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Who takes care of them? When we are gone


I have been struggling with this for awhile now. Who takes care of our kids when we are gone?
My daughter seems to be doing well now but can’t handle money and gets anxious being around other people. She has not been approved for SSI yet and we don’t have a lot of income. She told me the other day that if anything happened to me, she would not take her meds and it would all be over because she didn’t want to live without me. This really depressed me. She has always had a little bit of a separation anxiety. I know her brother does not want to care for her (he and I have discussed this in length and I am really disappointed in him). Do I have the right to feel that way?
I would like to move out and get a small, manageable house that she would someday live in. Am I on the right track? There seems to be so much in the air that should be handled if I only knew how to do it.
Any advice would be appreciated.


Are there any NAMI groups in your area where you both could attend? We haven’t found anyone step up and offer to take care of our son and I don’t think that is going to happen.

We established a trust that will be managed by a bank and then it will likely be turned over to the state since that is likely who will care for him. Our sister in law is executor of our estate but she is older than we are and pretty hyper in personality. Not sure how it will work.

I try not to blame people who don’t wish to step into this role. It isn’t something you would choose for your life.


I think a small house that is paid off is one option for her future. How is your battle going to get her approved for ssi?


A special needs trust could be set up to pay for her expenses throughout her life. A smaller house would be manageable but don’t close yourself in before you are ready. I think having some space is good too. Someone on here said she will always have a big tree in a large years so her son has a place to sit and be with nature. This is similar to my son who could sit outside for hours. A shade tree would be helpful.
Our son would receive more SSI when we pass and that should pay his household expenses.
We enrolled in an ACT team which check in on him several times a month and that had started. I will turn over money management to them so I don’t have to hear about that anymore. His delusions about what he wants money for are not healthy for him so the more people who can redirect him the better.


We were told that if someone is under guardianship, the state will have to step in and assign a new guardian if one is not designated. Which kind of gives someone the right to look after our family member and “interfere” with their life by making sure they are eating food and possibly not homeless.


Thanks for asking. It is still a struggle. We are now waiting for a hearing with the Administrative Law judge which in our area can take up to 14 months. I have been to lawyer after lawyer in this town and no one will take her case to help with SSI. Very frustrating.


@dkgreg I think about this subject all the time. I have mentioned that I am a single mother and my oldest who is married and lives 2000 miles away has made it very clear that he is not to be counted on to help with his brother if anything happened to me. (By the way totally okay to be irritated and disappointed by that while also realizing full time care taking is not for everybody) --Having the disability income in place makes a big difference and I can’t understand why you are getting such an unfair run around about that,

As for what your daughter said, that does tear at your heart but attitudes can change over time. I see it in my own sz son. He has been doing well for a number of years now and still has issues that would make it hard for him to live entirely on his own but I see tiny little improvements with each passing year that give me hope.

I think he would be lost and directionless if I was suddenly not here. I think that is why I am working so hard on my health to stay strong and well for as long as I can for me and for him. I think I can get him comfortable with basics like paying bills and shopping and preparing his meds each week and much more. It is an infuriatingly slow process though. The thing is he learns by doing it with me and it takes several and sometimes many repetitions before I see a “look of comfort” on him when doing something by himself.

I have gone back and forth about having another guardian after I am gone because he would not go for it, he would probably unravel or try to run away-- so time will tell on that idea. I am hoping to make it where he will have some kind home nurse check in on him even monthly especially since he will need his monthly blood draws anyway and we had that service before so he is familiar with that and would support it.

There are just so many little idiosyncrasies to overcome. I am also creating a notebook with careful, simply written instructions on how and when to do things, who to call for what and phone numbers etc…he is very good at following written instructions, so that seems the most practical thing to leave him with. I will probably downsize eventually, which will be easier to manage for him. I do have a couple of friends who might be willing to check in on him from time to time but it wouldn’t be very often.

The other thing I have considered and it hurts my heart to even think of it is that my son could pass first, he has an unspecified seizure disorder that is controlled by medication (now) but the 2 seizures he had before the medication came into play put him into an unresponsive comatose state each time, the first time was a day long and the second was about 16 hours or so. Each time I thought I lost him so I don’t know if the medicine will always work or not, I just take each day as a gift…he also smokes and while he has cut down a lot it is still a health concern long term.

All we can really do is take one day at a time, try to prepare our loved ones as best as we can, take good care of our health and get our legal documents in order. Most of all enjoy the ‘wellness’ our kids have when they have it and try to make the most of that whenever possible.

I am not sure my two cents is of much help, just know I think about the same thing all the time. Good luck with the SSDI. I hope it comes sooner rather than later for you and your daughter. You have waited long enough.


I’m sorry, its so frustrating.


Catherine, your two cents is always a great help to me. It never fails to give me insight and hope.
I am praying you son’s seizure medication works and he never has another one.


Thank you for your posts as well! I wish there was something I could say to help you with that SSDI issue, that has to be so infuriating. My best to you and your daughter.


We got on a list for an administrative law judge in July 2016 - only up to 6 more months to wait. This is ridiculous.


How old is your son? I think it is very difficult for a young adult who is trying to figure out their own life to consider the idea of becoming a guardian for someone else. Your son’s thoughts on this might change as he has more life experience. Also, if your daughter continues to be stable, the idea of it might become less daunting.


I have a brother who suffers from Sz and can be quite violent. By chance, I was introduced to a psychiatric nursing home for him and in the beginning my brother hated me for putting him there and wanted to go out. I remembered my dad asking me not to leave my brother out in the street and I remembered staying silent because at that time I didn’t know if I could make that promise. My brother is 60 years old now and have mellowed down a lot. My parents have passed away and I have migrated to a different country. With my brother taken care of in a nursing home, the arrangement seems to have worked so far. I aspire to the day when my brother would be able to live in our parental home. It is probably a long shot but then life is a long journey.


Thank you for your posts. I have fears about it too. My son is 22 and wants to stay in what is his only home, but it is too big for him to manage, I struggle with it. I am working on the special needs trust but his dad still owes the loan and hasn’t paid it off from our divorce 9 years ago. His sister is an hour away and has her own family now. He had no problem getting SSI because his doctor worded his report well. He also smokes and is on his way to diabetes. But he can’t manage money or cleaning anything or able to get to appointments and pharmacy. Yes it is very small steps. I am looking into Volunteers of America housing and Assisted livings and a program that will visit him at home, but the resources in my county are slim to none.
I so appreciate all your posts, knowing there are others who have the exact same issues and feelings, is a comfort xoxox