My 22 year old son is next on waiting list for a 1 bedroom apt in section 8 apartment complex in a decent neighborhood 7minutes from my house. I have so many mixed feeling about this new turn of events. He seems very excited to get his own place ,but I have my concerns. I am worried about him becoming more socially isolated and not being motivated enough to do the cleaning, wash and cooking. Also he has my company and that of his sister, who is over a lot. Even tho he doesn’t interact with us that much, I sense he enjoys us just being around. I also won’t be able to see his moods on such a close daily basis. Its kind of breaks my heart to think of him being alone in his apt every night. He and I run errands go to doctors appts and other stuff nearly everyday. We can still do this but I feel I won’t have such close connection to his emotional states. He also enjoys our pets so much, they bring him lot of closeness and affection.I know he really wants to do this and I want him to be more independent, but also I have the other concern he will be more able to get street drugs. I am excited for him when this this happens, and he can always come back if it doesn’t work out. Any stories or advise on how your children fared on living in their own place?
My son lives separately from me. It did not work out well until he got onto a med that worked.
I think as long as you are able to keep an open door at both your place and his, it could work out fine for your son. I help my son out a lot, almost daily dropping in to drop off groceries, fix a quick meal, and just see that he is okay. He does isolate, but that seems to be his preferred state, and there is just so much I can do about that - his paranoia keeps him from doing a lot of things. I am fortunate that my son has no interest in street drugs anymore, so that has not been something I have to worry about.
Also due to paranoia, my son doesn’t want pets, but I sometimes bring ours over and he always enjoys that.
My son does quite well living on his own. I think having his own space helps keep his stress reduced. He currently lives in an apartment over a garage next to our home. Occasionally his space does get behind on cleaning, he eventually cleans it and he keeps it relatively neat. He socialized more when he lived in a city on his own, but city living stresses him out.
Thanks for the input Vallpen. We are both kind of excited for the move, but with section 8 housing, you never know how long it will be. We have lived together such a long time, except for a semester of college when he went away, which was pretty much a disaster. Also he was away for his hospitilizations, but we have been together alone for last 8 years, since his dad and I got divorced. There have been a few times here and there were older siblings moved in temporarily, but we have held it together okay for last couple of years, since his diagnosis and he is med compliant. It will be a change, but I am hoping a good change. So glad we will be living about 10 minutes away.
Thanks for your reply Hope. I also think it will be good for my son to have his own space. Will keep you posted.
My family member has never made it into independent housing.
I would share your concerns.
As you write, you will be able to see him pretty often and also invite him over for meals, maybe to do laundry (?), and to spend time together like taking walks and watching tv at either place. You might offer to take him to the grocery store when you go, picking him up and dropping him off at his apartment.
If he can be independent, that is a huge accomplishment. You are a very caring parent; I think you will find ways to stay connected.
Every person’s recovery path is so different. I think you have to carefully judge the situation on your own and see what changes, positive and/or negative you see with your son, over time, and then make adjustments accordingly.
True, you won’t be there to readily see changes immediately, but hopefully often enough to catch anything before it gets out of hand for him.
I wish my own son could have lived independently, but the stress of independent living has proved too much for him in the past.
I tried first placing him in a large monitored group home setting for 4 months, where he had his own bedroom, and shared the house with 4 other recovering mental patients ( all males and all on their meds) all had their own rooms, and shared dining space, living room space and shared 2 bathrooms…and was monitored by a trained psychiatric social worker 24/7. It was just way too much for him and ended in a lengthy hospitalization, so I decided then I would keep him with me indefinitely.
He is calm and peaceful with me and rarely seems to have very little if any stress or notable setbacks. He has gotten much better over the years.
My son’s outcome with the group home or independent living is certainly not everyone’s outcome though, some can do very well on their own with just family visits for support, which is why every case has to be looked at individually.
Still, I am always aware that even wellness can change in a moments notice and doesn’t even have to have a “reason”.
As I have mentioned before in another thread…I am, (after 12 years) taking a long overdue break from care taking and going on a mini getaway by myself. I will leave at 9 am Tuesday morning and return about 9 pm Thursday night. I will be taking a mini road trip to go visit my best friend from high school who lives the next state over (about 4 and half hours away) My son, who has a very “set” routine, is “set up” in our home so as to not have his normal routine disrupted.
Everything is planned as best as it can be. He is happy and excited to be given this opportunity. It appears maybe for the first time ever, he somewhat wants to “prove” to me that this will go very well. I am nervous (naturally) but I feel positive that nothing disastrous should be expected. If this does go as well as my son and I are both planning for it to…we will expand on it in the months and years to come and who knows how far it will evolve? I am really full of newfound hope with this trip. Maybe my “indefinitely” will change.
I wish you and your son the absolute best of outcomes with this new living situation, it is really an exciting opportunity.
Thanks, I think it is the right thing for him to try it , as he seems to think it will be so nice to have his own place. We live in a small 2 bedroom condo and he has his own room and he gets time to himself because I work part time and go out on my own sometimes. if it doesn’t work out at the apt. I think I might sell condo and try to get bigger townhouse with basement in same area, if it is affordable. I know he has to do it because the chance to get these apartments doesn’t come around too often, and even now we don t know it it will be a month or a year or maybe more for one to be available. it will be bittersweet when he does leave because he is the type who will isolate himself. I am overthinking it I guess, but I always want him to know he has the option to live with me again. It will be hard on rainy night to know he is alone and he gets bad dreams a lot and always tells me in morning. But he needs some independence so we will give it ou best shot and I feel lucky that he even got on the waiting list. Other problem tho is there are no stores or coffeeshops to walk to from apt., but then neither is there from our condo.
It is great you are going and starting out with baby steps is good. .He may be getting ready for a little more independence which you both will benefit from. It will give you an opportunity for a little more worry free time away if you want it .Your son sounds very responsible at this time, know that can change art a drop of a hat with sz, but there is always something to keep us hopeful as time goes on living with our new normal.
Well said and so true!
My daughter had a psychotic break at age 19. It was impossible to keep her at home with both me and my husband working full-time (30 and 50 miles from there, respectively), so we placed her in a group home. It was a good one with strict rules. Within a few weeks, to our shock, they moved her into a section 8 apartment… One that was a 3-hour round-trip from our home.
They did it well, though we felt it was too soon (they had to make room for new arrivals in the group home). They checked on her daily in person and three times daily by phone to remind her to take her meds. They also connected her with an agency that helped her find part-time work and another agency that took over the visits for a while.
Finding work was the vital part. She needed a routine. Just like everyone else! That’s what prevents the boredom that leads to despair and making poor choices. Work connects you to people who expect you to show up because they need you. They value you. And co-workers are often decent people–they’re not people you meet hanging out on a street corner somewhere.
We obtained Vocational Rehab services for her, too. There were a lot of failures on the way, but after about 18 months she was working steadily three days a week. She’s had two similar jobs since then, for a total of 18 years. Yes, she’s now 38 (somehow, we got older, too). She’s still taking her meds and working and has gained skill in driving and finding her way around the state. She’s married to a disabled man and has a few real friends and many Facebook friends.
She is able to drive to visit us from time to time. We were finally able to put together enough money for the down payment on a trailer for her and her husband, and they’re paying the mortgage. We remain her legal guardians. Fingers crossed… so far so good. Hope our experience is helpful to you.
Wow we are facing the same issue…living on his own for the first time since diagnosis. Glad you posted this and I too am looking for replies!
What a really great support system - where are you located? If you don’t mind my asking, this is exactly the sort of system we all need.
Something that really helps us keep an eye on our family member is the use of home cameras. We use Canary cameras, but there are many other brands (Nest, etc.). Cameras are set up in the main areas of the house, like the kitchen. We can then check on things whenever we want, using an app on our phones. There’s no cost other than the cost of the cameras and wireless internet service. Usually, but not always, our son actually likes knowing the cameras are on and keeping a watch out. They make him feel safer.
We’re in Maine. But keep in mind that this got cobbled together nearly 20 years ago. The core, as I said earlier, was to structure her days and make sure she knew that people were depending on her to be certain places at certain times because they valued her work.
There were plenty of snags on the way to our daughter’s successes.
First, our local community behavioral health center flat-out refused to provide any services (beyond whatever counseling our insurance might pay for). Months later I figured out that though our daughter (I’ll call her Jane) had had two (2) week-long psych hospitalizations, they’d received records of only one–and they required a minimum of two. At the time, the BHC refused to explain, and thus I had no way to know I needed to ask the psych hospital (in another state) to re-fax her records.
Back then, I was working in a health-related organization an hour from home. I had a great supervisor who let me keep Jane curled up on a blanket in a corner of my office during the day, sucking her thumb and hallucinating (we did have a psychiatrist; the meds were being adjusted). My husband worked across town. I found a hospital-related outpatient program that agreed to keep her busy about 3 hours a day, though their target patients usually didn’t have psychotic disorders, and ferried her to it each morning. In the afternoon, my husband picked her up there and drove her to the VA, where a fantastic recreational therapist had agreed to let her volunteer in her program (Jane played piano and chatted with dementia patients, which everyone enjoyed). I’d pick her up there and bring her home.
Meanwhile, I was investigating group homes, practically shaking with fear. I did find a great one; it was another half-hour farther from our home, but hey, we were desperate. Getting her admitted was easy for us, but not for everyone–their core concern was “is she violent?” Thank God, she was not and never had been. That bumped her to the top of their list. In order to get paid, the group home did the application for Medicaid that we hadn’t even thought about, and advised us how to get started applying for SSI (which took two full years) and Voc Rehab.
Voc Rehab was a shoo-in, but her apartment was on the border between two of their regions, and her files got lost (or the coverage zone disputed) for about 6 months while I kept pestering people about why services weren’t starting. She tried and failed multiple jobs for about a year. She was way too groggy and slow for fast food, and when she tried to use the techniques voc rehab taught her to wash dishes in a real restaurant they fired her because they insisted on illegal methods. She loved working in a little cafe, but she acted odd and got marginalized and jeered at.
Meanwhile, my husband and I drove that 3-hour round trip to Jane’s apartment at least every week. We joined a church there and got her to accompany us, trying to integrate her into the community. That was sort of successful. (Actually we’d tried one church earlier, but I was too honest when someone asked what her problem was. The word “schizophrenia” slammed all doors in our face.)
There was less pressure on social services then than now–less austerity and thus more available service providers, so services were easier to obtain. I got her an Intensive Case Manager who was a godsend–she coordinated all Jane’s services for about a year. I tried & failed to get her an Assertive Community Treatment (ACT) team. That was what I call a “fail your way to success” problem–they have to be able to demonstrate huge gains for every patient, so a new patient must have failed badly at a few other programs first. ACT can’t be used to prevent those first failures, only to rise from their ashes.
We also obtained full guardianship (financial and medical) as well as Power of Attorney (POA). That meant hiring an attorney to see us through probate court. Jane was interviewed by a temporary Guardian ad Litem as part of the process. Our excellent lawyer made sure that her excellent verbal abilities weren’t held against our quest–she’s quite well-spoken and appears healthy at a glance. I had arranged for her to have a complete neuropsychological evaluation, and the report helped a lot both with guardianship and SSI. Luckily for us, Jane was in favor of our guardianship. She trusts us not to misuse it, and we haven’t. One counselor refused to comprehend my explanation that 1) as her legal guardian we’re entitled to communicate with therapists and 2) HIPAA permits therapists to listen to even non-guardian parents; they just can’t share info with them. Since the counselor wouldn’t let me explain that Jane has documented problems with comprehension and memory, she wound up firing our daughter for “not carrying through on agreed-upon goals.” So we found another.
Voc Rehab helped her apply to work in a nursing home. She did well there for several years, helping with diaper changes and such. But one CNA was a tyrant who picked on her so hard that Jane got scared to ask for help. She wound up “neglecting” a patient when she couldn’t locate any other helpers and got fired. But she found a job at an assisted living much closer to her new home with a supportive boss & co-workers, and has been doing fine for years.
We don’t have any million dollar stock portfolio to help out once we’re gone. We wrote our wills to include a special needs trust to shelter Jane’s tiny eventual inheritance from the rules of SSI (now SSDI, siince she’s worked for years) and Medicaid. Without that trust, the moment she inherits any money all her services will stop. No SSDI payments, no Medicaid or Medicare, nothing. Once she’d spent her inheritance down to nothing, she could re-apply… and that process takes about two years minimum (Republican politicians, with some Democrats agreeing, have under-funded these agencies so they’ve had to lay off thousands of the workers who screen applications). Her sister (our only other living relative) has no spare money, so I can’t imagine how Jane would survive.
As you can see, the burden was on us to keep finding new resources and making them work. It’s still on us to keep them in place. We’re now both in our 70s, and we’re grateful that Jane’s sister (who lives across the country) plans to take over when we become more disabled and eventually die. Thanks to the current (I hope temporary!) ascendancy of Republican politicians, services are getting harder and harder to obtain.
This post has been incredibly helpful. What a terrific guideline of necessary ‘Things to Do’. Thank you so much.
You’re very welcome!