Family and Caregiver Schizophrenia Discussion Forum

Life Plans and Ideas


#1

My husband and I are considering having him quit his job and stay home with our daughter (age 10) once she comes home. We make too much with his income for any kind of assistance (together about $100k a year) but without it we would qualify for a lot more. My career is stronger with more options long term than his. But my income is a lot lower, about $35k a year plus benefits. Has anyone done this?

We are concerned about her safety when she does come home. We think one of us needs to be home full time. Any thoughts would be helpful. This is all hubby’s idea. He works as a truck driver now which is physically killing him and he is gone more than he is here.


#2

Husband alone makes over $100 a year. That basically screws us.

I was working…and that made the financial end even more difficult.
The time I had to take away from work, the childcare costs, the food, the constant issues that meant one of us had to leave work for the day…it fell to me. I made less, and could handle the day to day stressors involved.

Think about it: I was already in social work for clients with MI. Hmmmmm? Now our son is struggling. So, for us, I quit.

Husband carries a heavy burden as a result. He must remain employed. The last contract he had required a hefty portion of insurance cost for us. That literally bankrupted us. We have retained a lawyer and are in the process right now.

Because he’s over the 100k, agencies like SSI tell us to “divorce” and they will cover.

We now are considering as he ages. He can’t do this physically intensive work forever. We may utilize my ability to work in the future, in effect, switching places.

Personal warning? Our son overheard a lot of dialog about finances. We don’t yell or argue, as we actually have a very quiet house normally. Still, he overheard. NOW, the belief that he is a financial burden is present. This is not good as he tends to become suicidal fast.

I wish we were more careful. Husband warned me a few times about what I spoke of within his hearing. I thought I listened and was more careful. Apparently, either what was said or observed was enough to set his mind on the belief that he is a “burden”.

He’s not.
I was just trying to figure out how to pay for Seroquel out of pocket.
Long term care is our concern right now. The future.

This contract covers more insurance cost. Husband signed on with a company that is based in Australia, so the coverage is consistent with their standards. Far better than the US as far as the amount the employee must provide. Copays reduced as well.

It’s the copays that kill us.

You’re close to the same concerns we have. How can two people take care of the family, now that the dynamics have changed, and still maintain overall health of each family member?

Husband HATES being away from us. Why we travel with him for each job.

Just rambling about what we are doing, and where we are right now.
He can’t work forever like this.

I “get it”. .

OH!! Happy aside!!!

Son went to WallyWorld to pick up some yarn for Libby!
Dang…he went into the dreaded WallyWorld.

Give Libby my thanks.
He also came in lasts night to “inspect” if I was making the item as he saw fit.
Never did that before.

Glad he’s taken an interest.
Thank you!!


#3

I am so glad he is taking an interest. My heart is so full of gratitude to you both, especially knowing where your life is that you are reaching out to lift her up. Thank you so much!

Thank you for the perspective too. It helps. It won’t be easy but my job is at risk the longer this goes on and having him home with her will allow me to excel at work and open more opportunities in my career. There’s freedom in just letting the cards fall.


#4

My SIL and her husband did something like this - not quite the same- their child with autism aged out of school programs and was rejected from several work programs due to behavioral issues, same thing with drop off day centers. Their child is in his mid 20’s, has nonverbal autism and can throw a pretty violent tantrum. Only his dad can handle him when it gets wild. When he got kicked out of his last day program, his mom went to the social security office to ask for help with son along, as Dad worked the day of the appointment. She was hoping for another day program referral.

Got pretty bad at the appointment when my nephew got restless and the questions started being about life at home. How the frig had to be wrapped with some kind of chain, the pantry had heavy doors and deadbolt locks. Events that had occurred and damage that had been done when one parent had been delayed and the other parent had to leave the son alone to avoid being fired.

It turned out there was some sort of federal funding available for a parent to stay home and be paid to be a caretaker. Now her son qualified for this because he was an adult and requires constant monitoring. Whether or not there is such funding available for a child with severe issues that must be homeschooled, I don’t know. But maybe you could find out. Her husband quit his job and he says home with their son. I think she said they have to submit schedules of their days and events - there have to be actual activities.


#5

Hospital social workers are good sources of information.


#6

Yes, I agree with @hope. Ask social workers in the hospital or local department of public health, health and welfare. They helped us immensely.


#7

I think it may be a good plan.
A friend of mine works and her husband stays home to take care of their daughter with cerebral palsy. He takes her to all her therapy apps, doctors, etc. it works well for them. She has the higher paying job and stable career.


#8

Fortunately we are doing all our plans while she is in the hospital so no chance for her to overhear. I am not sure if I want to tell her or just wait until she comes home.

Right now she is completely stable in the hospital, which is always the case for her. She does so much better in a highly structured environment, which we can’t really give her. But without symptoms they will just send her home. Nurse says it’s a honeymoon phase but I wonder again if I am being played for a fool.

The idea of essentially blowing up our life and starting over scares me. We can rebuild but it will be stressful too. We don’t know what to expect next and are just waiting for some kind of sign. Ultimately the decision is mine which has a lot of weight. And I don’t want to jump to a rash decision.


#9

I personally think everyone should work as long as they can. If support truly cannot be put in place for your daughter, quit then and only then. The bigger the care team is the better life your daughter will have. Not that anyone can care for her like her parents, but she will learn and grow more with more relationships.


#10

The biggest issue is keeping her safe and responding to a crisis. I have missed a ridiculously large amount of hours the last 30 days. Plus right now she is alone from 3:30-6 five days a week. With a child who has repeatedly said for three years she wants to die and has started forming a plan, plus talks about cutting herself, we are increasingly fearful she will take action. And I do not have any idea what I would do if she killed herself. At this point we are just trying to keep her alive and that’s a daily struggle in our lives. Anything else just doesn’t really matter in comparison. I am legally responsible for her and my job provides her health insurance so I can’t leave my job (hubby is stepfather, bio-dad is a deadbeat) which leaves hubby as only option. He hates his job anyway and is happy to leave it.


#11

I believe the program referred to above is administered by the state department of medical assistance and is a Medicaid Long Term Care waiver. Those with significant disabilities may qualify regardless of family income. It provides for a personal care assistant or respite provider and parent or other family member may serve in that role. In my state it’s called the EDCD
( elderly/disabled with Consumer Direction) waiver. My nephew cares for his 26 year old brother with Down Syndrome and is paid through that program. I have known families whose young children have autism or severe MI be approved for the program. Your local social services dept may have information or the local health dept.


#12

Before I had to quit work due to my own health and from the very onset of my adult sz son getting disability and other benefits I made it clear that he was responsible for his own expenses to everyone that asked: Job and Family services, mental health services, everything. He lives with me but I have it set up on applications etc… that he is like a tenant and has to pay rent, a portion of utilities and buy his own food etc (of course as his guardian I just appropriate the money for whatever is needed for him)…I was advised to do this years ago by a case manager that said that it would insure he would always be eligible (income wise) for whatever services were out there. It helped a lot when I did work as I had home health care nurses coming in daily and monthly different ones for different things. Eventually when I went on disability myself it was just easier for me to handle things myself, but he still is listed as an individual residing with me, and my income is not included in his annual re-determinations. I don’t know if that helps but I just thought I’d throw that out there.


#13

We’ve been told about this. It always comes up with the pdoc, who then says he needs to undergo “neuropsychological testing” to prepare for this. We canceled the first time (insurance would not cover), the second time we did not persue (did not think the testing would be a good idea for him at the time, the stress and we were moving again)…but now, the third time? Well, we are here under contract for two years…and insurance covers most…so we’ll do it.

It apparently is needed in order to apply for this program and others like it.
Also, to get “ready” for when he turns 18.

THIS subject alone brought me to this forum.
I’m honestly scared of him going through the testing.
I don’t know why.


#14

For us…it was the risk to the entire family as well.

IF something happens, husband would not survive. HE would be back in the hospital.
Our older boy would start off his adult life in the worst possible way.

I couldn’t handle the stress of working AND caring for them all either.

I’ll admit it…the constant worry (and reality) of the calls coming into work. I had to leave work repeatedly…and was risking my career. I even had one employer (who wanted to hire me, and only knew I had school age children) insist that I provide information to confirm that I had not one, but TWO babysitters on standby for all hours.

When childcare calls your work, bosses don’t like it. They try…but eventually, they need a truly devoted employee.

At least in my field…(social work/mental health advocate/autism/non-verbal/behavioral/crisis intervention specialist).

Think about it: you have a child with autism who is expecting you to show up at a certain time. His/her health and success depends on it. Parents depend on your presence. The agency depends on your focus and clarity.

I no longer had it to offer, and was beginning to drop the ball. Our son was abandoned (we feel) in the process. Now? Dad focuses on keeping his employment, I carry the daily stuff at home.

Aside, I thought of this last night, and meant to tell you:

Husband has had to, very carefully, improve his position in his field and expand his capabilities. This has taken years, and has provided us a bit more security (and salary increase). I am beyond words of gratitude for my husband. It was hard for him, but he did it in order for me to stay home. A challenge…but (I believe you were talking about career changes, long term planning, etc.) it has protected us. Many of his former contemporaries are still in the lower levels…he now can hire anywhere for management in addition to his skill set already established. He continues to plan for his advanced age and potentially limited physical abilities.

It helped…I keep the home balanced, he works hard to maintain the financial security.

My very best to you…just our fifty cents.

(Please no judgement…I wish I could still work…I would never tell our son that though…but still, I miss “my career”.)


#15

YES!!! This helps a great deal! Thanks for sharing.

S.


#16

That’s good to know. I think, for better or worse, we’re going to try it. The worse outcome is hubby has to hurry up and find a job. He’s a truck driver so he can find something pretty quickly. it might not be ideal but at least we have a backup if it all goes south. Best case scenario is I will hopefully qualify for some kind of assistance which will allow us to be okay on just my income. Even just foodstamps would help.

Hubby gave his notice for Feb 16. For both of us there’s a relief there. Someone who can manage all the things I’ve been trying to juggle with my career. For 3.5 years I’ve been on call 24/7. It’ll be nice to not have to be constantly waiting for the other shoe to drop. Knowing my kids are safe. We’re creating a schedule so that dad takes them to school and picks them up so there’s no more bus issues (a major trigger for both kids). Dad can take both kids to their doctor’s appointments, I just have to tell him where and when.

I’m currently in school and only six classes away from an AA in Paralegal studies. I’ll also have a year of experience as a Paralegal, which will hopefully open up more doors to a higher paying career. I will continue going to school online for bachelors in English, which will likely only take another 6 months or so. If nothing else, I’ll have time to work on my real estate business as well as my publishing, both of which are additional income streams. So I don’t think we’ll always be broke, but for now, we just need to build a stronger foundation around Libby’s needs. Hubby can hopefully find some alternative source of income and we can build as we go. Libby will get older and hopefully more stable which will allow for other opportunities.

I have some hope that we’re doing the right things as we navigate completely uncharted territory with no roadmap.


#17

I stay home, and it is really helpful as far as going to appointments, IEP meetings, getting errands done, etc. The schoolbus creates a lot of issues for us, too. In the afternoon I usually pick my son up.
Hang in there!


#18

I am at home too.

Happy Note:

Have you noticed how nice and kind the appointment people are when you tell them you can take any appointment slot and are willing to be on standby?

Drs and staff love it.
I usually get nice spots too…the 8am ones are the best for us.

Lately, I need the positives…


#19

Is your daughter an adult? Social Security will not consider your incomes in determining her eligibility for SSI, food stamps and medicaid even tho she is living with you. Have her pay a nominal rent and talk to a lawyer that specializes in disability issues. They are paid by SS. She would be able to get about $600 a month SSI payments, food stamps and medicaid eligbility. So see a lawyer.