Family and Caregiver Schizophrenia Discussion Forum

Need Encouragement

#1

How do other people handle being the one who takes care of all medical decisions, driving patient anywhere he needs to go, encouraging patient to talk, etc. on top of a job and all other adult responsibilities. Almost no help with housework etc. from patient. Plus being single and wanting some kind of connections of my own. I know these are not exactly complete thoughts, but I feel like running away! My job has been a constant stressor for 8 months. I just want to escape, but know that is not an option without letting my son down.
Please do not suggest NAMI. The closest one is an hour drive from where I live.
My mental fatigue is just making things worse. A lot of days I just feel like I’m not enough.

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#2

The closest one for us is 90 minutes away and with our hectic schedule, it is hard to make it to the meetings. Both my wife and I drive an hour to work… so NAMI is out of the question for us as well.
It is hard for us to get both of our daughters to help us, let alone the MI one. We drive her all around since she doesn’t have her driver’s license yet. Driving is stressful for her anyways.
All this is stressful for us. My wife wishes she could escape too… She does a lot to manage the household… pays the bills, handles the finances… I offer to help with this, but she says it is just easier if she does it herself. I do help with cleaning and laundry and cooking. With you single…it sounds all more difficult.
Maybe allow for some time just for yourself if possible? (Easier said than done, I know) Do you have any hobbies?

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#3

I rarely do NAMI either, exactly because of what you are talking about - I am working a job, plus taking care of an adult son, and maintaining my own life and home, and I just do not have extra time to give to any aspect of this illness.

Basically - I just do it. I let my standards loosen. My house is less clean than it could be, my weight has gone up due to lack of time to exercise, I get more carry-out than I used to, and I do less for other people than I typically might do. But I try to fit in time for a couple of hobbies, and have taken back one weekend day for myself and my husband.

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#4

Hello, I’m new here but not new to the sadness and burden of loving someone with SZ. Let me tell you this with all love and respect. You have to take care of YOURSELF first. You know how they tell you in the event of a plane accident, you need to put on your oxygen before your child’s? It’s because you have to be there to take care of the child. Whether your son is a minor child or adult does not matter. You feel the heavy burden of taking care of him and that can come with a very heavy price tag.

I’ve been my mom’s legal guardian for the last 17 years. I wasn’t even graduated from college yet. I never had to live with her (after I became her guardian), but I had to pay her bills, take her to appointments, and I had to do many many stressful things and make many stressful decisions. I am still doing it, along with having a family of my own. I have four children, three of which I homeschool. I stay home so I can help my mom out too. I visit her at the nursing home often. I try my best but many days I just cry. I feel that no one understands the burden and many do not.

Also, your NAMI comment is totally appropriate. I’m sorry to say when I called NAMI for additional resources I knew more about mental illness and solutions than the person on the other end. I’m sure not every chapter is like that. But I think if I had more time I would fight to improve NAMI.

Is your son old enough to live independently or is he a minor child?

You are enough. You are tired and need to find simple solutions and support.

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#5

Thank you. I called my ex who came to stay for a while which gave me time to drive about an hour and spend the night in a hotel. I have cleared some of the cobwebs out, and I am thinking a little clearer.

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#6

That sounds just like I usually am about standards. Just do what I can and let the rest slide. I figured out last night on my one night “sabbatical” that I have got to make some changes with my work situation. I can’t be who I need to be outside of work because my job is so exhausting and stressful.

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#7

I just want to commend you for your loyalty and persistance. It sounds like your mom really has no one but you. I thank God you have done your best to be there for her.
I can’t quit work, but I am going to have to find something different that doesn’t drain me so much. My son is an adult. He has gotten very lax on self care. He is good about taking his meds, but if he lived alone I’m sure he would completely isolate.
Anyway, I increased my dose of antidepressant starting today. I downloaded some health apps on my phone last night, and I just filled out an application for a new job. I’m feeling much more positive and in control.
Thank you for your comments!

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#9

So glad to hear that your night out really helped out! I was really glad to read this. My son is only showering a few times a week (he works). I put up two signs in the bathroom. One of the toilet that said “I always feel better when I shower” the other I put up on my side of the bathroom that says “My co-workers like me best when I shower”. After that he showered. I made it look like it was for me. Mine too would isolate I believe if he lived on his own. He works nights so it’s hard to tell.

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#10

I’m glad to hear that you did take some time off just for yourself and that it was beneficial.

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#11

It is very tough when you are the only one doing everything. Local churches, hospitals may have some connections for you. Crisis centers have counselors that will come to your house. Some of these centers may have contracts with a bus company that can pick your son up and take him places so you can have some time to yourself. Keep reaching out. Don’t give up. You’ll find what works for you…

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#12

I’m so very sorry mamakaye. I can’t imagine holding down a job while doing all of these things for my son. Just today my psychologist suggested that I seek out respite help for my son (I have a debilitating disease) so I can catch a break. I do not know where to start as I was just today informed that there are such services for the mentally ill but I wanted to let you know as well.

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#13

I have been taking care of my son for 22 years ay home. Yes, it is exhausting. I am also married. I recently put my son in a Residential Board and Care home. The facility is about 22 miles from my home. His social security pays everything. They get three meals a day, 24 hour supervision, medication management and housekeeping services. It has taken a lot pressure off of me. I felt really guilty at first. I’m okay with it now. I go see him once a week and we go out to eat breakfast together. My stress level is way down and so is his. We used to fight a lot because I wanted him to keep his room clean, etc. Think about it as an option! Good luck to you.

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#14

I’m really glad to hear this is working for your loved one. I would like to figure out a different setting for my son when I am older. None of the options I have looked at in the past have been satisfactory, especially if thought of in the long term.

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#15

My son’s hygiene is even worse. When I was in the motel I got 3 new apps on my phone. I’m usually not into apps and never would have looked at them if I had been at home. The apps are for health and well-being. I have been showing them to my son and talking about what the “tasks” I am doing to be healthier such as drinking a glass of water first thing. I have noticed that he has really cut back on soda the last few days! I’m going to see if there are any apps for hygiene.
The apps I am loving are WYSA and FabuloUs.

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#16

Do you mind if I ask what state you live in? I live in Georgia, and the places here that are covered by Medicaid have a social worker come in once a week. Does not provide meals, supervision etc. It basically is just to avoid homelessness. The only place I know of in Georgia that sounds like what you are describing was $3000 a month back in 2014.
Maybe Medicare would give me different options. I don’t know. In a little over 10 years he should be able to switch from SSI and Medicaid to social security and Medicare as my dependant.

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#17

Thank you for sharing this and your experience! I think it’s good for others to see on this board that there are no perfect solutions but as caregivers we still have many options. Do you feel the facility is caring and what he needs to be most independent?

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#18

Yes definitely you will have more options with medicare! I live in WI and my mother receives medicare, medicaid and SSI. She is over 65. I believe it’s possible to have both state and federal funding at the same time. In WI we call medicare Family Care. Once my mother received family care benefits she was entitled to move into a nursing home that contracted with that family care company. I’m not sure what they call it in your state. Hope this helps.

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#19

We live in Southern California. The residential board and care facilities for the mentally ill are regulated by the state. We pay $1200.00 per month. This comes out of my son’s social security survivor benefits. Yes, we are lucky to have three meals per day, 24 hr. supervision and medication management. The psychiatrist comes once monthly and so does a regular medical doctor. The client’s prescriptions are picked up by the facility and administered to the clients. My son has Medicare and MediCal (California Medicaid) and a private Medicare supplement RX plan. Medicare nor MediCal cover the room and board. It comes from social security only. I am my son’s conservator and I oversee all of his care and oversee all of his finances. My son is free to come and go as he pleases. He has a bedroom that he shares with a roommate. Each bedroom has it’s own bathroom. And as I mentioned earlier, they also have housekeeping services. Otherwise, you can imagine the facility would have been trashed already. The clients are not good about cleaning! They have a laundry room on the premises. They are also lucky to have (within walking distance) a Super Walmart, McDonalds, other fast food restaurants, movie theater, library, etc. My son was not happy with it at first, but now he feels more independent. I signed him up for L.A. Fitness so he can enjoy the indoor pool and exercise rooms. That facility is only a three minute walk. I have often thought about moving away from California, however, the mental health care system is so much better here than other states. Not necessarily saying much in some respects, though. Could be greatly improved throughout the nation. The very expensive facility you mentioned must be privately owned and operated. That is extremely expensive for most people. Most definitely good that your son cut back on the soda. The caffeine for the mentally ill is not good. My son ended up in the hospital after drinking multiple energy drinks. His blood pressure skyrocketed. He is 39 years old. I hope you can find something that works for you and your son. It is a very difficult situation and the stress can become unbearable. My son’s hygiene had become so bad at home that I couldn’t invite anyone to come visit me! SSI is for the disabled. SSA is regular social security which is what my son has. My son’s dad died in 2003. My son was eligible to receive his dad’s social security because he became permanently disabled before age 22. Since his dad’s Social Security income was higher than mine, we went with his dad’s. I cannot believe how much I have learned about all of this in the past years.

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#20

Please consider some counselling for yourself or call the Mental health hotlines - they are there for us too. You need to vent and get it off your chest. Most others in your life just don’t understand like we do here on the forum. Vent here… but also find something for yourself to look forward too… even if it is a bubble bath and reading a book for a few minutes. You need to replenish yourself to keep on going.
Hang in there… eventually things get a bit better. I did put my son in assisted living- it took his whole SS check - then I could have a rest and just check in with the facility to make sure they were on top of things. They are hard to find one that cater for younger people, but I found some in MO and FL. I live in CO so I would visit quarterly and call him daily. I too am single, work full time and have 3 other children. Hang in there. Take care of you! you know like they say on the plane…put your oxygen on first so you can help others. Hugs!

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#21

I am so sorry and know exactly how you feel. This illness is so destructive to the entire family. Our communities need so much more education along with courts/jails and our dr.s. It does take an entire TEAM to support and help these people. Their behavior/manipulation/illness is overwhelming and can make the healthy people feel insane at times as there seems to be no end and break. It is an exhausting job and even though we love our families, it is at times too much to deal with. I am feeling the exact thing at this very moment. :frowning: Wish I had more answers and HELP for all of us.!!

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