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Missmom7 Asked October 2023

My mom passed May of 2022 of dementia and the guilt, grief, fear and missing her is tremendous. How does someone cope with moving on?

I’ve been in therapy, done grief groups and every day I cry - sometimes almost hysterically. I was an only child and she was my only family. I have no kids or husband There are distant relatives I never met in another country. I was her Caregiver. I feel great guilt for not doing more for her sooner, for not talking to her about what was happening. She tried to talk to me but I’d cry. She moved in with me on late 2018 and the Dr still said she could drive then so I kept going to work and to shows and the gym and thrift stores. I should have been there for her in 2019!! I was there and took her to the store and tried to keep her from driving and brought home food and took her out to eat- I didn’t neglect her but I was not there enough. Didn’t really comprehend things. Couldn’t deal with it. The dr said she was not ready to see a neurologist yet coz she passed word tests and they were more concerned about her weight loss. I feel like that was my fault!! The Dr and I were working on getting her a nutritionist but I think the issue was that she had problems reheating meals or fixing easy things like sandwiches or the food i had bought and I didn’t realize it. I knew she couldn’t make homecooked meals but I didn’t understand that a bowl of cereal was difficult for her or maybe was. I don’t know for sure back then. I lived in fear but I ran instead of being there. I feel like a selfish bad daughter. She had no one but me to talk to. There is no other family and her friends were far away and couldn’t drive being older. Fast forward to 2020 and Covid- I worked from home and stepped up my game. She started to decline fast. Pt oT all the appointments I arranged and I tried so hard to juggle it all. I tried to get people in but it wasn’t too easy with Covid so it was mainly just me. She had Vascular dementia. I didn’t know it was vascular until July 2020. I didn’t expect things to go so fast with her memory. I loved her more than anything in the world. I still do. I was so scared. I feel so selfish not doing more. I thought dementia would be a long 10-15 years. It wasn’t. I didn’t understand that dementia would take her like it did. I told her she’d be ok that those things wouldn’t happen that she worried about but they did. I thought she was just moving and thinking slower and I didn’t grasp the gravity of it all in 2019 and pre Covid. I was non stop worried but i didn’t step up then. I was not home enough. I was every night and morning but I kept going out instead of being with her more. I was w her but not enough. I feel like I failed her. I was physically sick from the stress of both my job and worrying about my mom in 2020 and was throwing up often from stress. I was petrified of Covid. I ended up quitting my job in 2021 and giving all I had to care for her and continued to give my all for the remainder of her life but her memory was not right by then. I missed those moments of talking to her about the important things coz I couldn’t handle it. She deserved so much more . I miss her terribly. I feel full of regrets and loss. She made a family ancestry album and I didn’t look at it with her then. Why oh why didn’t I spend that quality time with her all the years before her memory failed. I called her all the time and went to eat but didn’t do so much more. So many regrets. All the what ifs. She was the only person who ever loved me unconditionally. I yelled at her one night in early 2019 coz I wanted to be out with some stupid guy and she wanted me home. I had been drinking. I’m an awful person. At least that might. I made her cry. I feel like a horrible person. Everyone thinks I should be proud for all I did for her but I have so many regrets and I want to relive the past and do things better but I can’t. I know she loved me and would want me to be happy but I don’t know how to do that. I’m so lost and scared. She was wonderful and amazing and kind. She deserved much more. I feel like I don’t know how to move forward

BarbBrooklyn Oct 2023
MissMom, I'm so sorry for your loss!

Vascular Dementia has a survival rate of about 5 years. It is inexorable and there is nothing you can do to stop, improve or sidetrack it.

COVID messed all of our lives up badly, right? It made it difficult to get therapists in to see mom, but in the end, that wouldn't have prevented her passing.

I think you are holding yourself to a high standard than God. Nothing, NOTHING could change the course of this disease. I think that's a fact you have to learn to accept and go from there.

I'm sorry if this sounds harsh, but there are some things in life that can't be fixed and that are not within our locus of control.
Missmom7 Oct 2023
Thank you. It doesn’t sound harsh. I think I’m beating myself up because I didn’t realize when she moved in with me so much about what was happening to her and I’m so upset with myself for that. I’m mad I didn’t demand a neurologist sooner. I’m mad at myself for not doing more and learning more back then. I thought dementia was a slow moving disease. She was not diagnosed with vascular dementia until mid/late 2020. She was given a dementia diagnosis by her dr in 2018 and I was in denial and disbelief. I didn’t understand what was going to happen - I was in so much denial. My grandmother had Alzheimer’s when I was a child and it progressed slowly. We moved to another state so I didn’t see or realize the true horrors of it. I was very young so it was not discussed with me and I don’t think my dad even really understood what was happening to his own mother then. I didn’t understand there were different types of dementia or the details or what it entailed until my own Mother’s vascular diagnosis. My moms Dr prior to 2020 said it wasn’t time to look more into her memory because she passed the word association tests still on Dec 2019. I was concerned and worried but the dr was still letting her drive and I thought she was the expert. She was not I later discovered. I feel so much guilt and I worried constantly and had so much fear but you are correct in that I couldn’t stop what happened, only my reaction to it and my own actions to help her. I’m mad and blaming myself and am full of regrets for not making her time richer and more full of understanding, joy and comfort but I do need to remind myself that I could not have changed the ultimate outcome no matter what I did. Covid was horrific but it did make me stop and see what was happening being w her 24/7. I wish I was more aware earlier but her decline really snowballed in July 2020 and I am thankful she was living with me when Covid hit. I’m trying to count my blessings but I keep falling in this self blame wormhole. My therapist said it was partly because I don’t want to let her go. Which I don’t. I don’t want her to be gone and I don’t want her scared with dementia. I want to rewind time but I can’t. I hope and pray there really is a heaven and that I will see her again. I talk to her and to God but I want raised with religion. I pray to him and ask for forgiveness and her happiness and to see her again and I only can try to have faith that her energy and love and spirit is with me and that I will one day be able to let her know. I miss her so much -it’s so hard.
AlvaDeer Oct 2023
When needs are acute an expert is required.
I would, since you have done all the things most would recommend in terms of grief groups and so on, suggest that you now see a psychologist.

You could consider a licensed social worker in private counseling practice if you prefer as they are often trained in counseling on life transitions. However, to me, given you describe yourself as crying BEFORE your mother's death to the extent you felt she couldn't talk to you, this is an ongoing problem that may have not a lot to do with your mother per se.

Do seek help. Much in life is a decision. Life is full of tragedy and pain. And it is full of beauty and joy. I love to listen to Dr Laura's call of the Day on podcast. She can seem brutal sometimes, but she is also RIGHT and she cuts to the chase very quickly, often saving people years of time and money in therapy. Dr. L says that we CHOOSE what we think about 24/7, what we concentrate on.
As we draw more into ourselves and circular habitual thinking we WITHDRAW from a world that has much to offer us.
And ultimately it is a choice.
I am 81. You can imagine the losses I have sustained without my telling them to you. The losses include a marvelous Mom and Dad, and a wonderful brother.
We all lose those we love if we live long enough to do so.

The poet and undertaker Thomas Lynch says that "once someone is dead there is nothing you can do ABOUT, FOR, WITH, or ABOUT them that will make the slightest difference to them" and that's the truth. Your Mom is gone; you most surely have my deepest condolences on that.
But you are living.
I doubt you do your mom honor by letting your own life be henceforward about grief.

I sympathize with your pain, but sympathy does you no good; in fact sympathy often holds people back.

The world with all its beauty can be a tough place and it demands of us our best efforts toward our own physical and mental health, and demands that we attempt to help others.
Often, in that helping others we find our own pride and joy and esteem. It takes us out of our own heads and helps us to think about OTHER people.
So while you can no longer help your mother, you CAN help many others by accepting the lesson you learned through her to help other people.

I encourage you to reach OUTWARD to the world instead of inward into yourself.
I encourage you to get professional help for yourself, and to embrace it and do the hard work that will bring you, eventually, great joy. And breaking old habits is, believe me, hard work; you will be very proud of yourself.

I wish the very very best for you.

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olddude Oct 2023
I read your entire post and I can't find the part where you caused your mother to pass away. It isn't your fault that she got dementia, and it certainly isn't your fault that she got old.
Missmom7 Oct 2023
Thank you
LoopyLoo Oct 2023
Losing your mom is hard enough. Why are you torturing yourself like this?

Stop blaming yourself. You did not hasten, or bring upon her death. You could have been the most perfect daughter on Earth, and the outcome would still be the same. Mother was supposed to pass before you; it's the nature of things. It's heartbreaking no matter what, but you are not to blame here.

Replaying scenarios in your mind and wishing you'd done this or that is not helping you heal. It's actually killing you. At this rate, you will grieve yourself to death. That cannot be what Mom would want for you.

You say she wanted you to be happy. No one would expect you to be happy after such a huge loss. But, try to consider how she sees you now.

She sees your true soul, probably even more than you do! She knows how you felt. She knows you loved her. She sees your heart. She knows she didn't raise an uncaring, selfish daughter. That isn't who you are! Why would you call yourself something you are not? You are a piece of her life, not an instrument of her death. And you are here to continue to be in the love and light she instilled in you from the day you were born. Don't snuff out that light; it's from her and she knew she could trust you with it. The hole in your heart can be filled with the love she gave you. That love didn't end just because her life did.

Can she truly rest in peace if she sees you blaming yourself and thinking you were the worst daughter that ever lived? Can she be happy seeing you drown like this? She can expect you to feel sad and maybe lost for now... but not taking blame and guilt. These things don't honor her or her memory, because they are not true. She didn't raise you to spend the rest of your days in this spiral.

Grief feels awful. It's a long process. It's okay to cry. It's okay to miss her presence. But please, please don't blame yourself anymore.
Missmom7 Oct 2023
Thank you so much!! How she sees my heart and soul probably more than i do actually gave me chills. That’s probably so true. I need to work on forgiving and loving myself. I think I’ve been so lost that I couldn’t really see that. I appreciate your kind words and insight. Things I couldn’t see because I’m so entangled in it. After reading all these responses, I feel like I have a lot to work on and that perhaps my guilt isn’t the most rational - it felt like it was and I was certain it was warranted at the time but maybe that’s because I can’t see myself from a distance because I’m so in the midst of the feelings and emotions. Thank you!
JoAnn29 Oct 2023
You did your best at the time. If anyone is going to feel guilty, it would be me, and I don't. I was the only one, my brothers did nothing. Not even a call to see how Mom was doing. If anyone should feel guilt, they should. My Mom was the only one, that I know of in her family to have Dementia. My Dads Mom and sibling had ALZ but I was not involved in their care. So Mom was my first experience. Its a horrible disease that is too unpredictable. I refuse to feel guilty when I lost patience. Or feel guilty when I may have made the wrong decision. Or guilty because I did not what to do the care. I was it, always had been when it came to my parents appts, hospital and rehab stays.

If guilt starts to enter my thoughts, I push it back. I did the best I could with no help. I am not perfect and either are you. So stop feeling guilty. We are think we could have done better. We did what had to be done and it had to be enough. So stop thinking about what you could have done better. Its now in the past and nothing you can do about it. Release that guilt and move forward in you life.

SnoopyLove Oct 2023
Missmom7, please accept my condolences on the loss of your beloved mother. Please know that a variety of people with different family backgrounds, different health issues affecting their loved one, different low points and mistakes feel just as you do now. It’s so hard to lose a parent. You did the best you could under very trying and uncertain circumstances and you and your mother obviously shared a very close bond. 😊

“I know she loved me and would want me to be happy …” Yes!

Best to you as you navigate this hard road after such a terrible loss. It does get better with time.
Missmom7 Oct 2023
Thank you so much. Especially for emphasizing that my mom would want me to be happy. I know that in my heart and every fiber of my being. I miss her so much and find it so hard to let go of the guilt and grief and so much sadness that happiness seems so incredibly far away but I need to try because that is what she would want. Thank you for also being so empathetic of my choices. I did do the best I could at the time. Hindsight is a hard thing to let go of and I haven’t done well with that. I miss her so much! Thank you for reminding me that I’m not alone in feeling this way. I love my mom so incredibly much and it is so hard to accept this. I’ve never been so obsessed with death and what happens after and only pray we are all reunited, free of suffering and happy. I want that more than anything - not now because I have to make my life mean something and make a difference in the world. At the moment, l am doing all I can to make it through each day. The grief is awful and the world seems so surreal. Then I look at the news and all going on w Israel and I just don’t understand how people can do these terrible things. We are supposed to love one another.
MJ1929 Oct 2023
If you had children, you'd relate to this better, but here goes --

I was not an instinctive mother out of the gate. Every single thing that happened with my firstborn was a first for me, because I was the youngest sibling, youngest cousin, and only babysat about three times 20 years before I had a child of my own.

I screwed up a lot, because the baby books were of little help when my daughter didn't hit milestones when she was supposed to, she was colicky (THAT was a party!), and I even had a pediatrician tell me "don't starve her, Mom" when I brought her in at 10 a.m. for constant vomiting and hadn't fed her that morning.

In short, my poor daughter was a learning experience, and as she grew up, I just told her that she was my guinea pig, and I was doing the best I could.

Fast forward to dealing with a mother with dementia, and I was in unknown territory once again. We didn't even realize she had dementia until she was probably four years into it, because it started at the same time (and likely as a result of) another illness. My dad never really knew that's what her problem was.

I made the terrible mistake of first placing her in a skilled nursing facility instead of Memory Care, because I didn't know there were different types of care other than assisted living, and she definitely couldn't have qualified for that. (She was also mostly blind.) After seven months in skilled nursing, my husband was the one who said we had to move her or she was going to waste away. I moved her to MC after finally realizing that dementia was her biggest issue that we could treat with some success through socialization. She died there in 2021 happier than she'd been in years through no fault of my own. I was just finally lucky in one of my decisions.

My point in all this is to let you know that no one is an expert in anything the first time around. Hindsight is a wonderful thing, but only if you can apply what you've learned. Otherwise, you just chew on the woulda/coulda/shoulda stuff like you're doing, and that's of no value to anyone. You can't turn back the clock. You did the best you could at the time.

That's all anyone can do -- the best they can at the time. Forgive yourself and let it go.
Missmom7 Oct 2023
Thank you so much for sharing your story. You are making me think differently about how I should have known this or that and being full of self hate because of not knowing or doing better after reading this and I’m so thankful. The wheels are still spinning in my head, processing it because I never thought of it like that but it makes a lot of sense. I appreciate you taking the time. It means so much. Your words really resonated with me.
Tynagh Oct 2023
Missmom, Here goes. In much the same position as you, but much, much older. No significant other, no kids, no immediate family. Basically, my entire world revolves around my very older mom and when she dies, I'll be beyond a basket case. BUT, how in the world do you relate her death to having anything to do with what you did? You took care of her for several years. There is no way on this earth that you could have prevented her death. You helped her as much as possible. I know we all deny it, but death is the single inevitable thing in all our lives. I feel for your grief and can empathize for feeling that your life as essentially ended when hers did. But your life didn't. You're here and alive. Now what are you going to do with that life? You mom certainly wouldn't want you to just sit in a corner and waste away. Get up and out and take care of YOU! Hugs to you!

Dupedwife Oct 2023
Missmom7:

I am so sorry that you are blaming yourself for not being there more for you mother. You have done the best that you could have done for her as you also had your life to live. You were a loving and dutiful daughter to your mother, and I’m sure your mother was proud of you. It’s not your fault that your mother’s dementia progressed the way it did, and there was nothing that you could have done to stop the progression. Please stop blaming yourself because it was not your fault.

Now it’s time for you to heal. You said you have tried counseling but it did not help. You can now get rid of the guilt that you are feeling by focusing on the happier times you have had with your mother. Go get the ancestry album that your mother made and look at the happier times and reflect on them. When the sadness and grief try to take control of your thoughts, try your best to push them out of your mind and replace those thoughts with the happier times with your mother. Also, if you have the time, you should try volunteering which will help occupy your mind from the sadness.

DO NOT dwell on the sadness of your mother’s illness and death, but dwell on the happier times you have had with your mother. Time will eventually heal your grief, but for now just focus only on the happier times spent with your mother

Wishing you peace and happiness in your life.

KNance72 Oct 2023
Forgive yourself for Not Knowing about Vascular Dementia and being a Psychic and Holding a Crystal Ball . None of us know the future or how long a Loved one will survive with a Illness . I did Not Know my Mom had dementia ? No Idea . I did My best under the circumstances . I was alone caring for her and then my brother at the same time . Then my Dad . My Mother and brother passed 2017 . I Miss them. My sister absconded with my Dad Last year September 29, 2022 took him 3200 Miles away from Home. He can Not use a phone and has vascular dementia . I do not Know where he is or how he is ? She refuses to answer phone and took out a restraining order against me . The Motivation is Money . I think about How I should Have spent More time with him in Florida or have gone to see that Movie he wanted to see " Catherine the great " Or that vacation we were going to take to Naples . But what I Can be grateful for is that we a spent a lot of time together the last 22 years and I Lived with him for 12 years and we became good friends . So No matter what stories my sister chooses to tell people - She did Not spend 35 years of her Life with him and she does Not know him. You have to remember the good times and Not dwell on what You could have done but remember what you did do together .

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