Family and Caregiver Schizophrenia Discussion Forum

Decision on Living Arrangements


#1

Currently my 31 year old son is living in my home with his father and me.
He has gained back his insight to his condition.
He is medication compliant on clozapine although his schizophrenia is refractory and he still experiences command hallucinations that continue to torment him some days and I often manipulate his medications and try to lower his anxiety or distract him with an outing when this happens.
He has been relatively stable for a year or so which I am truly grateful and thankful.
I worry when I am unable to care for my son, my husband and younger son will not takeover.
Neither has a lot of empathy or tolerance for his condition and odd behavior.
Also he does not have much in the way of activities or social life although off and on we have tried many different ideas.

I am trying to decide what might be the best living arrangements for my son and us.

I am contemplating whether it would be better to place him in a lovely residential open campus facility that is across town which would cost similar to assisted living for seniors so would be a financial burden on our upcoming retirement. He would have his own efficiency and they provide social activities, outings, opportunity to work a few hours for minimum wage and monitor him. I worry if this would not work out, my husband would not be willing to take my son back into our home and it might be difficult to get my son back to the level of stability we have right now.

Another idea would be to build an apartment on my home or find a home with such an arrangement. Although I don’t think isolation is a good idea for my son but would probably make my husband happier. It seems if he were in a totally separate apartment, with no caregiver, it would be harder on me to have to go there to check on him and again he would be isolated and most likely his condition would degrade.

We could stay as is, but at some point I may not be able to care for him and it could be harder on him to be placed at the residential facility after experiencing the trauma of losing his caregiver. Also my husband would really like to retire with just the two of us, maybe even travel and have freedom. Currently I can’t leave my son for more than overnight which again I am blessed we do get that time alone usually once a week.

Any thoughts, experience or ideas are greatly appreciated.


#2

What does your son want to do?


#3

Well he is unsure also. He has become dependent on me and is wary of change.
He seems to like some of the idea of living independently again and having activities and socialization.
He is concerned about the long term expense on the family.
He is worried he will change his mind after he lives there.
He is willing to visit the place in the next week or so since it has been 2 years since we first contemplated the idea.
For residents that are able, after the first six months, they can live in off campus apartments and come to the facility for meals and activities. This also could save some money and offer increased independence for a 30 something adult.

Since we live in town, I can still take him to his appointments and he can still go out with the family.
Other residents probably see their families much less frequently since they live further away.


#4

I am guessing your husband is onboard with the added expense during retirement?

The residential campus sounds like a really good option. You would be able at this point to assist your son in the transitional period - that seems rather ideal.

The transitional period will probably be quite long as he adjusts.


#5

He wants to be around other people and wants the independence. Seems like it’s worth the risk of giving it a try.
Have you worked out the details of what would happen if moving into the facility doesn’t work out for money or other reasons?


#6

Is the residential facility equipped to handle folks with a serious mental illness. Would they be giving his medication. Are there are folks at the facility with a mental illness is what I would ask.

Have you considered a foster home with caregivers who are very familiar with mental illness. There are good and bad foster homes. I’ve heard about some of the bad ones but luckily my daughter’s caseworker was able to find an excellent home for her. She receives her meals family style so she does have interaction with women just like her. If your son is receiving social security that money can be used to pay for the foster home so it doesn’t come out of your budget. I live in Oregon and I feel that my state does a pretty good job of proving care for folks with mi. It isn’t perfect but then nothing is. My daughter does not do well living alone because of the isolation, she doesn’t remember to take her medication and she doesn’t eat well. I have tried almost all living arrangements for my daughter and the foster home so far seems to be working out the best. Good luck to you.


#7

Well I guess the best idea is to have him go see the place again in person and decide if he is willing to go.
He wants to ask the current residents how they like it. But he still is saying it is a rip-off and he is happy living with me and not doing much of anything since he believes he is unable to socialize anymore.


#8

My husband is definitely not happy spending that kind of money but he also would like to have freedom.
He leaves decisions up to me and just complains with the outcome.

One problem we have is that my son does not have a caseworker because he is on SSDI and MEDICARE, not SSI and MEDICAID so they don’t really provide services like a caseworker for him.

I did see another program in my city that could be shorter term that could be a full day program or a residential program but is more money per month since the place is for profit. It sounded like it would have young people with SMI gain back life skills and independence. My son was totally opposed when I mentioned it. I might try to convince him to at least go over and check it out in person.

I think he is relatively content living here with me but he really does not do much of anything so I am not sure this is the best option for his recovery. I do realize he does not want change and anxiety definitely triggers symptoms but should we give up in trying to get him to live independently and have a more productive life?


#9

I do think @wreklus ‘ point is important. If my son is not on board with a situation, he may go along for a while, but not long term. When it’s what he wants to do, it’s a different story. (My son is unmedicated) We went the build a garage apartment route. He objected strenuously, moved in as soon as it was ready and began destroying it 2 1/2 years later.

It’s probably way too early to give up on a fuller life for him. Recovery often takes years and years and years for some of our family members.

Your son’s ssdi is so high that he doesn’t qualify for ssi and Medicaid? The only reason I ask is that where I live they don’t automatically sign you up for ssi and Medicaid. They add it when you ask, but We had to ask.


#10

My daughter was on SSI but when her father retired she was eligible for SSDI and Medicare. The money she received on SSDI is substantial more than SSI. On SSDI my daughter was still able to receive mental health care through the state of Oregon.


#11

I appreciate hope’s comment about building the garage apartment and son not willing to live there. That would be an expensive mistake that was one of the options I was contemplating.

He gets extra help for Medicare which pays the premium and lowers his prescription costs from normal Medicare. He also gets Medically Needy Share of Cost where Medicaid provider costs that exceed a threshold in a month could be submitted for reimbursement.

We will look at a day program downtown and also the long term residential program and see if he wants to try either of those options. If not, I guess we will continue with the status quo. I just feel like maybe there could be something we could try that might give him back a more meaningful life again.

Oh and for Patrica6, this program is designed for SMI patients and they monitor the resident takes their medications and goes for doctor appointments and counseling and even work a few hours for minimum wage if they want. A while back I looked into group homes and foster caregivers but nothing panned out.


#12

There are also private pay care managers. I have heard of situations where the person with SMI lives in a more regular setting (apartment) and you can pay for a care manager to be involved to some extent of your choosing. The one I know a little bit about will customize the care according to the need. For example, it might be a daily phone call and once a week face-to-face and someone he could call in an emergency. This might be less expensive than a residential “facility”. They can set this up for care beyond your lifetime, as well. Someone at your state’s NAMI office might be able to give a referral.


#13

qutepi, I don’t know where you live, but if you happen to live near a high-quality, accredited “Clubhouse,” that might be a good long-term solution for your son, and more affordable than the residential facility you described. There is no Clubhouse in my area, but a few parents are trying to band together and start one for exactly the reasons you mentioned. If you are unfamiliar with the concept, take a look at Clubhouse International. The only Clubhouse I have visited is located in Greenville, SC. That one is excellent, and it offers housing (most don’t).


#14

Well private pay care manager and clubhouses are all good suggestions if available near me.

We ended up stumbling across a new 7 day a week day program that tries to help the clients reach their work, education,socialization and independent living goals. My son is starting tomorrow. We are both excited about trying something new and having activities to fill up his time. The downside is transporting him downtown in traffic every day and of course the cost but since the program just started he will get a lot of individualized attention and fun outings in a small group. Hoping this experience will build his shattered confidence back to the point he could be more independent and productive like he once was.


#15

This sounds really great! I’d love to hear how that goes for your son.


#16

This sounds like a great option!


#17

Just wanted to report in that so far the day program has been working out well.
He gets socialization with others besides me, outings, life skills, group therapy and it gives him something to do all day besides tasks the voices command.
It is expensive and I have to either drive downtown twice a day or he could take an Uber or get a place to live nearby but so far has worked out very well.
He is getting a lot of individualized attention since the program is new and only has one other client.
They are trying to encourage pursuing work or further education and living independently again.
Not sure what a next step would be but for the time being this is a nice change of pace.


#18

That sounds like a solid program.
Driving back and forth seems like it would be disruptive to the rest of your tasks for the day. Definitely seek a place within walking distance for him, if that’s a viable option.
Also, find out if insurance / state / charity will help cover some of the cost of that treatment.
I don’t know what it’s like in your situation, but I do know insurance would cover the majority of some similar programs in my area.