I feel so guilty about the things that I think about my mom's dementia. Can anyone relate?

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I feel so guilty about the things that I think about my mom's dementia. Can anyone relate?

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My mom is only 70, but has advanced dementia. She is wheelchair bound, incontinent, does not speak, does not feed/bathe herself. Nothing. You can be right next to her trying to talk to her and she is just vacantly staring off. If you want her to see you, you have to get in her line of vision, and even then, she may not see you.

The guilt part...I very much want her to now be with the Lord. She has no quality of life and is a shell. She has voiced many times before she got sick that she never wanted that kind of life or to be a burden on her children. But my #1 reason for wanting her released is for myself, and #2 for her. She lives in a nursing home, as I am unable to care for her, or else I would. But all her affairs that I have to handle cause me great anxiety on a daily basis, that I am missing out on my own life and it's all I think about. Does this make me bad/selfish to feel this way? To want this for myself before her? I've been beating myself up over this.

Alzheimer's & Dementia Family Caregiver Guilt

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Hello Crafty,

I am about to embark on this care journey for my mother. I read your post and others' responses and still want to give it a shot. I am an only child and I have always been there for my mom so I feel I can't stop now when she probably needs me most. I realize she is in the beginning stages of it because she still recognizes my entire family, but cannot keep new memories or experiences. She eats breakfast and forgets that she ate soon after. She moves into my dining room this coming week. I am relieved she isn't very far, but also very scared as to what's coming down the road in my/our care journey. I can't wait to hear tips from everyone.

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My mother has dementia and she is so mean. I ask the Lord to take her too. But I know that this experience is building me up to have endurance and patience. Be glad she is in a facility. If she doesn't know if you're there or not, don't go as often. Set aside a day or two that you do visit and comb her hair, trim her nails etc. Think quality rather than quantity. I think the Lord takes their minds so dying is easier on them. They don't know what's going on, they are in their own little world.

My dad just passed and before he did, he responded well to music. His favorite was the old country music. When I put on his Ernest Tubb, he relaxed and I could see peace on his face. Try her favorite music.

Good luck to you sister in this journey.

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I thought of you when I read this passage from "Knocking on Heaven's Door" by Katy Butler. Katy describes the troubles her mother experienced caring for her husband after his stroke when he experienced dementia, incontinence, general frailty and required full time care. Katy's mother asks her to help persuade physicians to deactivate her husband's pacemaker so that can die. Katy is reminded of Anton Chekhov, "...the writer and physician who died of tuberculosis in 1904 when he was only forty-four. 'Whenever there is someone in a family who has long been ill, and hopelessly ill,' he wrote, 'There come painful moments when all, timidly, secretly, at the bottom of their hearts long for his death.' A century afterward, my mother and I had come to long for the machine in my father's heart to fail." This book is an excellent memoir of the travails of end of life caretaking. There is no doubt that his wife and daughter love him. But there is also no doubt that his continued existence is a huge and painful burden to everyone.

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My mother has not had any quality of life for years. She is 92 and had a massive stroke 4 1/2 years ago which left her with vascular dementia. She doesn't know I am her son or that she is living in her house. The cardiologist deemed it appropriate to give her a pacemaker 3 months after the stroke. No one really questioned it except the room nurse in the hospital who said she shouldn't be getting a pacemaker because she has no quality of life. Looking back, she was the only one who really saw it for what it was. At this point I am convinced that the pacemaker is the only reason she is alive. Right now she is laying in bed talking non-stop all day to imaginary people. She hardly eats and drinks any more. I am wondering if I will ever have any quality of life.

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I don't think you should feel bad. What you, (and of course your mother) are going through is tough, very tough. Don't beat yourself up. You are right to wish her to go home to heaven. You are in no way responsible for her condition.

If you are still feeling guilty, consider my case. I made a change to my mother's medicine, because I knew it was hurting her memory. (It was.) (I bypassed her doctor, who was convinced she had Altzheimers, and consulted a P.A. who I should have suspected was too inexperienced.) The change in my mother's medicine caused a heart attack, which after three weeks of living hell, killed her. She was completely functional up until the heart attack, driving and meeting friends at age 93. She trusted me. Now I will have to live the rest of my life with the thought that I killed my dear, sweet mother. So no, you haven't done anything wrong by wishing she would pass.

If you get a chance pray for me. I will say a prayer for you and your Mom.

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Jim - OMG, that's a terrible burden to bear. You did what you thought was right for your mother. I have no doubt that your mother, wherever she is, has forgiven you.

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I agree, it's very sad for her & for you, & it's natural that we want it to end. Our good Lord didn't intend for death to 'drag-on' like it does today. (With so many meds, our bodies outlive our minds & souls). It's awful. We feel your pain Crafty789, many times my mother has wished to die, but still takes all kinds of pills to prevent a natural death. (How strange) & what a terrible future for many of us. God bless you with strength to endure, 💞😢✌🙋🌸🌷

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I'm curious about how you determine that you care more about your own suffering than you do about your mother's.

How are you measuring that? I care about mother this much, but I care about my own troubles THIS much...

Every day you are stressed and you are distracted by boring but important chores that mess up the rest of the morning and more generally are making it impossible to lead your "real" life. It's a constant battering. Of *course* it's foremost in your mind.

Meanwhile, the reason this is happening is that your poor mother has been destroyed by a cruel disease which still won't be merciful and take her. But that is a steadier progression with no other possible remedy than time and patience. It's a quieter thing, it's less in your face, there is no active part to play.

I just don't see how you can separate out your different types of suffering, or make any useful comparison. May you both be released and may you be comforted.

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My Mom is 95 with dementia, hearing loss, and verbal and cognition problems. I know how you feel and I've felt the same way more often than I like to admit. But it seems that almost every time I think that way, someone comes up to me (without any prompting) and says how much they enjoy my mother. She still laughs A LOT. Granted, it may sometimes be with someone who's not actually there or with her stuffed cat. But she also laughs with all her caregivers and gives them hugs and kisses all the time. They say she makes them happy so I guess that's what the Lord wants her to do right now. He'll take her when it's her time.

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Thats interesting, & thanks for sharing it. (But I doubt it's any consolation for the family members of dementia patients). Although it's true that God's ways are higher than what I can comprehend, I still grieve for family members who endure watching their parents lose their minds & all their memories. 😕

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Dear Crafty, You have absolutely nothing to feel guilty about. NOTHING! My mom is in a nursing home due to dementia. I did it for as long as I could also than the time just comes when you cannot. Unfortunately your mom is young. My mom is 88 and not that far into the disease, but yes does require 24 hr care. When my mom had lucid periods she too would always want to die and say she does not want to live like this. After many years of hard work and working two jobs, I feel I finally have everything in order with her. It is all over whelming and time consuming but eventually IT WILL work out. You need to try your best to take care of yourself and try to not have it on your mind 24 hrs a day, but it is easier said than done. My faith has helped me through a lot of it, along with this forum and 1 close friend. People really do not understand this if they haven’t been through it is what I’ve learned. Keep the faith and continue to check in. My best.

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Well said☺, Bravo✌

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I feel your pain and guilt. You are not alone.
My mom is 95 and lives with me and suffers from dementia. It is exhausting caring for her even with a part-time caregiver that comes for 15-18 hours a week. My mom always said she wanted to "die with her boots on." When a friend or family member would stroke out and become incapacitated, she would tell me that she is so glad she's of sound mind. Well, now she is that incapacitated person. When she has a fleeting moment of lucidity, she tells me to shut her an a room and come back when she's dead.
I have determined that I am single and childless for a reason. I am not a natural caregiver. And 90% of the time, she doesn't know who I am. So, I have at times wished for both of us that she would pass. And then comes the guilt and self-loathing. It's hard to be positive under these circumstances.
I have no advice. I can only empathize and sympathize.

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Oh Jackie, my heart goes out to you. I've experienced much the same with my Mother. She often said she would, "die before putting any of her children through this." She recently had a step-down and seeing her suffer awakened compassion that I though I might've lost. We do love them - but hate what this disease has done to them - and us. God give you strength.

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No not at all selfish or bad thoughts, Mom told me many times she did not want to be kept alive on machines. Of course she grew so very ill the hospital gave me the ultimatum , breathing tube, brother in Ca could not be bothered as she just made it to his wedding, 2 aides and myself taking care of her. He begged me to keep her alive so he could come in and see her. Worst mistake ever. He tried to tell the Dr I wanted to kill her because I told them of her wishes. I actually told Mom what he was doing and she blinked at me as if it was ok to let go. It was so very hard but told her to go to Jesus, I would miss her like crazy but it was ok. I know she is in heaven running and bouncing about family and friends who have gone before and after her. Just pray hon, but do not feel guilty ❤️

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Its very difficult we are all or alot of us going threw this,I feel your pain very much an my mom is only 67.

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I read your question and thought OMG - that sounds like me. My mother was diagnosed with dementia and was in a slow spiral for about 9 years. Last year, she fell and we had to place her in memory care. The slow spiral started going faster. My father says it's like she died but she didn't. It broke my heart to put her in a nursing home and I feel so guilty. She made me promise that I wouldn't put her in a "home".
It is so hard to see a strong, creative, vibrant lady become what she is today. I do wish she would pass because I know my mom wouldn't want to live this way. I live 1100 miles away so I don't get to see her every day. But when I visit (4 or 5 times a year), I see a little bit less of her. It is heart-wrenching.
Luckily, I have my dad and brothers who are nearby and keep an eye on Mom. My boyfriend says cherish the memories and try to look on the bright side. I try but some days it's hard.
Thank you for sharing and letting me know that I am not alone in this.
Hugs!!

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Many of us here have the same thoughts about our loved ones. You are most definitely not a bad person although I can relate to the guilt. My 96 year old mother has moderate to severe dementia and isn't even as advanced as your mother in terms of physical debilitation, but I do know that her quality of life is pretty non existent at this point. Releasing her to the Lord is a loving wish, but it will be His will as to when this will occur. Sending you hugs and prayers for peace while you walk this journey.

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i had the exact same feelings, for her mostly and not myself, and i was taking care of her at home. so i had to watch her be that way all the hours that you are not even there. my only suggestion to you is to somehow switch your #1 and #2, because it ceased being about you when you decided to take on the responsibility, which ultimately was the right thing to do. legally we are not at a place as a society where we can admit defeat when it is obvious. yes, i am a kevorkian, but the silly religious or false morality of society is not ready for prime time reality. i had to suffer those stupid hospice people come in and out of my house and monitor whether she was close or not while my mom lay there starving to death, and because of them could not legally end it in a quiet manner. you'd think we are living in the medieval ages where we have to hover helplessly until the very last breath, which comes after much indignity. we give dogs more dignity than we give ourselves. stupid humans.

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You said it! I spend far too much time ruminating about how to fulfill my mother's wishes, among them that she wants to die not knowing she is dying. No sentimental sitting around the bed saying goodbye for my mother. Main issue now is how to assist her without going to prison. I have joined a couple of FB groups for people aging who do not have children and who are nearly all single, who worry about who will enforce our rights to refuse treatment, to be allowed to die. Have you joined Final Exit? I was all set to do it, but they don't have a chapter in my state.
Anyway thanks for speaking up.

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No, you are NOT a bad person. Just overwhelmed like many of us. Don't think badly of yourself! You are doing the best you can, I'm sure

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My mom was the same way before she died 3 weeks ago - once I sat there thinking we were kinder to our old cat by calling a halt than we were being to mom - we all feel the same way - I even did some pre-grieving as the rarer & rarer glimpses of the real person became less & less

Stop beating yourself up as it is a useless waste of time & energy - do something positive when you start feeling that way even if it only sorting out files - I know because I have been there & it can grind you to a halt if you let it - I felt as long as I am doing my best for then I tried to deflect myself from the 'what if', the 'maybe' and the 'am I doing enough' type of thought - it is easier said than done & I am 69 years old doing this

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Condolences, and wishes that you transition well into the next phase of your life.

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This is a normal and common response. Nobody who has seen this close at hand, would want it for their loved ones OR themselves.

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Oh my goodness no. Don't feel guilty. My dad just turned 80 and is in a memory care facility. He is still ambulatory and recognizes me but can't do much of anything on his own and is completely lost about time/seasons/location, etc. I am watching him go downhill rapidly. I'm hoping he goes before he loses all dignity or ends up bedbound in a nursing home. And yes, it is a big burden on me both time and (mostly) mentally. I know it's likely to go on for years and that scares me. I am an only child and am the responsible party for all of his care.

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I feel your pain. My mom is 87, moderate or late stage dementia. She has no concept of time, day, month, year. She still knows most of us, but those that don't come to see her regularly she is forgetting them rapidly. She cannot prepare meals, but can eat on her own. I noticed her swallowing is worsening, very limited on foods she can eat now. She can still go to the bathroom herself, but not bathe. She can't even remember if she has a depend/pad on most times. Sometimes when I bathe her she just stands there and says what do I do. I notice if I take her out, she just says I will follow you. Bad part for her is she has no real health issues other than this. Her blood work is perfect, her vitals, etc. She does have a pacemaker. I have her at home with me, my husband is a tremendous help, my sister comes 3x a week (while I work) to help me. I have one sister who lives 2 minutes and she does not help at all. She blames me because I did not put her in a nursing home 1 1/2 years ago. So she started a huge fight I think just so she knew she wasn't welcome at my home. I have told her she can come and get her, take her to eat, anything but she still doesn't. That's fine, her loss. I know the time will come when I can't take care of her anymore and it definitely affects my life. My husband and I can't just pick up and go without planning for help, etc. She can't be left alone at all. She does now sleep a lot! Sometimes 14-15 hour days, blows my mind. I don't know what to do about it either but just feel guilty. She is not yet approved for Medicaid and with the changes coming in the elections, I don't know if she would qualify. Prayers for everyone having to deal with these horrible diseases.

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My dad was exactly the way your mom towards the end. I would pray every night for God to take him. He didn't want to live in that in a nursing home and we hated seeing him in his wheelchair, incontinent, not speaking, eating pureed food... staring into space. He was such a proud man when he was healthy. So strong and to see him that way killed me and my family.

My dad passed away in September. I miss him so much but I take comfort in knowing he is whole again and not sitting in a wheelchair suffering silently... I felt that way too... my life was driving back and forth to the NH every day. But now that he is gone, I'm glad I did what I did for him in his last months on earth. And I don't feel guilty wishing that he'd go to heaven because I didn't want him to suffer anymore. It is a horrible disease and the end is the worst but I'm glad I stayed with my dad until the very end. I miss him terribly now.

Please don't feel guilty. You're not alone feeling this way.

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You are not alone many of us would feel the same way. The guilt can eat you away just for wanting your own life back & easier said than done is to not feel the guilt for your thoughts. I came to this site in the Nick of time....I was in burn out then and just reading what others have written you realize your thoughts are normal, it doesn't mean you don't care, you are doing the best you can. Our lives get put on hold until you change how you look at how you are handling the situation. 1. Is she being looked after....yes, 2. Are you doing the best you can....yes. dementia takes away their soul. Yes you are correct you are talking to the shell of them but on those rare times she can concentrate on you when talking, cherish those moments. You want your life back, understandable but when the time comes that she passes away your life will still not be the same. We as caregivers all go through these feelings of resentment, guilt. Please come back to forum it really does help. Can not stress this enough!!!

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My mother is 92 with late stage dementia. She is not able to do anything herself. She is in bed 24/7. She sleeps, eats, and goes to the bathroom. She had a massive stroke in 2014. 3 months after the stroke I had her in her doctor's office for a routine visit. Her heart rate was 32. Her doctor told me to take her to the ER. They admitted her and scheduled a pacemaker to be installed the next day. The next day she was very agitated. The room nurse said she should not be getting a pacemaker because she has no quality of life. I thought that was a harsh thing to say at the time, but it turned out to be true. I got my mother calmed down and 40 minutes later she was headed to the operating room. According to how her cardiologist talks they won't be replacing the battery when the time comes. I am convinced that the pacemaker is the only thing keeping her alive. I always find it curious that some people have seemingly healthy, active lives and die relatively young and other people live a very long time with terrible health.

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My dad is 80 with dementia and went into the hospital with pneumonia this past June. All of the sudden his heart rate went down rapidly and the docs started mentioning "pacemaker". I am his health care surrogate and so the decision fell on me. I said "no way", he would not want to be jolted alive. His heart rate came back to normal on its own, and off he went back to his memory care facility. And you are so right....I lost a friend earlier this year at age 60 who was working (physical labor), volunteering, the most active guy (we called him "Superman"). Meanwhile at my dad's memory care there are a couple dozen people wandering around in confusion, miserable, some can't walk or even eat on their own and have been at the facility for a DECADE. It's just not right, artificially keeping people alive beyond a meaningful life :(

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As you can see you are normal to feel the way you do. When a LO has fallen ill it's the family that usually has a hard time with it, but when it comes to be a caregiver well then, it becomes a burden. We don't like to think of our LO that way. I took a class on "death and dying", and I learned that when a LO is dying, and as time moves on, it is normal for wishing that the LO would move on. It is just human nature. We want that LO to be free of pain, and we want ourselves to be free.
I must disagree with the few ( with respect) that how guilty you feel is how much you care. I don't believe that! Guilt implies intent, you didn't intended to hurt your mom. You don't intend to cause her pain. No, of course not! You love her and want what is best for her. Guilt means there is something bad you are doing or going to do. You have empathy for her and now you will have empathy for others.
Try not to beat yourself up. As someone post on this site somewhere, our LO "become a shell of who they once were". Your mom isn't really there anymore. And just maybe somewhere in her mind or soul she wishes to be free as well. Just make sure you tell her everything you need to.
I didn't when my dad died and I would do anything just to tell him that I loved him & he was a great dad.

May God bless and carry you through your final moments with your mom, and bring rest to your heart and hers in Jesus' name. Amen

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Just pray for her while she is alive. Once she passes, that is it and you may remember right when she passed and some the the pain she was having but you will still want to hear her and talk to her and may fell guilty for not doing more for years to come. But with time you'll remember the good times when she was healthier and when you were a child and when you laughed together. You're just going through the motions right now of what most people go through when they die. Everyone goes through it. The guilt and everything. Why that is, I don't know. I guess people feel like they didn't do enough or they could of done it differently.

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My Mom died over three years ago and I still feel guilty about things. The last time I saw her conscious my brother and I were visiting her after the annual nursing home care meeting. She seemed overly excited that day. She was actually dressed for a change and had rollers in her hair. She very self consciously took them out while we were visiting with her. My brother had to get back to work and normally I would have stayed but for some reason I was tired that day and wanted to go so I left with him. My Mom looked really disappointed. How was I to know that would be my last face to face conversation with her. I still feel sick to my stomach when I think about that day.

But it's a waste of time feeling guilty. It doesn't add anything positive to your life and I think the fact that you are feeling guilty shows you care. If you were some kind of sociopath you wouldn't feel anything. But you do care and that's why you feel guilty

I know I'm a fine one to talk when I still feel guilty about things years after my Mom's death but the logical part of my brain knows it's stupid and so I'm very qualified to tell you. "Stop feeling guilty!" You love your Mom. I'm sure if she could communicate with you, she would tell you the same thing.

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you are so brave to share your feelings. When family members get all excited because our mom ate a good meal or said a couple of words, I feel the opposite. I don't thinks she ever wanted to live like this and I am ready for her to be with her Lord rather than hanging on and giving some family members joy that she is still going (if you could call it that)at almost 95. The only good thing about this disease is that I think I will be grateful when mom dies rather than devastated

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I don't thinks this makes you bad/selfish. I think you are suffering from unrealistic ideas about love and sacrifice. We often get told that love means that we totally accept everything about our loved ones. This is a romantic idea and not at all true. New parents usually love their babies. But they nearly all complain about loss of sleep. Realistically you are suffering from your mother's condition and missing things that you could do if you didn't have to spend time managing her affairs. You have chosen to help your mother. That doesn't mean you have to enjoy providing this help. I think all the caretakers on this website are heroes for their dedication--even if they hate it and wish for their loved ones to pass away and ease their burden. I count myself incredibly lucky that my husband passed away after 4 1/2 months in hospice care before he was totally demented/disabled. I only had to clean shit once and was spared repetitive clean ups. He had bed sores and I was fearful of contaminating the sore. Before he got ill, he used to make fun of me for squeamishness about handling bowel movements. Lucky, too, that I was retired and didn't fear missing out too much. Good for you for "caring" for your mother. You are not required to wish for her continued existence which is now a burden to both of you. And if you #1 wish a merciful death to spare yourself, that's ok in my opinion because you are the one who feels this burden most.

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No. I think it’s perfectly normal to feel that way. You have a lot to deal with and it definitely takes a toll on the caregivers. You need a break! People who aren’t in our shoes have no idea what it does to our mental state. I take care of my mom and have for years since my dad died. Her dementia is getting worse (not as advanced as your mom) and she had advanced stage cancer now. She can’t assist in anything anymore. It’s 24/7 around the clock care. I feel like a prisoner on lockdown. I can’t leave and do anything for me. I lost my husband last year suddenly and unexpectedly and we have a son together. Our world turned upside down in an instant. I don’t work so I can take care of my mom. We moved into her house to take care of her. I’m still trying to pick up the pieces from my husband’s death for my son and me but now mom needs full time care...I’m so stressed and mentally exhausted. Mom’s communication sucks. It’s hard to help if she doesn’t tell me how’s she’s feeling.
My mom’s dementia isn’t as advanced as your mom’s...But I could see that happening. I’m not quite feeling like you are yet, but I don’t think you’re wrong to think that way. I’m sure you’re not alone. And like you said, you’re mom wouldn’t want to live like that. That’s not living. You’re being honest and you have to take care of yourself. That’s what everyone tells me too. Easier said than done though. Good luck to you!

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Wow, Cheryl...You have a very heavy plate of your own! I hope you can get some support via a local support group. I volunteer for the Alzheimer’s Association and am primary caregiver to my 87 y.o. mother with VD...Having a son makes it more responsibility yet, hopefully, you get some love back!

As as far as feeling in “lockdown” mode, please pursue a support group. Could you afford, get Medicare, to pay a CNA for a few hours per week to allow you time to get out...Attend a support group...Enjoy time with your son & friends? Your strength is admirable, just take time for YOU!

Positive thoughts your way.

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I can relate. While my mom still lives in her own home and is capable of feeding/cleaning, etc. herself, I am the soul caregiver and the majority of her transportation. I get so weary of answering the same questions, explaining why she can't drive and going over everything a million times. I feel guilty when I have thoughts of putting her in assisted living, even though I know it's inevitable. I know it's going to be a challenge for her to leave her home of 50 yrs, I almost hope she passes before I have to make that choice. It sucks, that's all there is to it. I have found a lot of support on this site, so feel free to express your thoughts. There always seems to be someone in the same boat.

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I knew by the time I sat down to write an answer that you would already have lots of responses affirming the normalcy of your thoughts.

I'm 9 years into assisting my dad in his facility and managing his affairs as an only child. It has consumed so much time and energy that the happy life I had a decade ago is only a distant memory, but I continue to long for the opportunities and choices I once had. Of course, my yearning also comes with feelings of frustration, and even resentment at times.

I've been very much helped by attending an Alzheimer support group and would highly recommend it. I've had a chance to observe and contemplate the thoughts and emotions of many people in our situation and have drawn a few conclusions.

1. Most of us enter this responsibility without previous experience but forge ahead by saying "I'm a good person so, of course, I can do this." Later, you'll have thoughts that have you asking others "Am I a bad person for thinking this?" Hello dementia caregiver! And yes, you're still a good person.

2. We also believe in our resilience and perseverance at the beginning because we are untested. We say "I can do anything for a while." We never imagine "a while" will turn into grueling years of increasing difficulty. It leaves us longing for any period of relief and imagining what living life without swimming in stress hormones might feel like. Hello dementia caregiver! You can expect an odd mix of grief and relief at the end.

3. Lastly, because we are naïve, we also say in the beginning "How hard could it be?" Then we find out it's beyond what we could have ever foreseen but we question ourselves because we struggle with the unimaginable. Hello dementia caregiver! I have yet to meet anyone who can make it to the finish line without engaging with others in some way to fortify themselves mentally, emotionally, and physically with the care challenges.

Perhaps you can see yourself in this evolutionary summary and I hope it reassures you that you're as normal as the rest of us struggling to cope with these difficulties.

As a final suggestion, I'd recommend that you relinquish the tendency to put things in rank order and see your desire to want the end to your mom's suffering and the easing of your own caregiver struggle as equally important outcomes for different but valid reasons.

I'm glad you brought this up because it rings true for so many of us. It's a hard road we travel but we try to ease the way for each other with out support.

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Well said! I’m sorry you’re experiencing this hell as well.

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I, too, pray for God to call my mother “home.” I completely understand your point of view. I have a gut feeling that our thoughts and prayers related to our parents’ suffering is a normal response. I wish you a peaceful heart.

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I feel so guilty about the things that I think about my mom's dementia. Can anyone relate?

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