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My husband just turned 63 but his health is not good. He suffered a stroke a year ago and since then has been diagnosed with dementia. We have discovered that the first doctor missed the signs so he has been dealing with this for about 5 years now. Once the stoke happened everything seemed to hit all at once. He entered assisted living in August of 2018. In the past few weeks his body is failing him and he is no longer able to stand. He is moved with a lift from wheelchair to bed and back to bed. He still knows me but struggles to carry on conversations. He usually only answers if you ask a question. He is comfortable and the staff loves him. They take good care of him. When I talk to family and friends, they seem to be in denial of the serious nature. I get comments like "do you let him drink from aluminum cans? have you tried coconut oil? are you making him work out? I know they are well intentioned but I get frustrated and do not know how to respond.

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I would softly say. “ till you walk in my shoes, you cannot begin to understand what is happening. I hope you never go down this road, but if you do...I truly hope that people around you do not constantly offer advice which does not take into account the reality of what is actually happening,”.

Yes, a lifetime of drinking from aluminum cans might have some impact on mental health (the jury is still out on that one), coconut oil does seem to help to prevent some dementia is some circumstances...but, it is pretty useless information when dealing with the dementia and stroke which is the reality now.

People think they are telling you a great newsflash. They are disconnected from the reality you are dealing with. Sometimes I think people offer this sort of useless advice because they cannot think of anything else to say.
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Isthisrealyreal Jun 2019
Coconut oil can also be very detrimental to some, I am incredibly allergic and someone feeding me coconut oil would speed my demise and I would be miserable the entire trip.

I get that you have some knowledge of the benefits, all the medium chain thingy, do you know of a substitution that gives the same benefit? I am asking a serious question, not being funny.
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My father had vascular dementia and I would occasionally get remarks like this. My standard response became "While that might have helped earlier, his brain is so damaged now we're just trying to maintain what still works and keep him comfortable. He would probably love to have you visit him..." and switch to details about how to schedule a visit. That conversation would often lead to how busy the questioner's life was and I could usually find a tangent to turn the conversation away from Dad and his treatment regiment.
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ArtistDaughter Jun 2019
Excellent.
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I am sorry that your husband is so ill and failing rapidly. Such a double edged sword. My grandma had a series of small strokes that took her from perfectly fine Friday to full blown dementia on Monday. It was traumatic to the family and of course they continued so the dementia got worse rapidly. I am sorry that you and your husband are going through this awful diagnosis.

I would tell them that I doubt they are grasping the seriousness of the situation and coconut oil and exercise are not options.

You can also be very honest and say that you know they are trying to help and you appreciate them for their love, but they are saying put a bandage on the hole in the damn. It isn't even an option.

If you are a believer, tell them that they should pray for you both, that is the best thing they can do for the situation.

It is hard to gain reality on a situation that has you remembering a vital, energetic person who has become incapacitated since you have seen them. Our brains can't catch up until we see the new reality for ourselves.

Hugs, it is a difficult journey.
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Sarcasm. It's the only way. Plus, the really dimmest people won't notice you're insulting them so no harm done.

Oh my goodness! We switched to ALL aluminium, for everything. Pots, pans, plates, cups. You mean that was wrong?! I had no idea, how will I ever forgive myself...

Putting the minor irritations aside: your husband's dementia sounds most unusual and terribly aggressive, and I'm so sorry that this is happening to you both. Please do make the most of this and other forums. I think I can safely promise you that nobody will suggest any quick 'n' easy cures.
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try telling them that you will check out the suggestion online to get the exact instruction.
Coconut oil can help with the control of diabetes but nothing will reverse it. Just because the BG numbers go down does not mean it is reversed or cured.
Most of the advise is like telling some one to eat the belly button of a naval orange. Or tear the doughnut in half and eat only the hole.
Or tell them you have tried that it did not work for your LO. Suggest it might be a different little part of the brain affected and you will keep searching for holistic treatments.
I was told by some one to eat whole grains for my diabetes. Surprise, I had been eating that for years and still I became a type 2 diabetic.
Best I can suggest is to fake it and say something like "Sounds intersting I will check it out."
Good luck and remember to count to ten.
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Countrymouse Jun 2019
Not the hole! Don't eat the hole! Holes are poisonous, every one knows that! (or that's what I told my kids, heh heh heh...)
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“How interesting”- big smile -change the subject.

Your job while caring for your LO does not include listening to nonsense.
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Say thank you and walk away. Or say when the Alzheimers Association recommends these treatments, I will be the first in line.
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"Thank you for your suggestion. We've tried everything."

If you relent and tell some well-meaning advice-giver that you will try their folk remedy, the next time you see them they will want to know all about it. Shut them down when someone gives unsolicited advice so you won't have to continue dealing with it ("now, did you do 2 drops or 3 because when I used coconut oil with my mother we started at 2 drops but found that 3 was much more effective, however we had to give it in the morning because....") Ugh. Unsolicited advice is the worst.
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I don't think Coconut oil is a cure. I think its just found to help with the cognitive part.

People who have not done actual care are clueless. I learned a lot caring for my Mom and she was basically easy. A caregiver I am not.

Stop explaining. They will never get it. If they ask, just say he is comfortable and happy. When they start theirvsuggestions, just say "Sorry, but not sure if I can explain any better than I have. His illness is severe and I really need ur support than ur suggestions."
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They should visit him and see his condition before offering advice on such things as coconut oil, exercise, or drinking from aluminum. And I say this as a believer in holistic care. We get worn down with the stress and worry and what we need is support. It's better to somehow let people know they are not being helpful than to thank them for the advice. I wonder if people just have a hard time accepting that some things cannot be changed.
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I felt the same way.
I just would tell people if there was a cure I would not provide it for him because even with a cure NOTHING would reverse the damage that has been done.
You could even ask these people if they eat or drink products from aluminum.
Do they always use coconut oil
Do they use deodorant (most contain aluminum)
But I would not waste the effort it takes to try to discuss this. A simple .."Thanks for your support" and walk away.
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isthisreal....

well...there is MCT oil. It is the extract and purification of only the “good” part of the oil. It is literally only the medium chain triglyceride. I do not know if this would still set off the allergic reaction. What part of coconut oil do you react to?
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My DH is also 63 FTD with Parkinisms
he was also incorrectly diagnosed for years. My in-laws esp. MIL have been openly hostile the whole time. Apparently this is all my fault. Somehow I made this happen and I am just trying to get rid of him. I have been told to try marijuana, I’m not trying hard enough to find better doctors and that he is my husband and I should be 100% taking care of him

you just have to remove these sorts of people from your life. They only make it harder to deal with the situation and offer no help
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vlibowsky Jun 2019
I know exactly what you are going through, and I am so sorry for your lack of compassion from family members.  I took a work promotion that moved us to a new city and for that I am blamed for his whole illness.  They act as if we would not have moved this would not have happened.  I get zero support from his family members.  They do not see to understand the struggles that I go through, even though he is in assisted living I still care for him.  Stay strong, and thank you for your words!
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It is frustrating. When someone makes a quick suggestion like it's a cure all,( but, they normally don't,) I say, that there are many home remedies, medications for some types of diseases like Alzheimers, (not Vascular Dementia) and theories about helping people with dementia, but, there is no real current cure for permanent brain damage. Sometimes, I ask them what materials they have read and what doctors they have discussed it with. I say this in a nice way of course. lol
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Memorise a spiel. ‘Thanks, but I’m not sure that it will work at this point. Perhaps you could do a net search on it and let me know the answers’. And yes, then switch to suggestions for a visit.
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When you get unhelpful or weird advice, just smile and say, "Thank you for your feedback. I will give it some thought." Then walk away or change the subject. This works well for me. You don't owe anyone details or a substantive debate.
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Invite them, politely, to go with you a few times when you spend time with your Hubby. Let them see first hand, the situation. They'll soon find out that this terrible disease is degenerative & usually genetic. There is some "truth" to coconut oil and essential oils Only to the extent if they make them feel at ease or it comforts them. Those won't cure it and they'll see it. They will also see how much stronger you are then what they are giving you credit for. It might be just the thing that will get them to offer to step up and help you instead of just "advising" from the couch. GOD Bless
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vlibowsky Jun 2019
I like this idea!  thank you
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Thank them politely and frequently. Tell the well-meaning folks that you and the staff have a routine that works well for your spouse. Suggest things that they could do to help: visit him, bring him things he enjoys, go on enjoyable outings with you... Those would bring more comfort in the life that is your reality than the one they are desperate to recreate.
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Then don't. Just let them think what they want and keep taking care of your loved one. You'll be alright.
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I had the same problem when I had Breast Cancer that had Metastasized. I ended up thanking them for their concern, and I was looking into it. One of the very nice, well meaning, ladies in my church even brought over a juicer to me and then would quiz me if I had used it. I would just lie and thank her for thoughtfulness and I was taking care of it. I did, I put it in a safe place in the cupboard. At that time, carrot juice was the miracle cure. I hate carrot juice. I love carrots raw, cooked, but I hate carrot juice. As soon as someone else got sick I took it over there.
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Here is what you do with those well-intentioned suggestions - If it seems like pure nonsense to you, then don't check it out as it isn't worth your time nor effort. If you think that any tip may have validity, you can fact check it yourself. I use Snopes.com or TruthorFiction.com as two fact-checking sites that are trustworthy. I've had so many people tell me nothing but "tall tales" and I know right away that it's pure hogwash.
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People do that with every illnesses. Imo the internet has made it worse since everyone now assumes they have an online medical degree 😉. I have an relatively unknown illness but still get lots of ridiculous advice. Now I just say, “ oh thanks, I’ve heard of that” and change the subject. At best they are trying to be helpful, at worst they are just fools so either way, basically acknowledge then ignore the advice.
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I was so frustrated once when someone kept insisting my mother needed some silly miracle supplement, I said I had heard it also worked for balding. To a bald guy. With an innocent expression on my face.
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wearynow Jun 2019
too funny...
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Well, it may not help in this situation, but once when I had our kids out during school hours a woman confronted me rather belligerently asking why my children weren't in school. I couldn't think of anything to say at the time, but later my husband told me I should have said, "We're on a field trip learning to mind our own business." :-)
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Nothing like having a super serious medical situation minimized by well-meaning people wondering if "aluminum cans" have created the problem. And, even if they HAD, how would the comment be helpful? Could it be that a stroke caused the man's issues and it's not something a simple dose of the latest Fad Supplement or Exercise Regimen can cure? Sigh. I truly think people get SO frightened when they hear about serious medical issues striking a friend or loved one that they get tongue tied and start to babble. I'm not sure how you should respond to the super stupid suggestions, except to say you'll make a note of it for the doctor.

Best of luck to you, dear woman.
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I use some of oils for treatment, and like the effect that they have on organism. It's still a personal case of course.
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“How interesting!” -THEN- CHANGE SUBJECT!
Unsolicited advice deserves a MAXIMUM two word or less response.
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I have stage 4 chronic kidney disease and people tell me drink cranberry juice it will cure UTI’s. I asked my nephrologist. He said if I like cranberry juice have,but I’d still have stage 4 kidney disease.
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