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.
My father died in 1974 with Mesothelioma. It is one of the most horrible deaths. Daddy just died by inches. He went from 150 pounds to maybe 75. The cancer invaded his bones and brain and it was so sad. We didn't have Hospice then as it was just coming into the U.S. I did manage with help to keep him at home. Two years ago one of my good friends and co-workers died with this same terrible cancer he was only 57 (my kids age). I was over there two to three times a week helping him and his wife. It was like loosing Daddy all over again. I am 84 and have seen a lot of my friends and relatives die. One was a niece, she was only barely 53.
Personally, I used to pray for Daddy to go. Hospice tells us that it is OK to tell our loved ones that it is OK to let go, that everything is taken care of. My co-worker was worried about his wife, Hospice told her to tell him she was going to be ok and he could let go. I assured him that what he was concerned about was taken care of. It was too, by the way.
Has your mother left any instructions what how she wants her end of life to be handled? Like, feeding tube, a DNR, etc.
Please don't feel guilty, You have nothing to feel guilty about. None of us want our loved ones to suffer. You believe this life isn't all there is, that should comfort you. Just before my mother died, loved ones who had passed on came to talk to her. I didn't believe then, but I do now.
Read to her. Bring old family movies on DVD, pictures of her as a child. Follow her eyes, you might be surprised.
Pray for God's will for her!
Hope that helps.
Guilt is a very normal emotion. When my Mom died, my sister's overwhelming emotion was relief.
I am a retired Professional Counselor. I totally understood.
Please do not beat yourself up for wanting her freed from this living.
h€[[. It only makes you an obviously loving daughter to want her released.
For whatever reason, she is going through this and her family is being drug right along.
Unless you have dealt with someone that has the lights on but there is nobody home, it is hard to understand the desperation you feel for the situation. There is no engaging them in any way, shape or form. There is no communication possible whatsoever, nobody's home. (I am saying this for all the posters that have suggested engagement as a way to cope, sorry guys, no offense intended. It is just not possible, she is a shell.)
Crafty, do only what you can, delegate when possible and be thankful that she is not suffering.
You have been dealing with a heart breaking situation for a long time, to want it to be over is okay and understandable. Be kind and forgiving to yourself.
Hugs for all you do, you are a daughter that any mom would be proud of.
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.
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!
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.
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.
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
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.
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
Anyway thanks for speaking up.
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!!
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.
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.