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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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I understand your feelings and admit to feeling the same way when my 93 y/o mom was still alive. She wanted to die and I wanted her to have as peaceful a death as possible. I was ready to let her go and when she was in her last month of life, her assisted living care givers rejoiced in each rally day while I felt deflated. I had already mourned her death and felt the body was just an empty shell. I can't give you any advice on how to deal with comments like you are hearing. Just accept that the person means well and move on.
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anonymous828521 May 2019
Well said Kathy4117, so true 4 many of us.
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Sending lots of love to the op ,,we all tolerate life’s situations differently and you are ok to feel the way you do ,,I hope your not offended by my comments I am still grieving deeply for my mom and sister ..so I hope you will over look any comments I made to this post ...i hope things get better for you and I wish you well ,,,you will always be in my prayers and I’m sending extra hugs 🤗..please accept my apology from a lost grieving daughter
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NeedHelpWithMom May 2019
Don’t ever apologize for grieving. It’s a natural and healthy part of losing someone you loved so much. Hugs!
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I’d give anything to hear those words again ,,my mom died in July 2018 of Alzheimer’s and she was my best friend..her death nearly killed me I had a stroke when she was dying and it was late effects so I felt it after ,,it was a stroke in my cerebellum and I am a RN stroke certified but I was in such shock she died I never realized I had a stroke ..,my sister died suddenly 5 years prior of a PE at age 49 years old ..so mom never got over it and she declined over the past 5 years rapidly after the funeral ,,,..anyway it’s a long story ,,but mom passed away and I’m still lost ,,,I work at the same hospital my sister worked we were Supervisors together but in different units and my mom died on my sister’s old unit which was ok. ..they all loved my sister there and mom got the best hospice care her doctor is the medical director of the hospital and knew mom and my sister well and me ..and he took over her hospice care God Bless that Dr ..anyway please cherish your mom while you have her she isn’t gonna be around much longer ,,kiss her , love her and if she gets nasty , kiss her some more ,..love to you all and yes you are so lucky to have your mom ,,I wish I could kiss mine once more
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NeedHelpWithMom May 2019
She knows that you loved her. I am so very sorry for your loss and also for the decline in your health. I hope you are doing better now. Hugs!
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Somber thought of mom since she loved the National Memorial Concert which will be next Sun,
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SnoopyLove May 2019
Shad, I hope you enjoy the concert either in person or thinking about your mom's love of it.
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Thank you for the reminder redsnappa7764:

"....Look at it this way, you can STILL hold her hand. When she's gone, you CANNOT hold her hand.....A person that gave you life and this is the hand you were dealt. It's no ones fault. Hold your Mom's hand while you still can..."

I'll go hold her hand, now.
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Reading some of the replies below, I wonder, who said anything about abuse? Sure my Mom went through a very angry, aggressive phase with the dementia. Now she's settled down and is very loving and more even-tempered. It's the situation that is the abuse -- the lack of one's own life in service to the deteriorating parent.
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ohmeowzer May 2019
Yes my mom went through that too ,,and she got mean ,,,but I knew what it was and it wasn’t my mom ,,but I loved her so much ,I’d kiss her anyway ,,,oh I loved my mom she could be mean and abusive ,,but I always pictured her as she was in the past a good sweet kind person who was a nurse over 54 years and I am a RN and knew she would be like that ,,,so I loved her anyway ,,,I fed her and hugged her and loved her ,,,she was my mama and I knew who she really was ,,,and I’d give anything to have her call me a name again ,,,I miss her so much ,,my heart is broken ....I just got past all that and held her a hand and loved her ,,I am glad I had enough for caregivers for 12 hours a day when I worked at the hospital and when I was home on my 4 days off I took care of her around the clock ,,,I didn’t mind ,,I loved her ..and I take care of people for a living so it is what I do ,,she had no bedsores and was perfectly nourished ,,,my best mama ever , I miss her and it was a honor to take care of her ,,grant you she and I had our battles but we always hugged afterwords,,,yes mom was very mean at times and I expected it so I just loved her ,,she didn’t want to be like that
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You have so beautifully expressed what I feel -- that I have already lost my Mom and that I have already grieved for her loss for years - and still grieve for added loss each day. My Mom is 99 and has had dementia for about 10 years. She has lived with me for nearly 3 years. I'm exhausted. When someone says how "blessed" I am to still have my Mom, I feel like telling that person that it would be a blessing for my Mom to pass away in her sleep and end her absence of a quality of any life and the destruction of my life.

I'm "cursed" with the hard work, anxiety, and stress of being the sole caregiver 24/7. I ache when I realize how much my Mom has lost -- her eyesight and her ability to read and enjoy t.v., her memory, her ability to drive anywhere she wants to go, her ability to go shopping, her own home, her comprehension, and her understanding. She's everything, except for me. It's heartbreaking to see one's parent disintegrate over the years. This is not what I call a "blessing." At 72, I'm scared of actually being alone -- for the first time in my life. My Mom and I were best of friends. But it's time. I'm ready.
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ohmeowzer May 2019
I agree with you it was beautiful what you wrote ,,,and when mom died my world was broken again . My sister died 5 years earlier at age 49 of a PE and now mom ,,,my 2 best friends gone ,,Thank you for your lovely post you are all in my thoughts and prayers
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This person may seem out of touch with what you are going through, and you're probably correct. I've a feeling they themselves are missing their Mom deeply and that is the meaning behind the statement. You don't need to point out to them how put upon you are....They don't know what you're going through exactly -and you don't know what they are, so just let is slide. Unless you really want to educate them at how lucky they are their parent died so young and quickly and wish to share your misery....let it slide.
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Dear guiltridden64,

Your feelings are understandable. It is hard. Caring for an elderly parent that  is losing control over their mind or body or both is very hard. I don't think people mean any harm but it is frustrating to a daughter or son that is overwhelmed with caregiving. No one knows till they walk in someone else's shoes.

Please know we are with you. Thinking of you.
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Speaking as someone who has lost her mom, yeah, it used to bother me a lot. Even though people knew I had come home to care for her in their minds they seemed to picture her as the woman she once was, not the shell of a person she had become.
And no, I wouldn't give anything to have her back again, not as she was at the end - that would just be too cruel for both of us.
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How about those that had loving parents reliving "anniversaries" of the final months days and time of the death of their loved ones. They probably wish their parent (s) were still alive.
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No it doesn't get on my nerves because I know they are right. It makes me fearful because my mom is 91, and for the past 63 years I have never been without a mother either in body or spirit. I am afraid of the inevitable; afraid I won't be able to cope and afraid I will never know unconditional love like that again. I know this isn't the answer you're looking for but I just felt I had to say what's in my heart.
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jacobsonbob May 2019
Salutem, any sincere and respectful answer is welcome on this forum. I hope you are able find additional supportive relationships while your mother is still alive. FWIW you have the people on this forum who care. Thanks for your candid response.
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"You're so lucky to still have your mom"... Yes, I do detest hearing that stupid comment from folks. (It's likely those who have never been a caregiver for anyone in their lives). I guess they do mean well though. (&I'm sure I've been equally insensitive, in other ways).
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jacobsonbob May 2019
I think WE ALL have been insensitive at times...
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Many folks, maybe the VAST majority of the world's population (though somehow I doubt it's truly vast), have NO idea what it's like to have been born to abusive parents, or to be subjected to constant abuse from parents whose conditions have caused them to become severely abusive.

Back in the day, people tended to die quickly from "old age." Now? People can live on into their 100s ... but ... all too often, they exist in horrific shape, physically and mentally. Destructive personalities tend to become even more so. And good people may transform into something intolerable, through no fault of their own.

In such cases, caregivers can love and cherish their hearts out -- but the outcome is still unhealthy for both parent and adult children. For all concerned, separation is necessary.

Guilt trips, especially from outsiders who have never lived with abuse? Not only unnecessary, but unnecessarily cruel.
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Lostinva May 2019
I tell friends of abuse, they don’t get it. Their response, “ I can’t believe your mom was like that, she’s so sweet!” Oh barf!!! Sweet to strangers, not those that care for her 24/7!!!
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Another thing, at least your mom knows you. My mom doesn't know my dad anymore and it's depressing him terribly. 64 years of marriage and she hits him if he tries to get in the bed with her and has pushed him out of the bed twice! He's 85 and still has his mind. It is a blessing that your mom still knows you. And no it's not fair that this has happened to us but what else can we do? Just keep loving her because we never know what tomorrow will bring. Best wishes.
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NeedHelpWithMom May 2019
red,

Sorry your situation is so hard but everyone has their own situation and we all have a right to feel as we do. I realize it’s tough for everyone as a caregiver. I’ve been at it for 14 years. I do think ALZ would be the worst. My mom suffers with Parkinson’s disease and it’s rough but ALZ in my opinion from what I have seen from others is much tougher to emotionally deal with. Again, I wish you did not have this issue in your life.
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Your question on here irritates me. Yes there is a difference between your Mom being alive or dead. Look at it this way, you can STILL hold her hand. When she's gone, you CANNOT hold her hand. She's still a person. A person that gave you life and this is the hand you were dealt. It's no ones fault. Hold your Mom's hand while you still can. God bless her soul.
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NeedHelpWithMom May 2019
Please don’t judge the OP. She is just as entitled to feeling as she does as you feel the way you do.

That doesn’t mean that you have to agree but maybe next time bypass the question instead of making a point to tell her that her question is irritating. Kind of rude, don’t you think? Would you like someone to call your question irritating?
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The one I hated most was “you look so much like your mother”
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Lostinva May 2019
Ugh, hate that too!!
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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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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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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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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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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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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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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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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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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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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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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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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 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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