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 How do you know when to call/go to the doctor if LO is sick? 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post How do you know when to call/go to the doctor if LO is sick?
Coy has not been doing too well for the last couple of weeks. For that matter, neither have I. Remember the old commercial for an otc pill that asked, "Never sick enough to stay in bed, but never really well?" -- that describes how I've been. There seems to be something going around.

I got a call from the CHF nurse asking why Coy had not weighed (for transmission over the phone line) for the last few days. I said he had been a little under the weather, slept in, and I didn't notice that he was up until he was already dressed. She got very concerned when I said he hadn't been to a doctor and urged me to take him. Hmmm ...

I figure that Lewy has its good days and bad days and I don't necessarily call the doctor on all the bad days. Maybe I should. If he has a cognitive decline, I watch very closely for other symptoms to appear and call promptly if they do. If he is coughing more than usual, I call that in promptly (and the doctor calls a prescription to the drug store.) But if he doesn't have a fever or a cough or a cognitive decline or shortness of breath, I take a wait-and-see attitude.

Should I be more pro-active? What kinds of symptoms prompt you to call your LO's doctor? Coy is still in early stage lbd. Did you do anything differently in this regard when your LO was in early stage?

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Mar 12, 2011 11:47 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: How do you know when to call/go to the doctor if LO is s
Jeanne - I think you should just use your common sense and call or take him to the dr. when you think he needs it. Does he have an AD and a DNR? What kinds of things did he say he'd want to have taken care of by the medical community before anyone knew he had LBD? It doesn't sound to me, from what you previously described, that there is any cause for alarm and you need to rush him off the dr. for every little thing. That sounds excessive to me. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Mar 13, 2011 12:03 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: How do you know when to call/go to the doctor if LO is s
Early on I called less and our appointments were about every 3 months. Then, and now, I would typically not call if something had happened once (ex. diarrhea). I constantly research the internet for side effects and I keep notes of medication changes to figure out if they have had an effect. Now, we have appointments every 6 weeks. I don't typically take my LO in at other times for things like nausea but I call one of our Dr.s' nurses about once every 3-4 days to discuss some symptom or other. It's gotten so that they know me and I know who I can trust. There is one who used to be a hospice nurse...she is particularly helpful. Anyway, I have a lot of over-the phone contact but less in terms of actual Dr. appointments or ER visits.

The other day my LO didn't ingest her 1.5 mg dose of exelon in the evening. It was amazing to me how her cognition suffered the next day even though she had her 3.0 mg dose at breakfast. Good luck to you. AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Sun Mar 13, 2011 12:17 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How do you know when to call/go to the doctor if LO is s
Jeanne, I think Lynn is right: Use your common sense. We nurses tend to be intervention-oriented and are always sending people to the doctor 'just to be on the safe side'. You're a smart woman who can certainly recognize if Coy is in real trouble. If he exhibits no CHF symptoms, e.g. shortness of breath or increased swelling of the legs or feet, there is probably no need for concern on that account. If you have a stethoscope, just listen to the bases of his lungs from the back, with him taking deep breaths through his mouth, for a crackly sound on inspiration that might indicate fluid. If he has 'crackles' you might let his doctor know. He might increase his Lasix or suggest some other simple measure without your taking him in. Just a thought.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Mar 13, 2011 12:18 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: How do you know when to call/go to the doctor if LO is s
Thank you all.

Pat, that is an interesting idea. Us non-nurse types don't typically own stethoscopes (I don't) and wouldn't know where to find the bottom of the lungs from the back, or how to differentiate normal sounds from troubling sounds. But those are all obstacles that could be overcome. Do you think it would be worthwhile? I know sometimes even when the doctor says his lungs sound "normal" through the stethoscope she will still prescribe an antibiotic based on his coughing and other symptoms, "just in case." We're being overly cautious to avoid pneumonia.

Is it the CHF what I'd be checking for with the stethoscope? That is a very interesting idea.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Mar 13, 2011 1:40 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: How do you know when to call/go to the doctor if LO is s
Jean, if he has right-side CHF it would manifest itself in swelling of the legs/ankles/feet. If he has left-side CHF, it would cause fluid in the lungs [due to obstruction in cardiopulmonary circulation], causing shortness of breath and 'crackles' in the lungs, starting in the bases. The crackles are likely to precede the shortness of breath. You could buy an inexpensive stethoscope, take it to his next appointment and ask the nurse or doctor to show you how to listen for these sounds. You might even be able to Google a video on the subject.

As you probably know, the reason they check his weights frequently is that a gain of five or more pounds in a day or two can mean fluid buildup caused by exacerbation of CHF [of either side].

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Mar 13, 2011 9:26 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: How do you know when to call/go to the doctor if LO is s
Thanks, Pat. Yes, I understand what the weighing is about, but oh-my-goodness is has been a real challenge to get Coy to understand it. Before he weighs he has to answer a series of questions. One question is, "Are you eating less salt?" He always answers No. The nurse has called me about that, concerned. I said the problem was with the question. Eating less salt than what? Less than he did yesterday? No. Less than he did last week? No. Less than the average American diet? Yes! But he has been doing that for many years and it doesn't seem to him to be "less" -- it is just normal. People with dementia are often pretty literal-minded and that question is just not suitable for him.

But the piece I really have a problem with is after the weighing. The voice tells him his weight, how much it is up or down from the previous weight and then says, "Your maximum allowed weight is 153." That is the part that confuses and upsets Coy. I tell him, "Hon, Dr. April would love for you to weigh 155 or even 158. I would be very happy to see you gain some real weight that you put on gradually by eating good things. All the scale is concerned about is water weight -- extra fluid your body is retaining that is hard on your heart. This builds up suddenly. All the scale means is that if you weigh more than 153 tomorrow the nurse will call and ask about your health." The last thing any of us want is for Coy to be thinking he should be dieting. I've been so exasperated by this I've been tempted to send the scale back. :x

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Mar 13, 2011 3:15 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: How do you know when to call/go to the doctor if LO is s
I've had patients on those remote CHF monitors and I frankly think they are over-hyped, not to mention a bloody nuisance for the patient. Sorry--that's just MHO. I might add that I also avoid 'self scan' grocery checkout lines because, 1. I don't want to put checkers out of work, and 2. I always have produce and it takes me longer to find it on the monitor, with people behind me in line sighing and tapping their feet. :P What I'm getting at is: While technology has its place, it is no substitute for human ability.

Years ago, before becoming a nurse, I worked in paper technology where my company was trying to devise ways to measure the aesthetic properties of paper, particularly when printed. It was thought that one could quantify all of those quality control parameters that go into a pleasing appearance on a page and even implement these measurements on the production line. Our Japanese clients were dubious. And they were right. Aesthetic properties, as a whole, cannot be quantified.

And, while many medical tests are useful, they are no substitute for a hands on--eyes on--assessment.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Mar 13, 2011 4:14 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: How do you know when to call/go to the doctor if LO is s
This thread is interesting to me ... because I thought I was calling hospice really EARLY. I had absolutely no clue that I would be watching him die a week later. How do you know? I'm not sure we ever really know.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Mar 13, 2011 4:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: How do you know when to call/go to the doctor if LO is s
Gosh, Leone! Do you really think he is? I'm sorry--and yet, I'm not. I know you'll understand that sentiment. :cry:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Mar 13, 2011 6:53 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: How do you know when to call/go to the doctor if LO is s
Don't be sorry, Pat. Hopefully, his graduation is soon. He is eating very little and sleeping most of the time. He is on morphine for pain - which I've been told I can use as often as seems appropriate. Even then, I can't touch him without agony registered in his face. He is lying on his side in a fetal position. We've surrounded him with pillows to add as much comfort as we can.

For an Irishman, St. Patrick's would be appropriate. Don't you think?

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Mar 13, 2011 7:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: How do you know when to call/go to the doctor if LO is s
My thoughts are with you Leone. He has certainly had some huge declines in the past few months. He sounds so much like how my dad was his last week or two. Sending a giant hug, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Mar 13, 2011 11:38 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: How do you know when to call/go to the doctor if LO is s
Leone, words cannot express my emotions about Dale. You and Dale have been in my thoughts and prayers for weeks now. Like Pat, I am so sorry, yet hopeful that Dale's suffering will soon be over. What a hard journey for you both. I wish you both peace at this trying time. Love Bernie


Sun Mar 13, 2011 11:48 pm
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