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They don't understand why I'm exhausted all the time, why I can't be spontaneous and go out with them, why I don't have the energy or stamina to talk on the phone... explaining Alzheimer's is a progressive disease and what my day to day entails seems to not get through.


They don't want to hear about the anxiety, doubts and panic that plagues me anticipating the next fall or regression with her disease.


When I'm asked how are you, I feel so overwhelmed I don't even know how to answer that, so I just say "fine" and change the subject. Anyone else found a better way of answering?

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How about “goodbye.”

If they haven’t been through it themselves, they probably won’t ever understand. Sad but true.

Almost worse is when they say, “I know just what you’re going through” when they never took care of someone with dementia. I had an aunt like that. She never had the care of her parents but stopped by their house a couple of evenings a week as their health declined for reasons not dementia related. That didn’t take long, and she never had a blip in her work, social or family life. But she insisted that she’d been through the same thing as I had. There was absolutely no comparison.

Seriously, I don’t know what the solution is other than not to talk to such people so often, if at all.
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JoAnn29 Sep 2023
She had my GMom living in her house for 2 yrs before she was placed. You may have thought it was 20. Her oldest sister used to take my grandmom home to her house at night, after work, and drop her in the morning back at Gmons house to spend the day. My cousin spent weekends at Gmoms. This went on for ages but my Aunt did it all.
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What I found unnerving is when people completely ignored me and only asked about my mom.

It would have been great if they would have asked how I was doing too. There were times when I felt invisible.

I agree with Fawnby though. If a person hasn’t walked in your shoes they may not be capable of understanding your situation.

Some friends are not meant to be lifelong friends. People come and go in our lives.

Remain close to the people who truly care about you and ditch the rest.
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BurntCaregiver Sep 2023
@Need

Isn't that just always so? The asking only about mom and how she's faring.

Happens all the time.
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Maybe try to not have expectations when you're with those people... just have some distraction and maybe even fun. Don't look to them for emotional support, just social interaction.

Expectations = premeditated disappointment

I also agree that people who have never personally experienced caregiving for an elderly LO with dementia cannot relate, just like someone who never had kids cannot relate to being a parent no matter how hard they try.

Nowadays there are online, affordable therapists. I'm not implying you have a mental issue, but maybe just really need to unburden yourself to someone -- and who can blame you? A therapist may also give you better, objective advice on how to interact with people around you so that it doesn't make you feel more isolated.

I wish you wisdom and peace in your heart!
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NeedHelpWithMom Sep 2023
Oh this is so true!

We shouldn’t have unrealistic expectations of certain people when we know they have a history of not being supportive!
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I lost several friends during my caregiving years with my late husband, and those that stayed who weren't caregivers themselves, I would spend time with occasionally just going out to lunch or supper just to give me a break from my reality at the time.
They would of course ask how things were going and I would try and keep things some what light as my intent was to get away and have a good time, not dwell on what was all going on at home.
There was a time however when I met a couple of my friends for supper and I had had a really rough day with my husband and lost my patience with him and hollered at him. I shared that with my 2 friends who looked at me in horror as they couldn't understand how I could do that in the shape my husband was in. Of course that made me feel even worse, and I learned that not all things should be shared with those who have no understanding what true caregiving really entails, and that of course it does sometimes(though in my case not often)entail losing our patience and hollering.

So that brings me to my MOST IMPORTANT point, and that is to find a local caregivers support group that you can openly share whatever emotions and feelings you're having with other folks who know EXACTLY what you're going through and won't think twice about the fact(or judge you)that you hollered at your loved one.
That was my experience, as I the day after I met those friends for supper who made me feel bad for hollering at my husband, I had my caregiver support group and shared with them what I had done, and they all were so understanding and said "well of course you lost your patience and hollered at him. We all have done that at some point in our journey."
That was what I needed to hear and it made me feel better to know that I was not alone in losing my patience.
But truly only those who have been there done that can REALLY understand what you're going through, so cut your friends some slack and just go out and have some fun with them every now and again, and find yourself a good caregiver support group to vent to.
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BurntCaregiver Sep 2023
@funky

You hollered at him. You're human just like everyone else in the world and NO ONE has an endless supply of patience and compassion.

Losing your temper a bit and yelling at someone is a long way from abusing them.

Your friends who looked at you in horror when you told them just did not get it. People who aren't living in it always think that caregiving is easy.

A few fools who have never had to do it even think it's "rewarding". No it's not. What reward is there is watching someone you love suffer and deteriorate? Or in breaking your own body doing the grunt work of caregiving?

There's no reward there.
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Caregiving for my mother all but destroyed not just my social life but almost destroyed my entire life. Slowly, I've rebuilt friendships and acquaintances. My friends who are actual caregivers themselves by profession always stuck around. They know what it is.

My few friends from childhood also understood. That didn't mean they wanted to be around my mess and drama with my mother.
No one came to the house when I was there because the negativity and misery was just too much for anyone. It made me very sad, but I understood.

For your own good, you have to put some distance between yourself and your mother.


If it means sending her to adult daycare on the weekends, do it.
Even if she doesn't want to go, force her to. Believe me she will prefer two days a week in daycare to being put in a nursing home/memory care.


Don't rule that out though. If you have to place her do it and don't beat yourself up with guilt over it. That will do no one any good, least of all you.

There are no scripted words to answer friends when they ask you how you're doing.
Most people when they ask how someone is doing they expect a simple answer. 'Fine', 'All right', 'Well enough', 'Okay'. They really don't want to hear about your mother's Alzheimer's progression, your hard and exhausting caregiving journey, or hear a play by play of incontinence and adult diaper changing.

Believe me, I did caregiving for 25 years so I know exactly what you're dealing with because I've worked for countless families just like you.

Tell it to the people here in this group. Or to a therapist. Or to a close friend. A real friend will listen and understand. Then find some outside help so you can get away from your situation a couple days a week. This is so important.

As for people not understanding, well take the good wisdom of the great Keanu Reeves.

He said:

"Eighty-percent of the world doesn't care about your problems and the other twenty percent are happy you have them".

Please get a little bit of a life for yourself before caregiving completely destroys you.
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Forget the script. People who haven't personally gone through home care will never understand what it is like. Hell, I had cousins who had to take care of my aunts when my uncles passed away, and I did not have the slightest clue what they were going through until I had to do it.

Interestingly, as I get older, I am finding more and more coworkers and friends that are now having to deal with home care for their parents or in-laws. They are now coming to me and unloading about all of the issues and stress that they are having to deal with. Instead of them helping me, it turns out I am helping them. I do find those conversations helpful, just like the posts that I read on this forum. Just knowing you are not alone really does help get you through it.
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You say "Fine"?

Really? Well, great. Because that's what the whole world would prefer to hear, isn't it?

You aren't giving your friends even your honesty, then, and I feel they must not be very close friends. I can't imagine that when you are this overwhelmed you don't just say what you just said to us: "I feel so overwhelmed that I don't even know how to answer that; so I just say 'fine'".

There are friends and then there are acquaintances. A friend would call and say "I am running to Safeway; give me a list of stuff I can get for you".
A friend would say "I am on for watching (mom? dad?) for you; you just book me and take the afternoon off any day this week or next. See a movie. Go to the library. Shop. You have my phone and I have yours and I will call if I need you".
A friend would say "I am watching Mom for the afternoon and Irma is taking you to lunch. Give us a day".
A friend would say "Casserole on the porch! Enjoy!!!" A friend would say "I am coming over. You are having a hot bath and a glass of champagne. Then we are eating popcorn and watching Tender Mercies even IF mom interrupts."

Friendships REQUIRE honesty. Start talking to your friends. If they aren't there for you then they aren't and never were friends. Start reaching out through local council on aging, your faith based group, whatever to find support groups who understand. Or CREATE ONE. Even if it's a phone reachout for when you are feeling desperate.

And most of all know that friends CANNOT mend what is a life-not-working. If you cannot do in home care anymore then you need to reassess and to stop trying.

I am so sorry and I wish you the best.
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exhaustedcarer Sep 2023
I thought this forum was about support, not judging or criticizing people? You've made a lot of incorrect assumptions about me. Did you not see the part where I said I'm tired of explaining myself? How you came to the conclusion I'm not being honest with friends is puzzling.

In an ideal world, yes, friends would do all that you said. In my world, friends are busy living their own lives. It would be nice if they could do more, but not all of them are nearby or even in the same time zone.

I have a friend for many years was conservator for her elderly relatives. She's done. She wants no part in any of it. Does that mean she's being selfish for not wanting to do what you suggest for me?

Circumstances change, one day you find yourself not feeling so close to a friend you once were. Situations come to light that weren't there before about a person until you really see them for who they are.
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I’m sorry for what you’re going through and I don’t have a lot of wisdom to impart as I am going through the same thing.

I just returned to a high school teaching job, and the first day back everyone was so sunny and happy talking about their trips to Costa Rica and the like, and asking how my summer was. I tried to prepare myself as best as possible. I only told the few people closest to me, and pretty much burst out crying. To others I said I was caring for my sick mom, and tried to change the focus back to them asap.

This is when we find out who our true friends and supporters are. I’m very blessed to have at least 3 good ones. The others I find, to my surprise, are merely acquaintances.


PS. I friend’s mom died very suddenly at home a couple months ago. I know she is going through her own shock and grief. We have tried to mutually support each other. Yesterday she suggested I start going through and discarding my moms things now to lessen the work later. What? Some days I don’t even take a shower, or can barely get a meal together. Her mom did not spend a single day in the hospital, nursing home or in home care. As everyone above said. People who haven’t been there JUST DONT GET IT.
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olddude Sep 2023
Yup, I remember hearing about coworkers and other relatives that had a LO die very quickly in their own bed, and thinking how they are the luckiest people in the world.
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“Script”? There is not one, not if you hope to keep them as friends. Making your friends feel sheepish and ashamed for “not getting it” will only drive them further away. Sadly, there are some situations in life (and yours is one of them) that are, by definition, solitary endeavors. Of course, those who love you will ache for your misery, and be happy to listen (within reason,) but they will also privately wonder, “Why the heck does she continue to make her own life a living Hell, when there may be other arrangements…?”
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exhaustedcarer Sep 2023
Wrong. Yet another assumption about me. Wow, folks, I really don't get the attitude?

Not there yet. She's not incapaciated, and I have no legal authority to place her in a nursing home. POA is springing only when deemed incapacitated. If and when I reach that point, I've already had that discussion with her and her doctor of placing her in long term care facility.
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Empathy is learned through scar tissue only. Until a person has walked in your shoes, they don't get it. Truth is, nobody wants to hear us complaining about things or venting, not for more than a few minutes anyway. That's what I've found, after 10 years of dealing with my elderly parents, and now with stage 4 cancer myself. Friends and family want to hear that everything is fine, or getting better, etc. Not the gory details of REAL life. Real life details are reserved for our spouses or doctors or for the wee hours of the morning when our minds are working overtime.

I've had no super close friends locally that I would have ever asked anything of during my parents lives. The relatives that always said they Wanted To Help never even went to visit my folks in AL and then MC when that was the one thing I did ask of them. #Truth

Out of town friends and local relatives have sent me gift cards to restaurants for take out after my cancer dx. Not one has come to visit. Nobody Knows What To Say. Hello would be a good start, huh? 🙄

I hear you and I sympathize with you. I don't blame you one bit for saying "fine" when asked how you're doing. Unless you feel that you can REALLY talk to someone and be heard, what's the point, when you know they've mentally checked out after the 2nd sentence.

Some things in life we're alone with.

Sending you a hug.
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NeedHelpWithMom Sep 2023
Your first sentence tells the whole story!
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We were at a Memorial service a couple of weeks ago and sat at a table with a couple we knew. I grew up with the husband and our mothers knew each other. The wife got talking about the care of her Mom so I shared my experiences. We were actually laughing at some of the things our mothers did. Then the Husband said "people just don't understand who have not been there, though. And they don't, they have no idea. When your told you look so exhausted say "yep, because Mom is up in the middle of the night getting into stuff. By the time I get her back in bed, I am wide awake and can't get back to sleep. Then she is up bright and early just as I have finally dozed off. Its like having a big baby. She can do nothing for herself. I have to bathe her, dress, her toilet her which includes wiping her. Feed her 3 meals a day. Can't leave her, she is 24/7 care. I might get a couple of hours when DH comes home and thats when I run errands and shop. Its just like having your first child and they have colic.
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There is a fine line for everything and sometimes people just don't know what to do. Honestly, only your friends who have ever had to take care of someone will get it. I hired a coworker that was very difficult to get along with at first. Then we both realized we were each managing an elderly parent. Boy did we bond over that fast!

Sometimes I think we expect a bit much of our non-caregiver friends. People get upset because no one asks how they are doing then when they are asked they only have the energy to say 'fine'. They say fine because they don't know if their friend REALLY wants to hear how it is really going. Or maybe the caregiver just wants 5 minutes to talk to a friend about anything but caregiving. But our non-caregiving friend don't know that. Nothing wrong with saying "I just don't have the energy to get into it all right now, can we just talk about something nice?"

And yes we will lose friends because we don't have the ability to be a friend back at this moment in our lives. True friends will stay on the parameter and wait until we are ready. Or they will try and help but don't be mad if they ask the wrong things. Let them know what you need.
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notgoodenough Sep 2023
I love this answer!

Yes, yes, yes to 5 minutes of being able to talk to someone about anything BUT caregiving *or* the person for whom you are giving care! And this goes for ANY type of caring, be it an elderly parent or an infant or anyone in between!

I remember saying to my in-laws after I had my first baby that I still had other things going on in my life BESIDES my infant son - besides how often he pooped, how well he was eating, how long he slept, etc. My MIL just apologized, hugged me and said she remembered feeling the same way, and after that always made it a point to converse with me about something other than the baby.

It's bad enough that your entire world shrinks down almost nothing other than the daily drudgery of caregiving, but when people ONLY see you as a caregiver and that's ALL they ever want to discuss, it narrows that world down even further.
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My 2 best friends had both taken care of family members who had ALZ or PD, and they were the best blessing , and still are . Friends who were clueless quickly fell into the sort of friend's category.. My 2 besties were always willing to stop by and take over, even the hard stuff, so I could go run an errand, or just plain breathe! One was by my side, and my Mom's as she passed. It is hard to see friends fall by the wayside, and I gave up and just said "fine" alot too. Now that Mom is gone, some of them have come back into my life. And I am glad they have,, and I know I will be able to do the "hard stuff" if they have need. i am sorry I don;t have any other advice except to hang in there.. "This too shall pass"
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I wouldn’t even answer because I’ll give a nasty response…I understand how you feel. Hugs 🤗
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Emma, I’ve just read through the thread. You haven’t been positive about any of the responses, in fact you’ve sounded quite angry twice. Perhaps you should tell us what answers you want from people on the site. Or what you actually want people in your life to say. Rehearse it with us!
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AlvaDeer Sep 2023
I so agree. I think it is ExhaustedCaregiver asking, not Emma, but I think it would be great to hear what exactly might HELP her. What it is she would like, or expect of a friend. Would be quite interesting to hear, I think.
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I think it's not a terrible thing to ask your friends for an ear to vent to.

Sometimes when we hear about people's problems, it's a human reaction to immediately try to come up with solutions. And there are just some problems that defy solutions. So talking about things like that make people feel helpless or uncomfortable, and so they try to avoid those conversations.

Does this possibly describe some of your friends? If so, then maybe preface a conversation with "you know, I just need to voice some of my uncertainties and fears to someone to give them a "face" so to speak; once that happens, it becomes easier to deal with them. Would you mind being my sounding board for a few minutes? I'm not looking for solutions, I'm just looking to vent." Sometimes setting "ground rules" like that make it easier for the listener to actually listen, as opposed to wracking their brains trying to solve the unsolvable.

Or maybe something like, in answer to how are you doing "well, you know my mom has this progressive disease. It's not getting better; it's not going to get better. I'm doing about as well as I can be under the circumstances, which is to say not very well at all. But I have to keep on keeping on, you know?" And be prepared with an idea if their response is "Is there anything I can do?" Because if there is, then is the time to say it: "yeah, you can listen to me rant and rave for 5 minutes without looking to have me committed" or "yeah, you can tell me about something beautiful you see out your window, to remind me that those things still exist" or "hell yeah, I would love to meet for a cup of coffee and talk about anything but my mom's health" or something of that nature.

People aren't going to understand what you're going through unless they have gone through it themselves, but that necessarily doesn't mean they won't be sympathetic to your struggles if you give them a chance.

I hope you can find some friends who can offer you whatever support you need in person.
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What do u think of this one

The joys of Caregiving. LO is 24/7 care because cannot do anything for themselves. Give me no time to myself.
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I've been a caregiver more times than I want to remember in my family and professional life. Luckily for me, my friends during my caregiving season with my sister were all medical people and understood. One time one of my friends dropped over with a couple of beers and my sister was just going through her antics of being a pain in the a$$ for that day. The older sister did not lift a finger to help and kept making false reports. My friend took my by the arm and said; your sister can wait for now. Sit down and have a beer. We sat and had a nice hours chat and nobody died during the time.

You have to take time away from these folks even if it is for a minute or half hour as long as you know they are safe. If we don't take breaks, we will end up sicker than the people we take care of.

Go on a mini vacation even if you must hire someone for the weekend.

As for fairweather friends, they moved on. I haven't heard from any of them in years.
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Why do people become friends in the first place? Firstly because we are both in the same place at the same time – school, work, church etc etc. Second because we ‘click’ on something – liking something, disliking something, sense of humour, past experiences etc etc.

People ‘fall out of love’ and they also ‘fall out of friendship’. I won’t speculate on why we ‘fall out of love’, but it’s interesting about friendship:
- If we stop being in the same place and the same time, it’s quite normal to get together very occasionally, talk about the old times, and feel that the friendship has continued. If you see more of them because once again it’s ‘same place and time’, you often find you’ve actually drifted apart. You may even dislike each other.
- If something overwhelming happens to either of you, it can change what’s even possible to think about. You don’t ‘click’ when you have nothing in common, at least nothing that’s as overwhelming as your problem. And once again, even when it stops, you may find that you’ve drifted apart.

If an ‘old friend’ doesn’t bring a casserole or say the right things when it matters, it doesn’t mean that they ‘weren’t really a friend’. If they keep doing nice things for you, it probably means:
- They are a ‘helper’ by nature, not just ‘your friend’.
- They understand only too well about the overwhelming issue, so in a different way you still have something in common.
- They are a bit lonely.
- They would still be a friend on the ‘talk about old times’ basis, but that doesn’t work for you.

It can make you feel bitter to decide that people were ‘not really friends’ or just ‘fair weather friends’. In fact most of us have the wrong expectations of friendship. Perhaps we should look for a support group that has good on-line links, and let our old friends off the hook.
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MargaretMcKen Sep 2023
It occurs to me that the divisive nature of US politics means that 'old friends' who read from the other page would be quite hard to stay close to. Tony and I have found that quite recently, and we are a long way away!
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