Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Peggy Get them through their aides to provide as much service as you need, whether help with meals or baths or getting up and walking around or whatever that might be. I know its not in your character to assert your right to be treated like a Queen. But, everything they can do for you, means more moments you and and the kids can just socialize and hug and talk. I was a bit surprised when you talked about volunteers coming and helping with some of the things as they are things that I understand the hospice aides to normally do as part of the service. I want you taken care of as if you're living in the lap of luxury. > > > > Well, The lady from hospice came and talked with us for probably > > three hours. , Bill, & me. we all ask questions, got > > answers. It > > was a very interesting visit. She told us what hospice does for the > > patient, patient care, patient comfort. They do not change your meds > > or your 02 L flow. They supply whatever meds you are on. My Dr. will > > still be MY DR. They do have dr's here in Ocala > > that will be approved my care from here but Dr. Antony will order my > > care. I am not sure that makes since or not. > > > > The nurse comes in the AM to do an assessment of my needs. Judy > > (hospice rep.) was wonderful. Christian lady. prayed when we > > finished. > > Wonderful prayer. > > Hospice has a group of volunteers that will come help with my bath or > > any needs I have. Then they have Crisis Care for end stage. > > > > I know this doesn't make much since so I'll try to do better next > > time. LOL > > I am good today. Sitting talking -- how can I not be good. lol > > > > THANKS for the support.. love .. and prayers. > > > > > > Love & Prayers, Peggy > > Florida, IPF/UIP 2004 > > > > " I believe that friends are quiet angels who lift us to our feet, > > when our wings have trouble remembering how to fly. " > > > > > >  > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009  Peggy... well little by little the ball is rolling for your constant care and comfort! Goody. I have to be a little bit pushy to get Rich out of the house. (Before his surgery...and he will return to normal in a few weeks). I know the importance of our caregivers having a break and doing something they really enjoy. Rich loves golf but of course that's over now for the winter. I can top your two nurses who didn't know about IPF... my new PCP said he had never heard of NSIP! Now that got my attention as I'm sure your nurses did. He's learning now...records coming in now from UWMC. You can take it as it comes dear heart, I know you can. Don't fight what's good for you girlfriend! You will feel better just knowing is getting support and help. It's like taking in a big breath. And of course letting it out again! (: ) As a mother myself, I surely have empathy for your feelings about your kids. My girls frequently show worry on their faces even tho' they try not to let it show. It's hard too, for me to try and 'be brave and upbeat' when I'm really not feeling it. How wonderful that you are surrounded by so much love. Family as well as Air-Family. Are you planning on staying at home? I hope you will just love YOUR nurse... Big hugs to you today. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Hospice Help Hi Group, Well today a nurse came and brought some meds.. I will be getting calls and visits this next week and then things should be settled. I do have total say over the care I receive, the amount of meds. I am comfortable with them this far. and Bill were here today and seemed to have a rough time. Lord knows how much I love them.. anyhow I sent off with a friend of his for the day. He didn't need to be here today nearly as bad as he needed to get away for a little while. I think tomorrow I will meet MY nurse. the one today did an eval. They will be sending a over the bed table and a bedside potty--- it will never be used.. I promise. OH YES.. so far two nurses-- never heard of IPF.. YES I gave them a patient hand book and pamphlets and a crash course on our disease. More later.. any questions welcome. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Dear HRH, I can hear the relief in your 'voice'...now you can rest easy knowing that some of the load can be lifted...I do hope they realise you require right ROYAL Treatment...just direct them to moi if they need nay training in THAT department...curtseys & so on....polishing of Tiaras..that sort of thing..Oh & the right way of presenting the Royal Supper..dainty little Cucumber Sandwiches with the crusts cut OFF....Slivers of delectable delights....ANYTHING our Princess Peggy fancies! lots of love n' hugs, >> Well, The lady from hospice came and talked with us for probably > three hours. , Bill, & me. we all ask questions, got > answers. It> was a very interesting visit. She told us what hospice does for the > patient, patient care, patient comfort. They do not change your meds > or your 02 L flow. They supply whatever meds you are on. My Dr. will > still be MY DR. They do have dr's here in Ocala> that will be approved my care from here but Dr. Antony will order my > care. I am not sure that makes since or not.> > The nurse comes in the AM to do an assessment of my needs. Judy > (hospice rep.) was wonderful. Christian lady. prayed when we > finished.> Wonderful prayer.> Hospice has a group of volunteers that will come help with my bath or > any needs I have. Then they have Crisis Care for end stage.> > I know this doesn't make much since so I'll try to do better next > time. LOL> I am good today. Sitting talking -- how can I not be good. lol> > THANKS for the support.. love .. and prayers.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Peggy glad things seem to be working out with hospice keep on teaching the medical people about this disease Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Hospice HelpTo: Breathe-Support Date: Saturday, November 7, 2009, 1:57 PM Hi Group, Well today a nurse came and brought some meds.. I will be getting calls and visits this next week and then things should be settled. I do have total say over the care I receive, the amount of meds. I am comfortable with them this far. and Bill were here today and seemed to have a rough time. Lord knows how much I love them.. anyhow I sent off with a friend of his for the day. He didn't need to be here today nearly as bad as he needed to get away for a little while. I think tomorrow I will meet MY nurse. the one today did an eval. They will be sending a over the bed table and a bedside potty--- it will never be used.. I promise. OH YES.. so far two nurses-- never heard of IPF.. YES I gave them a patient hand book and pamphlets and a crash course on our disease. More later.. any questions welcome. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Dear HRH, I can hear the relief in your 'voice'...now you can rest easy knowing that some of the load can be lifted...I do hope they realise you require right ROYAL Treatment... just direct them to moi if they need nay training in THAT department.. .curtseys & so on....polishing of Tiaras..that sort of thing..Oh & the right way of presenting the Royal Supper..dainty little Cucumber Sandwiches with the crusts cut OFF....Slivers of delectable delights.... ANYTHING our Princess Peggy fancies! lots of love n' hugs, >> Well, The lady from hospice came and talked with us for probably > three hours. , Bill, & me. we all ask questions, got > answers. It> was a very interesting visit. She told us what hospice does for the > patient, patient care, patient comfort. They do not change your meds > or your 02 L flow. They supply whatever meds you are on. My Dr. will > still be MY DR. They do have dr's here in Ocala> that will be approved my care from here but Dr. Antony will order my > care. I am not sure that makes since or not.> > The nurse comes in the AM to do an assessment of my needs. Judy > (hospice rep.) was wonderful. Christian lady. prayed when we > finished.> Wonderful prayer.> Hospice has a group of volunteers that will come help with my bath or > any needs I have. Then they have Crisis Care for end stage.> > I know this doesn't make much since so I'll try to do better next > time. LOL> I am good today. Sitting talking -- how can I not be good. lol> > THANKS for the support.. love .. and prayers.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > > Quote Link to comment Share on other sites More sharing options...
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