Where's a 'steet wise' hospice nurse?

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I do not wish to hear any comments from folks not in the 'end of life business' but I would sincerely appreciate hearing from a person who cares for patients who die of emphysema. Since patients and their diseases are different, there must be those who suffer more than others, and some who suffer less, and some who suffer not. A little bird told me that unless we are in the bed slippers of the person we really do not know if they suffer.

Has any patient on their last day ever spoke up and said "Hey, don't feel a thing"?. I do not fear death. My fear is not knowing the truth.

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  • Posted

    you may learn more in a hospice care forum, nurses who work directly with patients who are in their last days.  Although I dare say not all hospice nurses are 'street wise'.

     

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  • Posted

    Hello Keepin Alive

    A very understandable question...to know what is to come. It is questions and answers such as this that helps many prepare, understand and plan for the future of inevitability.

    I can answer honestly that I personally have not heard anyone say they 'dont' feel a thing'....We do need to keep in mind that there are 'stages' (so to speak) of dying.

    And there is truth that each situation of 'dying' , be it from COPD or  other instances, is a personal and individual one, with varing degrees of symptoms. There are many factors which influence how this process affects the individual.

    The truth is we do have a say, now while we are able, to have some control and some say in our deaths from COPD.

    Gather information about what resources you will have available to you. Decide if you have the option to die at home, in a hospice or in hospital. And make your choice. Speak with your family/caregivers and ask for their input. Know what community health care services are available to you...what their availibility is, cost if any, services availabe. Meet with a spiritual advisor. And especially have a forthright discussion with your physician and what you want.

    Being able to die peacefully and with acceptance is something you can have some say in by planning in advance.

    There are many medications available, used on their own or in conjunction that are  very good at easing dyspnea (shortness of breath), there are medications to relieve mucous buildup and relax muscles, help rest and relaxation. Oxygen is also a medication that is widely used to assist breathing, and may be instituted a long time prior to "the end", while being used during the dying process itself. Positioning and other comfort measures can be used.

    To have a physician who has experience with death and dying, who understands and knows palliation and who has your trust will be one of your biggest assets.

    Death from emphysema can be well managed.

    I hope this helps somewhat.

    Lill

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    • Posted

      Thank you for your sincere reply. I did OK with breathing until I reached age 68, 5 years after retiring. Then the emphysema advanced. Good that I retired when I did because now I'm 72 and have learned the difference between being alive and living. Don't get around much anymore.

      Looks like the best place for me would be the local hospice.

      I know folks all react differently to events, so I should of known there's no way to predict just how the end will occur.

      My doctor is good. He has been in practice 25 years but he does not have a gracious bedside manner - that's OK.

      Connecting with folks like you help because there is no one else that feels good about discussing the topic, so I keep quiet. Again thank you for your words which have helped me do what's right and proper. HW Sollars

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    • Posted

      Keepin Alive

      Yes. I understand the words you have written, as well as the ones you have not. smile

      Please ask for a social worker referral, or an advisor to the community health care. Call for them to come and speak with you, and they will provide you with answers to what you should do in respect to planning. They are good with this...I am not certain where you live, but here should be someone who can assist you.

      One other thing HW,  you might address some type of 'legacy' for those who will live on without you.... to leave them as a measure of comfort when you have moved on. This is not property nor money related...by something tangible. I can explain more.

      If you wish to further discuss please send me a private message and I will do my best.

      Wish I was there to help HW.

      Lill

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    • Posted

      Thanks again for your advise. If the pulmonary rehab starts and I hope soon, they should they have contact with a social worker. Look forward to discussing the things a social worker would ask

      I was present several times when a social worker spoke at length with my wife concerning her illness, so I have somewhat of an idea of responding now that it's my turn.

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    • Posted

      Good to know HW.

      Learning either directly or indirectly, is helpful either way. I sense you have learned much....education is power...

      Education is being prepared and having choices...and puts you in the driver's seat!

      I suggest to all, to write questions down so you are prepared ahead of time. Even bring someone with you, two sets of ears are better than one! Two minds even moreso!  smile

      If you wish to discuss anything, please feel free to private message me on here and I can  certainly converse freely with whatever you wish, in respect to this.

      So glad you are being pro active and doing what needs.

      The rehab is wonderful to have...Lots to learn and some support also.

      Are you on any medications at this time? Are you managing alright with them HW?

      Lill

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    • Posted

      Yes, ........... Advair, Spirvia, Lisiniprol, Simvastatin, Amlodipone,

      Ventolin Spray (used not often), Albuterol & Ipratopium Sol.& a baby aspirin.+ the O2.

      Doing OK with the mgt. I will sometimes not take one or the other pill to try to give my body a rest.

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    • Posted

      Hello HW

      Sounds as though all bases are readily covrered with those.

      I might add, in respect to the Ventolin (the rescue inhaler), don't be shy on it.

      Some feel they must wait until they are gasping before taking it, when it should be used must sooner. If you feel discomfort/pain in  your chest from breathing, use the Ventolin, even if you are not breathing all that poorly. Another important tip...using the Ventolin pro actively, as in before you actually require it, is also encouraged.

      For instance.

      If you know that walking to get the mail, or, knowing you will be short of breath from washing up , then by all means go ahead and use a puff or two of the Ventolin prior to beginning these efforts.

      Sit upright, use a spacer, take the Ventolin, sit a minute or so and then go on about your business. It will pre emptively allow you easier efforts along with more relaxed breathing and you will be impressed with your situation! smile

      Give it a go.

      Also, if you go out into the cold and wind, take the Ventolin a few minutes prior to heading outside, and use a loose scarf over the nose and mouth and you will fare better.

      Good night Keepin Alive.......Keep on , Keeping on!

      Lill

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    • Posted

      Well, just the moment when a person thinks they have everything taken care of something comes up that was not thought of. Thanks again for the note on the Ventolin, I had wondered if to much of it was not good. The instructions for me said no more than 4 times a day. I do not understand about using a spacer. As far as going out in the cold that shouldn't happen, it's april here in Florida on the treasure coast and close to 80 everyday. .
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    • Posted

      smile  Good Day !

      Nice with the 80degrees,you lucky guy!

      A spacer is a plastic tube apparatus. It is used to give some of the inhalers, for instance, the blue "rescue" Ventolin.

      The purpose is, it allows people to ensure they get a full dose of the medication, despite being unable to take deep breaths. It allows a person to take their time, breath more shallow and still be able to gain the full dose in order to get the full benefit, without so much ending up in the mouth.

      They can be taken apart to be cleaned, easily. They also help prevent throat irritation from the medication as well, in using steroidal inhalers.

      I would like to give you a link to the site of the one I use, but I do not think that is allowed on here...so look up this name for an example to see ~ "AeroChamber" is the name.

      Even though your prescription says four times a day, the truth is that if you were to be very very short of breath you could safely use much more than that..you might put that on your list of pending questions..But don't be afraid to use it pre emptively.

      Have a very nice warm day.

      Lill

      I use the

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    • Posted

      You have answered my question - my in home Salter nebulizer plus from Lincare has tubing and a plastic cone shaped device that makes it easy to breath in the mist.

      Would you how many of the medications I take are steroids?

      Also if avoid taking any of my medication and only use oxygen I feel more alert so looks like the pills and other goodies the Dr. prescribed are for other reasons but make me feel a little tired and drowsy. Is this normal?

      Again I appreciate your taking time to advise me, it's helping and I will not burden you too much further - think I need to call my Dr. and ask him what's going on with the rehab he spoke of. Have learned his office is a bit forgetful.

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    • Posted

      Hello!

      Advair contains two medications~ fluticasone which IS a steroid and salmeterol which is a bronchodilator (not steroid)

      Spriva is not a steroid, it relaxes the smooth muscles of the airways

      Lisinopril ~ is what is known as an ACE inhibitor and works to control high blood pressure and is also used to treat Congestive Heart Failure

      Simvastatin is not a steroid, and is a statin drug, used to lower LDL cholesterol and triglycerides~ it is not a steroid

      Amlodipine~ is to help the blood flow more easily~ not a steroid

      Ventolin ~ is not a steroid

      Albuterol ~ is also a bronchodilater (widens the airway)

      Ipatropium~ relaxes the muscles of the airway also~ not a steroid

      ASA ~ not a steroid.

      No need to apologize. I am not in the least troubled and enjoy answering your questions as best I can.

      I agree that you should contact and push for a date for your pulmonary rehab.

      And I think when you go to it, you should bring ALL your medications with you and have them reviewed...you might be able to get rid of one or two.

      The tired and drowsy can come from some medications, but also, tired and drowsy can come from COPD itself. Or breathing difficulties themselves, just by the fact of not getting good aeration of the lungs and perhaps, in your case, according to your medications you look to have some issues with the heart...these can all contribute.

      Are you abe to take any exercise and if so, what do you do for this?

      Also, in a previous post, you had mentioned not wearing your oxygen right on your face during the night...this concerns me as I am wondering if you are not keeping oxygen levels high enough during sleep...if it is not on your face or under your nose, there is no guarantee once you nod off that it would be adequate. This can make you tired also. Just a thought.

      smile Lill

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  • Posted

    Think long and hard about whether you want to accept oxygen. When docs say, "it's time for you to go on oxygen" many accept as casually as we accept that it's time for us to start using any particular inhaler suggested by a doc. But whereas it can be an easy decision to stop that particular inhaler if, say, it turns us green and makes us howl at the moon , it is almost impossible for us or our loved ones to decide to remove oxygen, even if the user comes to view it as a worse prison than just the underlying lung disease.

    Whatever you decide, I wish you peace and comfort.

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    • Posted

      Doctor put me on oxygen the first part of 2013. I did not use much on a daily basis then but it did help when episodes of shortnesws of breath happened. Beginning in 2014 I went off the cylinder O2 and rec'd the Inogen home unit and the portable one for away from the house. Since then the O2 is and item I would not care to say goodby to. Thank you for the advise.
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    • Posted

      Keepin Alive

      I agree with your choice.

      Oxygen is actually a medication. It is classified as such.

      When a person gets closer to death it is used constantly, through varying delivery...mask, nasal prongs, etc.

      But while it is used continuously, the rate is often turned lower, especially if a person is know to retain carbon dioxide.

      However..it is a comfort mesure but also a necessity....becoming hypoxic (which means having a lack of oxygen) causes symptoms such as confusion and air hungar. Having the oxygen on , even at the low flow, is helpful and aids chemically and with the oxygen exchange processes.

      Never be shy of using it~ I am certain you know this already wink

      Oxygen really does become necessary as time goes on.

      Lill

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    • Posted

      Ah ha, you answered something I was wondering about. At night I seem to sleep better if the O2 is set on the lowest flow rate. Sometimes I even pl;ace the cannula on the pillow about 2 inches away from my nostrils. So I learned something about CO2. Thank you
      Report

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