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rapmarks

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my husband is in middle stages of Alzheimer’s. He has been on the max amount of medication for five years and it took three years before that for a doctor to take my concerns seriously.
People will say to me have you taken him to a doctor. or they say you know there is medication for that, you need to get him on it.
We are educated people who tried to stay healthy, and my husband’s mother and grandmother both suffered from this disease.
I am starting to get offended by these remarks.
My friend says they are trying to be helpful, I say helpful is perhaps chatting with him, offering to give him a ride to golf, or just being nice. Most men act like its contagious.
Does anyone think I would ignore his deterioration and just blissfully go on.
I need some responses to these people, and clever Tuggers always know the answer.
 

Passepartout

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It really isn't a snappy comeback, but the most despised phrase to people facing disability- their own, or a loved one's is "You Should. . . ." Or "Have you. . . . ." Like you haven't explored all the possibilities. I like your saying to them, "Y'know, if you really want to be helpful, come over and visit. Or bring over a sandwich and cup of soup." It gets lonely with just you and the disabled one. I know. We need some 'alone' time to follow our own interests. If you are just the caregiver, you run out of things to talk about. You both need some stimulus.

Sorry I can't come up with a comeback that doesn't come across as ungrateful or just plain mean.

Jim
 
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1st Class

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Seriously, I had very dear friends in a similar situation. Just remember that you're doing the best you can with the knowledge and resources you have. Your opinion is the only one that matters, so don't take it personally.

Consider the source. Is the advice given out of genuine concern or need to feel superior? Close friend or acquaintance?

Is it fact or opinion? Does the speaker have personal experience with it? Is there any harm in looking into it, or have you heard this before and checked it out?

Not all unsolicited advice is bad. Case in point -- I was talking to a friend of a friend about some symptoms I had and she made a suggestion based on her own personal experience. I thanked her and told her I would check it out. Well, it turns out that she was right, and the med was indeed causing my symptoms so mystery solved!

So you could just say "You may be right." or "I'll consider that." or if you really don't want to deal with them, "I think I've got this, but if I need advice I'll be sure to ask you!" LOL
 

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DeniseM

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If you are sharing your situation with friends and family, it's only natural for them to try to help - however misguided they may be. I totally understand that you need to talk about it, but maybe it would be better to talk to a counselor, or pastor, or a support group. I have never been in an Alzheimers support group, but I have been in other support groups and it was extremely supportive and helpful and I made friends who were in the same situation. Based on your posts, it doesn't sound like you have much support, and this might really make a difference. Another suggestion is having some respite care for your husband - even one afternoon a week to get out and do things with girl friends or on your own could make a big difference.
 

easyrider

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When people tell me what I should do, and I didn't ask them, I usually just say ok the first time , whatever, on the second time and shut up if they still keep it up. Most people just want to help so it usually doesn't make it to shut up. With a few people I know it always end at shut up because they are naturally obnoxiously opinionated and will go on and on if you let them.

Bill
 

pedro47

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I feel people are trying to help. But unless they are medical doctors or certified licensed counselors they need to kept their advice to themselves and their mouth closed.IMHO.
 

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Anytime i get unsolicited advice, comments, etc. about anything I try to listen attentively, act appreciative, digest what is said, research it if warranted, trash it or just plain ignore it. You never know what useful information you might pick up...

George
 

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Not to steal your thread....but I found when I was diagnosed with cancer people would offer up weird / unhelpful advice and comments....."you should have eaten more blueberries" or "if only you were a vegetarian"...…"my brother's friend's wife got vitamin B shots and it cured her" have you gotten into any of those "studies; "you know its a conspiracy...the government really has the cure" - I didn't have a snappy come back and I don't have any great advice except that sometimes you need to close in your group of support to those that truly make you feel better. I'm sorry for what you and your family are experiencing.
 

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I'm sorry you're going through this with your DH. Honestly, sometimes I think people just don't know what to say so they grasp at anything they can think of. Some of the suggestions upthread to deflect these remarks are good.

Wishing you the best Puamavista. Cancer survivor here, too.
 

Panina

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A simple “Thank you for your concern. I have made sure he has the best doctors to deal with this” should stop the advice from the person giving the advice. You can add “our friends who are kind and spend time with him seems to be the best medicine and helps him the most”.
 

rapmarks

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Panina great response.
Part of the worst of the situation is is that there is no conversation anymore.

Yes when I had cancer a friend sends me an email that I caused my cancer by drinking out of a plastic water bottle. Maybe a did, but the biopsy showed something else.

I don’t mind advice, like someone saying studies show CBC oil might help. I object to acting like I haven’t done anything.

When we went through airport security yesterday, my husband put the tv remote in the tray with his wallet. The security person said, not letting the kids watch your tv huh. Just hope I get that remote back north again.
 

silentg

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It’s ok to offer advice, but everyone who has cared for a loved one knows that just listening to the caregiver vent and a visit to perk up is all they want.
Be sure to include your husband in visits, bring photos, put on old TV reruns, they love this.
Sorry you are dealing with this. There are caregiver support groups, check with your council on aging or senior center. Talking with others dealing with this can be helpful.
Silentg
 

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Yes to panina’s response. Nips it in the bid and give an opening/polite hints for visit. And hugs to you. Elaine
 

WinniWoman

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I think the above posters have given good advice. Some people just don't know what to say and their unsolicited advice comes out of their mouths the wrong way. They want to be helpful and don't realize they are being accusatory. I don't blame you for feeling the way you do. if I were you I would find this annoying and frustrating.

Best to just bite your tongue and say "Thank you for your concern. We are doing everything we can." Leave it at that.
 

rapmarks

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If you are sharing your situation with friends and family, it's only natural for them to try to help - however misguided they may be. I totally understand that you need to talk about it, but maybe it would be better to talk to a counselor, or pastor, or a support group. I have never been in an Alzheimers support group, but I have been in other support groups and it was extremely supportive and helpful and I made friends who were in the same situation. Based on your posts, it doesn't sound like you have much support, and this might really make a difference. Another suggestion is having some respite care for your husband - even one afternoon a week to get out and do things with girl friends or on your own could make a big difference.

No not happening with me sharing, people who have known us for years and observing his behavior just have to ask, have you taken him to a doctor? As if I would ignore the situation.
But you are correct about sharing, one couple who I would say the man is my husband’s best friend, the wife basically has belittled anything I have said, acted like I was silly, absolutely no empathy. I decided it was a relationship I didn’t need, although if it came to the four of us doing something, that was fine.
I have become friendlier with some friends who are also caregivers and some of my widowed friends, because I actually have lost my husband.
 

Panina

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Panina great response.
Part of the worst of the situation is is that there is no conversation anymore.

Yes when I had cancer a friend sends me an email that I caused my cancer by drinking out of a plastic water bottle. Maybe a did, but the biopsy showed something else.

I don’t mind advice, like someone saying studies show CBC oil might help. I object to acting like I haven’t done anything.

When we went through airport security yesterday, my husband put the tv remote in the tray with his wallet. The security person said, not letting the kids watch your tv huh. Just hope I get that remote back north again.
I have been through this with my dad. You know your true friends in times like this and your lucky if one or two understand and visit.

Thank you for sharing. This is a very important topic and there are many families going thru this. It should be talked about more for those who don’t understand to get informed.

Please remember to take care of yourself too.
 

klpca

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Not to steal your thread....but I found when I was diagnosed with cancer people would offer up weird / unhelpful advice and comments....."you should have eaten more blueberries" or "if only you were a vegetarian"...…"my brother's friend's wife got vitamin B shots and it cured her" have you gotten into any of those "studies; "you know its a conspiracy...the government really has the cure" - I didn't have a snappy come back and I don't have any great advice except that sometimes you need to close in your group of support to those that truly make you feel better. I'm sorry for what you and your family are experiencing.
This. OMG if I heard one more forceful suggestion about my husband's cancer I thought I would explode. You're fighting using drugs and radiation yet according to them you should just drive over to GNC and get your cure there!

Anyway I have rheumatoid arthritis (which is quite different from osteoarthritis) so I also receive a surprising amount of unsolicited advice and on the first go round I listen politely. The next time they suggest another "treatment" I tell them that I discussed it with my doctor and that he told me that it wouldn't hurt, but it won't help either. If they try to go conspiracy theory at that point, I then tell them that the research that I did didn't show whatever-they-suggested to be right for us.

To OP I understand why you are sensitive to this - I was too - but I know that most people don't know what to say, and that's when the weird stuff rolls off their tongue. You may need to specifically ask for what you want. Some still won't do it, but some friends will unexpectedly step up to the plate. Good luck to both of you.
 

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I completely understand how you feel. I have had similar situations with other illnesses. A part of me thinks that people feel so helpless and they want to help - they have no means of helping, but they cannot stop themselves from helping. So, they say something stupid. No harm intended.

Anytime anyone says anything to you, take it like you're in an AA meeting. Take what you like and leave the rest. If particular people keep making you feel bad, of course the right way to take care of yourself is to cut off contact.

I'm sorry that you are having to live this. I can only imagine how tough it is.
 

easyrider

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I completely understand how you feel. I have had similar situations with other illnesses. A part of me thinks that people feel so helpless and they want to help - they have no means of helping, but they cannot stop themselves from helping. So, they say something stupid. No harm intended.
I have seen this both ways. Most people are trying to help and it is easy to tell. Other people will say the most useless things in a spiteful way and it is easy to tell. One relative has Alzheimer and at a family reunion had problems associated with the condition. Her hearing is fine. Some people would slowly repeat things to her very loudly even after being told that she could hear just fine. The same people told my brother he caused his own cancer , in their opinion. The same people told me I caused my heart attack, in their opinion. Unfortunately, you can pick your friends but are stuck with relatives. I have no problem telling them to shut up or go home in these situations.

Bill
 

rapmarks

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Well I guess I pushed the envelope too far!
I went for a recheck after my Er visit on Monday and the doctor ordered blood work. Got needle in couldn’t get blood, did the hand one and got it but I started feeling dizzy. I told her and she pushed the bar over the seat. Next time I looked up seven people were standing around me. They made me go to ER. Potassium back to normal, it was 2.5 on Monday, but probably a kidney infection rather than a uti
 

WinniWoman

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Well I guess I pushed the envelope too far!
I went for a recheck after my Er visit on Monday and the doctor ordered blood work. Got needle in couldn’t get blood, did the hand one and got it but I started feeling dizzy. I told her and she pushed the bar over the seat. Next time I looked up seven people were standing around me. They made me go to ER. Potassium back to normal, it was 2.5 on Monday, but probably a kidney infection rather than a uti
Wow! Yikes! How are you doing now?
 

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repeat as often as necessary: Thanks, I've got it handled.
 

Beachclubmum

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Well I guess I pushed the envelope too far!
I went for a recheck after my Er visit on Monday and the doctor ordered blood work. Got needle in couldn’t get blood, did the hand one and got it but I started feeling dizzy. I told her and she pushed the bar over the seat. Next time I looked up seven people were standing around me. They made me go to ER. Potassium back to normal, it was 2.5 on Monday, but probably a kidney infection rather than a uti
Oh no! I never got around to commenting on the part in your OP about having a UTI, but had wanted to say no wonder you felt bad! I get them often and they're the worst. So sorry to hear about your possible kidney infection...hope the new drugs help you feel better soon. Makes me wonder if the original drug they gave you wasn't the right one.
 
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