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My 84 yr old (soon to be 85) mom is now in mid stage dementia, although I don't know that her ALZ has progressed that far. Still, she doesn't want to be here. My stepdad passed 9 years ago and she's been grieving for him ever since. She periodically has vivid dreams of him standing by her bed and telling her he's coming back for her soon. Sometimes she seems frightened by the dreams and other times she seems to be looking forward to it happening. Almost every day she says she's lived too long and/or she's tired of living.


And I ride a roller coaster of emotions. I love her - well, I love who she used to be before these terrible conditions started to remake her. She was vibrant, a bit vain (she was beautiful when she was younger and people still comment how lovely she is for her age), active, involved, secure, confident, smart.... Now about the only one of those adjectives that still fit is vain! LOL. Now, though, she's insecure, staid, reclusive, anxious, depressed, losing grip on reality, losing her ability to take care of herself, losing the desire to take care of herself. In the 7 months since she was officially diagnosed she's mentally, emotionally and physically declined tremendously.


And as for me, within almost the same heartbeat, as I wait for her to wake up in the mornings, I half hope she'll have passed peacefully in her sleep and then am terrified that she did and I've lost her. I worry that I'll grow to resent who she becomes and who I become from burning out as her caregiver. I worry that my daughter's only real memories of her grandparents will be of her Papa declining from Parkinson's during her teen years and her Sasa declining from dementia and ALZ 10 years later.


Tell me I'm not alone. Tell me I'm not horrible for wanting this to end before it gets worse. Tell me it's okay to miss my mom even when she's standing in front of me. Tell me its normal to want to grasp her as tight as possible before she slips further away.

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You must be reassured by the overwhelming response to your post that you are very much not alone but are just 100% a normal loving and scared and tired human being.
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My children were young when my dad was diagnosed with AD, so they never knew him as he once was. But they still have little jewels of memories of time spent with him. They're also more compassionate and understanding because of being with him. They would do little things like turn the light on for him before he entered a dark room. Or getting out the Play Doh to play together.

It's all okay - missing who your mom was before AD, hugging her tight and having her feel loved in that moment even if she doesn't remember it later, and wanting them to be spared the indignity of this illness running a full course. There are no wrong feelings here...they're all valid and important.
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Kirahfaye...
Yes! Grasp her as tight as possible and just remember that this is not the true essence of your mom. I am going through something similar with my 95 yo mom, but she was not wonderful when we were kids, in fact my 4 siblings have stayed away from. The relationship with my mom has miraculously changed for the better, because I changed. I love and accept her as she is now, for it is just her physical form that is transitioning. Model for your daughter what it is to be loving and caring, no matter what. She may be in your shoes someday. Bless all of you, friend.
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You have my heart felt sympathies!! I went through very similar experience, when my mother had died. I lost my dad as well & it was all down hill from there. I understand how painful it's to lose a parent that you love. You are already in the grieving process & IT HURTS. You are preparing for the unescapable. All your feelings are just fine & normal. When, my dad was so sick & just about at the end of his life. Every time I saw him, I could barely handle it & it took days to go back. I couldn't bare the pain of his slipping away right in front of me. When, he did pass, although the hospital was too far for a run, grabbed my coat to run the distance & check on my dad. My husband had to grab me & hold me back. The pain has soften, but it is far from less. What you are going through is normal. Don't feel guilty over what you are feeling & be kind to yourself. Do what you have to do. Know, you are going through a very emotionally taxing time & don't be too hard on yourself!!!
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Dear, I too thought this post was written by me. We’re watching someone cross over to the next life where this decaying body will be replaced with a new spiritual one. Treasure each happy and good moment. Breathe through the bad moments. This is a season that we must endure but one day, we will move on.
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Your story could be my story, and I am sure many of us feel the same way. Its so hard. Try to remember the good times with your Mom. Caregiver support groups help!
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No, no, sweetheart, you're MOST certainly NOT alone!!! As a matter of fact, while reading your post, I had to go back to the top to see if it hadn't been MY post! I especially related to the part where you said you wait for her to wake up, yet sometimes hope that she's passed peacefully in her sleep.

I KNOW EXACTLY of what you speak, with the exception of my not having children to have to explain it to. She does, however, have another child (my brother), and by extension, three grandchildren, and eight great grandchildren..... NONE of whom choose to either speak, write, or otherwise communicate NOR care for her on any way. So.... It's ONLY UP to ME to care and communicate with her (I've been living with her since 2006) and I can definitely relate to burn-out.

I WISH I could give you words of encouragement but I'm afraid I have none to spare. I do, however, wish you the best of luck and strength!!!
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Hi kirahfaye May GOD bless you !! "Yes !!! It's normal and not to be ashamed of..these are the same thoughts we share I feel the exact same way my mom / dementia will be 87 in November was a stunning brilliant woman still attractive who started her own business was very successful and always vain.I never did anything good enough to please her. I think about her passing away my emotions get mixed up..I check her breathing when she takes naps . What kind of thoughts are these that we cannot bear seeing our Mom or Dad mind and body decline lost in a sad fog.. I ask myself okay she is not the same person at all. She cannot do many things anymore. She is confused talks alot a mess, is messy, nasty incontinent. Almost a baby ..She's a burden she's stopping my life. She's sucking my life out of me. I'm annoyed I cannot have a real conversation with my mom. I miss my old mom. She's been gone for years..BUT I would miss her so much if she wasn't here. Her voice is still a familiar song . And at times comforting.. she calls me Sissy.. reminds me of my daddy too.. It makes me cry to think about not hearing it anymore..or her bumping around her looking for ice cream.. I think about what kind of services for my Mom all the time ..My beloved father worked hard all his life he never really retired before copd took his life. I miss him so much. He always uplifting me and gave me confidence. My mom was jealous of our closeness. All she cared about was my two brothers.. especially the firefighter who visits about 7 times a year who lives 30 min away. He hasn't done a thing to help my mom in any way since our father died in 2002. My mom shuffles around here up all nite confused lost at times she's looking for my dad or think she's in someone else's house. She yells " who is it? And who's at the door wanting food.. Slamming doors keeping me up all nite till 5 and the walls are closing in on both of us I have the exact same thoughts as you. When will she be at peace..? Only GOD know the answers. May GOD comfort you and give u strength..many blessings.
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Yes that is normal. I am one of 8 siblings but one passed away at age 60 due to dementia (possibly Lyme mimicking it) but my Mom was diagnosed at age 65 (very slow progressing dementia) and now she is almost 84. We have all had to live with ALL the stages they go through for years and years and its very painful. Now she has had some seizures which leave her comatose and sleeping a lot during day. She used to be more aware and she does have some good days smiling (although its been years since she could really talk or know who we are) but I do believe we are "familiar" to her. With this latest stage.....we all want to same as you said-for her to die sooner then later peacefully in her sleep. She would not want this, its hard for all of us. Not to mention that all siblings don't agree with her care to the level of -should she have physical therapy? She sleeps most of time and I get you want quality of life for them while they are still living but to what extend are some siblings just wanted her to be better, healthier which won't happen? A big dilemma you run into the longer they live.....and you see big declines. I dont know if this helps but your situation reminded me of my Mom who was very beautiful, lively, loved to dance and music and very giving to all of her family that to see what she is now, its sad. I keep praying Gods timing is perfect and that I am hoping its sooner then later. I tell my Mom she will be in heaven as soon as she is ready and that God loves her. I do believe she will absorb what I say to whatever level God wants as He is the one in charge.
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As so many as so many have set before me you're not alone and believe it or not things are going to get better hang in there God be with you.
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You are not alone.
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Everyone's comments (nearly) have been very helpful and consoling. I appreciate it. My mom has a "oh, well, I have dementia and can't remember things" attitude at this point. She's well past the point of getting upset over it and is happy that she hasn't forgotten any family or friends. She has forgotten how my stepdad passed (which is fine as it was traumatic for her). She also fabricates memories that never happened. It's becoming harder for her to do things like use her cell phone or the microwave. After an incident last fall where we came home to find she had turned on a gas burner without lighting it, she hasn't been left alone since - and she's not thrilled that she's being "baby-sat". I know this will continue to get worse. What a horrible, horrible condition....
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I feel exactly the same way. Mom has declined significantly in the 2 years since Dementia suddenly appeared in our lives and became part of our vocabulary. Diagnosed with Alzheimers and possibly Vascular Dementia, she has gone through a few stages of behavior. From anger to the endless, repeated questions of a couple of months ago, she now seems to be in blissful ignorance. She lives in the moment, like a small child. Knows us still, and happy to see us, and fine when we leave after a visit in AL. It's weird because this stage is easier on us, but harder at the same time. Because I see her more and more being swallowed up by this horrible disease. I too fervently hope she passes peacefully in her sleep before it progresses further, because you know it will get so much worse, physically too. I say that to my family and friends all the time. I'm admitting that wish to everyone, because who would want to live through that. Not my mom, I know that. Not me. Thank you for your post and sending a hug.
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Hi, you are a good daughter who loves her mom very much. She is so lucky to have you and your family. You are not alone in how you feel...stay strong for mom..she knows you are taking care of her.
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I call it pre-mourning someone with dementia - it is the reverse of seeing a child grow up & meeting milestone but here they loose milestones - you are not alone as many of us have been there & unfortunately many more to come
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You sound a bit morose as if your mother was going to remain the same vivacious person she was when she was younger / get a grip.
We all go through bouts of feeling like you do - and it is never easy but we do it because of what they meant to us and the fact they should have some dignity in their remaining days!
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kirahfaye avatar
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kirahfaye Sep 2019
I think you misread my post.
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This could have been written by me a few weeks ago. My mom passed away last week at 93, she was slowly fading away, ended up spending a few days in a nursing home, heart was failing, in her last minutes she confirmed she did not want CPR. I am sad but at the same time I know she was ready to go, she had been saying it for weeks. My biggest disappointment is that I was not able to have hospice accept her in time for her to return to her facility in time and she passed away in a strange nursing home alone. Make sure you have your mother's affairs in order and a living will and look into hospice care, then you will have less pain and guilt, but know that you are human and there is only so much you can do.
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Billygoat avatar
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Billygoat Sep 2019
Sandy/Renner:  I sympathize with your situation, too.  I would not feel regret for not having your mom in hospice. I REGRET every single day putting my mom in hospice...every single day.  It was THE worst decision ever!  It was a nightmare.  I witnessed my mom in excruciating pain every minute...day and night. I slept there with her and while she was unconscious the entire time, it did not stop her from screaming out in pain.  I have nightmares to this day of what transpired with Hospice.  We were promised her pain would be kept under control and it was nothing but!  So, bottom line, you did the right thing.
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This is one of the hardest things you will every have to go through. I am going through something similar so I can relate. You are feeling grief right now and it is confusing. You are not alone, dear one. What you are feeling is normal under the circumstances. God bless you.
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You are definitely not alone. It is an emotional roller coaster for sure. Many times I cried out to God on behalf of both of my parents because it hurt to see what they were going through. Like your parents my dad had Parkinson’s and mom had dementia. It was devastating to watch their decline to the point that every day became a struggle. My heart broke when daddy started his day by saying “maybe today would be the day.” He was looking forward to it. Moms dementia accelerated quickly after dad passed away. She was such a happy person and it was so hard to see that dementia had turned her into a confused tormented very unhappy she’ll of the person I once knew. I too missed my mom even though she was right in front of me. Dementia is a terrible thing because it slowly steals them away until neither of you know each other. The mom we knew was long gone way before they left this world and I too missed the real her. Every day became worse until finally I started hoping she could just slip away in her sleep and not have to endure the torment in her mind. My parents were such good people to us kids and to everyone they knew and I couldn’t understand why God would allow them to go through this horrible struggle in the end. I even got to the point that I prayed he would take them home even though I didn’t want to lose them. He eventually did but neither was quick and easy for either of them. I finally realized in the end that God was not doing this to THEM... he was allowing it so that it was easier for me to let go.
You should not feel guilty for those feelings of wishing they could pass in their sleep. We tend to think that’s selfish but that is actually because we love them so much that we don’t want them to suffer even though we don’t want to lose them.
Be kind to yourself and know that your thoughts are normal. You are not alone 🌹
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Very similar situation with me. I just spoke with my husband about my conflicting emotions. My mom at 95 is slipping and I go back and forth with wishing and hoping. I imagine her just peacefully falling asleep and going. And it’s terrifying to think about her being gone. She spent so much time with my son when he was little but he only remembers her as she is now. That saddens me. You’re not alone.
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Wow. It’s crazy how stereotypical this disease is. I feel the very same way. Thank you for your honesty. I feel horrible for feeling this way as well. My 82 year old father is her primary care giver and I see it sucking the life out of him. I’m already gonna lose one parent and I don’t wanna lose both. I miss my mom already and she’s still alive but she is only a shell of who she once was. Thank you for sharing. Hang in there.
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You are not horrible, I have these feelings a lot. My mom is 95 & has been in & out of hospital & rehab since July. She fell 1 day after she got back home at broke her hip. I was surprised that she got thru surgery, but she made it.  Now the rehab is trying to have her go home again but she is having other issues. She has only medicare & medicade  & Im struggling to find a place that wont be horrible. I have 3 brothers but no help from them. She calls me early & wants me there all day. She cannot see very well or hear very well so she likes to sit in the dark all day. I feel like life is passing me by even as I try to be as kind to her as possible.  She is very cold and only thinks about herself. Ive been taking care of her for 10 years & even if she gets in a decent nursing home...I know I have to clean out her jammed apartment.  I struggle everyday to get out of bed and feel guilty if I wish her be out of misery. She says she wishes she was dead but I don't think she means it. Lately she has been asking me to feed her as well which I have been doing but Im struggling. Luckily I do have a sweet husband to come home to but he wants his wife back.
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Jellylava avatar
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Jellylava Sep 2019
I went through a similar experience with my mother until her death in 2018. I don't have any advice to offer but I want you to know that I sympathise and can understand your feelings. I send you many hugs.
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Absolutely normal and it is ok! I went through the same roller coaster of emotions over the last 8 years as we cared for my Mom and she declined. You are not alone and do not feel guilty for those feelings. There are many days you will feel the drudgery of thinking you will not be able to carry on another day, but you will - as did I. I felt as though I was losing a huge chunk of my life, but you are not. It actually enriches your life and helps you to appreciate the little things more. You need to enjoy what is left of her no matter what stage of the disease she is going through. She would have done the same for you, I'm sure! Try to find simple things she will enjoy doing that will help her brain to keep working - my Mom liked to do word finds for quite a while - that went away toward the end, but enjoyed while doing it. Do little crafts where she can see something you've done together - it will bring both of you joy! During Mom's last year we had to place her in long term care as she needed 24X7 care and l still work. So when she stopped enjoying bingo, crafts & word finds - we turned into art critics and went around critiquing the artwork in the facility - others would join us. You need to find the fun that's left as there is some - you will remember, she will enjoy and your kids will see how to care for someone in that state. Both my parents suffered from dementia and that doesn't bode well for me, so I set an example for my kids. Find humor where you can - even if its joking about the silly things she says & does. My Mom would see her mother and my Dad - most scary was the woman in black who she said wouldn't speak with her until Mom told her to go away. She had a guy eating pizza in the room one day at the facility, I said what room, she pointed to the bathroom. I said would you like some pizza, she said OH YES! So I got her some - she said it smelled just like the pizza the guy was eating. You see, there is some humor there. I visited her every single day of that year. Enjoy what you have & find comfort in knowing that you are doing all you are able. The blessings will rain on you! My best to you & stay strong - you'll get through this!
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You are definitely not alone. I'm going thru the same thing right now. Everything you put in your comment, we've either gone thru or; in my case; going thru right now. I just started seeing a therapist and a few things are coming out as we talk thru what's going on, how I'm feeling and well a Lot more than I thought that would be connected to being Mom's caregiver. Without going into details, I'm being told by her and my Mom's 3 Drs. that I need to move; for My health. That's months away yet but I'm hoping that talking to my therapist will help me divert some of the stress, help me get things back in order with me and in turn make it easier to take care of Mom. If; and that's a big IF that works; I might not have to move. Being able to read what others are going thru or have gone thru IS helping. There are a Lot of great people her and counselors whose advise has helped me and will help you. I still strongly urge you to find someone to talk to, weekly like I do; to help you keep an even keel before you get as overwhelmed as I am. She made a point that I missed here: If you don't take care of yourself and keep Yourself healthy, how can you take care of her since you aren't well. God Bless.
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jczac44 Sep 2019
See my response please - it applies.
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You are certainty not alone in your conflicted emotions. None of us want to see our loved ones suffer the fear, confusion, isolation, and pain. Both my folks made their choice to go (one by contiously discontinuing treatment the other with dementia by refusing to eat. Both were ready...10 yrs apart. Mom missed Dad beyond words and it exacerbated her dementia.
I too hoped each would die in their sleep. Both did, peacefully.
And don't beat yourself for wanting this nightmare to end for yourself either. As the caregiver you become both emotionally and phisically drained. You emotional conflict is real: wanting to hold on as long as possible yet being desperate for it to be over.
I hope you have someone you can turn to.....to say anything you need to say. Because in the end whatever you feel is valid, and does not make one a "bad" person. We are humans with deep emotions...especially when it is around those we love. Prayers for you & yours 🙏
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No, you are not alone. My wonderful husband and best friend is going into late stage dementia. He has had 2 strokes and a brain bleed where his speech has been affected. He is 75. On the really rough days I wish for him to go to sleep and join his family who went before him. And then, on days like today, I want him here so I can see and touch him, look into his eyes and tell him how much I love and miss him so much it hurts. I feel guilty if I don’t go and see him everyday and then when I go home I cry all the way to the house because I’m mourning the man I fell in love with. It’s a no win situation and very very hard to get thru the days. But I must because when I said “For better or worse, In sickness and health”, I meant every word of our marriage vow. So what I’m trying to say is Don’t beat yourself up, I’m sure there are a whole lot of people who have the very same thoughts.
Good luck and be kind not only to your mom but too yourself as well. God Bless.
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You are not alone. Many of us are going through the same things. I know in my case it has been the longest two years of my life. My mother has seen both a serious mental and physical decline. My dad passed away two years ago. My mother wants to be with him ,but won’t let go. She has had four serious falls. Earlier in the summer she broke a hip and had surgery. She spent the summer in rehab and went home two weeks ago. Those two weeks have been hell. She had to have home dare 24/7. She kicked them out after four days. That just made more work for me. Then she fell again this week. She won’t listen to reason either having help or going to assisted living. We have multiple agencies working with us because she is endangering herself and doesn’t realize it. I know she will fall again. I can only hope she doesn’t break something. In the meantime I keep working toward some solution to get her the help she needs. There have been so many times I have started to walk away. APS has not been any help at all except to make veiled threats. The VNA has been very helpful. When I go to bed tonight I will think to myself please let her go in her sleep.
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In the midst of this horrible disease, enjoy those good days and yes, I know that they're fewer and fewer. Prayers sent to you. Big Hugs ((( ))).
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Please don't feel bad for wanting your Mom to be peaceful and no longer scared. Imagine being somewhere that no one and nothing is familiar...except when family visits. My Mom, also 84, passed away this past January. She was in an assisted living memory care, with 5 other residents in a residential home. During the last few months, she called for her Mama and "please help me" over and over. She told the caregivers her Mama was in her room with her. It frightened the caregivers. Sometimes when I went to see her she would start crying and hold her arms up to me and say "oh Mama". I would answer with "Mom, you are my Mama" and she'd say "well, I know that". I loved grounding her for a few hours every time I went to see her. We watched movies she used to like, we watched Lawrence Welk, we went thru the photo album I made for her. When she asked to call her Mama, her Father, her brother, I'd simply say we should wait till they get home from work or let's call after dinner and 2 minutes later it was forgotten. But she was reassured that they were fine. She never really forgot her kids...we were lucky.
This is such a devastating and unfair (to all) disease. In the last two months Mom seemed to cough a lot when eating or drinking, she started aspirating her food and eventually had a week hospital stay, where she passed away. Dementia/Alzheimer's robs its victims of everything!
You never really realize what you yourself are going through...till after she's gone. Although I miss my Mom the way she was years previous and we even had some pretty good days in her last few years...my shoulders are lighter and I'm certainly not so stressed and worried about her.
My thoughts and prayers are with you. Stay strong and know that nobody knows your Mom, like you.
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I think as loved ones of dementia patients our quest is extremely painful. No doubt our loved ones are suffering a pain we, hopefully, will never know. I am facing a situation of shutting off treatment for my brother. He is in advanced dementia stages, stage 4 renal failure, clogged aorta, chronic leg wounds and a number of other issues. He is at the point where his kidneys will not produce enough blood or iron. He was getting blood transfusions about every 6 months or so along with iron infusions. This has advanced to almost monthly. However, he still wants to go go go and can carry on a conversation if you can catch him awake. The nursing home suggested I contact hospice because of the time frame between transfusions. The big question is, do I keep him alive with blood and iron transfusions knowing he will never get better - only decline, or let nature take its course? I have nightmares over this and the fact I have to make this decision alone. I get zero support from his kids or my sibling.
It really stinks that our roles reverse and we have to make these decisions. I do not think you are selfish, mean or anything but a loving daughter who is caught between a rock and a hard place. Hang in there...
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