I am in Florida. The meds my son are on has made him more stable. Haven’t had a violent outburst in over a month, I am happy to say. There is always that fear that things will change, and not for the better. He has no energy whatsoever. Does not get out of the house.
Hoping things are going to get better and stay better for you.
I agree the cost of 24/7 care is very high, so hopefully insurance pays for a lot of it.
Just so you know, the $3000 covers more than just the room, meals and medication administration. It also covers, or should cover: Nutritional meal planning, holiday specialties, occasional entertainment in the home, occasional trips out, individual dietary needs accommodation, a monitored security system, snacks, beverages between meals, clean up of dishes and pots after every meal, fabric protectors (meal bibs/aprons), clean towels and wash cloths, laundry for every resident, assistance showering and with toilet habits, clean sheets at least once per week, clean-up of messes on demand, cleaning of all floors, windows, counters, bathrooms, showers, tubs, basins, ovens, microwaves, sinks, counters, refrigerators/freezers, porches, and high-touch surfaces, outdoor furniture, a gated fence which allows vehicle traffic, 24/7 staff, Wi-Fi service, electricity or fuel, running water, storage area for personal items or personal foods, locking systems (for knives, scissors, medication, bleach, disinfectant chemicals, detergents, gates/fences, and blunt objects like brooms/mops), a landline telephone, garbage pick-up service, medical advocacy, written and digital documentation (visitors/activities/prescriptions/doctor visits/behavior/medication administration/daily vital signs and weight), supplies for activities, unlimited sanitary wipes, bed bath supplies, bed bath service, grooming service, room service, extra blankets/comforters, extra pillows, extra mobile tables, a rolling bedside hospital table, blinds or curtains, necessary furniture, Hoyer equipment if needed, air conditioning, individual room heat source, furniture as needed, lawn mowing, pressure washing, leaf raking, emergency food & water supply, a fire extinguishing sprinkler system, care from state-certified nursing assistants, a visitor doctor or nurse at least once per month, semi-annual fire drills, supplies for activities (activity books, jigsaw puzzles, colored pencils, acrylic paint, Play Dough, board games, books, magazines, make-up, nail polish, shaving kits, and more) and of course building maintenance. And good homes will offer common couches and chairs that recline, easy chairs that automatically raise up, an electric fireplace, pet(s) including their veterinary care, hospital beds, extra wheel chair foot rests, extra wheel chair seat pads, and Hoyer equipment for bedridden heavyset individuals. In 2016, most care givers were paid $300 to work 24 hours for a disabled person. Just for one day. So imagine the cost in providing service 30 days, with all of the above staff, essentials and amenties.
1 Like
Where is this nice place with such amenities and supervision?
1 Like
Tippy, as of today we’re on the same uncertainty. After 4 months being unmedicated it was necessary to call 911 and he was taken to the hospital, couple of days before my daughter administered the Abilify so he spent only 4 days at the hospital and the doctor started to switch him to Invega, he’s only a bit better but I don’t trust him with the pills and I hope we can make it to the end of the month and he starts getting the monthly injection again. The worst hours are at night, he sleeps only about 3 hours and he gets up to start his chanting in the bathroom.
The 4 days at the hospital was a good break that ended very soon to start over.
Hope that by now your son starts having some energy and continues to take his meds on his own.
Sometimes my hope is replaced by discouragement and frustration.
Take care.
2 Likes
rosyd, I sure hope that things will work out THIS time! This is so frustrating. My son actually made a joke the other day! It was just one little thing, but when you don’t see or hear anything positive in so long, one little joke can give hope. I hope that you can find some. Right now, my son’s meds are working. I pray that you can find what works for your son. Its pretty sad that we have to think a hospital stay is a nice break! But I do know that twisted kind of joy. You take care.
2 Likes
Tippy, I’m so glad your son’s med’s are working; those ‘little’ things like your son making a joke help us to have hope, I sure have them as well; sometimes like others I feel like throwing the towel because I see clearly that my son hasn’t ‘get’ it yet after so many hospitalizations or the meds are not the right ones yet, on the other hand the lack of insight is so prevalent that he doesn’t make the connection yet of when he’s being medicated and not.
I’m really happy for you and I hope and pray that your son continue improving and feels much better.
As they say ‘the darkest the clouds the brightest the light’!
You also take care dear friend.
2 Likes
Well, my son is at it again! We actually had 2 months without any problems. He is now back to sneaking alcohol which when mixed with his sz meds causes a whole hell of a storm! He was in a fight again with his father. Should have called the police and had him baker acted. Try to have a special holiday and he goes bananas. I want him out of the house so bad! Everything was going ok, not great, but ok. Now back to this mess! I just want to scream!
3 Likes
I’m sorry @Tippy , the holidays can really bring on some stress. Our NAMI support group used to be a packed house in December. I’m glad you had the two months, sorry they have ended.
2 Likes
Rosyd,
I have been so busy at work and other personal items. I just had the chance to check this website., My son does OK for 17 days after taking the shot then goes down. he is now due for an Invega shot in Tuesday and he was Arguing with me Just few minutes ago that he does not want to take it. he has been taking it in last 5 months but he still talk to himself and it gets worse in the last 7 days of the months. He has been taking also his medicine: Zepraxa and Lithium daily until now.
Several days ago he started talking nonsense like accusing me that I put him in many Physc hospitals and the meds will damage his liver and kidney … he thinks I deserve to be in jail so he can have the house by himself .
when I argue with him, he becomes aggressive… so I always try my best to avoid confrontation… He is a heavy smoker. he smokes about 3 packs daily and spend at least $50 a day on eating out from place to place and having coffee at Starbucks. his monthly expenses including cigarettes is about $2000 a months… I make OK money now thanks God, otherwise it would be a problem keeping him on a budget.
On Doctor tried Ability for my son once in California in 2018 and he did not do well on it… so will stick to Invega Shot.
I am sorry that your son is having rough times. Good that you called 911 for his and for your safety.
is he better now? where is he at?
you can send me email to google email if you want . I check it very frequently daily.
here it is : jhhaidar@gmail.com
it is good to vent out to someone who has similar issues.
I wish you and your family Merry Christmas.
Hope things get better for all of you…
Take care for now.
correct, Clozapine works for a lot of people but the draw back are the weekly blood test that I cannot enforce. My son is getting better on Invega shot + Zyprexa pills. he has not been aggressive since August and thanks God for this and he sleeps like 10+ hours between 10pm and 9am. he does eat more because zyprexa and invega both cause weight gain.
but he still talks to himself and I am not sure if this will go away soon… may be it will take time as the Doctor indicated that Antiphyciotic meds can take long time to show improvement for some people.
will keep praying for all of us.
Tippy,
I hope you can patient with your Son. He can get better…
I hope you not throw your son out of the home. He deserves a chance to get better with right treatment.
see my reply to Rosyd .
Please remember this section from Bible:
Corinthians 13 1
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.
will keep your and your family in my prayers…
1 Like
Hi Tippy, I know it really gets ugly, unpleasant, sad, uncomfortable, hellish, there’s no doubt right there.
My son is at half his meds and I know what you mean: it’s ok but not ok. Our son is at half dosis of Invega, just 3 mg which is better than nothing but he could be better, while unmedicated he lost it and kicked the door of the store at a gas station and he was picked up by the cops, taken to jail for a day and now having court hearings. I’m glad it was the door and not a person! Anyhow, it’s not him, it’s the illness, I try to remember that constantly to myself to avoid escalation; it really has helped me to watch Teepa Snow about educating caregivers of loved ones with dementia, they practically do like a person with squizophrenia: refusing meds, argumentative, aggressive, refusing to see the doctor, behavior problems; but it’s not them doing it on purpose; she has specific examples for our specific questions of how it is, there’s many other instructors as well, all of them on YouTube.
I wonder if your son really takes his meds, since he uses alcohol he might not be taking them, I know many guys just telling me where the meds were when they were consuming alcohol or non prescription drugs. Just a thought; I’ve seen my son’s pills half chewed under the bed, worth about 2 months and me believing that he was taking them and the meds were not working; I really trust the monthly shots. Seems like my son will never learn to relate his getting in trouble with going unmedicated. 
Can your son be seen by another psychiatrist and have counseling?
A psychologist from church gave a presentation to us members, especially because during covid there was so many many teenagers falling into anxiety; I asked him if he ever gave counseling to SMI’s and he told me sometimes it’s ourselves who could start the counseling, they’re not going to change but we can. Hard? Of course it is!
Merry Christmas! Wishing you all the joys of His peace and love.
Merry Christmas to all the caregivers on this forum.
Thank you for your reply. My son does not always take his meds as rx’d. He really likes his gabapentin and instead of taking 1 tablet 3 times a day, he like to take at least 10 and then doesn’t have enough to last the week! He is always so remorseful after the violent drinking episode. It doesn’t help the my husband always feels the need to “poke the bear”. Which ALWAYS escalates to the mess we had the other night. It makes it really hard to find joy in the holidays.
1 Like
Thank you for your reply. Its just hard, cuz’ this has been years of dealing with this!
1 Like
Been there done that myself: “poking the bear”! This is what happened: there were no beds in the local hospital so he was sent to Chicago, well, I talked to his nurse there and he wasn’t taking the meds and I suggested it to her to please arrange for a court order for his compliance since he was admitted involuntarily; nope, time started to roll on and after 3 weeks he was discharged after taking the meds only about 3 days! He was obviously psychotic still, we know meds take time to work, at least 4-6 weeks; since I give him his daily allowance from his SSDI I had put his money on the table, I thought it over and I retrieved until he’d take his meds; oh boy! It was a bad decision on my part because the issue escalated big time! Jeez! I have learned the hard way not to do that. And my husband used to do like your husband also, it’s like having 2 MI persons instead of only one! It took this many years to try to be in control of ourselves first.
I took a resilience class offered by the church and I know that simply trying to emulate the Savior takes time for oneself to change, nothing happens overnight; in the class we talked about not to react among many things. But we do what we do out of habit, we’re humans and it takes conscious effort to have dominion over ourselves.
I have a nephew who takes the CBD oil caplets and I know they’re expensive, but if they work and we can have a little bit of peace it’s worth the expense. My son used to go to a hotel and I was ok paying for a night now and then but since the experience of destruction on another one I don’t give him money for it any longer.
It’s hard Tippy!
Take care. Take a mini trip to the store or to visit a friend or relative. We can come here as needed.
Have internal peace, that’s the only thing we can have. There’s plenty of inspiring stories, you can find them in books, in real people. Fresh air helps. We can’t control of what others do or think; the only control we have is of ourselves.
Love you!
2 Likes
Thank you for your response. It is VERY hard!
1 Like
Thankfully, we haven’t had any episodes that we can’t deal with for a few months now. Every so often my son tries to mix alcohol with his meds, but we haven’t had any violence! I am frustrated cuz’ I want to see progress. I want to see that he is taking care of himself. OMG, I wish he would clean up after himself. I want to get him out of the house. I wish there was a safe monitored living environment for him that was affordable. My life has been on hold for so many years now. So worried about leaving him alone, that we can’t take vacations. Just venting here is all. This disease is horrible for everyone!
4 Likes
Hi Tippy
You have probably mentioned before but I wonder if your son is willing/ able to take clozapine?
My son is also an alcoholic but now that he is on clozapine he really doesn’t crave it much and when he does drink he gets sick.
This is a documented side effect that is so helpful for people with this dual diagnosis.
1 Like
yes, I understand how frustrating this can be, I have been dealing with my son illness for 8 years. I still have hopes that one day his mind will be clear and he will be able to care for himself. Patient is a virtue. miracle can happens. Have faith in God. Keeping you and your family in my prayers.
1 Like
Clozapine is known to be the best medicine to clear mind and get rid of hallucination. but the Requirements of taking blood test weekly makes it hard to continue with it. you are blessed that you son takes Clozapine. My brother is doing really well with Clozapine and he has been on it for 30+ years.
1 Like