Frustration over getting told this...

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Frustration over getting told this...

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Would you rather they say, "I hope your parents die soon."? Maybe you could give us some suggestions on something that may have more meaning for you. Maybe, "I know this is a hard time for you, is there anything I can do to help?" Most of us have no idea what to say. My heart goes out to you as I've been there and I know it isn't easy.

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When my dad was in the hospital dying of cancer I wasn't ready to handle it yet. I was asked by a friend "How's he doing?" I said, "Fine". I had just left the hospital and it had been a good visit so in my mine at that moment he was fine. My sister in law was standing next to me and said, "How can you say that? He isn't fine at all." I was so embarrassed and she made me look like I didn't care a flip about my dad. I know it embarrassed my friend. So it can go both ways.

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How about “no we’re not but we’re doing the best we can. Thank you for asking.” Sometimes you just have to let the truth out, or at least I do. I do try to end with something positive like he still knows me or he’s calm. Sometimes I’m more blunt and just say he’s under hospice care right now. As they say, don’t ask the question if you don’t want to know the answer.

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You say thank you. You always remember to thank people when they remember your parents. You thank them for caring about your struggles as a caregiver.

People don't know what to say so most often they will just ignore that you even have parents. I assisted my dad for 7 years and I was a 24/7 caregiver for my DH for better than 3 years.

I am now "remembering" that the butcher at my grocery is a caregiver for her parents and tries to work 1 week a month. And I was/am honest with her. There is only so much I can say, but I remember to ask about her parents. I even went so far as to tell her that there isn't much I can say other than that I will pray for them. And she thanks me just for caring enough to try to find something to say. One day I told her that it helped me just knowing that someone, somewhere cared enough to ask.

Caregiving is a lonely job - and yes, it is a job. If you don't scream, you might even find someone that can give you helpful advice. My DH's niece is a 24/7 caregiver for her husband and after my DH passed, I brought her some of the supplies needed for caregiving and she was thrilled. I don't have to tell you, supplies get expensive over time. I can only deal with so much after losing my DH but I need to bring her more of what I accumulated over the years.

Hang in there Els1eL - you're doing a Mitzvah and you are Blessed.

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I think many of us are so tired of the long goodbye that this disease brings, that we are just tired of it all. I have friends at church who know my dad has dementia and is in a NH. I will get asked how my dad is...and I always have a "sad face" and say "no real changes...it's hard on him and me."
On the other hand I have two close friends who I’m in contact with and they NEVER ask how he or I am doing and that actually confounds me. It’s like they don’t really care. To me that is much worse than people who try to recognize that you have a LO who is not well.

Once my so called good friend said to me, "at least your not caring for him in your home." It was like she was discounting that this road was still hard for me. I snapped back and said "it is still hard, Jane!" In a not too polite voice.

NOTHING about this is easy for any of us. Those who’ve never has a LO with dementia have no idea and it’s ok to educate them. You could also say "it’s one of the hardest things either of us have ever gone through".

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“Thank you for thinking about us “”I have a number of chronic illnesses and have learned people don’t know what to say In that situation . They are wishing you well and have kind caring thoughts about you and your family. While it may annoy you, be glad they love and care about you. Be glad they aren’t deriding you or them for them being sick which is a common attitude today

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I am truly baffled by the resentment directed at people who are offering a friendly greeting. Why the desire to scream at THEM? I suspect that the desire to scream at THEM is really a misconstruction -- THEY are not the ones exasperating us; the situation is exasperating us.

And if one does respond honestly, how are they supposed to respond without pushing another scream button? If "I'm so sorry" is also annoying, what are kind inquirers to say in return? We cannot expect that everybody else "understand" exactly our individual sensitivities, which after all, vary widely from person to person, as this queue of comments demonstrates.

If what we really want is for inquirers to offer to relieve us of our caregiving tasks, feeling exasperation toward them does not exactly invite their help.

Please understand that I completely compassionate the exasperation. I just think that blaming kind inquirers is scapegoating them.

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This is called cordial conversation. Just say thank you.

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Sometimes people ask because it makes THEM feel better, particularly if they don't visit the person or haven't done so in the last few years. To them I say "thank you for asking, he/she is not quite as well as he/she was when he/she saw you last. If I'm feeling really sarcastic I will throw in "Oh and I'm fine too, thanks for asking". Does anybody notice that people who always ask for your parents/cared ones never ask for YOU? It's like you exist solely to care for them and tell "concerned" well-wishers that everything is ok. When people ask how things are the answer they expect is "good thank you" then they can go about the rest of the day feeling good about themselves for asking about your parents/cared ones.

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I know how you feel, but at least some people ask you. Most people I know have taken themselves out of our lives so my friends just left. Maybe they are not saying the right words because they dont know what to say. We all know the end result. I also have a daughter critically ill and a daughter in law as well. So better these people backed away, I am not in a good place. I would say something to them like maybe, This is very difficult and no good ending happening....But really no one wants to be around it because if makes them face their mortality. We suffer in silence and it effects our whole life. I try and get a few minutes to myself. My husband still understands when I say coffee first. He actually laughs and says it. We carry a huge burden. But we must find ways to get out for a little while, take a walk, anything. The constant stress is gonna do us in if we dont find an outlet for all the stress. Dont be hard on them...at least they ask....

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how about "Actually we could use some help. " and have a list of simple things ready that they can do; a meal, respite for you, call if they are going to store, visit!

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Because they don't know what to say.... it is kind of a way of saying we are thinking of you and have you in our prayers, and/or we wish it wasn't this way and we're so sorry you have to go through this.

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I'm not sure why this is so traumatic for you, but it is and you have reached out for help. You chose and excellent forum. I honestly feel some people don't know what to say and don't want to exclude your parents. They said, "I hope 'you' and your 'parents' are well. To me that is a statement of concern. If someone knew about the dementia and said, "I hope they get better soon" would be a more appropriate statement to have a concern.
We're under so much stress seeing our loved ones decline with this horrible disease we can misunderstand someones intentions with conversations. Have you come to terms with your parents illness? I was very defensive until I accepted it and studied what this disease is and how it progresses. Our Senior Services offered a 10 week course on Understanding Dementia. I wish it was available for everyone because it helped me in many many ways.
I wish you peace of mind and tolerance. Stay strong.

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Hey! At least they care enough to ask, be thankful you have people that care enough too ask!

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My mom's Social Worker always uses the phrase "her world is getting really small".

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I understand your frustration when your life and your parents' lives have come unraveled and all your nerves are standing outside your body.

Do you have anyone you can really openly talk about your feelings, needs, and frustrations with? Perhaps if you had a place to put the "screaming mimis" it would make it easier to fend off polite inquiries. If you don't have such a friend or family member a counselor may be of help to you. At least journaling your feelings, fears, and frustrations may help you carry less inside all the time.

There are levels to these things. Acquaintances just making polite inquiries can get a stock answer that is honest but not too revealing. "It's not easy on any of us but they are doing as well as can be expected". Period.

Closer friends get more details and perhaps can help. "We've had a rough week. Perhaps you could come by briefly and see us, I'd appreciate the company". If a few trusted people actually see what youre dealing with you may get better support or even some help.

And you need somewhere to put the whole honest ball of wax, for your own sake. You are under no obligation to either spill your guts to everyone or sugar-coat the situation. But having someplace to go with the raw overwhelming feelings will make it eadier to feel gracious to casual inquirers.

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I go clinical and make oxymoronic responses. (Conflicting ) ''amazingly well and using the oxygen without realising it, thank you '' think up several and do it with a smile.
It will help you survive if nothing else.

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Short answer, just say Thank you. And move right on to another topic.

Or do you want help? I understand if you may not want help from THEM... but if you do, say, "Oh thank you... it's sooo hard and I need all the help and good wishes I can get." That leaves the door ajar for them to ask what they can do if they are so inclined and ...if they aren't, to not repeat that phrase. (Be ready with a simple task like a grocery shopping trip or a pharmacy pickup that you can turn over to them if they do indeed offer help.)

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Caring for anyone with dementia or alzheimers is a very lonely place. Unless they have LIVED the experience, people have no idea what it entails. It's not their fault- they simply have no knowledge. When they say things like you have noticed, I try to just realize that they don't and can't know what it is like. I say something like "it's tough but we are hanging in there". And I agree with others who have said at least they are still contacting you in some way.

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It’s all about perspective as you can see from the varied responses here. It can go either way really. Some times I feel folks are just being polite and other times I feel there’s genuine concern and again that they just don’t know what to say. There are those who don’t ask and I think they too don’t know what to say or it brings their pain to the surface for whomever they’ve lost so that’s ok too. Mostly though, unless you’ve walked this particular road you have no idea what it’s like. It’s not comparable to any other disease. The mind is dying, but the body can remain healthy - until it doesn’t. You look for glimpses of the person you’ve loved all your life because they’ve changed so much they can be unrecognizable. I get wanting to scream and just disconnect, but then there can be days that are just beautiful, peaceful and will stay in your memory forever. They can feel like a true gift from God and you want to shout it from the rooftops - I had her back for a short time today and my heart is soo happy. So, I usually say yesterday (or today) was a good day (or a tough day), but all prayers and well wishes are welcome. In short, do the best you can. I can’t imagine the pain of both parents going through this at the same time. At least they don't have to watch/comprehend what the other is going through, but it’s so much for you to carry. To get my courage up I tell myself when I feel low that as long as mom is not scared and doesn’t realize the journey ahead I can carry the weight for her. Everyone is different, but that gets me through and I see that as my final gift to her. Sending Hugs & Compassion your way.

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Some people just don’t know how to deal with dementia if they have not experienced a loved one with dementia. Sometimes I would like to say walk a mile in my shoes so that they would have an understanding of what every day is like for a dementia patient and those taking care of them.
Every dementia patient is different. I helped to take care of my mother-in-law and we really didn’t have too many problems with her. She was very quiet. I’m now taking care of my father who is a whole different ball game in a dementia journey.
Some people ask how my dad and I are doing and then you get the feeling they really don’t understand if they haven’t been in that situation. Sometimes it’s just better to say we’re ok and then just move on. Until they experience it themselves they will never understand the emotions that we go thru.

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They are probably more right than you. There can be a lot of good times in the late stage of any disease where their condition improves during the peaks and valleys. You should learn to enjoy them and to share your happiness and love with your loved one. If it is all sadness and gloom, you are bringing down your husband/wife/mother/father/son/daughter and making their life less worth living and the dying less worth sharing. If you are really a hands-on caregiver, you'll relive all the good and bad times after they're gone and many times, but your loved one gets only one chance to feel the love that comes from sharing BOTH happiness and sadness during the tribulations. Don't rob them of that opportunity to feel real love and support.

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Say “as well as can be expected, thank you for asking”

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The majority of people want to ask about a person's loved ones who are ailing but actually don't know how so that is pretty much a trademark question. Hope they are getting on okay OR "how are your parents". Well, everybody knows they aren't well but people struggle with finding the right words. My husband told me he feels awkward not knowing what to say. Maybe something like "I've thought about your parents and have hoped they are doing okay" but see, that doesn't fall into your expectations either. We've all been there on BOTH sides. They asked about my mother who had dementia and I appreciated them asking but when I was stressed to the gills, sometimes I wanted to say "come over to the nursing home and see for yourself!!" Yep, I know what you are saying but they just don't know how to ask but want to be polite and most truly are being kind. Just hang on. God bless.

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As long as they are not asking for details, just tell them we are still getting by and thank them for the well wishes. If they persist in asking for more and I've had some do that, just politely decline and tell them that it's personal or you prefer not to. It's an unwritten protocol for soldiers to not ask them about battles and deaths because it forces them to relive those memories and stir up grief. It's probably the same for anyone who has experienced a traumatic death.

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We are in the same situation. It is very difficult to cope with. Are you using hospice?

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People care but just simply do not know what to say and want to let you know they care and are interested. Just say "best as can be, thank you" and talk about something else. Be glad they ask even if it is not the right thing to say. How would you feel if they said nothing? Not good, I bet.

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I think people are being polite and don’t know what else to say. If these are people you know well, tell them that you are living a nightmare. The ones who ask if they can help are people you can probably talk to. The ones who fumble and mumble something like, “I’m sorry to hear that” are the ones just being polite.

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I would suggest a response like this accompanied by a smile:

“At this point it ain’t easy. But thank you for your well wishes“.

If they want to know more they can inquire further and you can go into more detail, or that can be the extent of the discussion on the topic. Sometimes the situation isn’t conducive or the interest isn’t there, but with other people it leaves the door open for questions and answers.

I know it is hard to be carrying around with you the heavy weight of knowing your parents condition and all that goes along with that sad situation. And when people make superficial comments it is a struggle to know how to respond. I think that with the above reply you are honest, you aren’t forcing information on them that they would rather not hear and yet you are giving them the opportunity to continue the conversation.

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Yes, say this: "No! They are not at all well! They both have fatal conditions and are living a horrendous life at the moment." [omit the thank you.]
Get your frustration out in therapy or intentionally connecting with [more] people that DO UNDERSTAND and want to support you.
Yes, people don't think, don't know what to say . . . if you respond with this level of honesty, you are sharing your truth.

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I think responding like this may add fuel to the fire. I truly don't thing people say this to be mean. I was a caregiver to my mom. She had vascular dementia. She did have good days, and bad days. People ask or make a statement normally out of caring. Until one has walked in these shoes they are normally clueless. No need to shame them. Just my thoughts. Been there.

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Maybe just try to think that they mean “as well as can be expected” and just didn’t say it.

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You took the words out of my mouth.

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