View unanswered posts | View active topics It is currently Tue Nov 25, 2014 7:28 pm



Reply to topic  [ 57 posts ]  Go to page Previous  1, 2, 3, 4  Next
 desperate for sleep 
Author Message

Joined: Fri Sep 14, 2007 2:49 pm
Posts: 41
Post desperate for sleep
dorthea, We tried the gabapentin when he first got sick and it made him "wild". Once you've tried a medication and it had bad effects, will it always do that or can you try if again and hope it does differently?

lori, When we put him on some of the medications that did make him like a zombie, after a few days the doctor told me to take him off of it. I have been told by someone else that I should leave him on it and after his body got used to it he would come out of it and go back to not being "like an infant". Do you think I should have left him on one of those? It just scared me so bad to see him like that. I could hardly wake him up for anything. I had him in diapers and he just layed in the bed all the time. I couldn't get him up. I was afraid he wasn't going to come out of it then but after a week or so of not taking the meds he did come back.

As for the antidepressant for me! I KNOW definitely I need the Effexor back. I just can't afford to go to the doctors to get it. Last year when I went for my refills, and you know you can't get a refill without paying the doctor for an office visit, she told me that I HAD to have a physical, pap smear and all, the next time before she could give me another refill. I can't afford all of that and even if I had it, What if it came back showing something wrong. I definetly couldn't pay for that and then I'd be sitting here knowing something was wrong with me and I couldn't pay to fix it! So that would just add to my problems.
I went to social services and applied for medicaid so he could get "CAP". They would pay for someone to come 5 days a week to sit with him so I could sleep. We didn't qualify because she said he would have to have $1100 in dr bills a month, and he doesn't. The only way we could get that is if I cancelled his BCBS policy and took him to the emergency room once a month just to get a dr bill. Isn't that ridiculus. And as for being a "squeaky wheel", oh believe me...I haved squeaked loud and long but I think no one hears me, except God!

We don't attend a church because we aren't able to get out and go anywhere. He's just not able. Once in awhile when he has a "good day" we can go out and ride around the block or to a drive up window and get something to eat. That's few and far between and when we do he's totally worn out when we get back and so am I. I used to attend a church where my sister is the pastor some before he got sick. They all know my situation but there are no "volunteers" to come help me. My mother would be more than happy to help me but she has her hands full with my 92 year old grandmother that has a brain tumor. She has the same symptoms as alzheimers. So mama's kinda in the same boat I am.
My daughter comes as much as she can but she has 3 kids and works a full time job. She's come and stayed all night with us and got up with him thru the night so I could sleep 2 or 3 times but she had to get up early the next morning and get the kids to school and go to work. She said she didn't know how in the world I handled this night after night. She still offers to come do it but I can't let her do it often or she'd be sick. It's too much for her to have to stay up all night and go to work the next day.
He has 2 sisters and 2 brothers. The 2 sisters live far away but one of them offered to try to come once a week and let me get some sleep. That was about 2 months ago and she's come maybe 2 days and stayed all day and another 2 times and stayed a couple hrs. One of the brothers said they would start coming and sitting with him so I could sleep...haven't seen him yet! The other sister and brother either just don't care or think it's "my responsibility"!
He also has a son. I have told his whole family that I am "burnt out" and can't do this by myself anymore and that I was going to have to put him in a home if I couldn't get some help. (that's when his sister and brother said they'd help) but his son just sat there and still didn't offer to help any.
I don't know how they can just sit by and not help any! I don't understand. You would think that his son at least would be willing to help maybe 1 day a week to keep his father out of a nursing home!

Oh well, don't get me started on that! Sorry to post such long replies. Guess I have to vent to someone!

Thank you all so much for your support and suggestions. Please keep me in your prayers and I will keep you in mine. We all need all the prayer we can get.
Gotta go. The whole time I've been trying to type this I've had to try to get him to leave me alone just "one minute" so I could do it. Guess I'll go give him his bath and that'll wear him out and he'll sleep maybe 30 minutes. Ahh...thank God for the peace that is sooooo rare around here!
Thank you all!

_________________
GinnyL


Sat Jan 02, 2010 11:17 am
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 758
Location: LA
Post Meds ?
Vicki, I would not try a medicine a second time if I knew it had a bad reaction the first time.

I think I would try to get his son as a partner in helping with his dad. Do it privately when no one else is around. Ask him straight out and let him know his father needs him. Don't wait for him to offer, don't hint, come right out and ask for his help. If he gives you a "smart aleck answer", please let him get it out of his system and then tell him you want to give them an opportunity to spend time together. He may say things that will surprise or maybe hurt but once he says them, he will be more ready to give assistance. Its worth a try.

I wish I could offer more.

Dorthea


Sat Jan 02, 2010 1:06 pm
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post 
Vickie, Frank tried 4-5 meds that made me nervous with the side effects. I called the Dr and he said to stop it. I wish I had given it some time, as I learned down the road, his body did adjust to all future meds. I "think" if his Dr suggested to repeat one I probably would, now that I understand a little better. I should not have mentioned that Frank sleeps 10-12 hrs nightly, the last 3 night we may have totaled 6-7 hrs, still more than you get. He is so much worse when he doesn't sleep and I find it draining and very long day.

Take Care,
Gerry


Sat Jan 02, 2010 2:36 pm
Profile

Joined: Sat Sep 22, 2007 5:53 pm
Posts: 90
Location: Texas
Post 
Vicki, I am getting free meds from the pharmaceutical company through a program on www.pparx.org I looked up effexor and it is in the program. I also have no health insurance so I used a low cost health clinic. Sometimes there are county health clinics. On www.pparx.org you will find the words "Patients assistance program" and you need to click on that. You will find on the left a list of what areas they can help you. I also use www.togetherrxaccess.com for one of my BP meds and it is a lot cheaper. It is a discount drug program that is free to join.
Lorraine


Sun Jan 03, 2010 12:26 am
Profile

Joined: Fri Sep 14, 2007 2:49 pm
Posts: 41
Post desperate for sleep
when i was taking the effexor, i did get it thru the pharmaceutical company for free. that's not the problem. the thing i can't afford is the payment for the doctor visit to get the prescription. i mentioned before that when my husband got sick, i had to quit my job to care for him. that took away over 1/2 of our income but our bills have stayed the same. we were almost living paycheck to paycheck before i had to quit my job. i know it may be hard for some to understand how you can't come up with $150 for a dr. office visit and i was coming up with that much but when the dr. informed me that she could no longer give the prescription for the effexor unless i had a complete physical with lab test, pap smear and the whole nine yards, well i can't come up with that. so without the prescription, i can't get the meds. some people might say "well you could have your internet service cut off and use that money" but the internet is the only source i have to the outside world, except my mother. i think i would absolutely go stir crazy if i didn't have that. i have had all other "luxuries" discontinued. so i have cut out "everything" that we don't have to have except the internet. i guess though if something doesn't change, i will eventually have to discontinue it and go get all the test done so i can get the effexor because if not i'll probably go crazy anyway!
thanks for the reminder of the reminder of the county health department! i will check on that Monday!

i never would have imagined our life would be like this!

what the disease has done to my husband is bad enough, but it has also totally turned our lives upside down, financially, emotionally and physically, for BOTH of us.

God help us all!

_________________
GinnyL


Sun Jan 03, 2010 11:28 am
Profile

Joined: Thu Sep 10, 2009 2:29 pm
Posts: 68
Location: Marco Island, FL
Post 
Hugs, Hugs, Hugs. The posts of the others offer losts of ideas and choices, although I know it's difficult to even think them thru when you're so tired. We went through a period of little sleep and I found myself tearful and walking into things. Since my husband can't stand up by himself without falling, a condom catheter was the answer for us, for the most part--he still gets' restless sometime around three, and I'll go to the couch if it's bad. You must find a way to keep youself healthy first, otherwise you won't be much help to him. Good luck with getting some answers and some help.

_________________
JoAnn

"It's not what you look at that matters, it's what you see.".....Thoreau


Sun Jan 03, 2010 11:42 am
Profile

Joined: Tue Jul 28, 2009 5:50 pm
Posts: 18
Post Sleep Meds
My husband has been on a variety of sleep meds for the past year. He takes a bedtime "group" that includes Risperdal, Melatonin, Trazodone, Restoril, and Remeron. You didn't mention Restoril or Remeron, so those might be 2 to try. He sleeps pretty well through the night, often sleeping in 4-5 hour segments. He also takes naps during the daytime. He is easily roused when necessary in the day, but at night he can be confused if he wakes up with all that medicine in him. It sounds like your doctor(s) just haven't found the right dosage or combination. That was true for us for about 9 months. The past 3 months have been almost heavenly as he only needs my help at night on rare occasions. I went from the kind of nights you describe to sleeping 8-9 hours at a time. It makes a tremendous difference!! I would suggest you ask about Resotril and/or Remeron.


Sun Jan 03, 2010 5:49 pm
Profile

Joined: Fri Jun 26, 2009 9:39 pm
Posts: 92
Post 
Vicki,
The seroquel was the answer for us most of the time. There are nights Johnny is awake regardless of what I give him, but most nights are good now. Plus I'm lucky he can't get up by himself.
And as for help from family members, please be specific about your needs. Say, I need you Tues. nite or Wed. morning or whatever. Asking people for general help just doesn't work, I've found. Sometimes they are frightened of caring for someone with LBD, or just need to be prompted.
Again, you're doing great. Please know we're all here for you!
Judy


Sun Jan 03, 2010 10:14 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: desperate for sleep
Dale has been awake since 3:30 am and it is now 5 in the afternoon. He has been delusional all this time .... thinking that somehow he earned $200,000. and I am not taking it to the bank. He said I hid it in the bedroom somewhere. He looked through all the drawers.

I gave him 25 Seroquel but that didn't help. I finally called the neurologist who sent an order for Xanax to the drugstone. We have now given him one tablet Alprazolam 0.5 mg. I'm hoping he will sleep and the delusion will be forgotten.

He slept very well on Saturday night... but Friday night was also filled with delusions. He always takes 100 Seroquel ... every night before bed.

Comments are welcome....

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Jan 24, 2011 5:01 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: desperate for sleep
Leone, the only [not too comforting] comment I can make is: BTDT. :cry: Hope you get some decent sleep soon. Dale, too!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jan 24, 2011 5:13 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: desperate for sleep
I have no doubt you have, Pat. What calmed him?

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Jan 24, 2011 5:22 pm
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 758
Location: LA
Post Re: desperate for sleep
Leone, These episodes happen no matter what you do. Many of our group routinely added Melatonin to the Seroquel. Oh, the sleepless nights, I remember. If you can break the cycle you may be surprised with a smiling face the next day.
Hang in there. We love you. Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Last edited by dorthea on Mon Jan 24, 2011 6:47 pm, edited 1 time in total.



Mon Jan 24, 2011 6:05 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: desperate for sleep
Thanks for that, Dorthea. My tears are in gratitude to you. I feel so helpless. Of course, you know that.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Jan 24, 2011 6:11 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: desperate for sleep
Quote:
I have no doubt you have, Pat. What calmed him?
Only Seroquel, 75mg. Neither melatonin [that was tried early on] nor temazepam nor trazodone helped even a bit. So I'm assuming it was hallucinations or other abnormal brain activity keeping him awake.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jan 24, 2011 6:35 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: desperate for sleep
Ginny, I don't know if this will help in your situation, but go to the Effexor web site (www.effexorxr.com) and look at the information about paying a $4 copay for the drug. Maybe you could manage to get a new prescription from your doctor without too much cost and then get some help from the company. I haven't done a thorough reading, I just Googled it because I have seen so much lately about drug companies saying, "Can't afford XWZ drug? Maybe we can help." And there it was.

I have no suggestions about the sleep issues but if the Effexor was helping you, I hope you can find a way to use it again.

Hope this helps,

Julianne


Mon Jan 24, 2011 8:32 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 57 posts ]  Go to page Previous  1, 2, 3, 4  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr