that nobody is ever one the same page as someone else.0 -
Rosevalley, we had a Husky that could leap a 6 foot fence as well. We put electric wire around the bottom inside the fence so she would not dig out of it (she did dig out before we installed that) and just for good measure, we also ran an electric wire around the top of the fence. I got a call from our vet's office that our dog was seen in a neighborhood about 2 miles from our house, and I said, no, that could not be, she was in the back yard and has been there since I got home from work. Well, she had been seen after lunch, the dog's tag number and vet number matched, and so did the description of the dog, but she had come back home and jumped back into the yard before we got home from work! - so we ended up having to keep her in the garage during the day, initially tried in a crate but she could get out of any crate we tried. No matter, she decided to dig through the wall, and all that pink fiber glass insulation to get out of the garage into the kitchen, and she nearly did it! One day she jumped into DHs car - he had left the sun roof open, and she was sleeping in his back seat when he went out. Another day he had all the doors and sun roof closed, came out and found scratches below the door handle of the driver's side and the door had been popped open! - not enough for her to actually get in, but enough that we knew she was getting ready to hotwire that car and go for a spin! She absolutely LOVED going ski-jouring or pulling DH on rollerblades - when he got out the harness to go for a run, either on skis or rollerblades, that dog would jump straight up into the air about 3 feet, STRAIGHT UP, she was so excited. You could tell how much she loved being with DH, we still miss her after 9 years - she was the best! Well, except for being the worst guard dog you could ever want!
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Linda n-3 That's the funniest dog story! I didn't think there were too many dogs like Nellie but you had one for 9 years! WOW I am impressed. I have NEVER given a dog back I can always seem to train them or do something.. not Nellie.
You know one time we boarded Nellie and our Golden Retriever (my daughter's service dog) together at a nice place with big runs. I told the folks this dog is an escape artist.. amazing jumper and smarter then people. Nearly container proof. I noticed there is a 2 foot opening at the top of the kennels. The staff woman laughed and said those kennel walls are 8 ft high! Don't worry about Nellie. When we returned the girl looked at me and said you know, after you left we went back to check on your border collie. We found her balanced on top of your Golden retrievers back looking at the gap between the gate and wall! In all my years I have never seen that. Sorry but she spent the week in a smaller kennel run with a closed top on it! Ha they need to listen to owners.. some times they do not exaggerate!
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I had a chubby black lab mix (Moe) that kept getting out of the yard and I couldn't figure out how since there weren't any gaps under the chain link fence. He couldn't jump over the fence because he was quite frankly too fat. So one day I hid and watched. He used his paws to stick in the holes of the chain link, climbed up the fence and then balanced on the top on his belly and then just flipped over. Unbelievable how animals can figure out how to do things they really want to do.
I need to add that I also had another lab mix dog (Misty) who was much thinner and taller at the same time as my cute little fence climber. However, she never could get out of the yard even though she probably could have jumped the fence.0 -
the minute I am distracted from the boards I miss so much..
Teri, each time I see anytjing about goats, I automatically think of you & Deuce. Such an adventure on the boards
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Enjoying the view of snow outside from my comfy recliner.. Ds asked to play snowball, but I had to reject him as I have just almost recovered from a severe Flu. No more antibiotics for sometime, thank you!
Hope everyone's doing fine.. This thread has become the ultimate primary thread, I feel like chatting with you all in my livingroom reading the posts.. Thanx Teri for the invitation to such occasion.
Hugs & love
Ebru0
