Dementia: How to cut off useless advice to a caregiver from well meaning people?

Question

My husband has moderate dementia. The exact cause has been variously diagnosed, but it is probably not Alzheimer's.

I haven't broadcast the fact, but, of course my friends and some of my closer acquaintances know, and the therapists. I am constantly getting unhelpful advice, such as:

You must make time for yourself. You can't be there 24/7.

I found a support group enormously helpful when I had X. You need a support group.

The county has programs that can help. Click on [website]

This advice is unhelpful because of course I know I need time for myself (I am not an idiot); (2) I am not a groupie sort of person and I do not want even more of my time consumed by this illness; (3) county programs have income cutoffs, which make me ineligible, as anyone who knows me ought to know. And the unhelpful advice becomes tiresome when it comes for the nth time.

There is more that is unhelpful (safety is the number one priority; you can deduct medical expenses), and questions about the stage (does he know where he is?) really betray ignorance. (If he didn't know where he is, why would he be at home?)

How can I civilly cut off discussion of these obvious points and convey what would really would be useful, which is (a) stimulating conversation about anything else but and (b) an occasional casserole because as everyone knows, I loathe cooking? Or is (b) really out of line?

Clarification in Response to thought-provoking Comment of @Jesse: I don't want to discuss the subject unless I want to discuss the subject. That is, let me make the opening, and then ask me what is bothering me the most. Then proceed from there.

Answer 1

I have a somewhat similar experience... Not one to one, but similar. My mom was hit pretty young with early onset Alzheimers/dementia. It's still a very cringe worthy experience when people I barely know ask about her condition.

It's usually well meaning people who my mom used to serve/work with in her church. She was a clergy person, so she touched a lot of lives and most people remember her fondly. Knowing that they mean well, I try really hard to give them the grace my mom used to give them.

When they ask how my mom is doing, more often than not I respond with:

About the same.

Which is simultaneously true and hard... It's been a slow steady decline for several years. More often than not her condition hasn't meaningfully changed since the last time they asked. And if we're being realistic, most people would rather not hear the hard stuff.

After that I usually just take the initiative to change the subject. People are often a little too eager to navigate away from such a delicate and obviously painful subject, they just trip over their own feet and don't know how to segue from something like that. So, I do it for them.

Anyway... How are the kids doing? The little one has grown so much.

Asking people about their kids/grandkids is just an example. Pretty much any light safe topic will do. People like to talk about their kids, so it works well enough, and people usually have some story that'll move things along.

It's often easier to cut the conversation short before the peanut gallery even has a chance to chime in with their well meaning, but not terribly helpful advice. If you redirect early they don't have the opportunity to put their foot in their mouth.

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While the above works well for most friends and acquaintances, close family can be a different story. One of the hardest parts about looking after my mom was all of the input from the family... Everyone had an opinion. Everyone had to tell me about their opinion at great length.

Usually the frustrating part was that they had a lot of input, but didn't seem to realize that words weren't exactly helpful.

There were a few occasions were I just had to be blunt about it.

If you want to help, then get in the game and help. If you just want to comment from the sidelines, I have more important things to do.

Which leads us to the next bit...

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As far as the casserole thing goes... Sure. Go for it.

One of the most common sympathetic nonsense things that people tend to say is:

If there's anything I can do to help, don't hesitate to ask...

And in the immortal words of George Carlin:

He wants to help? F*** 'em, call his bluff.

Answer 2

You have hit the nail on the head that these are well-meaning people.

Your question has the beginning of your answer. With someone reasonably close to you, the next time that someone says something unhelpful, I'd respond with, "Thanks for the advice/for asking. You know what? I realize you want to help, but I've heard that from a ton of people already. You know what would really help? I'd love to just sit here with you for 5 minutes and have a chat about anything else. That right now would mean more to me than anything else that someone could do for me." Now you're expressing your frustration kindly but also giving someone the opportunity to really do something helpful for you.

With strangers or casual acquaintances, it's important to still be civil. There I'd respond with, "Thanks; I'm aware of that already." Don't explain anything, don't go into detail why it's bad advice, just cut it off quickly. Remember, they mean well and want to help. Merely acknowledge it and accept that people want to try to help.

You'll get the occasional well-intentioned but still overbearing person that won't stop. That person should get a quick, "Thanks for the suggestions and questions; this is all a repeat to me and I'm just tired of it. Please stop trying to help. This is hard enough already."

With really close friends, I'd even go into the third step you mention. If they mention programs, self-care, etc., I'd respond with, "You know what I'd really love? I'd love it if we could get together here for dinner some night. Maybe we could have a pot-luck? I'd welcome the opportunity to eat something other than my cooking for an evening and spend time with friends." I suspect that your friends may not know that you'd appreciate a casserole showing up, and pot luck would plant the seed that you don't like to cook and would like a change.

If you have a best friend, I'd even suggest getting together with her and laying this all out. A true friend will listen and may even do something about this, whether it's cooking dinner or just getting together at your place to watch TV or play cards.

The important thing is to have your friends realize what you need. If you haven't expressed to them what would help you and are disappointed that they're not doing what you need, you're expecting them to read minds. That's not fair to them and, more importantly, not effective for you.

Answer 3

I recommend being explicit:

Thank you so much for your concern and support, but honestly I've got a handle on things, as much as anyone can. I'll [X]/I'm already [X]/I've already [X], and we're doing as well as can be expected. I'd much rather talk about [Y].

Where X is "make time for myself", "look into support groups", etc. You don't need to explain yourself or your reasoning, and these are gentle deflections which indicate the general value of the advice (even if it's not at all new to you) as well as the fact that you don't really need it right now.

The last sentence clearly communicates your desire to change the subject, and potentially suggests a new topic (if Y is a specific topic, but it can also just be "something else").

People often want to be supportive but don't know how, either in general or in a specific case, and they may want to specifically avoid being callous. They feel like they're expected to say something and so they offer the best they can come up with, which tends to be generic and shallow because that's about as much as they know about the situation. Telling them what you need most (that you might expect them to actually do) takes a lot of pressure off of them, and validating their intentions makes it easier to disengage without them feeling rebuffed.

Personal experience citation: I spent just under six years as a financial counselor at a hospital, and worked with a lot of people in this situation and similar ones. I've seen and given lots of advice on this topic, and also seen how it was received.

Answer 4

Caring for my wife these past 6 years, I have learned a few tactics myself. Everyone's situation and culture will be different (I am a tall man in my mid 30's living in Midwestern US), but let me offer my experience.

During the first few years, I got so good at shutting down these worthless suggestions, that most of my family and close friends don't bother trying any more. Truthfully, it helped, because the rubbernecking and naivete made me feel like a sideshow, or incompetent for not being able to solve something that would apparently be so easy for everyone else. It's possible some people might have gotten their feelings hurt, others might have felt awkward when I opened up to them about what the situation is really like or how I was feeling, but I still think the majority of the time I was polite about it. None of them really avoid us actively, but they don't know what to say... so they don't. Say anything. Everyone just kind of pretends it is all normal, except we don't get invited to things as much anymore, more often hearing about it afterward.

Unfortunately, sometimes I need help, or just want to feel like I am still an important part of someone else's life besides my wife and my son. Sometimes I need someone to babysit during an ill timed doctor's appointment (my son is too young to be left home alone), and sometimes I just want to have a conversation with another adult. I love my wife, but I don't think I need to feel guilty for also wanting to have other friends besides her.

A few years ago, we had to move (we had stairs). In the new town, I decided to take a different approach. It hasn't worked out perfectly yet, but it's better. It has taken some practice, but I focus on two things:

1. Reacting to what they mean, not what they say.
2. Have a ready list of things I need in my head.

The second is harder, much harder for me (not just because of my machismo, or my experience showing that I can both administrate and execute better than anyone at this point, but because most of what I do and need is reactionary, and can't be planned: hopefully your situation is different), but I have had luck in trying. Never show anyone the full list (it is simultaneously embarrassing and overwhelming), but if you know that you need groceries by Tuesday, someone to sit with her while you shower sometime this week, figuring out a worthwhile task she can accomplish on the good days, a way to get your son to his school thing this Saturday, clean the bathroom, a friend to chat with this next month, a way to get her hair cut, etc., or yes even a casserole, eventually a situation will arise where you can get help with one of those things. I have had many circumstances where I could have asked for help and just couldn't think of anything, again, because most of what I do is reactionary. And I was tired. I don't really have any good suggestions on how to do this, so good luck.

But let me explain the first. Generally, in my experience, no matter what is actually coming out of their mouth, what they are thinking can be categorized in one of 3 ways: a) actually wanting to help, b) gossip fodder, or c) assuage their own guilt. Just like the tabloids, people naturally get curious about other people's lives, I don't see any need to judge someone who feels 'gossipy' at a given moment. And you will talk to many people who are experiencing something akin to survivor's guilt, or feel guilt about not doing more to help you (not enough to actually want to change, just enough to feel bad, which doesn't help anyone). No matter the reason, realizing what they really mean helps me. Whether they are suggesting I get an appointment for her with the 'miracle doctor' that fixed their sister's gout, or asking me how often she falls, it isn't really the words that are coming out of their mouth that are important. People have no idea how to act in these situations, no matter how they are feeling, they just end up making themselves look stupid. It is not always their fault, and eventually you will start getting a chuckle out of their knucklehead behavior. Or get bitter. Sometimes I am bitter. But mostly amused, anymore.

So, here is what I do. No matter their motive, no matter what they actually mean, I look them in the eye, and I always express gratitude. Sometimes, like when I don't really know the person, or have time for a conversation (my son is a normal boy, he will sometimes attempt to grab my hand and physically drag me where he thinks I should go, and he is big enough now that he has some success), all I say is "Thank you." Someone asks "how are you doing" or "how is your wife", "what can I do", "I heard about this root that grows in Antarctica that my neighbor is selling out of his car", the response is still, always, "Thank you." It feels awkward at first, answering questions with a non-answer, and not letting it be cold or dismissive, but actual gratitude. It helps to feel it, grateful that someone actually remembers my wife, is willing to spend even a few seconds of their life to express interest in something that is the most important thing to me... but faking it has worked for me in the past too.

Now, if I actually care about the person (perhaps they know my wife, are family, I think they may want to help, I have time to stop, they are an actual friend, or I think their gossip might get around to someone who actually might care), I do more than just say "Thank you." I will often put my hand on their arm or shoulder, or shake their hand, and look them in the eye, and put actual emotion into those two words. (Anyone who knows me and my wife's condition wouldn't be freaked out by me touching, and it is acceptable in my region.) It is amazing what you can express like that in just a few words: overwhelmed exhaustion, hopeful apprehension, joyful familiarity, whatever it is, it is genuine. Something interesting happens then. It isn't perfect, but at that point, no matter what they actually said, you will more likely be able to see in their face which of the three types of conversations this is. The person who wanted to help but didn't know what to say or do sees and feels something they recognize, and suddenly feels more at ease, or at least human, and their expression softens. The gossip gets this flash of excitement in their face and eyes, like they will be getting 'the juicy' stuff next. And the guilty panic! It is so much fun to watch the guilty. Or maddening. But usually fun.

And the last, for me, very important thing that can happen, is that I have just had a connection with a real human being. I need that sometimes. Even if it ends there, it may have been shallow, but it was something.

For the gossip or the guilty, I just let them off the hook at this point. I give them something positive, hopefully about my wife ("you know, she has been working on crocheting this beautiful blue blanket, you ought to see it sometime"), or at least about me or my son("oh, I have been meaning to tell you, my son joined a baseball team, he is 4th string right field, and loves it"), change the topic to the weather or something banal, and find an excuse to move on. You may want meaningless conversation, it is nice sometimes, I just usually don't have time for it. But, whatever positive thing you told them, no matter who you are talking to, there is a real chance that it will get repeated. Maybe the same person will ask again, maybe someone they tell it to will approach you. And maybe next time they will be better equipped to actually care. Or not. But you probably didn't alienate anyone. And you would be surprised how easily [most] people drop their silly suggestions, once you have made it clear you heard them and thanked them.

For anyone who remains, give them a real conversation, which is what they really want (they don't actually care if your spouse follows their uncle's exercise program, they just didn't know what else to say). Me, I usually just launch into an explanation of the feeling I just expressed in my tone and body language, as best I can (which is usually pretty poorly). Sometimes, I skip that part, and go right into something along the lines of "you know, actually, there is something I have needed to ask..." But no matter what I say next, the conversation and its tone has changed. That is why it was important to have a list of things you need, so you can keep the conversation here, instead of slowly drifting back to awkward, where they fill the silence with nonsense about how they heard the sickness was caused by plastic in water bottles.

I have found that, once I have had a few real conversations with someone, I can much more easily gauge what they mean, and they are far less likely to bring up nonsense. As a matter of fact, I will sometimes even enlist their help, after a few conversations, in trying to stop the horrible suggestions. When I have 30 minutes with someone who has actually helped, whom I trust, I will sometimes try to explain to them exactly how much it hurts to have people try to armchair quarterback the one thing I have been pouring all of my time and effort into for years, the one thing that matters most, the one thing that I can truly say I am the world expert on. And you will be the world expert on caring for your husband. They never get it, not really, but usually they kind of understand. They already know you need and want help, and will probably feel the pain you are expressing. At least, they probably won't bring up stupid ideas again themselves, or act like they know all the answers.

Now, if someone is already in a deep or emotional conversation with me, before they bring up advice, "Thank you" isn't as effective. Not to say it can't be used in the middle of a conversation, just that it isn't useful unless you can actually elevate the perceived meaningfulness of the conversation. If it has already been deep, like when they were consoling me about a death in my family, and then out of the blue tell me I should put my wife in a nursing home and get on with my life, "Thank you" doesn't really cut it. It hurts more in those cases, a lot more, and elevating the emotion through physical contact (unless that emotion is anger, which I tried to avoid displaying, but would probably cheer you offering them a right hook to the jaw) doesn't cut off the discussion, which is your stated goal here. What I have found most effective might be seen as manipulative by some, and I am not sure how I feel about it. But it works.

Instead of reaching out, close yourself up emotionally. Get tears in your eyes (easy for me, whether the suggestion is just a dumb one or an offensive one, I was just insulted, for the hundredth time, this time by someone that I was opening up to and trusting, and you have a deep well of emotion you can't let out in front of your spouse anyway), say something along the lines of "I just can't..." (letting them finish the sentence in their imagination), and if they don't back down quickly you get out of the situation (go to the bathroom, to your car, walk outside). It is kind of the nuclear option, but it won't offend them. Probably. Some people, well... you don't need to be friends with everyone. So, yes, it isn't offensive. If overused, it is crazy, and will rightly label you as such. But if this is happening often, sincere conversations becoming people telling giving you unbidden trite or horrible advice on how to take care of your family, you probably need to rethink your choice in friends.

So, that is my suggestion. I know it is a little more than you asked, but I have found it works in the short term to cut off undesirable conversations, but more importantly for me also works in the long run to avoid isolating myself.

Good luck.

Answer 5

Transactional analysis.

People are offering support, in one form or another. To simply say "thankyou, everything is fine and good in the circumstances."

If everything is fine and good in the circumstances, then there is no need for further advice or progress etc in any area.

Put another way offering a solution to a problem that does not exist stops even the desire. This will resolve the continued advice you are receiving without much effort on your part, and is polite and to the point without causing offence.

I have talked to many people of my own age and discovered they have their own experience of the trauma and joy of looking after a parent or partner through the stages, and recognising the steps from need to dependence to care home and to final resolution. It is a slow drawn out process of mourning, letting go of someone, as things progress. I have spent 5 years caring for my mother, going from one stage to the next, and recognising the price and the benefits involved. And we are still not at the end, but blessed by the support we have received.