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Sugarcubesea

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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”.
Panina, you always offer the best advice and assistance. I've been through many struggles, and having a kind friend was the best medicine...
 

isisdave

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Depends on the closeness of the "advisor," the specific illness, how long you've been dealing with it and how clued-in the advisor might be.

I say this because I have known quite a few smart, educated, loving, and concerned people who, due to humans' innate wish to deny problems, wait too long to address a problem. This almost always results in a poorer outcome. Since progressive illnesses are more apparent to people who don't see the patient daily, I'd give it a think if more than one made the same suggestion.
 

rapmarks

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Depends on the closeness of the "advisor," the specific illness, how long you've been dealing with it and how clued-in the advisor might be.

I say this because I have known quite a few smart, educated, loving, and concerned people who, due to humans' innate wish to deny problems, wait too long to address a problem. This almost always results in a poorer outcome. Since progressive illnesses are more apparent to people who don't see the patient daily, I'd give it a think if more than one made the same suggestion.
I asked the doctor for four YEARS before they took me seriously, starting nine years ago. He has been on maximum medicine for almost five years. No I didn’t ignore the situation, and he saw three different neurologists this summer, has done all day testing at least five times. There is no cure, so blaming me doesn’t you very far.
 

Jan M.

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There are some people who will find a way to deflect things back on you because in their minds that absolves them of feeling like they should do something to help. Some people see their not so "helpful" advise is an adequate substitute for having to do anything that might actually be helpful. They need to find a way to excuse themselves for not getting involved because it might lead you to having expectations of them being there for you and your husband.

Now I'm going to try to be a little fair to these friends. Have these friends been like this from the start or is this more recent behavior in the last year or two as your husband has slowly gotten worse? I don't know your friends at all but I do know a little of your situation. Are they distancing themselves because of your choices? You've chosen to maintain two homes with all the work and headaches of both and dealing with the travel between them and on top of that all that you do for your daughter and grandsons. Do they feel like if they allow it you will become a bottomless pit of need? I'm not saying you ever would just that this may be how they feel. Your friends aren't getting any younger. Keeping up with all that you do has kept you more active and capable of handling more than they likely can on their best day now. Also your situation may make them think about things they would rather not which leads them to avoid you and your husband. As we get older most people have moments they wonder if what you and your husband are going through could be in their future. Either as the person afflicted or their care giver.

Definitely not always but sometimes when people ask have you done this, seen this doctor, etc., they are actually interested in learning from you. Typically the person who is dealing with something needs a sympathetic ear more than an exchange of information or embracing a teachable moment.
 

rapmarks

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Jan, I wouldn’t say friends ask this, I would say neighbors or acquaintances. Up north I would say we have no friends, any we had disappeared several years ago.
In Florida, it is neighbors who just have to ask, after witnessing strange behavior, have you taken him to the doctor. Just ask, what do the doctors say. I play bridge on Wednesday while he plays golf. He comes in the bridge room, and I have to take him out and tell him what to do. Then a lady I barely know will say , why haven’t you taken him to a doctor.

I guess I would say in Florida, any friends are my friends, and I do need help sometimes.
Thank heaven the younger man across the street took my battery out of the car, told me where to go to replace it, and put the new one in place. But I really do not ask anyone for help, although when I was putting the storm shutters up, a neighbor put the one above the front door up for me.
I signed my husband up for golf league again, but I doubt he will get through the year. It is a lot of work to play golf with him, but he needs some social interaction.
 

rapmarks

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In case you are wondering what th3 doctor says, there is nothing more that they can do for him. It is necessary to keep seeing the specialist to address two concerns, safety and mood.
 

Jan M.

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From talking to you when we met and your posts I think you've done an amazing job of keeping your husband active. Also that you have gone to great lengths in seeking medical care and treatment for him. It's hard not to be offended on your behalf that people who although they may not know you well they still know you better than I do, ask questions that suggest otherwise.

There are certain situations and things that just seem to bring out people's ability to ask stupid questions or make dumb remarks. In regards to the woman who asked why haven't you taken him to a doctor it would be so very tempting to ask her "Why, do you think there's something wrong with him? Do you think I should?" When my now deceased MIL got older my SIL and I observed that a lot of people as they age become somewhat to very selfish, judgmental and rude.

When we lived in Butler, PA, I belonged to a card club for 23 years. One of the women's husband had Pick's disease and had only been diagnosed a year or so before I joined. Pick's disease is a kind of dementia similar to Alzheimer's. They went through a lot getting him diagnosed because he was only in his early 50's when it became obvious something was going on with him. For a number of years she was able to manage quite well as his condition got worse. The most difficult thing for her was when it reached the point she had to restrain him to the bed at night so she could sleep. By then he was no longer talking and would wander if not constantly watched. On a winter night when it was snowing he managed to get out when she fell asleep. In spite of all the locks she had on the doors and how careful she was. Their dog woke her up barking because he got out. She had to call the neighbors and police to help her find him. That incident really traumatized her. She became so run down from lack of sleep and ended up having to be admitted to the hospital with bad case of pneumonia. While she was in the hospital her doctor and her adult daughter and son all had a talk with her. They told her she had to restrain him so she could sleep or he would have to be put in a nursing home. That she shouldn't feel feel ashamed or guilty about doing it. Her son and daughter told her that they were afraid for her and that they didn't want to lose both of their parents. She had been good about spending the money to hire good people both she and he were comfortable with so she could get out, socialize and do more than run errands. She had also been taking him to an Alzheimer's day care at the VA hospital where they had activities specifically for people with Alzheimer's. That gave her some free afternoons or mornings to run errands and do things. She was able to keep him at home until the last 6-8 months when it was no longer possible even with nurses and aides coming in regularly to help.

i know you know what to expect down the road with your husband. Please don't ever feel ashamed or guilty about what you have to do when the time comes that you are faced with decisions that may be difficult for you. And most importantly don't let it get to the point that you are endangering your own health.
 
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geoand

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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
Had no idea that we know the same people
 

Teresa

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MOST people mean well. Just keep thinking that when you want to bite their heads off. SOMETIMES someone can give you something you can use so keep that in mind too.

My friend (years ago) mentioned about my daughter closing one eye often when she spoke. I probably got so used to it that it became routine. After my friend (still my friend) said that, it made me pay more attention. It was lazy eye (inherited from her dad) and she was closing her eye to focus better. She ended up with eye surgery to correct and had to relearn not to close her eye (had become a habit).

This is certainly NOT the same problem (you shoulda done this - seems like blaming) but it does 'prove' that sometimes other people can help with 'suggestions' or 'comments' that are made. It could have been that others had mentioned to my daughter that she did this (or they asked her why she did this) and she never mentioned it to me.

My friend is pretty outspoken and has even told me that she tends to be blunt and 'tells it like it is'. As much as I wish she were a little kinder when she says things (not to say she's mean or ill-intentioned) I always appreciate comments like that. I used to tell my m-i-l that I would always listen to the advice she had to give me. AND she shouldn't feel offended when I chose not to use it (a lot of the time). She gave me LOTS of advice. Most of it got discarded. She still got offended. Oh well.

Take Panina's advice (thank people and then tell them what would help most).
 

rapmarks

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I just got an email from the officers of the men’s league asking to meet with me over something that came up at the board meeting. I am afraid they are going to tell me my husband can’t play in the league anymore.
 
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Although not as severe as everyone else's issue, I have asthma and eczema. They're not related, but the stress of sickness can cause an explosion on my skin - they call it an outbreak, it feels more like constant fire when it gets real bad. EVERYONE says I should use this or that for the skin, or this or that for the asthma. Essentially, "what's good for the goose isn't good for the gander".

Just be honest. You already did this or that. Let them know. If they get snippy, you don't need them in your life.

TS
 

silentg

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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
Hope you are ok. Caring for your DH is stressful, your health is important too. Let us know how you are feeling.
 

Firepath

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If anyone knew a cure, preventative, or something to delay dementia they would be very wealthy indeed. All I know is it is very difficult for the one experiencing it and for everyone who cares about them, especially the caregiver. If you can't do something to actually help, it's best to keep your advice to yourself.
 

rapmarks

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Hope you are ok. Caring for your DH is stressful, your health is important too. Let us know how you are feeling.
I am having trouble getting my blood pressure down, and my kidney function numbers aren’t good. So I have another dreaded blood test next week.
 

WinniWoman

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I am having trouble getting my blood pressure down, and my kidney function numbers aren’t good. So I have another dreaded blood test next week.
The stress must be incredible. Prayers for you and your husband.
 

pianodinosaur

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A mind is a terrible thing to lose. Alzheimer’s is a disease that kills the family. Horrible.

There are evil people ready to exploit the elderly especially if there is money involved. Beware!!
 

pianodinosaur

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Accidental duplicate
 
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