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They go on to add how we should spend every moment with her. That is just not possible. My mother is still with us in her mid 90s and yes, we love her very much. She is in her own home, and well cared for with caregivers and family. I do not want to lose my mother, but the reality of the situation is that we have already lost our Mom. She knows us and interacts, but she is not the mother who raised us. We have already mourned the loss of our mother. I guess it grates so badly because is makes me feel like as long as the body is present, we have our Mom but that is just not true.

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YES! I try to remind myself that this comments mostly come from people who have lost their Moms. Most have not had to serve as caregiver. But occasionally I just want to scream when I hear those comments.
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NeedHelpWithMom May 2019
Me too. It’s complex. Not black and white! Caregivers feel so many emotions. I know I am rambling. Going to the heart doctor today, thought my appointment was tomorrow but it’s today. I don’t even want to go!
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People that had lovely moms that passed peacefully do not understand what the slow goodbye is like.

You are so correct that the body being present doesn't mean our loved one still resides there.
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Please appreciate every minute. Someday you will regret that you felt this way.

I was a caregiver. My mom was very sick for many years. I was with her through it all. Some of her illnesses were very hard to witness. She lived in my house and died in my arms. I would have gladly shared my remaining days on earth with her if she could have lived longer.

It is Mother’s Day and many of us have lost our mothers. Those who haven’t will. To walk through the grocery store or mall, or to even check e-mail on Mother’s Day is terribly painful to those of us who have become motherless. I have friends that must stay home on Mother’s Day because they know the tears will be spontaneous and difficult to control.

Enjoy every moment. Don’t wish for your own life to pass more quickly.

I wish I could sit with my mother in the very painful last hour of her life so that I could tell her again how much I love her and how grateful I am for all the sacrifices she made for others.

Somedays I have a hard time accepting that I will never be able to touch her hand, hug her, hear her voice, or talk to her for the rest of my life.
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Isthisrealyreal May 2019
I won't regret for one second that I am frustrated with and by my mom. You can have her for your very own if you want. You haven't been to hell but she will happily take you there.

Trying to guilt others for their feelings is crummy.
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It seems like many times it's a difference of perspectives. I feel like a number of people who would say things like this perhaps lost their mothers through tragic circumstances or at young ages, and didn't get to watch as time ravaged their minds. Or their mothers were awesome people all around and weren't abusive or narcissistic. I could have been one of those people if not for my experience taking care of my father, which was no joyride. My MIL just passed several weeks ago, brain intact and a truly lovely and caring woman. She was my 2nd mom for half of my lifetime, she was definitely taken too soon. A friend of mine's mother passed away suddenly on Mother's Day a couple years ago, she was in her 50s. And I've lost other friends of our family in their 30s, who left behind young children. So they might also have that perspective.

It's hard to empathize with either side of it unless you've really been in it. Yes, my dad is alive, but damn he really sucks a lot of the time and caused me a great deal of pain. For those who have to watch their parents fall to dementia and Alzheimer's for years and years and see them suffer or be abusive, to do the types of caregiving like changing diapers or dealing with accidents, and constant hospital trips and dealing with the likes of elder care attorneys, Medicaid, facilities, etc....it doesn't seem like one is lucky to still have that physical body present. Like I said, it seems to me personally having been on both sides of this that only those with direct experience in something can truly understand.

But I would never tell someone struggling in caregiving that they should feel lucky or be happy their parent is still alive. That only invalidates the struggles of the caregiver and as someone who's experienced that, I know caregivers need to be validated just as much as the person they're caring for. Just as I would never tell someone who's lost their parent early or tragically to be grateful they never had to be a caregiver for said parent. That would invalidate their grief.
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guiltridden64 May 2019
Yes! This is so true! Your last paragraph is very insightful. I would never suggest someone's loss was a blessing or lucky. My own father died suddenly and earlier than expected with cancer. While our family saw it as a blessing because it saved him from much suffering in the end, we were very careful who we shared those feeling with because so many people we know would not feel the same way. We had talked and said all that needed to be said and made amends if needed.
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Oh my gosh! It’s one of my biggest pet peeves! Or how are about this question, How is mom? They never ask how we are.

I fixed my friend who said both of these! Every time she said it, I said to her, “Well, she is very lucky to have me!”

Then every time she said, “How is mom?” I said, “I am fine.” She repeated it. I repeated, “I am fine.” She repeated once again and emphasized, “I asked you how your mother is?” I said, “I am fine, thanks for asking!” She looked so confused. I smiled and walked away. Hahaha
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Miranova May 2019
LOL!! I know exactly what you mean! A lot of folks would ask about my dad...I would respond "same pain the ass he's always been!". But hardly anyone would ask about me. The exception was my own mother and my MIL. Whenever I'd go to my MIL's, she'd first ask how I was doing, then go down the line...kids, my mom and stepdad, my dad, my sister and niece, my housemate etc. Man I miss that woman!
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The answer is 'yes, and she is even more lucky to have me'.
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NeedHelpWithMom May 2019
She sure is!
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Does it grate on my nerves?

YES, sure does.
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Absolutely it grates on my nerves. However when my Mom was with me and asked how she was doing, her reply was “these kids are lucky” so basically we’re lucky she is alive. I couldn’t help myself so replied to her comment, no we’re not lucky, you’re blessed to be living where you do as you’re being well taken care of. Caregiving can be so stressful but I’ve gotten to the point I’m going to stand up for myself who has been my Moms caregiver for 13 years, as no one else will.
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NeedHelpWithMom May 2019
Yay! Love this answer! I take up for myself too.
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It is hard for me to be around people who rhapsodize on and on about their ideal relationships with their mothers. They have what I longed for and never had. I don't want to cheat them of their happiness or rain on their parade, but I have to admit it really grates. I really don't like Mother's Day. I'm not proud of feeling this way. Ashamed, really.
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NeedHelpWithMom May 2019
I don’t think they realize it hurts. It’s not intentional but still hurts. We are so drained that we can’t always rise above. Not as simple as it seems at times.
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Remarks do work on our nerves. Does help if we know they have good intentions. We can still request that someone stop saying things if they are bothersome and please don’t say to ignore it. Because if something is done continuously then it isn’t easy to ignore.

Having said that, if things don’t change then close that door. I’ve ended friendships with people as a last resort. Took awhile to get to that point but it happens. Unfortunately the woman that I no longer have a relationship with has pushed so many away, even her kids! She tried to manipulate her daughter so much before her wedding that her daughter ended up telling her that she was no longer welcome to be a part of the wedding ceremony.
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NeedHelpWithMom May 2019
Taylor,

It took a therapist telling me that it was okay to be angry for me to realize that a range of emotions are normal with being a caregiver. You are right to say that we have to accept what we feel. I personally feel it isn’t healthy to get stuck in anger, anxiety, depression, anything that can hurt us in the long run and we owe it to ourselves to seek help if we find ourselves stuck in a dark place.
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I think some people say crazy stuff just because they want to say something and they don’t know what to say. They haven’t been through it.

Like when people have said to me, “Do you have a belt for those pants?” Because they don’t want to hurt my feelings by saying that I need to eat and have become too thin. They see my pants falling off but they feel funny telling me that I don’t eat enough. It’s true I have never been a large eater and I know that I am underweight but my appetite is nearly zero these days.

Some people are rude rude though and have asked me if I have been sick and is that why I am so thin. I would never ask them why they are so fat?
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MumsHelper May 2019
I would... "Did the doctor change your medication? You look like you've picked up some weight."
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Yes, it grates on my nerves and I know it is abundantly clear they never had to deal with a long slow decline of a parent who mistreated them. I just shrug and change the subject. If you tried to educate them by saying that it actually is not very lucky to have a parent who doesn't remember one day to the next, it is not lucky to see a parent lose themselves and it is not lucky to sacrifice yourself to care for a parent who shows no appreciation ... well, they would just think you were just being a little *^#*#. (Sigh)
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NeedHelpWithMom May 2019
Ginger,

Educating people is great with people who are capable of hearing it but have you ever tried that with a person who isn’t? Geeeez, a reply like, “They can’t help it. You should be ashamed of how you feel.” Oh my gosh, I have never been a violent person but a comment like that makes you want to smack them! LOL.
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Yes, it does in the moment, because you are so tired...and your locus of control about when do you recapture some "me time" is out of your hands. That is the hardest thing for me: recapturing "me time" means your parent passes on...so then you think, "Am I wishing they were dead, so I won't be inconvenienced?" But after the fact, when you don't have that nebulous, "How long is this going to go on?" hanging over your head, you do feel lucky to have some additional time.

It gets really convoluted until someone goes through what you are going through now. You never really want to accept that passing of the baton where you become the parent to your parent. And most of us have parents who don't want that either.

The best summary I had was from one of my friend's dads who said, "Sometimes the Golden Years aren't so golden." AMEN!
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Yes sadly it does. It is even sad when on occasion someone says during a difficult situation "don't you just want your Mom". Before the words left that person's mouth I found myself saying No.

My mother is not terrible but I have to say not the mother I would have wished for and not the mother I am. This leaves me feeling sad and guilty.

The relationship is so emotionally complicated. She is currently in AL. Yesterday was annoying because we were taking her to dinner and the restaurant was crowded and behind with their reservations. She kept moving her Walker in the direct line of traffic. I had to say I had spoken to the staff and I was doing my best. Frankly she was driving me nuts. I wanted to leave her with my husband and walk home. I didn't care that it was pouring outside.

She now takes medication but applied Christian Science theories to her life and mine. I abhor that religion. I suffered as a child being denied medication when sick. She is very overweight. I don't care anymore what she eats. It has exhausted me for years. I don't wish for her demise but I wonder how long she will continue to go downhill. She hasn't been healthy for decades.

I had bought her a new bra at her request. She told me it was too padded which it wasn't in the least. I now have to go somewhere else to try to find one to her size and needs. It is not easy these days finding truly old lady bras.

Our reservations were for 6:30. She said how nice it was to go out to dinner at that time implying she eats so early at the AL. She has said this before. It is really a dig.

I always try my best to not bring up the negative aspects of my childhood. She was not really meant to be a mother, having been a serious dancer which one would never know now due to the shape she is in and has been for years.

I could go on and on. She spent years in bed during my childhood. When my parents divorced I completely understood my father's desire for such. I was cooking and cleaning the house by myself at 16. I was an only child. She had a late miscarriage after me and I found letters to her best friend with so little emotion on her part.

She just has always been zany. I just came home last night and felt depressed. Sad for what never was nor can be now. She has has an ischemic stroke. That has made her less zany but it is hard to have a conversation unless it is a subject matter she wants to have.

This is all so complicated. I am in therapy and take antidepressants. Only my immediate family can understand my issues with her. I know I am fortunate to not have her behaving horribly as so many here have to live with. I know I will feel awful once she passes. At times I just don't know how to emotionally help myself as far as she is concerned.
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TaylorUK May 2019
You are feeling guilty for not feeling what society thinks we should - or at least professes to - Don't feel guilty, you owe your mother nothing, nor are you required to love or like her. She is the person who gave birth to you - i.e. biologically produced you, which is not something anyone does for the benefit of the next generation they produce. Having done so it was her responsibility to raise you to adulthood so you could be independent. NO other animal on the planet has an expectation that the young will come back at some point to take care of the old. They raise young to go off and do the same for the next generation. You don't have to feel bad when she passes, you don't have to care simply because we are told we should, you may want to fit her into your life somewhere but accept you have the right to feel as you do, and to live your own life not hers - she had that to live as she chose. Anti depressants and therapy help, but you have the answer in allowing yourself to behave as you want and need to and not to worry about what anyone else says or thinks.
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I just want to reply, "She's not that kind of mom..." Blah...
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Lostinva May 2019
Thankyou, Good answer, perfect for me to reply!!
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And I answered, “Yeah, so I can watch her brain rot away, not remember anything or anyone, be incontinent, suffer from anxiety, delusions and anger and die of end stage Alzheimer’s because she can’t swallow or sit up anymore. Yes, I’m SO damn lucky!

That usually shut them up. 🤐
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lindabf May 2019
LOVE this!
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I just have to look at people when they say that. My mother has never in my 70 years made me to feel glad she has me. Never supported me, took part in any of my activities or ever happy for me in anything I did in life. She tattled on me all the time to my drunken father who would beat the crap out of me while she just watched & never tried to save me from it. So no, no blessing she’s still with me. I’m her caregiver, a poor decision but I’m still bitter & angry because she still has no feelings or love for me. I think people should know the situation before commenting like that. Not everyone is blessed with a wonderful mom.
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NeedHelpWithMom May 2019
So sorry. Hugs! I hope you will find peace. Can’t ever erase those horrid memories. I realize that. I do hope your future will have joyful memories. No, nothing can ever take away your pain and I certainly don’t want to be patronizing, no one can imagine what this has been like for you. Again, I am very sorry.
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I agree with you and could not have said it better. It is not our parents - both have dementia and in their 90’s. - still living at home with daytime caregivers. I say ‘walk in my shoes for a week then see if you have the same opinion.’ I am at the house after work every day and have a sister living with them. It is exhausting but we try to give a day to ourselves to keep our sanity. We are all trying our best with God’s help - I get by. But it is exhausting and I “get it” regarding your post.
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My mom died of brain cancer when I was 36. She was only 64. I too used to think that my friend was ungrateful when a she, who didn’t like her mom, would complain about her personality and meanness . I totally didn’t get it because I had a loving mom who was good to us. But now that the shoe is on the other foot I do understand being irritated by those comments. I still have my dad at nearly 98, he hates his life, wants to die, and I want him to be able to be at peace. Doesn’t mean I don’t love him, but I hate what he’s having to go through. I had a friend tell me I should be grateful to still have my dad. People who haven’t seen parents age into dementia do not get it. Nor have they don’t caregiving. I’m 6 years into it now and am tired too. And they say this thinking we will suddenly have an awakening that this is a wonderful situation. I’ve gotten to where I just ignore the comment knowing that they don’t know what I know. Just like I didn’t when I lost my mom.
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NeedHelpWithMom May 2019
Harpcat,

You are very wise. We all need to follow your advice.
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I keep running into this problem too. "Your mom's not going to be around forever" , "Enjoy all the time you have left with her".
Well . . . when is it my time???? When I lived on the West Coast I was forever running my father to doctors appointments 3 hours away. He passed away 4 year years ago. I moved out to the East Coast so I could enjoy my later years. Now my mom moved out here and she is the most negative person you can meet. Always has been. I cringe when I see her eyes get big, I know something negative is about to come out of her mouth. This is an everyday thing when I visit her. It brings me down and steals my joy.
My father and her retired early and was able to enjoy each other for many years. I have worked full time all my life, raised 2 kids on my own and am now 61 years old.
I am tired. I have another brother who lives far away and my sister is always on the road with her husband, so again it is just me. How can I be so grateful when I feel so ugly when I leave her house. I love her but sometimes I just cant take it. Years ago I wrote her a letter tying to tell her to be a more positive person. I don't think she ever read it.
I am so burned out and still working full time.
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NeedHelpWithMom May 2019
A lot of people are in this situation. Very difficult. Hugs!
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Hell yes it does- skips my nerves and goes straight to my core!
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NeedHelpWithMom May 2019
Love your answer!
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Yes i get very irritated as well. Mom lives with me and several of the women at church have lost their moms. They treat mine as their own and it does help sometimes. Wonder if your folks telling you this have thought about visiting your mom. Just a short visit so they can enjoy “ the Mom experience “ again?
You have to do what meets your heart - your mom is there, you’re doing the best for her. Sometimes i just agree with them and move on. I refuse to get into discussions about if i am doing all i can for her. For one thing, not all of our moms were great to us as children. Sometimes they were horrible. So instead of going there and telling all of my angst about a bad mom - I do remember all the positive things she did do and the fact she was faced with many challenges trying to be married and raise a child. I remember she is my mom and i am the only one she can rely on. I don’t want to mistreat her and i have forgiven her. So i just agree i am lucky, that there are challenging days but we are lucky to have each other.
Usually taking this positive approach lets them share how much they miss their mom and then we move on.
If you had a great mom, then know in your heart you are doing all you can and no-one knows what is best for your mom except you.
This is the hardest thing we are doing now and still being part of your family’s life and your independence. I also have started to write my day / her day down. This is helping me see the good and sometimes funny moments and be able to tell my well meaning friends that “yes, I am lucky. God is good and I am blessed to still have my Mom.”
Then I move on to something else.
Nice to know someone else has the same experiences and feelings.
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Wow,

Glad to know I am not the only one.... Sad to say, my "mom" has been gone for quite a while... She is still living, but not the mom I knew.... I had to come to terms with this rather quickly & it was heartbreaking... Mom has been in a nursing home just a little over a year, and she is still not acclimated. Ever time I go, she wants to know why she cannot go home (even though she does not know where home is)... It is very sad & hard to deal with. There is never a nice visit... I always leave upset. She has dementia, is in a wheelchair and cannot stand on her own. Need help with everything.. It got to be too much for me, so we had to look into other options. She blames me for everything, but I know she is safe & cared for. I feel the same when people say "you are lucky", it does not seem that way, because she is not happy (even if she has a good day at activities, she will not remember it.) I just try to be positive and do what I can. You are so correct with the part about having already mourned your mom, same with me....
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Lymie61 May 2019
Not going to give you your Mom back whole and I totally relate to what you are saying. Dementia patients often are talking about another time and home even from the one they last left so don't take her wanting to go "home" as something you could actually accomplish for her by taking her to your house but have you tried setting up her space at the NH like the bedroom she lived in longest or might remember most? Maybe a special chair she loved next to a table that was always that way or a bedroom set in the same placement it always was, photos on the dresser or wall where they always hung. Things that make the area more familiar and less obviously a hospital type setting, a scent even did her drawers always smell like the sachets she kept in them or her house like the potpourri or cleaning solution she always used. Did she always have a particular plant or plants in general? If you haven't tried this you could have someone take her to lunch in the dining room or out, whatever you do, while you set up her room with these familiar things in a familiar way and then take her "home" and then when she asks to go "home" and she probably will you can just say "we are home, see here is your stuff". It may or may not help but perhaps feeling a familiar setting will at least calm her worries and make some sense when you tell her this is her home? Depending on your mom of course, if it becomes clear she is talking about a previous home you can remind her that was sold or whatever, years ago or The Anderson's live there now, you know what I noticed last time I drove by?...sometimes changes to the place help us feel less current attachment and be satisfied with fond memories of the past, sometimes not.
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Many people say that because they lost their mom when she was in her 50s, 60s, 70s, 80s... I am very envious of people who still have their mom in their 90's. I would be glad to have my mum even in that state of Alzheimer's.

You never lost your mom until that moment of death occurs.
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worriedinCali May 2019
It’s not your place to tell someone when they lost their mom. Saying “you never lost your mom until that moment of death occurs” is about as bad as saying “at least you still have your mom”.

If someone here says they lost their dementia/Alzheimer’s stricken mother to the disease, then they lose their mom to the disease. End
of story.
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Yes. And because she seems so sweet to others when we are out, they have no idea of the mean spirited person I "get" to help. DH and I have made the comment that it's a shame we lost his dad 20 years ago, caring for him would have been a pleasure and he would have appreciated it. With her, it's just sucking the life out of me and causing so much grief for my household -- and she doesn't even live with us! If she were sweet, kind and appreciative, I might feel differently, and I figure that those who make the comment, had that kind of mom/MIL.
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NeedHelpWithMom May 2019
Calico,

Oh yes, pour on the charm in front of others then we look like the bad guys. We know the behind the scenes crap. My husband had a grandma from hell that I helped care for but in front of others she was as sweet as pie!
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Give the honest answer, "No, I've lost her to Alzheimer's, just her body still lives.".

I have found that most of my stress comes from what is inside me not matching what is outside of me. The better I get at communicating the inside reality to the outside world the more at peace I feel and the better I cope.
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NeedHelpWithMom May 2019
I like your attitude. Love your answer. Good advice. Thanks.
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I know exactly what you are talking about because my mother died last summer at the age of 95 and I felt that she lived too long because she was not the same person and had some dementia & was taken advantage of by the “gang of three” younger siblings. (It’s like one woman said to me about her husband, “Why do they always end up trusting the wrong people?” So very true!)
My mother couldn’t remember anything so she wrote everything down on post-it notes. (I bought her a huge stack at COSTCO.). She wrote down what she ate for breakfast, when she had her bowel movements (too much of that stuff 🙄), what time she got up what time she went to bed and on and on. It’s agony for the primary caregiver(s) because you are always in trouble and always doing “it” wrong. God bless you because I can relate and even after they are gone it’s difficult to separate who she was and who she became. So sad.
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DianneGee May 2019
You helped me feel better. In fact many responses here have helped me. Nice to share how we feel. Even when it changes by day sometimes, it helps to know others have the same frustration.
This is not easy.
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You know, it’s such a stupid thing to say to someone, “being lucky.” I suppose that it makes them feel better to say it. I think they honestly think that they are helping us by saying this remark, thinking that we will flip a switch and have a different perspective on it. Doesn’t work like that. For those of us who are realist thinkers in our caregiving, we absolutely know that ‘lucky’ isn’t the word we would use to describe our caregiving experiences.

People say remarks out of ignorance. We have two daughters. Went through years of infertility. So the first daughter we adopted, the second (surprise 7 years later) was biological. They are both our miracles! Both loved the same. People would say to me after we adopted our child how “lucky” she was to have us for parents. I politely told them that we were the lucky ones to be blessed with a beautiful child.

I volunteered with our local auxiliary, served on the board for years. I did outreach work in high schools. I attended countless seminars on adoption. I can tell you with education today, adoptive parents feel as I do, very blessed indeed that birth parents selflessly placed their children to be loved by others because they were not able to do so themselves.

There are many misconceptions about so many things, adoption, caregiving, just tons of things and people mainly through ‘old school’ thinking make ignorant remarks. It’s why I made it a point to volunteer and educate others as much as I could.

I don’t see the point of just whining about something. Make a difference in this world! Do something about it. You won’t regret it. I don’t. I wanted to set an example for my children. They both volunteer in causes that matter to them.

I suppose the bottom line is that some people are able to be educated and by all means take advantage of that opportunity but some people are close minded or do not wish to learn or unable to be educated and then us trying to reach them is totally futile to do so. I personally feel sorry for them. Sure, it may anger us but we cannot afford to allow ourselves to become stressed or sick over it. We as caregivers have enough on our plates.
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Yes, it's one of the phrases I hate. I think people just try to fill up awkward moments with phrases they've picked up through the years. I don't think they really put a lot of thought into the choosing of the words.
The top of my list of worst palliative phrases people say to me is, "He seems fine to me". Really brings out the grrrrrr in me. I try to remember that they are speaking solely from their ignorance and that they usually mean well.
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NeedHelpWithMom May 2019
Know what you mean. Happens all the time.
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I still have my mom but even if I didn’t, I would NEVER ever tell someone “at least you still have your mom”. I find that people who make those sort of comments are doing it out of ignorance and because they are generally unhappy and bitter and perhaps resentful. Some of them are well-meaning and are trying to put things in perspective BUT they either say it at the wrong time OR they say it the wrong way & then come off looking holier than thou & making the person feel guilty! Some people just have that personality type I guess. I sure don’t. I’m not the type to tell you that “it could always be worse” and “at least you still have your mom”. I totally understand wanting to get people to view the situation from a different perspective but so many people just go about it the wrong way!

its like the posts here where people are venting about how hard it is to be their ailing parents caregiver and how they regret making the decision to take on that roll. There is always that ONE PERSON who has to say how much they loved being being. 24/7 caregiver to their parent, how it’s the best thing they ever did and that the complainers should enjoy it too!! Wrong time, wrong place for that! When people are expressing their frustrations as a caregiver and how burnt out they are, the last thing they need to hear is how much someone else loved it and it’s the best thing they ever did. What they need to hear is that their feeling are valid and that it’s ok to feel the way they do and that they are not alone.

Telling someone who’s mother has advanced dementia and not the person she used to be “at least you still have your mom”, is just heartless to me! It’s ignorant! It’s cruel. My heart really goes out to anyone who has been told that. I can only imagine how hard it is to go through that with your mom or dad, when they are no longer the parent you knew, they can’t take care of themselves and they don’t know who you are. When their quality of life is non-existent. I really can’t understand what kind of person would tell you “at least you still have your mom”. Like you are supposed to be greatful your mother is still alive! I just can’t fathom it. I can’t fathom telling anyone to be thankful their parent is still alive when they are suffering and have no quality of life! If only people would think before they speak....
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NeedHelpWithMom May 2019
Yes, yes, and absolutely yes!!!
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