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Posted 6/26/2008 3:38 AM (GMT 0)
sad  I am so at wits end today. I picked Doug up yesterday from the hospital and he was so much better then when I brought him yet so not even close to his old self. Since April he has never really returned, the only thing he can do most days is get to the bathroom without help. Almost all his ADLS he needs help with. He is lost when it comes to remotes, phone, meds the list is so long! He will ask me when he is in bed if its ok to sleep or okay to lay a certain way cause he isnt sure of anything anymore. We do laugh at the funny things but these are the things that you cant find humor in. He is almost like a 2 yr old and it just makes me so sad to see this vibrant warm and so funny man not able to find something right in front of him and constantly say he is sorry for needing me so much.

Sue

Posted 6/26/2008 3:49 AM (GMT 0)

Sue  I know how you feel.  Don't you just miss your husband.  I miss Jerry every day and he also thanks me constanlty for helping him.  It just makes me want to cry.  I just tell him if the situation was reversed he would do the same for me.  I know that.  Take care.

JoAnn

Posted 6/26/2008 4:04 AM (GMT 0)
JoAnn, he tries so hard to do the little things. We got hit with hail and rain and I was panicking cause I thought maintenance let my cat out. I couldnt find her, now mind you I live in a one bedroom apartment and she weighs 18lbs pure white, I looked everywhere!!! She is a rescue cat never been outdoors and had been declawed( so cruel) so I am in tears going to work, call everyone I know to come look for her. My youngest shows up for her shift and there Doug is outside calling the cat in the hail. My daughter spends an hour in the woods with rain hail and lightening only to find her in the closet sleeping OOOOPPPSS. There is poor Doug wet confused and tired trying to do something nice for me..... he isnt into the cat thing. Tells my daughter I could think about was my sad face when I couldnt find her. He was so exhausted but he tried. He said he cant stand that I have to do everything

Sue

Posted 6/26/2008 12:58 PM (GMT 0)

Sue, I think your cat is here--pure white, 18 lbs., was a rescue from the Humane Society at 8 wks.  LOL!  Awww, guess not, if you found him in the closet.  Thought I could get rid of this grouchy, demanding, spoiled old man of a cat.  eyes

All kidding aside, that was so sweet of Doug to try to help.  He sounds like he has a big heart.  I'm so sorry he isn't "there" most of the time.  I count my blessings that I've never had encephalopathy...yet.

Hugs to you and JoAnn!

Connie

Posted 6/26/2008 6:05 PM (GMT 0)
Hi Sue,

 

Just had to write and let you know that I know exactly what your going through, my husband is in brain fog too and I sometime's feel so alone sad he is just not "there" and show's no interest in anything anymore, it is so sad to see them like this and wonder if thing's will ever be the same with us.  My heart goes out to you and I pray for us all.

 

 

Judith

Posted 6/27/2008 3:05 AM (GMT 0)
Hi Ladies, thank you so much for your words. I had a bad scare today and I just cant shake it. I slept later than normal because I thought he was sleeping in as he was very tired after I made him watch "So you think you can dance" with much grumbling on his part. Well I couldnt rouse him and he barely responded to a sternum rub. He couldnt even swallow his own saliva..... my daughter works at our local hospital so she came over faster than an ambulance and we washed him put him in dry clothes while waiting for EMT's. He was bad enough he had to be transported to Boston while they got set up for him. Now he is awake but doesnt have any idea whats going on his ammonia levels were 275. I would so love to hear his laughter and him refer to me as his "significant ball and chain" as he tells people the one thing he learned real fast is "YES DEAR"! LOL Yeah I had major melt down today when trying to tell our coordinator what was going on I guess I am just burnt out!!
Sue
Posted 6/27/2008 3:49 AM (GMT 0)

Oh, {{{{{{Sue}}}}  I am so sorry!  You are entitled to a meltdown.  Such a stressful situation...and scary.  I hope they will get his ammonia level down and that he will be more himself very soon.

Hugs,

Connie

Posted 6/27/2008 3:55 AM (GMT 0)
Sue I am so sorry. Ammonia levels can shoot up so fast that it leaves your head spinning.
You know that he is being well taken care of in the hospital. Please take my advise ........you know I have walked a few miles in your shoes. In between visiting him. Do something for yourself or something that you been wanting to do for a long time and just didn't have time for. You need to try and clear your brain. Take your mind off of things for a little bit.

During one of my husband's last hospital stays I painted our bedroom.
Up until then I would camp at the hospital, almost non-stop.
He had no idea what I was up to. I went and visited him 3 times a day and between visits I'd come home and paint. Well imagine the surprise he got when he saw our now green and gold bedroom. He loved it. And since I love to paint it was very therapeutic for me. It kept me sane during a very stressful time.

As always.......my thoughts and prayers will be with you both........
Posted 6/27/2008 5:39 AM (GMT 0)
{{{Hello Sue}}}
I'm so sorry for you and what you're all going through. As much as I read about this disease, it still scares me when I read a posts like yours. I doubt that anyone can ever be prepared for anything like this. I consider myself a strong woman, and I just hope I will be when Terry needs me most.

Terry's favorite saying to me is,"Yes Dear".

Carol
Posted 6/28/2008 12:28 AM (GMT 0)

Sue

I know what you are going though.  I had one of those melt downs in the hospital.  After three days with no sleep and Jerry just seemed to be getting worse and worse I just lost it.  I made the nurse call the Dr. at home and I just lost it with him.  I told him I wanted Jerry out of there and sent to Vanderbilt.  It was horrible.  The Dr. has never talked to me the same.  I still refer to it as my mini melt down!!  You just get to the point you don't think you can take any more.  Your situation was much worse.  That is why I refer to it as my mini meltdown.  I know the day will come when things are going to get worse.  I've always thought I was strong but sometimes we just need to "Melt down" some and start all over.  I think when we are faced with the horrors of this disease it just becomes too much at times.  You are doing good.  Just hang in there.

JoAnn 

Posted 6/28/2008 3:49 AM (GMT 0)
Hi Everyone, Thanx again for the words of incouragement. My brain is so in overload right now I am finding it hard to think. I am now getting worried about his safety at home, my job being on the line, waiting to see if I got approval for the alotted 27hrs home care per week then finding someone and paying the other 13 hrs out of pocket. I just dont know how people do it. I am pretty good at finding resources but feel like I have run out of them. I want to go outside and scream....... !!! I have been playing a childish game in my head to distract me and hopefully it stays in my head, I hace a neighbor upstairs who likes to torment me cause I called her a not nice name for breaking a beer bottle out front of the building and there are alot of kids running around here. So now she likes to throw lint for a vaccum cleaner out her window into my garden!! Right now I stuff it on her mailbox but in my head I am wetting it and using a sling shot to shoot in at her windows!!!! See the stupid things I use to distract my brain from worry!
Sue
Posted 6/28/2008 4:20 AM (GMT 0)
Bombs away, Sue!  LOL!

Posted 6/28/2008 5:45 AM (GMT 0)
Sue do you live in the US? If so if your employer has a certain amount of employees than you can sign up for FMLA. I believe that they will pay you up to 6 weeks for staying home with your loved one. It is a federal program so which ever state you live in you can sign up for it. It protects your job also for up to I believe 3 months.. They can not fire you for taking time off. I used it to save my job . Google FMLA and get all the correct information. (Family leave medical act).

When my husband got really sick and I had to call in hospice I was so upset that I was granted state disability. I drew it for 3 weeks before he died and 3 weeks after he died. Between FMLA saving my job and state disability saving me fiancially I was able to make to through a very horrible time until I was able to go back to work.

Good luck and hang tough............thoughts and prayers...........
Posted 6/28/2008 2:19 PM (GMT 0)

PG yes I live in the us and in my state they allow 12 weeks in a rolling year and I think I have used 4 but it is unpaid FMLA which is why I went back to work. We need 382 per week to cover bills and that doesnt count food gas etc.  so savings went fast without my income. I am going to talk to my manager today to see how much lee way they can give me on call outs or if they prefer i go back on FMLA till I can hire some one as I am still waiting to hear from the options program. Right now we are stuck in the middle of the "I dont know" . I am hoping I am just overly concerned as I do work with one girl who has a cow if she has to work solo..... yet she doesnt think about all the times she leaves early cause she doesnt feel well, we all know its the DT"s but she is unable to admit a problem. I always wish her the best but boy can she make some waves. We shall see how today goes when I go in. Oh wait then I have Doug coming home sometime today and the hospital is transporting him as he said I cant take another day off. Of course I didnt believe him hhmmm maybe because he was running for president last week!! I had them track down the DR and sure enough he is coming home. So here I am scrambling last minute to get someone here.... whewww. Oh my what day is it? What was I supposed to do today? Oh yeah I know SCREAM .....

Sue

Posted 6/28/2008 2:50 PM (GMT 0)
  

   eyes    Hi Sue,

I think it's October!?!??

 

Carol

   

 

Posted 6/28/2008 9:31 PM (GMT 0)
Sue, Just wanted you to know my thoughts and prayers are with you. The main thing my husband suffers from with this disease so far is encephalopathy. It gets very lonely at times.
Posted 6/28/2008 11:16 PM (GMT 0)

I'm not understanding the unpaid leave vs paid leave in regards to the FMLA.  Is it up to the employer?  Or does it depend on how many employees the company have?  It's not something I have to worry about, as I'm on SSD now...but just curious.

I am waiting to hear back from the Area Agency on Aging regarding my request for some housekeeping and shopping assistance.  I know they also provide some respite care.  So depending on how old Doug is, Sue, you might qualify for some help from them.  He has to be at least 60.

Hugs,

Connie

Posted 6/29/2008 3:22 AM (GMT 0)
Connie, FMLA in MA is unpaid, paid is if I am the sick one and have private disability which I have and keep paid for myself. FMLA in some companies can be pd if the company allows it. Home Depot has to many people to offer it I think. Doug doesnt qualify for alot of services cause he is only 54 but I am always on the look out for some loop hole. We do get electric and phone cheaper cause he is disabled. Basic phone is 9 and change per month and electric is a small amount per kilowatt discount but hey every little helps. I can also get fuel assistance but there are people worse off than us so I dont apply . I think the phone thing is all phone companies.
I wish you luck with some assistance every little bit helps.
They sent Doug home today, it just amazes me that thursday morning he is in a hepatic coma and home yacking on saturday. They actually transported him for so I wouldnt have to miss another day of work. My daughter met him and the ambulance at the door and all went well.... wheww
Sue
Posted 6/29/2008 5:02 AM (GMT 0)
Hi Sue,

I didn't know that we might be eligable for a discount on utilities. I'm sure going to check that out.
Last week, I applied for the Homestead Act for disabled people. We received our letter today, saying we qualified. That will save on our property tax.
Do you know of anything that disabled people can apply for?
I get a caregiver grant of $500.00 for Mom and also one for Terry.

Carol
Posted 6/29/2008 6:17 AM (GMT 0)

Sue, thanks for the clarification on the FMLA.  I also have the phone credit, which pays all of my bill except for taxes and long distance calls.  It's called Lifeline here in FL.  There is emergency help for people who can't pay their electric bills, but they must have 2 unpaid bills and service about to be cut off.  That is one thing I pay in full every month, as well as rent.  Those 2 are absolute necessities.  Next is phone, and my one splurge is the Internet.  Don't even have cable.

Glad to hear that Doug got home okay and everything is going well.

Hugs,

Connie

Posted 6/29/2008 12:42 PM (GMT 0)
Sue:

So sorry to hear everything you have been going through. I only hope that my husband is able to handle things like you . If I ever get to that point. Saw my pc. on Monday he said I looked well and my labs were fine. Although he did remind me of how quickly things can change. He told me about his friend's wife who didn,t do drugs or much alcohol who had been diagnosed a few months ago with the same thiing I have cryptogenic liver disease MELD 9. Well she got a viral infection and was gone in 3 days. Encepalopathy is my major problem. I have to keep that on track. Or my husband has to remind me to take it if I start to act strange , or stand in one spot for a long time.

Wishing and praying for the best for you and your husband. june
Posted 6/29/2008 1:20 PM (GMT 0)

Hi Everyone

You may have covered everything.  My brother is a Quadraplegic.  He gets help on the phone bill which I think is about 9 a month he gets energy assistance evey year.  I think they give him around $200.00 a year.  He is on  SSI.  He also gets $270.00 for house cleaning.  I just couldn't do it any more.  He lives alone and does most everything but is really messy.  I think the house cleaning is through a private organization but there are a lot of them around.  The organization is local and they hire disabled people to sand antique furniture to be refinished.  They are actually really good.  You just can't be in a hurry.  We had a good night.  I rubbed Jerry's entire body down with Cadaryl before bed and once in the middle of the night.  He's all pink but it helped.  Yea!  I got his socks on early also before there was more swelling.  I think the extra diuretic maybe be kicking in.  I sure hope so.  I didn't say anything to him but I swear his legs were seeping (spelling)  I'm with you June I get going so fast I just want to get it out.  I'm not in to proof reading.  I have to get it out and get off the computer because he needs me.  Hope everyone has a good day.

JoAnn

Posted 6/29/2008 3:19 PM (GMT 0)
Sue, I'm glad to hear that Doug is home now.

JoAnn, I will pray that Jerry has many more good nights.

Everyone is still in my prayers.
Posted 6/29/2008 7:53 PM (GMT 0)
JoAnn, It sounds like Jerry has weeping edema. My husband had it a while back. We didn't really do anything different for it. With the use of the diuretics it cleared up on its own. I read about it while googling edema.

My husbands encephalopathy has been better the past couple of days, but today he has a fever and doesn't feel well. He has been sleeping most of the day. I guess it always has to be something. I'm just thankful we haven't had any real scares.
Posted 6/29/2008 9:06 PM (GMT 0)

I've also had weeping edema in the past that cleared up in time with diuretics. 

Hugs to all,

Connie

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