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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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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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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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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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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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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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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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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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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 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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