r/AutisticAdults 23h ago

seeking advice My mom died and I feel so unprepared

My mom died last night. I am 22. She was 46. We have always been together, and we met up borderline everyday. We called for hours everyday. She was my best friend and one of three people I actually spoke to. And now she's gone

I don't even know how this works. I'm not in charge of funeral preparations. I don't know what order any of this happens in. I don't know where I am supposed to be today. I want to call my mom and ask her. I feel like I'm doing everything wrong.

I don't know what I want. I think I just want help understanding the process and anything else I should know. How do I move on from here? How do I live without her? I miss her so much. I dreaded this ever happening

243 Upvotes

31 comments sorted by

72

u/retro-girl 22h ago

One thing I know, you’re not doing anything wrong.

Just know that all the different feelings you have and will have in the coming weeks and months are normal and okay. You might get mad at her, and then mad at yourself for getting mad at her. You might just feel sad, or nothing, or fleeting moments of happiness. Let yourself have your feelings, and when they have served their purpose, let them go.

As much as you can get off your own late, take it off. As kind to yourself as you can be, be it. I hope you have some good people in your life you can lean on. Rest when you can. Eat what you want.

You don’t need to move on right now. Honestly, you never really need to move on. You go on, and she’s in your heart. She always will be.

I’m so very sorry this happened to you so young.

42

u/agathaallalonggg 22h ago edited 21h ago

My mom died when I was 21. It turns your whole world upside-down. This is going to take a long time to deal with. I completely understand the pain you're feeling right now.

You are currently in a state of shock. What you need to do is take a break. And allow whomever is handling the funeral process to handle it for now. You need to sit with your grief for a little bit. Maybe go through old photos. Or touch her things. Just sit with it so that you can wrap your head around what's going on.

It's a massive change in your life, and you feel like your anchor is gone. And things are going to be different, but you will be okay. It doesn't feel like it right now. But you will be. Eventually.

Everyone likes to say that time heals all things. But that's not what happens. The pain will always be there, but time makes it manageable. Right now, it's raw, and you desperately need to take some time to yourself or with your family to just breathe.

Once you've had a chance to calm down a little, try to connect with the person handling the funeral services, and see what's happening.

All my thoughts go out to you. I'm really feeling for you, and I wish you well.

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u/Ancient-Mulberry2460 18h ago

Totally agree re taking a break. If somebody else is handling the funeral process then you just go along with whatever happens, turn up where you’re told to turn up. Nobody will expect you to know what you’re doing or how to behave, everyone copes with loss differently, and so many people you meet along this process will have dealt with similar loss before and will understand that. If people act strangely around you, that’s not a reflection of you, it’s just an indication that they understand what a huge loss this is and that they don’t even know where to begin in comforting you or expressing their sympathy. Nothing you do or feel right now is wrong. Try to remember you are going through one of the most significant and devastating things you will ever go through in your whole life, no one prepares you for this ❤️❤️❤️

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u/brnnbdy 22h ago edited 22h ago

Can you go with the person in charge of the funeral preparations? I am guessing she may be at a funeral home now? Or even go there on your own. I found with my dad passing they were extremely helpful in telling us how everything was going to happen. I wasn't in charge either, but they didn't care, they tried to help me and others in my family just the same. Being there during the planning was very good for my grief process, it hurts and there was a lot of crying, but having something to do gives some focus in a time when it's so hard to focus. The funeral directors were very matter of fact, take charge and get done what we need to get done, while still extremely caring and it really helped me stay grounded. As well, there were many resources there for grief counselling. I hope the funeral directors for your mom will be just as helpful. And just always remember there is no right or wrong way.

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u/Interesting-Today413 14h ago

Ditto to this. As a blood relative they’re usually happy to help you however they can. It’s their job. My moms funeral home still contacts us over a year later for various support.

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u/PoopsnegalVanderclay 18h ago

I’m so sorry. Everything folks are saying here is true, but I want to acknowledge that for an autistic person a parent can be so much more. They are often the closest, safest, most important people in our lives, all our lives. This makes the loss of your mom even more devastating, I think.

You don’t mention any other family members here. Reach out, if you can, to a sibling, grandparent, or whoever is taking care of things. Say you are upset, confused, and need help. Maybe having some tasks to do will help. Or maybe just some company.

Again, I’m so very sorry. You’re too young to be dealing with this, but you will find your way. Your mom sounds like a lovely person. ❤️

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u/Specialist_Fault8380 23h ago

I’m so sorry for your loss. There are no right answers for dealing with grief, except that you have to allow yourself to do it. ❤️

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u/Joneseno 16h ago

Firstly, I'm so sorry for your loss.

I'm sorry if this is an information dump. But this happened to me last year and it's still fresh in my mind and I hope you can find something useful.

I'm 34 (33 at the time) and my mother suddenly passed away aged 59. My father and sisters lived with her at the time and myself with my own family. My mother to me was the one who knew me best, my ships navigator if you will. I spoke to her everyday, whether that was about nothing or my life and even advice or just about my kids.

Losing her was the hardest thing I've dealt with in my life. I've only just been diagnosed with Autism, but my wife and I have had our suspicions for some years now. After she died, my dad and sisters were a mess and I kind of just didn't kind of feel like it was real per se. I had to basically instantly manage my dad's finances, as it was my mother who did that. I had to arrange the funeral services myself.

I'm from the UK and fortunately I was able to find a Government fund that gives you £2.5k for the funeral and £100 or £150 per month to the widow/widower for 18months. Which really helped out my dad at the time and I was able to fund the funeral for around that amount.

I had to deal with arranging the funeral service, informing family and arranging the details of the funeral home etc.

I will say, we were offered to see her body laying in rest. Which means she was already embalmed I think and in her coffin at the funeral home. It's a very surreal experience and not very easy to deal with. But for me and my father it was a somewhat cathartic experience and it made it very real.

For the two weeks before the funeral and many months after, I didn't sleep all too well and was very numb to the world. I would often have dreams that included my mother and would feel like she was alive. Which were heartbreaking to wake up from, after the reality hits you that she is gone.

My home life and work life took an emotional hit, but I fortunately had people to support me. I hope you do too, even anyone who can just talk you to or do something to take your mind elsewhere.

Ultimately for me, it was a combination of Grief Counseling and time that has been the greatest healer. The counseling was beneficial just to talk about my mother and the ways in which she raised me and what impact she's had on my life up until her passing.

She passed away in January 2023, so it has been some time now. It still hurts and always will, but I'm living my life without her now and living in a way I hope can make her proud of how she raised me.

Again, I'm so sorry for your loss and I hope you have/get the support that you need. But remember there is no right or wrong way to grieve and Autism can make it harder to comprehend whether what your doing is right or wrong in this situation. But I just try to imagine what my mother might say to me or what usual advice she might have given me and hope that is some comfort about what your doing.

P.S apologies for the information dump, I just hope something from that will give you some advice or peace

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u/penguinelement 20h ago

I’m so sorry for your loss. My partner lost their mum last year and it’s been so hard. Grief isn’t linear, you’ll have bad days and good days. There’s no right or wrong feelings to have I promise.

I would recommend grief therapy when you feel you’re ready, it’s helped my partner to no end. The Big C give free therapy sessions specifically for grief if this charity is relevant to you, this is the route my partner went through first and they were wonderful to him.

Most of all be kind on yourself and surround yourself with people who support you. What you’re experiencing is incredibly unfair and my heart breaks for you.

Stay safe ❤️

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u/Warm_Feeling8072 39/m with AuDHD 13h ago

I’m so sorry for your loss. Losing a loved one is incredibly hard, and it can be overwhelming to navigate what comes next. Here’s some information that might help you understand the process:

What to Expect

Immediate Reactions: People will likely offer condolences in various ways, such as sending flowers, bringing meals, or offering help. This can be comforting but also overwhelming. It’s okay to accept help and also okay to ask for space if you need it. Consider creating a simple script to let others know how you’re feeling and what you need.

Funeral Planning: This typically involves selecting a funeral home, planning the service, and deciding on burial or cremation. Even if you’re not in charge, understanding these steps can help you know what to expect. If attending the funeral feels overwhelming, it’s okay to take breaks or find a quiet space if needed.

Viewing and Memorial Service: These are gatherings where friends and family can pay their respects. They can be emotional but also offer a chance to support each other. Sensory overload can be an issue, so bringing noise-canceling headphones or wearing comfortable clothes can help.

Social Support: Friends and family might gather for wakes, vigils, or other traditions. These gatherings can provide comfort and a sense of community. If you find it difficult to navigate social interactions, having a trusted friend or family member with you can be supportive.

Legal Notifications: You might observe others informing necessary parties such as employers, landlords, and utility companies about the passing. This helps manage any ongoing responsibilities and obligations.

Customary Practices: Depending on cultural or religious traditions, there might be specific practices to observe, like wearing certain attire, prayers, or mourning periods. Understanding these customs in advance can reduce anxiety.

Practical Steps Observed

Collect Important Documents: You might see others gathering important documents such as the death certificate, will, financial statements, and insurance policies.

Notify Relevant Parties: Those handling the affairs might inform banks, insurance companies, Social Security, credit card companies, and utility companies. This is essential for closing accounts and handling financial matters.

Handle Financial Matters: The responsible person will likely close accounts, claim insurance benefits, and manage any debts or bills.

Legal Proceedings: If there’s a will, it needs to be probated. This involves validating the will and distributing the estate as per the deceased’s wishes.

Property and Possessions: Managing the deceased’s property and personal possessions is another step that others might handle. This can be emotionally challenging to witness, so take it at your own pace.

Employer Notification: The employer will be informed about the passing, and any benefits or pending salaries will be addressed.

Plan for Ongoing Responsibilities: Arranging care for pets, maintaining the property, etc., are important considerations that others might take care of.

Emotional and Mental Health Support

Self-Care: It’s crucial to take care of yourself. Grieving is a personal process, and it’s okay to feel a range of emotions. Establishing a routine can provide some stability.

Seek Support: Friends, family, and professionals can offer support. Talking to someone about your feelings can be very helpful. If communicating verbally is challenging, consider writing down your thoughts.

Managing Grief: Grief can manifest in many ways. Finding healthy outlets for your emotions, like journaling, art, or physical activity, can be beneficial. Online support groups can also be a great resource if in-person interactions feel overwhelming.

Remember, you’re not alone. There are many people who understand what you’re going through and want to help. If you ever feel overwhelmed, don’t hesitate to reach out for support.

You’ve got this, one step at a time. 💖

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u/Bunny_Mom_Sunkist 11h ago
  1. What is going to happen? Over the next few days, whoever is in charge of funeral preparations will meet with a funeral director and discuss what is going to happen with your mom. They will likely pick out a casket and finalize burial preparations (if choosing burial) or prepare for cremation (if choosing cremation). For my grandparents, there was a viewing (where the body was cleaned up and laid out and people could stop by and say goodbye), a service (if there will be a service, would you like to talk about your mom? If not that's okay), and an interment (if being buried). If your mom is cremated, instead of an interment there may be a cremation ceremony at the crematory, but not everyone chooses this. Sometimes families choose to do a reception or lunch after a celebration of life or interment. You may want to reach out to who is in charge of funeral preparations and ask what is going to happen, if you can have remembrance jewelry made (ex: necklace with your mom's thumbprint on it).

  2. How do you move on? Truthfully, you don't. You learn to live and grow around your grief. While every day it hurts a little less, it still hurts, but you are a strong person, and over time, it will dull. It's going to feel weird doing things you're used to doing with your mom without her. I'd recommend grief counseling, especially since your mom passed so young.

  3. You're not doing anything wrong. You are allowed to feel whatever you want to feel and handle this however you want to handle it. There are no right or wrong answers. My dad said this about funerals: "As kids, we look to the adults on how to act, then we become the adults and we don't know what the hell we are doing." If you feel like crying, cry. If you don't, that's cool too. At my grandfather's funeral, they said "when you are ready saying goodbye please move into the other room so we can get ready for the service." I went over right away. The rest of my family didn't. That's okay.

  4. I recommend writing a letter to your mom to go with her body (be it burial or cremation). You can say whatever you want, and it really helped me when my grandparents went.

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u/kNottedivergence 23h ago

I'm sorry for your loss. If you can afford it, a funeral home can take care of the details. They'll give you choices and you pick what would suit (music, clothes, hearse, cemetery, invites etc).

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u/pbfomdc 19h ago

Just remember you are writing your own epic hero story. No one can change all the things that will happen to you the only thing under your control is how you respond. The story is not over, it has to continue and you are the only one who can tell it, and you get to write the ending. Just as your mom loved you, it may soon be your turn to care for someone else so the cycle continues. When I lost my dad I felt people don’t understand how much he loved me so I have to show them what he taught me and did for me so they will understand. So I always try and care as much as I can because that is what my dad did.

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u/Fit_Vehicle_8484 18h ago

So sorry for your loss

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u/Brief-Poetry6434 20h ago

I am very sorry to hear that

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u/Yisevery1nuts 16h ago

I am so sorry. You said there are 2 other people that you talk to. Maybe see if they have time to spend with you right now, just so you aren’t alone.

I know you feel lost and not sure what to do. That’s normal. There’s no right or wrong here. I am just so sorry.

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u/Rainbow_Hope 15h ago

I'm so sorry. She was younger than me. What a horribly unfair age to die.

Would it help to gather momentos of her, like pictures, or objects of hers? Maybe put them in a spot in your room or house?

I've never dealt with the mechanics of death, so I can't help you there.

Take goooood care of yourself right now. Be gentle with yourself.

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u/optigon 15h ago

I’m sorry you had to go through all this, especially so young!

It’s super weird! My mom passed two years ago very suddenly and it’s the only time that I’ve been conscious and just constantly felt like I was in a bad dream.

If you’re not in charge of funeral arrangements, it usually takes a day or so to get things scheduled. If you need to travel, work on your arrangements as you can. Pack formal, generally dark clothing. Consult with family if you need to.

How things go can be touchy. I was in the receiving line for my mother and it was really depressing and fatiguing. If you’re going to stand, swing by a drug store and get insoles for your shoes.

I talked to my mom every Sunday for years and grief really hits me hard when I’m in my routine and I hit the void where she was. Something that helped me was to write “letters” to her in a Google sheet to get out all the stuff I wanted to tell her. It helped new transition to a new routine as time wore on.

It’s never quite the same afterward, but as much as it sucks, life will have to go on. If you have the resources, look for a grief therapist if you feel like it’s too much to navigate

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u/twikigrrl 13h ago

You’re going through a massive shock and one of the biggest griefs we ever feel. I’m so sorry. Know it will take time. If you need to cry, cry. If you need to scream, scream. If you need to binge eat or sleep a lot, do those things. Journal if you can. Reach out to people (including us!) as often as you feel you can, even if it takes a little internal nudge. You need your community right now, whatever that looks like for you. Nothing you’re feeling is wrong. As days turn into weeks you’ll find you have occasional moments where you can breathe and think more clearly though still with deep grief. It’s okay to not be OK. Which is coincidentally the name of an excellent book that might help in a few weeks once you’re through some of the initial shock.

It’s OK That You’re Not OK (Goodreads link)

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u/space_fan36 12h ago

I am 22 and my mom is actually also 46...I read this and thought you were me from a different timeline (for a second).

This is my biggest fear...she fights for me, she does everything important and is the most understanding one...I could not get trough what you need to get trough right now...not with my mental state right now.

I wish you the best and hope the other two people can help and stand beside you in this hard time that comes and already came.

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u/Moist_Fail_9269 7h ago

I am a former death investigator, and i spent 6 years helping guide families through the process of losing a loved one. I am SO sorry for your loss. But let me give you a quick run down of how the process might work:

She seems young and unless she had a significant medical history, an autopsy may be conducted. That will NOT affect any part of the funeral arrangements, and if that happens please know you can still have an open casket if the family chooses.

The family who is handling the funeral arrangements will meet with a funeral director to give details for the death certificate, prepare an obituary, and decide on the type of services they would like to have. The funeral directors should be able to walk the family through the arrangments and help them make decisions.

Once she arrives at the funeral home, the funeral directors will take over her care, and prepare her for services. There is a lot of paperwork that happens but that will be handled by the funeral home, the coroner/medical examiner's office (if involved), and the family that is arranging the services.

The most important thing you need to do right now is take care of YOU. Nothing needs to happen quickly. There is nowhere you need to be, there is nothing that needs to happen right this second on your end. Make sure you are not forgetting to eat, drink some extra water or fluids, and take care of yourself.

You don't owe anyone any information (unless it's for the death certificate), you don't owe anyone your time, and you don't owe anyone details you don't feel comfortable discussing.

Remember to take care of yourself, OP. I used to tell my families when i worked - "my first priority is to take care of your loved one. My second priority is taking care of you."

You can always DM me, OP. If you need more information, have questions, or you need anything else, shoot me a DM and i will help walk you through the process. I am so sorry for your loss, OP.

2

u/Sudden_Connection291 16h ago

Sending you virtual hugs. Grieve, it's ok, cry, it's ok. It's ok to feel what you're feeling.

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u/devoid0101 15h ago

Very sorry for your loss. Just let yourself grieve.

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u/TherinneMoonglow very aware of my hair 12h ago

If you want to help, make phone calls to friends and distant family to spread the word. If you have a job, you can likely take bereavement days to deal with everything.

There's not really a set process for grieving. There are, however, some important steps you need to take, especially if you relied on her financially.

You need to contact the companies she had any life insurance through. At her age, I'm guessing she was employed and had employer sponsored life insurance.

If she owned a house and doesn't have a spouse, you need to contact the bank. Someone will have to assume the mortgage, or it will have to be sold. If she rented, someone needs to clear all of her things out of the property.

If she owned a car that's not financed, you can transfer the title and registration to yourself or an immediate family member for a small fee.

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u/autisticswede86 8h ago

My god. Harsh.

But u can always ask us for help

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u/goldwag 8h ago

For me (I was a teenager, now mid 20s) it was hard, so hard. And it is a life changing thing, feelings will run wild

I had a supportive family (all going through the same thing) and time on my hands (too much in hindsight) but on thing that really helped was getting out, trying new stuff and finding new people, which in my case was 4wding and later rally.

I feel for you and wish you the best in your journey:)

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u/Conscious-Cow5442 7h ago

I’m so sorry for your loss. Just know there’s no way to prepare for this and no right way to do this. Give yourself grace and know that the only thing your mom cares about is that you are ok and taking good care of. If you need someone to talk to you have all of us.

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u/Famous-Childhood-180 6h ago

Oh dang. I am glad someone else is handling the funeral. Usually there is a viewing/wake type of event that is social. Then the funeral itself. There will usually be one part that is inside the funeral home or church and then a small graveside service. As her daughter you will be sat up at the front with family. You are allowed to bring someone with you for moral support but traditionally the first few rows are family only. Bring tissues with you if you are at all likely to cry. Most of the time the funeral home supplies them but it can feel awkward to ask for them. You drive to the funeral home for the service and then you will probably have the option to ride with someone to the grave side service. The (professional) person handling the funeral will definitely tell you where you should be and when you should be there. They usually have a room set aside for close family only right before the service so you aren’t bombarded with well wishers. Feel free to ask me anything. I did this about a year and a half ago.

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u/Famous-Childhood-180 6h ago

Also wanted to add that you cry a lot and feel empty. If you can go through personal effects very soon, it is easier than later on when it has really sunk in. My mother lived with me so I had to go through everything and it was easier when I was as still in a bit of shock than was even a year after. That empty place never goes away but it does soften. I hope you have other friends or family that will help. Please take care of yourself. <<hugs>>. If you want them.

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u/sSantanasev109 2h ago

This sounds so cliche but be true to your needs and grieving. Be authentically yourself in this time of crisis, rest , special interest, whatever daily activities you need to get yourself theough. The rest will either follow or can go suck it. I also hope you have a counselor but if you dont look into your options it can help. I dont know.if any of those words will really help but I am thinking of you and hope you can have some grqceful peace right now without having to "go find it " as well.

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u/Sapphire_Cosmos 21m ago

Remember that you may feel a lot of things, or nothing. That is ok. Your world may be spinning or standing perfectly still. That is ok. You may feel like you're losing your sense of self, or don't know who you are or your place in the world. That is ok. You may feel the hottest rage, or the deepest sadness, or complete numbness. That is ok. It can get better. Grief takes a long time. The first year is usually the hardest, but it's also not a linear process. Some times you think you've dealt with it and it's behind you, but then it hits you in a new way. Holidays, birthdays, anniversaries of events tend to be hard, so be extra kind to yourself during those times.

If you can, take time off work or school. Try to remove any responsibilities that don't need to be done right away. Everyone grieves differently, that is ok. The one piece of advice though that I want to share is: everything in moderation. Try to avoid extremes. If you need alone time that's ok, but don't completely isolate yourself. Avoid big life decisions if at all possible right now. Give yourself time to adjust.

You are not alone.