I Really Don't Want Advice...Just Venting

[les63]

Mmhmm, DH came home from the hospital still thinking he was okay. Don't need meds don't need therapy. So slap me up side the face and didn't follow thru to my detriment. He went down hill after a week. Now, back on Haldol he is different then he was in the hospital. He seemed almost normal when he came home from the hospital. Now back on the drug he is totally different. Not standing straight, shuffles, arms are bent up, tremors. He acts and looks like he is twenty years older. He is only 46 years old. His appetite is good though.

My BIL insists that the doctor (general practitioner) is right on giving him a drug holiday. This doctor didn't prescribe Haldol, the hospital doctor did. Wean him off and see what happens. Give him a pill if he starts getting agitated. DH does have an apt next Tuesday with the counties mental health. His cousin can watch Noah and I'll get him there. It's to start therapy and see a social worker. I will insist that he needs to see a doctor there also. This is so up and down. So confusing and no one seems to know what to do.

BIL lives in Cali. He flies out of Newark on the 6th to go home. Seeing his brother, he didn't realize how bad it was. Talking on the phone and seeing something in person, totally different. The family would like DH to have an MRI; up to me to talk him into it. Next up is to get DH to sign a power of attorney to give me access to funds to pay pretty much everything off. It would be a big help just to have to worry about the rent and utilities.

[mmhmm]

Sounds like the hospital really let all of you down, les.  They didn't communicate appropriately with you, for sure.  Did they even give you a diagnosis?  No meds and no therapy on release from a hospital after a breakdown is a recipe for disaster.  He should have had appointments lined up within the week after release ... as soon as possible.

Is he on the same dose of Haldol now as he was when he was hospitalized, or do you know?  The tremors and shuffling aren't uncommon for some people on Haldol, but those should start to decrease within a week (the tremors might take longer, and some always tremble on the older drugs, like Haldol).  He really does need to see a psychiatrist, as well as a good internist.  He's obviously having a very rough time, and I don't know if anybody really knows why, yet.

Your BIL is probably reacting with some shock to all that's occurred.  I'm sure he'll come around to realizing his brother needs help, not rejection.  If you have to leave to protect yourself, or your son, that's a different picture than walking out because you don't want to deal with someone who's ill.  It doesn't sound like your husband is violent, or a danger to others.  Don't know if he's expressed any suicidal ideation, but that's a thing to watch for.

[Deleted]

Les, I wish there was something I could do or say that would help  The only thing I can think of is to just keep putting one foot in front of the other. If you were right here with me, I'd give you some of these

[happyscooter]

I never said that you were screwing the system.  I read the cigs were cheaper somewhere other than where you live.  Cigs are expensive and if it came down to paying for meds for DH, I would choose my DH. 

I'm sorry you are going through this.  You are right, I have never been in your shoes.  And if your BIL is telling you that you may have to walk away, then things must be pretty bad.

[bean29]

Les,

Just wanted to let you know that I also am keeping an eye on this thread. My Dad is bipolar and I know some of what you are going through. I only know a little about autism, but I certainly agree that caring for your Son takes priority over working.

With my Dad I know they often get the meds adjusted in as little as 3 weeks and he is back to normal. Recent years it has taken longer bc his kidney function is borderline so they are very cautious with the drugs. Hang in there for a while longer. I will pray for your family.

Sent from my MB855 using proboards

[bean29]

Les a GP is in a o way qualified to treat someone with issues as serious as your DH. They probably know all of the high points of the drugs from their drug rep and none of the lows or side effects. I would not let a GP play around with this. Get your DH to a psychiatrist.

Sent from my MB855 using proboards

[Nazgul Girl]

    Les, I am hoping for the best for you.   You may be forced to care for your son over your husband.   That being said, I hope it works out for your DH.   You are very brave and hugs to you.   You need little pleasures to keep on going, so get your pedicure, and enjoy your cigs.  

[les63]

Putting my feelings out here. This is to everyone reading this thread. Unless you have a special needs child, you have no idea how this affects your family. It can break a family. Usually, both parents can handle it. Sometimes not. Not to knock fathers out there, but women handle this better.

With the way Noah is, we cannot do family anything anymore. Everything we do is mostly on our own with someone home watching Noah. This is hard on the family. I have adjusted to it as I have been taking care of Noah since his diagnosis seven years ago. It has been hard on my older son and I'm sure my husband. Noah comes first; and I cannot change that. You either adjust or you move on. Noah cannot do daily living; I know him enough that I can figure things out as soon as he does. You could say we are in tune.

The Medicaid is for health insurance and nothing more. We are not using the system. Noah and my husband need this now. DH has not held a job for long since we moved to NY state. Right now I have no idea when he will be well again to even apply for a job. I am going to apply for disability for him. I haven't had a job in 12 years. New York state has a low minimum wage compared to Washington state. Two dollars different. I need to worry about that now. Start something at almost 50 years old. This just hurts my brain too.

I'm going to try to get DH to sign the power of attorney and health proxy this weekend. I need to pay everything off and just have to deal with the rent and utilities.

Sorry if I got snippy. I just want to come here to vent. I know what I need to do if this goes totally in the toilet.  I talk to my mom every night and she is awesome. But this is another avenue to ramble and vent. I like it.

Today Noah and I went for a ride. Drove to Elmira and back. Grabbed McDonalds; french fries for him and quarter pounder and cheese for DH. I guess DH's brother came over when we were gone. Didn't know that to about an hour ago. DH didn't let me know he had company. What's up with that?

Anyway, long day again. I so wish I could visit my folks three hours away. I just might say to hell with it and do it next week after his July 2nd apt with the county mental health agency.

Thank you all again with all the encouragement. I very much appreciate it!!

[taz157]

les - for everything you, DH, and Noah are going through. If you can, I highly suggest visiting your parents.

[les63]

Update for today. First day off of Haldol. He is shuffling faster; not sure if that is a good thing. He would lay down in bed and be up in two seconds flat. Going to the kitchen window to look out at the ball fields below. I would ask him, what are you looking at?Standard answer, I don't know. It is going to get worse the next few days.  His brother is coming over tomorrow morning to say goodbye and that is going to hard, at least for me.  My assignment this week is to get him to his appointment on Tuesday and schedule an MRI on July 4th. Wish me luck with that.

Filled out the paperwork for the health proxy and he signed that. Same with the power of attorney. Just trying not to be overwhelmed. Freaking hard. I so want to curl up in a ball and cry.

My parents will be visiting I think in the first part of July. I can't wait. I am just so thankful they are both still alive and so supportive.  I would be a puddle of mush if I couldn't talk to my mom every day.

I'm praying every night for strength. I know God is with me because I haven't lost it yet.

Glad everyone here is putting up with me also. Thank you again for letting me ramble and vent.

[suek1958]

I'm praying for you and your family, Les   

[les63]

Update for today. Got DH to his appointment at Broome County Mental Health. Believe me, it wasn't easy. His aunt and cousin came over to help. The aunt went with DH and me and the cousin stayed with Noah. We ran late because DH didn't want to go. Got him there for the intake process and I need to get him back there next week to talk to the doctor.

Got him to take a shower this morning and I stripped and washed the bedding. Don't even ask what his shape was this morning. Poop, OMG. The main thing is I got him clean and got him to brush his teeth. I swear to God it is like working with a 2 year old but he is 46 years old. You have no idea how hard this is for me. Dealing with Noah is hard enough some days.... having your spouse fall to pieces is just another brick on my shoulders.

I'm trying. His family is barking at me about things and I'm doing the best I can do. I'm doing things I haven't done in along time. Not since I was single after my first divorce and was a single parent when I had Nathaniel. It would be so easy to walk away and believe me I want to. Especially when DH doesn't what to comply. He begs me to help him but he doesn't want to leave the house to get help. I tell him no one makes house calls anymore. I don't know how to help him and he need professionals to help him.

The MRI is still in the works. It is hard because the woman we talked to today wants to have him back on Haldol but the general practitioner doesn't it. Round and round we go. I think I'm going to be insane myself when and if we get thru this. Thank God, Noah starts summer school next week. That will help. I just can't go out willy nilly on a whim. Arhgggggggggggg.

Some days I really, really hate my life.

[mollyanna58]

I'm so sorry you are going through this.  I hope things get easier for you and your family.
Vent here all you need to.

You said his family is barking at you.  Other than the brother, have they actually done anything to help?

[Cass]

I'm sorry I have no helpful advice les.
But as others have said, feel free to vent here.  We're rooting for you

[les63]

Yes, his cousin and aunt have. And another cousin. Everyone has their lives and they have to work around that to help me. I am extremely great full.

Ok, now I am damned. DH has not had a good sleep in over two days. Withdrawal from the Haldol plus probably whatever is going on in his brain. He has been pacing all over the house for the last 2 1/2 days. Honey, help me. I need to sleep. I am so disappointed with the back in forth since he got out of the hospital. Too many different opinions. Sooo, damn me, I gave him 10 ml of haldal  a little while ago. I am so mad at his doctor. Crap, I'm mad at everyone.

Again, I can see why this country rates so low with dealing with mental health.

[taz157]

Jul 2, 2013 21:52:09 GMT -5 Cass said:

I'm sorry I have no helpful advice les.
But as others have said, feel free to vent here.  We're rooting for you

[les63]

Forgot to mention. Called doctor's office to prescribe a sleep aid for DH. His doctor was gone. Another doctor suggested Benadryl. 50 ml tablet. Again I let DH call the shots. Oh no, an over the counter wouldn't help me. I am such an ass. Let everyone walk all over me. Oh, and I'm never right. Feel like such a failure sometimes and I know I'm not.

Forgive me for being a cry baby right now but I so want to go home and be with my mom. I want my mommy.

Tomorrow is another day. Lord give me strength. Please let him get some sleep tonight.

Thank you for the encouraging words. I really appreciate them. One way or another I will get through this.

[Cass]

You're not a failure at all!  You're raising amazing boys and facing mental health head on.

I'm not a health professional, but in as much as I've seen, Haldol is pretty heavy medication.

You're doing your best in your situation. 

[Works4me]

For what it is worth, I think you did the right thing. From my personal experience Benadryl used for sleep makes depression worse.

You are doing an amazing thing just by surviving each day. All I know is you will be ok. Don't know how or when but you will be ok.

Ask yourself if you did the best job you could being who and what you are combined with all the other pressures - would you expect any more of anyone else? Of course not. So you did good!

Hugs and support and prayers for all of you.

[Wisconsin Beth]

Jun 27, 2013 21:22:22 GMT -5 @missrigby said:

Les, I wish there was something I could do or say that would help  The only thing I can think of is to just keep putting one foot in front of the other. If you were right here with me, I'd give you some of these

[tloonya]

*Tloonya, that's enough.  If you don't like something that's posted, REPORT it, DO NOT copy it.  As to the post you copied and complained about, there was nothing wrong with it that hasn't already been spoken to. - mmhmm,  Administrator

[Jaguar]

Les I hope your doing good and staying strong. My thoughts are with you.

[les63]

Alrighty.... next update. He has not gotten better. Yesterday he was sweating so much his arms were wet. Enough already. Called his cousins. He is going to an ER no matter what. He finally complied after he saw me packing to go to my parents. Long day at the ER but he came away for meds for the side effects and sleep/anxiety. ER doctor said no more Haldal.

I have been thru this for two months now. A lot of this would have been nipped in the bud if DH had been more compliant. I am giving him until the end of August to straighten out. If he keeps this up I'm done. I now have a special needs child with autism and a special needs adult at 46. One I can take, two, no way. I am stretched to my limit here.

I am at a cross road. I am at my limit. My nerves are about shot. I will leave him. I will go to my parents for a bit and figure things out and move from there. Obviously, I need to get some more college. I haven't worked for twelve years. This terrifies me as the economy doesn't like older people looking for jobs. I know, I'm only 49, but blah, blah. What a damn mess.

This is not where I thought I would be. Crying more lately and I know that is a good release. Next appointment for DH will be next Tuesday at 6 PM with a doctor at the mental health place. I swear to God, if he puts up a fuss about leaving the house I will scream so loud that the neighbors will hear. Arggggggh!!!!!!

[Jaguar]

Just say what you need to, most here support you 110%.

[taz157]

Jul 5, 2013 21:11:05 GMT -5 Jaguar said:

Just say what you need to, most here support you 110%.

[les63]

And I really appreciate it!! Thank you again for all the support and me rambling!!

[Jaguar]

[Cass]

Jul 2, 2013 23:19:13 GMT -5 Works4me said:

For what it is worth, I think you did the right thing. From my personal experience Benadryl used for sleep makes depression worse.

You are doing an amazing thing just by surviving each day. All I know is you will be ok. Don't know how or when but you will be ok.

Ask yourself if you did the best job you could being who and what you are combined with all the other pressures - would you expect any more of anyone else? Of course not. So you did good!

Hugs and support and prayers for all of you.

les, I like what sarahjese said above.  It may not be this week, hell, it may even not be this year.  But one day, you WILL wake up and it will all be ok again.

When you're going through hell, the only thing to do is keep going.  Thinking of you

[mmhmm]

Les, hon, you've got a gargantuan load on your shoulders.  It's amazing you're still on your feet!  I know the decisions you're faced with are really difficult, and it's hard to know what's the right thing to do.  I think you've got your priorities in line, however.  Your son has to come first.  Hopefully, the doctors will be able to deal with DH and get him on the right medication, get him an MRI whether he wants it, or not (Heck, he's not in his right freaking mind, docs!), and get him moving toward some sort of solution to this mess.  In the meantime, though, you've got yourself and Noah to think of.  If he can't be helped, or won't be helped, it isn't right for him to drag the whole family down with him.  I'm sure glad you have his cousins nearby enough to be of help to you.  Whatever happens, it sounds like you need a break!  Lotsa hugs.  I think about you daily and wish you only the best.

[les63]

Mmhmm, that reminds me, they took blood and did a cat scan on him at the ER yesterday. Cat scan was negative and no thyroid problems either. I just guess something snapped in his brain. I do help for the best and hope that DH comes back. If not, I do need to move on for my sanity and the boys. Thank you for thinking about us.