My husband has a godson/cousin who is a family physician with interests in alternative medicine & autism. I pretty much had lost contact with this whole branch of his family during the last 6-plus years of hubby's dementia. Finally emailed/brought him up to date & he was in the area on business & visited last weekend. Generally a pleasant visit but he said some things that upset me. He wanted to know if we'd tested hubby for heavy metals (he has been to SO many neurologists, I can't even remember!, wanted to know if he still had amalgam fillings (Dr. Cousin had had all his removed and thinks I should have mine removed), and wanted to know why we didn't get thimerosal-free flu shots. Then coconut oil was mentioned, & hubby's vegetarianism (up until his dementia diagnosis--I think he forgot) was criticised. I felt very defensive: He may be an MD but (a) I pretty much don't go for the whole "magic supplement" stuff (and I've read extensively about it), (b) during the past 25 years I've learned more than I ever thought I would have to know about medicine with hubby's various medical problems, mystery diagnoses & every test you can imagine (including probably some heavy metals--I can't remember all of it) & his progressive dementia, and I nearly killed myself with caregiving & worry & trying to "fix" him myself until a crisis forced me to get help with caregiving 6 years ago, and it's only in the past year or so that I am finally beginning to see the ascension of acceptance over depression in my emotional state. Now to have someone whose medical opinions I respect (or, I thought I did) question whether I'd done all I could to prevent this was like getting knifed in the gut! I didn't lose my temper, though...Later, the three of us were sitting around at one point, hubby was intermittently participating in the conversation (of course, we address him & interact with him even though for the past 2 years or so very little of what he says is comprehensible), & would alternately participate & then roll his wheelchair away to sit by himself. At one point hubby called out, while I was speaking with Dr. Cousin, and Dr. Cousin interpreted it as hubby wanting us to come in to see something on the TV (which I know that hubby doesn't understand AT ALL) which he was watching with one of his caregivers. Dr. Cousin later said to me "Do you realize that you tune him out?" Oh my god. The hours and days and weeks and years I spent trying to figure out what he was saying...I think I'm finally to the point where most of the time I know that trying to figure it out just exhausts me & I've learned to "converse" with him for relatively brief periods without wearing myself out...I held my temper but since Dr. Cousin left I've been feeling once again as if I might have truly failed my hubby--and that what's happened to him is my fault. It was a shock: this is the first time ANYBODY (besides me!) has criticized ANYthing I've been doing, other than exhorting me to take care of myself and to accept help from others! I tell myself that it's just another MD who can't help himself, but I'm still shaken by this. Any comments would be very much appreciated.
But the issue of metal and other toxic compound effect on health is real. Lead has been proven to affect young brains, and it's not the only substance. I think your cousin was concerned that some presence or accumulation of metals might have affected your husband. And given the fact that the causes of dementia are still being explored, I don't think we can dismiss the contamination of the food supply by nonedible substances.
There are many avenues of food contamination, ranging from the use of pesticides on soil and crops to the addition of food coloring which years ago was linked to carcinogens. There are the issues of BPA in plastics and in the lining of cans.
Even if you don't eat any processed foods, you have to be aware of the toxins that are used on commercially grown foods. Those beautiful red delicious apples don't get that way without some chemical help to keep away the pests.
Perhaps we'll never really know how many toxins are in the food supply, and perhaps we'll never know how much damage they've done to the human body. The ramifications of toxins in the food supply, as well as in cosmetics, are still being discovered.
I think your cousin was just trying to pursue different avenues in an attempt to help both you and your husband with your husband's medical issues.
I also think that you're worn down from the exhaustion of so many years of caregiving and felt criticized, when that wasn't the intent, which I think was more to be helpful.
The comment on "tuning out" your husband was perhaps made just as a medical and relative observation. It's often hard to be objective about our own behavior. And it's easy to become defensive.
It's understandable that these conversations upset you. The sensitivity to criticism can be higher when someone has spent years taking care of and worrying about the care of a loved one. You're worn out yourself, then interpret that someone thinks there are things that either could have been done differently, or that your behavior isn't appropriate, or other issues.
It's natural to be defensive and resentful.
I wouldn't take this as criticism, but rather as friendly inquiries, suggestions, and an attempt to help. Do something you really enjoy, something relaxing, then rethink the whole situation and you might feel differently.
People who waltz in and think they know all the answers when they don't even really know all the questions are to be avoided, no matter what degrees they hold.
Shame on him.
And his comment about tuning your husband out is totally uncalled for. It's funny how bystanders can comment on caregivers without having lived it 24/7. Once they did, they'd change their tune.
So just chalk it up to a well-meaning doctor who doesn't know what he's talking about. {{{{{{Hugs}}}}}}}}}
But to come into a private home of someone he hasn't even been in touch with for years and to start expounding his beliefs as if he has any say in how your husband is being treated is absolutely unacceptable. Sure, he probably meant well. Most people do. But that is no excuse for his hurtful and unwarranted behavior.
This hits my hot button every time I see it. I have a relative who is a nice person and interesting IF you can keep him off his favorite soapbox of how everyone in the world should be eating. I don't care a bit what he chooses for his own diet, but, hey buddy, we don't share the same beliefs and world outlook.
People who want to pray for me or tell me that they know god's plan for me or my late husband or my demented mother DRIVE ME NUTS! Believe what you want. Just respect my right to do the same.
And all of these people mean well. When I'm in a good mood I can take (a little of) their advice in the spirit in which it is intended. But mostly it makes me angry.
I would be SO pissed at the visiting cousin I doubt I could have been polite for the entire visit. He can take his friendly inquires, suggestions, and attempts to help and stick them someplace very dark.
I don't mind hearing about other people's beliefs in a context of equal discussion. I do mind -- terribly -- when people start telling me I need to act according to their beliefs.
Whew! Thanks for letting me vent. :) As I said, this is very much a hot button for me.
They usually have no clue. We are in the trenches and it can sting.
I have learned to just smile sweetly when offered unwanted
advice and say, "Great idea, I'll ask the doctor." Then change
the subject.
It is a problem that good hard evidence beyond anecdotal is hard to find. I've relied somewhat on studies reported in a newsletter from
Environmental Health Perspectives, a peer-reviewed journal of research and news published with support from the National Institute of Environmental Health Sciences (NIEHS), National Institutes of Health, U.S. Department of Health and Human Services.
One of the latest was the effect of pollutants on telomeres. If you've done any research on telomeres, you can see how this would be an important issue.
I think you're composed, intelligent and experienced enough to work out a balance of listening to your cousin's suggestions and diverting the discussion though. I don't disagree that unwanted, questionable advice isn't helpful, but just discard that aspect!
Given that he shared some personal issues with you, it may be that he, even as a doctor, also needs someone to discuss his own issues with.
Thank you for responding again and for clarifying your thoughts, as well as the kind compliments/