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Old 03-05-2012, 09:47 PM   #1
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How do you deal with all the friends with ideas and cures?

Not sure if anyone has the same problem but, I have had to fend off hubby's friends, my friends, and friends of friends that seem to find the need to look up information, homeopathic cures, studies, etc...and call me all the time to pressure me to try them on my husband. Some of his friends even came and took him out to eat and brought him home totally drunk a week ago. He has not been the same since. These same friends seem to think he should be having a good time (aka 'drinking') while he can. Other friends call our home and my cell phone to offer advice and homeopathic doctors and cures and are very persistent about it. I find myself on the phone a lot just fending off all these folks. It's getting to the point where I've had to point out to some of them that I'm a college graduate, who knows how to use the internet, how to read, and have a higher than average IQ and should be given the opportunity to make the decisions that I think would be right for us but, some folks are just bent on helping. What do you do in these situations?

 
Old 03-05-2012, 10:41 PM   #2
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Re: How do you deal with all the friends with ideas and cures?

I do exactly what you said... I explain to them that I am an intelligent adult who is capable of making logical and rational decisions. Thank them for the thought and go on your way. My favorite comment is.... "If there was a cure for Alzheimer's, the only incurable untreatable disease in the 10 ten deadly diseases, then it would not be on the last page of the internet but on a special news bulletin on every TV in the country!" If they are being overbearing and persistent then you have the right to be just as determined in your point of view. Perhaps they are trying to "help" but they are not helping . Tell them if they want to help then they can mow your grass or bring you supper

As for taking hubby out and getting him drunk... NO! That is all you have to say. NO! If they do it then assure them that hubby will not go out with them again. Getting drunk is absolutely the wrong thing to do with someone that is cognitively impaired. Again, tell them you know they are trying to help but how about coming over and painting the porch or repairing the fence.

Sometimes it is difficult to fend off those that want to "help" inappropriately. It is up to you to be sufficiently forceful to let them know what you expect. If you do not think it is in the best interest of hubby or yourself, then tell them so. If they insist then thank them for the thought and hang up. Know that you are in control.. not them Most are just desperately trying to find a way that the truth will not be reality because they are in denial about this disease. But that doesn't mean that you have to deal with their emotional distress. You have enough of your own. So stand up and say what you mean and mean what you say!

Love, deb

 
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Old 03-06-2012, 04:13 AM   #3
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Re: How do you deal with all the friends with ideas and cures?

I was getting ready to reply to this post when I read debs answer, brilliant answer, exactly the way to handle it.
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Old 03-06-2012, 05:59 AM   #4
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Re: How do you deal with all the friends with ideas and cures?

Caller ID is your best friend! Or the old - hello? hello? My battery is going dead. Call you later....

 
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Old 03-06-2012, 08:08 AM   #5
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Re: How do you deal with all the friends with ideas and cures?

One thing for sure is the friends have no idea how your hubby behaves everyday day and night. How would they know what your hubby should do? They have no right to barge in like this because you are his wife. Does not matter what college degree you have, they just thought they know more and want to share with you. Not everyone would have the same info. They meant well but they don't understand this disease.
My FIL's lady friend told my husband once that my FIL should vote in 2008. She didn't realize that my FIL is not her party and that he no longer understands tv news. He has no way to vote! Friends have no idea because they are not there 24/7.

If you say no, they may disappear but at least you get to have peace. Friends do this kind of thing and it is natural. Of course it is also bothersome.
No, they are not saying you are not intelligent, they just think they found some good idea and want to put it on you. Just say no.

Take care,
Nina

Last edited by Administrator; 03-07-2012 at 11:07 AM.

 
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Old 03-06-2012, 05:01 PM   #6
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Re: How do you deal with all the friends with ideas and cures?

I guess on the bright side, they care enough to think they can help, I do like the suggestion of asking them to come over and mow the lawn or paint the fence, even hubbie might enjoy the time with his buds while doing something like that. It is hard to turn well wishers away but you are the one in control. My heart goes out to you,

hugs judy.

 
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Old 03-06-2012, 07:48 PM   #7
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Re: How do you deal with all the friends with ideas and cures?

well I do what you say about researching stuff, or if I come across something in my readings that I think will help someone I will pass that information on. It is up to the recipeient if they want to act on it. Why not listen to what they're suggesting before you say no.....you never know if some of their info is valuable.

 
Old 03-06-2012, 08:20 PM   #8
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Re: How do you deal with all the friends with ideas and cures?

Rose, I have had a grandmother, a parent, and various other relative with Alzheimer's and a father with Vascular Dementia. I have worked in long term care. I have spent the last 40 years immersed in this disease. I still research and learn and try to keep up on the latest developments. But I have learned through practical experience to put things in perspective.

After Mom realized she was getting Alzheimer's... I watched her buy everything on the internet that claimed to be a cure or improve symptoms. She bought into everything she read and spent lots of money. For her efforts she is in a locked Alzheimer's unit. She has no other medical problem. She is exceptionally healthy except for her deteriorating brain which she could not stop with anything touted on the internet.

This is a hopeless disease. It is fatal 100% of the time and to date there is no cure and there is no treatment that will reverse or even improve the symptoms. Scientist are not even sure of all the mechanism that causes the disease. That is a difficult concept to wrap your mind around. It is the number 5 cause of death in the US.... even above Diabetes. Deaths due to Alzheimer's is u p 66% in the last 8 years while all of the other top 5 causes of death have decreased.

Armed with this reality don't you think that a cure for this disease would be a special bulletin on every network, on the front page of every newspaper, and in every magazine printed? Would you have to look on the back pages of the internet to discover this cure?

I have probably had 50 people tell me to give Mom coconut oil. I have investigated it. I also know those who have tried the Axona which is the medical food modeled after the coconut oil and was never proven effective. So far I have not found anybody that will say the Axona had any beneficial effect. So when person number 51 comes along why should I listen? I have also been told not to use antiperspirant deodorant with aluminum. This was disprove years ago along with the aluminum pot theory. Curry is because Indians usually don't have Alzheimer's but there are many other factors besides the fact that they eat a lot of curry that matters. It goes on and on and was wrapped up in all those "cure" bottles in Mom's house when we cleaned it out.

The first 10 times somebody comes running to you with a cure you listen. You might even try a few. But after a while you just stop listening. I don't fault these people because they truly believe... want to believe... that there is something that can be done. As I said it is a hard idea to wrap your head around that this disease is hopeless. But when you are on the back side of this disease you realize it is just "false hope in a bottle". It is an emotional roller coaster to get your hopes up and have them dashed over and over. Eventually you become a scenic. You are exhausted from the constant emotional drain of this disease. You have resigned to the reality of this disease. You don't need hope... what you need is a helping hand and a good night's sleep. That is why I say it is much better to cook supper for a care giver, mow the grass, or take the patient for an afternoon in the park so the care giver can get a day off. As a care giver... Just give me a break and not a possibility of false hope

Love, deb

Last edited by Gabriel; 03-06-2012 at 08:24 PM.

 
Old 03-07-2012, 05:47 AM   #9
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Re: How do you deal with all the friends with ideas and cures?

If a person calls to helpfully recommend a quack cure, just say "thanks for the info. Very interesting." However, if they call to tell you you are doing everything wrong, and it is your fault that the loved one is forgetting things, being irrational etc, that is an attack on you. I wish I had had caller ID when I lived with my Mom for 5 years and she got Dementia. The same person who told me if I moved out my Mom would miraculously be able to do things for herself again, as she had done before I moved in (seemed logical to her) was the one who "could not come" to help in any way. Just give destructive criticism. In this disease you very soon learn who your real friends are, and often strangers are better than family!

Love,

Martha

 
Old 03-07-2012, 07:42 AM   #10
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Re: How do you deal with all the friends with ideas and cures?

When people come to you for these "cures", just say no thank you. The other thing that bugs me is other people can try to tell you how to treat your spouse or parent. They don't know anything about the relationship so how can they judge the family?
I am sure they mean well, but I guess that is why they disappear because they have nothing else to offer. Since they are not caregivers, they feel uncomfortable if they cannot offer any help.

Nina

 
Old 03-07-2012, 07:57 AM   #11
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Re: How do you deal with all the friends with ideas and cures?

My FIL did try to get vitamin for his memory loss. He wanted to try Q10 and some vitamins which he ordered by phone but never finished taking. He thought he knew more about it as a former doctor in his home country. Gradually he lost and forgot it all. There were 2 or 3 years when he tried to get all the vitamins or pills to stop memory loss. This includes aricept and exelon/namenda (he was the one that asked for namenda and exelon since aricept gave him side effects.)

I can understand that he was desperate to stop his memory loss. In the end, he forgot about it all. No one really came to us to offer "cures" since he claimed he knew it all.

There is no cure for Alzheimer's. Even anti-cancer food has better chance. Nutrition has more scientific basis. I believe in healthier food. There are many people who are talking about the possible cause and cure. e.g., FDA recently says that statin for lower cholestrol actually will cause dementia. Some time ago, someone also said statin helps. We just have to take what we think makes sense and don't be bothered by the talks.
Stick to the facts. It sounds like coconut helps in the beginning. You know, my belief is that anything in early stage may look like it works. But when one goes into moderate/severe stage, it is not going to work. I believe we need to try to get cures and etc., but we should not become superstitious with that.

Nina

Last edited by ninamarc; 03-07-2012 at 04:24 PM.

 
Old 03-07-2012, 02:56 PM   #12
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Re: How do you deal with all the friends with ideas and cures?

On the subject of Statin's... it was recently announced that a new warning label was being included that Statins could cause a raise in blood sugar levels that could lead to a diagnosis of Type 2 Diabetes and also for memory loss and confusion. This is a side effect and not something that happens in every case... hopefully. Yet, we all need to be aware. I was one of those that experienced the "memory loss and confusion". It was more than just memory loss but a cognitive decline that affected other areas of cognition as well. The good thing... it was completely reversed when I stopped taking the medication. But I only took the medication for a short time and I wonder about those that take it for years and years. Now I wonder because during that time was the first time I was told I had elevated sugar levels... and now they are back to normal. The cognition side effect has been known for over 10 years... and I wonder why the warning was issued just after the medication went generic which resulted in lower prices and less profit for the drug company?

Statins are one of the most prescribed medications ever. Diabetes and Cognition related diseases are on the increase... I'm not connecting any dots but it does make you go hummm.

Love, deb

 
Old 03-07-2012, 03:52 PM   #13
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Re: How do you deal with all the friends with ideas and cures?

Mom took a statin drug after a heart failure episonde, although her cholesterol was normal. 6 months later she had dementia. The doctor said ''no connection" but we took her off the drug. Unfortunately it was already too late. The day before she started that drug she was thinking clear as a bell ... a couple of months later, that blank stare. I knew it was statin related but had no proof --- until now. Yes -- it was a best seller, a huge money maker. Now, not so much. Now they can admit what it did to my Mom and millions of others. I would never take a single statin pill no matter what.

Love,

Martha

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Old 03-07-2012, 05:53 PM   #14
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Re: How do you deal with all the friends with ideas and cures?

"That is why I say it is much better to cook supper for a care giver, mow the grass, or take the patient for an afternoon in the park so the care giver can get a day off. As a care giver... Just give me a break and not a possibility of false hope "
as DEB said...

How many days would i have been better able to face the all the responsibilities, the work load, the worry, the traveling and everything else if one of my moms friends came and sat or visited her in thehospital.Yes I know it was not their job, but it would have been better than any of those quake cures foand would have benifited both of us..

hugs judy.

Last edited by jagsmu; 03-07-2012 at 05:56 PM.

 
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Old 03-07-2012, 07:06 PM   #15
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Re: How do you deal with all the friends with ideas and cures?

Thank you Jags I speak from my heart and my experience and know what would help me. I can't be that much different from all the other exhausted overextended care givers out there

Martha... I have been through my own trip into the world of cognitive impairment because of Statin. Maybe that is why I understand the concept of dementia so well. I literally let out a whoop of glee when I first hear the news of the additional warnings. I was lucky enough to have a doctor that was aware of these little known side effect... and knew me well enough to know that what I was telling her was fact and not fiction. I was also lucky enough to have my cognition return. On my chart, in big red letters on the front of the folder, it says NO STATINS! I will never take another one!

Love, deb

 
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