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Caregivers Helping Caregivers

This post is for all primary caregiver DPers for comments, suggestions, moral support, or to just vent, as the caregiver is under unimaginable stress 24/7.

Being the primary caregiver for a loved one takes a heavy toll on a person. Some people just can’t stand by and do nothing, even though other family members seem very happy to go on with their lives, quite undisturbed by the trauma and heartbreak of it all. But, to be fair, not everyone is cut out for the job. I dare say anyone who hasn’t been in that position doesn’t have a clue about the stress, drama, heartache, and frustrations of the seemingly never ending ordeal caregivers go through on a daily basis. Maybe some of those people will drop by and learn something that they'll remember down the road, should they ever have to take on the role of primary caregiver for their loved ones.

Being a primary caregiver is not a new role for me. I’ve had to do it a few times in the past. It was never easy but, this time is the absolute worst, because I know my beloved husband is slowly dying and it is so very, very, hard to stay calm about it. But, stay calm I must, as all caregivers must remain calm, especially in front of the loved one.

DPers who have been on the receiving end of such care, like our friends, bear and fishy, may have suggestions to help the caregivers tend to loved ones in ways that we haven't thought of yet. Anything that helps is most appreciated! Help is the one thing most of us don’t have… At least, nowhere near enough help to make things a little easier. We get tired and overwhelmed. But, we can make this post a place to recharge ourselves for the next round of problems, with the help from friends we haven't met yet.

I have always found that RP supporters, and DPers in particular, show themselves to be among the most caring and generous people on earth, always willing to help one another. That’s what this post is about. So, go ahead and vent. We understand! Heck, we will probably all take a turn at venting, too, when the stress becomes too overwhelming. I'm sorry I couldn't do this post before our friend, skippy d, burned out and I hope she is lurking here and that the Mods will reconsider and reinstate her membership, after learning about the kind of stress she is under.

Please don't hesitate to ask for help with a specific situation, because you never know... one of us may have "been there/done that" and might have the answer for you. Others of us maybe haven't had that particular problem YET, so those who have dealt with it can be of invaluable assistance for the rest of us. Just being aware of another's pain and supporting that person with warm thoughts and prayers can do wonders.

Caregivers, please visit this post often. You never know when you'll get the answer you didn't know you needed. Of course, prayers are going out to all caregivers from many DPers. May God help us all.

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I must absolutely refuse the cod liver oil

as I'm still burping up the spoonful I had in 2nd grade. I actually prefer a spoonful of lecithin (and there's nothing closer to motor oil). IMO, the only thing worse than cod liver oil is Brewer's Yeast.

Spinal Tap = maybe they also want to know how much "Terrence McKenna" I've consumed over the years? (I hear it resides in the spinal fluid)....I know nothing about a spinal tap other than I've had an epidural once, a spinal block, that huge long needle for amniocentesis once so I'm sure I could manage but I know nothing more because I've not actively pursued because I'm "ignoring it" and not claiming...as you're pointing out may be the actual wisest route to take.

I'm a paleo already but back in the day it was referred to as "Atkins". Best for diabetics too. Mom has been a lil "junior Adelle Davis" since waaay back so I have a pretty vast knowledge of nutrition. Plus I did a stint back in the 90's working under the national food director for a major foodservice co. that was in the process of reformulating all their recipes, cycle menus and including nutritional analysis and cost accounting for every recipe so conversion and analysis was my sole job for about 2 years. And I don't mean McDonald's either but a company that spanned B&I (Raytheon for example, which I have been inside of!), Corrections, Schools, Hospitals and Executive Dining so my recipe base is vast. If I ever need to cook for more than 400, I've got it held down.

Current symptoms: Ah. I've never thought of whether my blood flow feels off, I'll have to see if I can perceive that. Worst manifestation to me is I've been "levitating" a few inches above my head on and off since 2008. My brain's perception is skewed somehow. If someone were to walk up and barely touch my chair, I would feel as if I'm falling backward to my death, in grand roller coaster style. It's like a state of constant "talking gyroscope". If I get behind the wheel of a car, I get my horizon so fixed finally that my dizziness goes away but if I'm left unassisted in a darkened arena, my brain cannot actually let my legs "find the floor". It is bizarro world to not find the floor, I'd say most people take that for granted that they trust their feet are firmly planted. Oh and stairs are an optical illusion much like finding the floor. Walking into items like footboards, door frames, cabinet doors because my eyes misjudge where the actual item lies in double vision etc etc. Physical therapy is worthless for this, "been there done that, wrote the book about it". I know folks who pay good money to get as "off-plumb" as I am, but when you're stuck on drunk and can't get out, it's not so fun. Saturday Night Palsy with my right eye sort of, just the eyelashes dropped. No tremors. I often wake to both legs cramping at the same time and I also get that intermittent finger numbing. And then all the flukey nerve signals getting crossed up and firing off at inopportune times, fun stuff like that.

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer

Not to be confused with castor :D

Cod liver oil is much better these days. I wouldn't consume it otherwise. I hate fish oil and won't consume it. Cod liver oil is my compromise, and it has some added nutrition. The cod liver oil from my childhood was not as well produced, it was also less fresh and more often rancid. Vitamin B supplements have the same effect on me as fish oil, plus the added benefit of once in a while making me feel nauseous. Vitamin B made me throw up when I was a kid. Many things though, made me throw up when I was a kid.

You need not know anything about spinal taps to tell me what I want to know. I'm not interested in procedure or the filling in of the blanks on "why" one has been suggested for you. I am interested in the circumstantial evidence information regarding it being suggested to you. What did the doctor tell you? What words came out of his/her mouth in association with the words "spinal tap"? Did the doctor reveal any axillary information regarding the information he/she wants from analysis of your spinal fluid? Do you remember any the context? Was a spinal tap suggested for something directly to do with the theory that you have MS, or was it suggested as weeding out other theories [i.e. spinal meningitis]? Perhaps the doctor told you none of these things. That would also be information I seek, that the doctor didn't tell you any specifics about suggesting a spinal tap.

Paleo... You are well studied in much nutrition. You are specifically well studied in nutritional compounds for healthy nerves. That specific aspect isn't inherently paleo. I enjoy the specifics of that article. I do however lean paleo, and I essentially have always embraced the general Atkins philosophy as Atkins is in line with what my 9th grade biology teacher taught me. Yes it certainly is in line with diets for diabetics. Funny thing is that it is also in line with diets for hypoglycemics, arthritics, cancer patients, etcetera. It is generally in line with the foundational diet that seems to be generally healthful to all humans. Differing subgroups or archetypes of humans are particularly sensitive to deficiencies(passive) in this or that aspect, this or that toxin(active). Humans already "diseased"(Diabetes) are particularly quick to react to straying from that which is good basic human diet. All roads lead back to the basic healthy human diet.

"I've never thought of whether my blood flow feels off." I'm glad you worded it that way. When I wrote what I did I almost went to change "feel". I was aware that I was ultimately dealing with "thought". "Blockage of blood flow" in that context was a craps shoot for me. I just threw it out there like, "Do cucumbers sometimes taste like watermelon to you?" If you were to reply with a "yes" to that, that's a hit. "No" would actually mean nothing regarding anything of substance.

Your experience with vertigo, finding the floor, and cabinet doors sounds like my experience times ten. I don't know what you mean though, by "eyelashes dropped". Tremors: I get shaky, but I have typically and dominantly associated that with my blood sugar. I experience involuntary movements though, most often in my fingers when doings subtle things like using a mouse.

They certainly overlap, but I don't always necessarily associate stiff muscles and cramping. Truly stiff muscles and cramping are associated with low pH. The sensation of stiffness can be nerve related and not necessarily associated with muscles that are truly stiff.

I'm still trying to unravel the mystery of pH, whether it be in the stomach, intestines, or blood. It seems counterintuitive even to me to claim there is a basic diet and then concern myself with the details of different roads to that basic destination. Why not just embrace the destination? I don't have an answer for that but for saying that the combination of being science-minded and obsessive-compulsive equates in interesting results.

Other than pH I am of late fascinated with iron. I have this strange notion that iron has been promoted willy-nilly for decades. Whether or not an overabundance of iron might be directly toxic in and of itself, one aspect of it seems to be evident, that it works like fluoride to iodide [fluoride displaces iodide], that it displaces copper. Fluoride causes iodide deficiency. Iron overdose causes copper deficiency. Beyond those specific scenarios I think there is a basic principle expressed there that is one of the underestimated principles to effect all nutrition and health. Direct toxicity is pretty simple and not a huge issue in figuring out what might be overconsumption of this or that, but overconsumption [and false consumption] are underestimated in terms of deficiency. Sure there is much awareness right now about what we don't eat when we are busy stuffing ourselves with gluten, but what about stuff like calcium? What if calcium supplements that provide unusable forms of calcium don't just pass through us but directly prevent us from utilizing the good calcium we consume? What if crappy supplements actually starve us of the stuff we actually seek. The body is easily fooled. Call it the carbon monoxide principle.

That's enough.

No cod liver oil is not better now

I have that expensive Nordic kind on the front porch and even the cats avoid it.

Yes, I had just finished a test (vestibular) at the ENT to prove away inner ear 1st when the ENT doc said something along the lines of "Next thing you need is a spinal tap to prove MS" and I took it for face value since he was trained to at least know which other paths it may be, if it's not ENT. All the neuros seem to concur as well that "if it's not inner ear, it's brain". I haven't been back to my primary doctor to even start another route of diagnosis (I can control the diabetes with diet, however I might should be on some metformin but avoiding). I suppose my primary doctor could say I need some other horrific test other than a spinal tap...truly I was trusting the knowledge of the ENT, probably shouldn't have.

- I have really long eyelashes and the center portion of right eye eyelashes "dropped" into my vision like an awning, then it corrects, then it comes back down. Kind of like the difference between eyelashes pointing up and pointing down. It's not Bells Palsy or true ptosis because my eyelid doesn't droop. But as we know, if something is manifesting to the point of physical changes on the outside of the body, what "chaos" is going on inside the body? The internets says I may have the morgellons lol !

Calcium and mag I don't think I could live without, the one thing that eases the cramps. I use spray magnesium "oil" but am cautious about the calcium. That dude David Wolf (the pineal gland decalcifying dude) scared me to death concerning calcium and its "barnacle-like" qualities lodging in and clogging the ole veins...

SC not CBD friendly state UNLESS I care to make another stand and have a medical hissy in asking why the kiddies can get cbd and I can't. Not in the mood to take that on right now.

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer

"...a spinal tap to prove MS" -red flag

"prove" ...uh-huh, riigghht o_o
The MRI is the deciding indicator. You've already had one. If your MRI shows no sign of MS, then the spinal tap results will be inconclusive from the get-go. The problem with most doctors [and most everybody really] is that as one becomes convinced of one possibility, the other possibilities fade from view. The spinal tap could be a good thing, but it could be a bad thing if simply used to justify a diagnosis of MS.

CBD is not illegal

to purchase [or transport, or possess, or consume] in South Carolina. It may however be illegal to sell in South Carolina. The stuff that I get [linked in my first comment] is currently perfectly legal to be purchased from and transported to all 50 57 States.

Living in the real (clampdown) world here....

because in SC if you require any other medical attention and even thc shows up in your "dea/insurance required drug testing", and have been found to have partaken (even months ago of course), you will be "fired" by your doctors, labeled a "doctor shopper" and blackballed from medical care especially from any pain meds, for like forever "no fly list" style.

Does cbd show up? I would think so.

State Sen. Tom Davis introduced a bill that would allow the use of cannabidiol for seizure treatment.
In South Carolina, where a person can be sent to prison for up to five years for growing a single marijuana plant even if it's his first offense, a bill to allow the use of cannabidiol for seizure treatment was introduced by state Sen. Tom Davis (R-Beaufort) late last month. Since then, at least six other Republican co-sponsors have signed on to the effort. Whether the bill can become a law is still unclear, however. Gov. Nikki Haley hasn't commented on the measure but has said she does not yet see broader medical marijuana legalization as a priority for the state. http://www.huffingtonpost.com/2014/03/27/conservative-south-...

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer

The terminology is yet ambiguous,

but it will sooner or later be sorted out. You certainly know the difference between THC and CBD. A surprising number of people don't. THC is certainly used in medicine and so is CBC. "Medical marijuana" is a catchall, but it is more and more exclusively used to refer to THC. THC will hardly ever be available over the counter any time soon in South Carolina. CBD is perfectly legal to be purchased from someone in South Carolina and shipped in. Perhaps one day "medical cannabis" or "dietary supplement cannabis" will be the common term for CBD. I don't know, but the medical industry is bound to different laws and regulations than the food industry. What a licensed medical professional can use for seizure treatment is a completely different realm from what an individual like you or I can use ourselves for our own seizure treatment protocols or any other protocol we wish. Add children to the mix. This overlaps into a third realm as the State seems to think it owns them and everyone is a bit scared that the State will take his or her child whimsically even if there have been no laws broken. Now try to make decisions about children exposed to professional medical care. It's a mess. There is nothing illegal about feeding CBD extract in oil to a child anywhere on the planet that I am aware of, but if you ever tell your doctor or your child's doctor that you are going to feed your child hemp oil, chances are things will get really messy really fast.

Telling your doctor that you are going to consume or are interested in consuming hemp oil is a craps shoot. A pretty tiny number of doctors will say, "Cool, tell me how it works for you, if it helps. I'm interested in the results." Most doctors will actively try to talk you out of it, not all out of mere ignorance or industry prejudice but many just for the sake that it is not part of their plan. What's strange to me is that I have not yet heard of any doctors who provide the middle ground, those who might snidely say, "Go ahead, drink it up. Pull the money out of your wallet and burn it while your at it. Have you tried that yet?"

The Huffington article is a confusing mishmash of various issues and different pieces of legislation.

The one issue in your comment that is a real concern is drug testing. I actually don't have a clue about that. I think most drug tests specifically test for THC and not cannabinoids in general. I could be wrong about that, but discerning CBD(exocannabinoids) from endocannabinoids produced naturally by your own body would be pretty difficult. CBD is a true supplement in that it closely matches that which we produce ourselves. It's much like ingesting melatonin that was obtained from an outside source or using swine estrogen to supplement our own. THC is not so matched with the cannabinoids we ourselves internally produce, and it is therefore easier to discern from the rest. There is a tiny trace amount of THC in CBD oils, not enough to make it illegal to buy or possess, and I don't know to what degree it is traceable after being ingested.

"front porch"? Is that Carlson?

At first I thought you meant that you leave it on your front porch. Yes, it would get quite rancid and more fishy-tasting if left on the porch. :D I think I've had most brands of "Norwegian" available but Carlson. Some of them are as fishy as straight fish oil, but Twinlabs is my favorite. I've never burped up fishiness from Twinlabs Norwegian. I haven't read the rest of your comment yet. I'll get to that directly.

I just checked

yeah it's Carlson lemon flavored...lol Nordic, Norwegian. I needed the refrigerator room. I see that Twinlabs has softgels, maybe that's the way to go.

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer

OMG, you have the straight oil?

I can't imagine doing that. I figure it would make me instantly projectile vomit! Thank god for gelcaps! The regular fish oil though, even in gelcaps, gives me fish burps. Yuck! The cod liver oil in gelcaps typically doesn't.

Carlson is a Swedish name anyway. What's a Swede doing with Norwegian cod liver oil? It's probably some kind of evil conspiracy. :D

Well what else did you think I meant by

No worries here re: evil, I have a polartomten for that sort of Swedish thing.

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer


was the dosage in your first coddish comment, the reference to 2nd grade.

I am envious of your tomten. Nothing but gnomes around here. They seem to run the place. Creepy.

re: spoons/2nd grade -

I do not respond well to change :P

Are you allergic to anything?

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer


I ultimately do respond well to change. I typically forget that though. I spend most of my energy avoiding and resisting change at all cost.

When I was a kid I would sometimes projectile vomit mashed potatoes instantly upon swallowing. Then again I seemed to be somewhat allergic to all forms of carbon-based nutrition, short of maybe Fruit Loops and Velveeta. At the other end of the scale I would terrorize my brother by throwing handfuls of poison ivy toward him [he was quite sensitively allergic to it].

I've known a handful of women that consistently made me break out...

You seem to be asking a serious question so I'll just say that I'm not diagnosably allergic to anything that I am aware of. Maybe alcohol. Down that road I suppose I could add gummi bears and other things I find quite addictive.

Gummi bears?

For shame!

I had a question if mold was involved in "shorting out my circuits", I'm allergic to mold for one. So just wondering because allergies are auto-immune right?

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer


This brings me back to the spirit of my original comment to deacon. If I were ever diagnosed with MS [which would be remarkable as you would hardly ever find me in a position to be diagnosed as such, at least until I was too far gone], I would immediately go into high alert mode for the possible alternatives to such a diagnosis. On the top of that list would be fungal infection [i.e. Candida]. If you are particularly sensitive to fungus I would suppose it wouldn't matter if that fungus was external or internal. Between the two, your MRI supports the notion that your body is at war with fungus and/or their mycotoxins. If that is actually the case, then a spinal tap would probably show the same immunoglobulin level as would be used to support a diagnosis of MS. A worthy doctor would use the MRI to hold off on the declaration of MS. So a doctor that is already privy to your MRI and wants to continue with a spinal tap to "prove" you have MS, is questionably worthy at best.

If I were you I would start living as though I were suffereing from Candida run amok. Whether the suffering is from mycotoxic reaction or that fungus itself is compromising systemic physiological function, it doesn't really matter, chicken or egg stuff. It doesn't really matter either too much at this point if it's specifically Candida as what you would need to do against it for the most part is not this or that fungus specific.

The beauty of simple approaches to health is that even if it's not fungus but MS, Cancer, Diabetes, or whatever, removal of stuff like gummi bears and alcohol is critical.

There are also some things specific for Candida that you can do of course, like study specific nutritional programs for the removal of it. Also, above somewhere you mentioned application of a topical medication. You may try getting ahold of some Zystatin. It is supposedly the best topical antifungal currently known. It is apparently quite safe and therefore worth a try. If it helps you then chances are you suffer from fungal infection. If it doesn't help, you haven't lost any ground.

Don't forget too, to double check for external sources such as your basement. Yes that's obvious, but there are many less obvious places starting with the cabinet under your kitchen sink, the crack between the sink cabinet and the wall, etcetera.

Nope did a test for that too

I even have pictures of me spitting for the test with an index card taped to my hat to not forget to spit, first thing in the morning I think...(I really can't remember the joke about the note on the hat but it's recorded for history nonetheless). Yikes, it's a lovely picture I'll have to show it to you someday. I can't remember what in the heck the test was all about but I think it was something about whether the spit sank or floated. And I did not have Candida. I mean this was a while back when all this first started but I would think the results would still be the same, since nothing has gotten worse but some improvement...thank God I can walk again.

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer


I'm not gonna sit here and say that Candida is a source for any of your woes, but if you're serious about checking that out then don't put any credence in the spit test, please. Makes me wonder how many engage a spit test for pregnancy. If you're serious you will stool test, urine test, blood test, or better yet all three. There are two reasons for this.

1) One can be so riddled with Candida in his/her gut that it's migrated to and is shutting down liver function and not have it be expressly evident in the mouth.

2) If you are particularly sensitive to fungus you could very well suffer from a "normal" range of presence where the guy sitting next to you might not.

The spit test is like a sobriety field test. A B C D E F G, H I J K LeMoNyellOwP, Q R S... The police officer is just keeping you busy while his/her partner is digging in the trunk for the breathalyzer.

I have no idea if checking for Candida is a worthy endeavor for you or not. I'm just telling you what I think of the spit test.

Figuring out stuff like this can be endlessly frustrating and takes endless diligence. I've known people whose similar symptomatic suffering went away upon the removal of the carpeting from the floors of their home. True story. They were the sensitive type like you.

Okay I hear ya then

I will get with Mom on this. You better be careful there, you're kinda starting to sound like "Doctor Professor"...Medulla Suction Cupgnosis Dootella Fretalinni Fromage Campalone Howdydoo? :) Thank you, you're an angel.

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer

Regarding mold... I have no

Regarding mold... I have no answers. Sorry :( But gummi bears -- be forewarned -- the sugar free variety can be disastrous! ;-)


After all, laughter can be a good medicine... as long as you're digestive tract isn't ready to explode.

That was great

hahahahaa :) "I'm pretty sure I lost a kidney"

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer

So young.

I will try.

If I was the young girl, I believe I would understand that my parents are doing what they can. A person can feel that compassion and sincerity of another. That is thee bind where the inner peace is accepted at its root.

The feeling of being loved; touched,and held are significant intangibles. I have learned the importance of that. I will hold other loved ones longer than just a hug. Being touched is truly compassionate.


Try the heavy syrup off peaches, it works to keep crackers and water down. Hope it helps. Hugs.

Please check this thread below for my comments on B-12 deficiency. I would think she definitely needs B-12 and magnesium.

Freedom is not: doing everything you want to.
Freedom is: not having to do what you don't want to do.
~ Joyce Meyer

B 12 deficiency is linked to

B 12 deficiency is linked to MTHFR. So is MS. I have mthfr. That is why I have miscarriages. Lots of woman who have multiple miscarriages have mthfr and don't know it.

deacon's picture

I remember

You talking about that before,and was so ashamed at some of the responses
you received from members here.
Thanks again,you ladies here are the best,but you make me want to cry

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

Everyone here has a story to

Everyone here has a story to be told.

Don't cry for me. I've done enough of that. I have a child and he's awesome! He's my miracle. He's growing up now and soon I have to watch him go on to bigger things. It's bitter sweet.

Don't start the meds. There's

Don't start the meds. There's a lot of natural therapies out there. Go find a homeopathic practitioner. Or do your own research.

I met a lady about a month ago who took herself off the ms meds and said she hasn't felt so good in years. She's doing other things. Wish I knew more. I'm sure there's information on the net.

Disclaimer. I'm not a doctor.

deacon's picture

Thank you

I have been looking into alt meds,but I admit,the homeopathic aspect i never saw or knew.
I don't believe in taking man made meds,but so far,I am totally lost and treading in unknown territory.I don't get so stressed that I can't function,but it is getting really hard these days to form a coherent thought,and then try to get it down so others can understand what I typed.
Thank you very much for your words and directions

If we deny truth before your very eyes,then the rest of what we have to say,is of little consequence

Also. Have her tested for

Also. Have her tested for MTHFR. I have this. Its been linked to many diseases.

There may or may not be

There may or may not be something to cure her but there are lots of things to help with the symptoms. Start by treating some of the bad symptoms like the nausea. It may take a little time but it's a good place to start. Often times if you can find something to treat some of the symptoms...your daughters morale will start to change and she may be happier. Finding joy in ones life is powerful healing.