Caretaker and hating it.

[karrye]

This is rather a longish post so if you are up to reading it, I would be rather grateful.  Thanks in advance.

First off, I know nothing about dialysis and only from what I have read online and from his various doctors and at his dialysis clinic.  Other than that, I am fairly knowledgable in medical termalogy and other aspects of such.

As my introduction in an earlier post told y'all, I am Karrye and we live in the beautiful mountains of Appalachia in Kentucky.  Fourteen years ago is when this all started.  From the day we got married almost 18 years ago, Lee would drink huge amounts of water 24/7 and although he was tested for any diabetic diseases it always came back 'normal'.  Well, 13 years ago, that all changed when his yearly physical showed not only was he diabetic but his BSL's was out of the roof!!  He was started on a mild drug regiment and within a few months his BSL's were under control, which was like giving him a red flag that life could be wonderful again, in other words, he saw this as an opportunity to eat anything he wanted and to drink anything he wanted.  So much for the carefully laid diet plan that we had been following.  It wasn't too many months after that, a 2nd and finally a 3rd diabetic med was added.  Finally, his doctor removed all diabetic pills and put him on his first insulin--Lantus.  Which was quickly followed by Humalog 70/30 and finally Novalog.  So now after 13 years, he is on 3 insulin's and roughly 22  other pills for various conditions--High blood pressure, Cholesterol, nausea, diarrhea, etc.

I should interject and tell you about Lee.  He is a huge man: 350 lbs and 6'2".  Yeap, he is one fat man and packs it all in his stomach area.

In 2009, after having his 3rd colonoscopy in as many weeks, it was determined he had 2 tumors in his colon.  One, ping pong ball size was in his transverse colon, in which it was determined to be the secondary cancer, while the primary one was located in his descending colon and was bigger than an orange.  Luckily, neither had perforated the bowel wall and were contained.  Abet, he lost his entire colon, alot of his lower pelvic wall and lymph nodes, he was essentially cancer free.  After taking 6 months of chemo and followed up by his 6 month PET scan, he was cancer free.  In the mean time, his kidneys, BSL's and BP were doing the electric boogaloo.  His creatine lvl went up to 16!  After being in the hospital for over a week, it finally dropped down to 2.5, where it stayed for 4 months, until around November of 2010.  Once again, for only reasons known to him, he went back on the candy, soda and junk food train again and stayed there.

Ever since  the last day of November 2010, Lee has been in and out of the hospital 6 times.  Each time due to his BSL's and BP being way out of line.  The highest BP was 320/176.  The ER doctor was amazed that my husband was even still alive.  His BSL was over 650 atm as well.  It was just a week later, he got his first temp shunt in his neck and a week later, got his permanent fistula in his left arm.  That one is still 'maturing'.  It likes 6 more weeks in order for him to be able to take dialysis from that one.

He was released from the hospital this past Friday evening.  He had dialysis almost daily when he was in there and each session they removed 4 to 4.5 liters of fluid from him.  Lee said those were the best days he had in some time.  The local center here rarely removes 2.5 or 3.5 liters from him each session (Monday, Wednesday and Friday).  I asked his nephrologist why such the huge difference, he said that is 'just' how they do it in his center.  When Lee came home, he was 280 lbs and was doing great.  I don't know what went wrong, but after dialysis on Monday of this current week, he got all 'sick' again and all of this started again.  His weight is back in the 320's as well. Is it normal to do this? Is this some kind of dialysis cycle that happens?

Anyway,  Lee isn't adapting to dialysis at all.  He will not follow anyones orders but his own.  He drinks soda from 2 liter bottles almost daily.  Why do you ask?  I do not buy junk in my household, but his mother buys it for him.  I have talked to her at great lenghts about this and she said as he is her only surviving child she will do what she pleases to keep him happy.  Well if she wishes to hasten his death, its on her head and not mine.  I have fought with her for over 13 years on this point and still haven't won the battle.

He had dialysis today and all but fell into the bed and went to sleep.  He constantly pops painkillers and antinausea medication.  I have to 'hide' his meds and he constantly forgets he already has taken them.  I keep close tabs on his injections of his insulin and make note of when and how much he has to have.  Just another thing I learned how to do: give him his insulin.  He whines, cries, pouts, throws tantrums, just like some brattie child.  Now this is behavior is nothing like the man I married.  Lee once was a very outspoken kind and gentle soul that made huge contributions to the organization he ended up being made director of.  He has given a number of speeches, fund raised, got legislation pushed through and even got funding for a new multilevel building to be built in order to expand this organization.  He never once showed any of these tendencies until he started dialysis.  He constantly hallucinates and talks for hours on end, asleep or semiconscious.  I have talked to a number of his doctors ( and boy he has a lot of those!), and they have no idea what is going on with him.  I sincerely believe it is all the meds he is taking doing this to him.  He had a mild heart attack this past Tuesday as well and reacted poorly to the IV Nitro they gave him.  They ended up giving him 6 IV drips of it, total.  The result was one constant migraine that left him with numerous nose bleeds.  He staggers and falls quite often and there is no way I can left someone as big as him.  I have my own health issues to worry about, but that is very irreverlent to this posting.  He will not ask for help and just pushes himself up off his recliner and hits the floor. He almost took out the entertainment system last nite and he said he thought he was flying.

He has once again, lost control of his BM's and he refuses to wear any type of adult undergarment to help with this.  It is a job keeping the bed sheets, blankets and clothing clean (I did purchase a plastic mattress cover to save it at least).  I am at wits end and sit and cry every day for hours on end.  It is having such a negative effect on our only child as she has literally cloistered herself in her room and rarely comes out.  I do the best I can and comfort her.  We talk and talk about what is going on, and it is a heavy responsibility on a 16 year old honors student.  It is hard enough being a parent to a child of my body, but totally another, when you have a 43 year old man that has essentially given up and regressing to being a infant himself. 

There are a few instances in the past 2 months, where he is very lucid and can talk and reason as he should, and he is almost 'himself'.  Yesterday, the 25th, was one of those days.  We talked for hours on end about his advanced directive and what we need to do.  I told him about all of the odd behavior he is showing and what did he want me to do.  His only reply: Deal with it.

When, as a caregiver, is enough, enough?  It hasn't been 2 months yet and I am ready to toss in the towel. He could live for years on dialysis and there is no hope of a kidney as he has too many strikes against him in that department.  I have talked to his mother about putting him in the nursing home and I thought the woman was going to strike me!  She made it very clear she would take him in her home and nurse him if she had too.  My MIL isn't a well woman herself and there is no way she can nurse two people, much less herself.  She provides care to her ailing BF who has an advanced case of COPD.

His creatine level was down to 4.1 today and that was from 4.5 Monday.  Abet his BP's are still funky, they range from a huge high for a few hours and then bottom out in the 80's/40's and then raise back up to a more normal/high normal range.  At least I can control what he eats now and he is back on a healthy diet as long as he isn't coherent. 

I have to do what is right for my child and for me.  Call me whatever you wish, but when it come push to shove, I am all for my child and myself.  I didn't create this mess Lee made for himself.  I have preached and begged at him for almost 19 years to change his lifestyle and this is what happens.

Well, this is my story and I'm sticking to it!












EDITED:Moved to caretaker section-kitkatz,Moderator

[MooseMom]

Even though that was a very descriptive and articulate post, I still can't begin to imagine what life must be like for you.  I try very hard to understand things from another person's perspective, but the one thing that I have never been able to understand is why anyone would continue with such self-destructive behaviour and willingly place this unutterable burden on a loved one.  To have to deal with all of his medical challenges is one thing, but to also have to live with someone whose personality has undergone such alteration must be truly, truly difficult.

I suspect you are correct that the meds have a large part in the changes you see in your husband.  That, along with the toxins that build up in the blood, the high sugar levels...all of these things are naturally going to affect the biochemistry of the brain, so a change in personality to some degree certainly could be the result.

You shouldn't have to choose between caring for your husband and caring for your child, but it does appear that you may indeed have to make some choices in that very regard, and since your child is a minor and your husband is an adult, there is no question but to put her needs first.  She needs to have the space and environment that will advance her education.  Thankfully, if she chooses to go away to college, that option will be open to her in a relatively short time; the sooner she gets out of the house to pursue her own life, the better.  In the meantime, it is good that you have talked to her about what is happening.  Be as honest with her as possible, tell her everything that's relevant.  Having a parent who is ill is not uncommon; it's not like she is the only 16 year old girl who has to live with a challenge of this nature.  While it is indeed a heavy responsibility for a young girl, she is old enough to learn that anyone can become ill at any time, and for someone you love, you help as much as you can.  She is old enough and smart enough to give you love and support and to not be an extra burden.  I'm sure it is distressing for her to see her father in such a state.

[lawphi]

There are some great articles regarding appropriate care giving on the internet.  I will try to find my copies and post.

Find a counselor immediately and go often. 

I would speak to the clinic social worker regarding the various issues and see if she can provide you with any resources. 

[monrein]

Your post is very articulate indeed and my heart goes out to you for this awful situation in which you find yourself and your family.  Having said that, I too think that you will have to put you and your child's needs and best interests ahead of Lee's at this point for several reasons.  The first is that it isn't working...he is non-compliant on many levels and the degree of care that you describe is simply unreasonable.  To ruin your back trying to lift him would be in no one's interest and the hygiene issues sound far beyond the call of duty too. 
I would try to connect (as lawphi suggests) with a social worker and lay out each and every issue...medical, social, pychosocial...non-compliance, cognitive issues, medication issues, etc etc.  I don't know what resources are available in your area but the burden that you describe sounds intolerable and I really hope that you can find some relief.  If your husband was not interested enough prior to dialysis to do the best for himself, the medical complications that come along at this point will make the struggle even more of a losing proposition.  The nursing home sounds like the best option from my perspective and then you can offer your care and support in a more realistic and sustainable way for you and your child.
I'm so very sorry that all this is on your plate.   

[KICKSTART]

Difficult one ! Some of what is happening to him could be attributed to D and the build up of toxins , but there seems to be a lot of things that are not. Yes we can get a bit fuzzy and forgetful but not to the point you are describing and i wouldnt have thought the meds where entirely to blame either as we all take a fair few and more or less they are standard issue. I can understand your frustration in trying to care for someone who doesnt actually care for themselves or makes very little effort. The fact he is drinking 2 litres of pop a day would probably explain the weight gain , its not weight its fluid ! I think you could maybe try and speak to his neph and explain what he is like . He hasnt long been on dialysis , so do you think its not sunk in yet ? or he doesnt take it seriously?  To be honest if he wont help himself there is not much you can do.  I wish i could provide you with more practical help , but he needs to start to wise up to his situation really.

[jeannea]

Wow. That is a hard life. I agree with the others. Talk to the social worker and demand that you get the help you need. It's really hard to be a caretaker for someone who won't or can't take care of himself by at least trying to follow his diet and meds. You also may need to check with a lawyer. If you're married to him then I think it's your decision not his mother's to put him into a nursing situation (although a lawyer would tell you for sure). Also, I think if you can find it, it would really benefit you to get some counseling. You need someone who will pay attention to you and help you with your emotional needs.  The social worker can probably help you find affordable counseling. I wish you the best. I'm sure your life is tougher than we understand.

I wish I had better advice. I suspect one of his drugs is causing some of his mental problems or a combination of some drugs. Maybe the doctors can investigate this further. But whatever is causing it you deserve relief.

[Ang]

as your released from hospital your weight is usually down a little or a lot,depending on your time in hospital,you put it back on pretty quickly cause your free to eat as you please and no constraints.
enough is enough when you say  so.
you need to look after yourself cause if your not functioning properly,how can you look after lee.
my greatest hassle was, how do i go from drinking 3itres of fluid a day to 500mls
yes i misbehaved often.
has he got any one can listen to him vent and not just say yes?
best of luck ith your endeavours.
a contributing factor to his recent mild heart attack could be the fluid removal(litres each day)
if you remove large amounts of fluid regularly for long periods your hearts in trouble

[tyefly]

LIfe can be a struggle for both parties...  Please think of yourself and your child.....  Tough love....  he will be the same with you there or with someone else there.... I would say he needs a nursing home..... Done let the MIL  influence your decision...  She does not live it.....  nor would she.....  unless she wants...   she may be not able to either..... so whats best for Him......  whats best for the rest.....  Life is short..... make it work for everyone..

[Tracy]

You know, I am 42 and I was thinking this guy is like one year older than me.  So, if he was a classmate of mine, I would be like, SNAP out of it!  But being on D  myself, I was pretty delirious before I got on D.  My first thought is, they need to pull more off of him.  I take off anywhere from 2-3.8.  Can you talk to the center and beg them to take off more?  They had to take quite a bit off  of me to find my dry weight.  Seems like you said he did so much better when the hospital was taking off so much.  Maybe he has so much still left on him. 

I am so sorry you are having to deal with all of this.  May God be with you.  Tracy 

[karrye]

I wish to thank each and everyone that replied.  Just having anyone to 'talk' to at this point is a blessing in disguise.  I will be talking to an attorney later and a home health advocate as well.  Hopefully, there can be some meeting of the minds and this situation can be 'fixed' to some degree.

Tracy, I did ask his nephrologist, but it 'isn't' done that way at his clinic.  So make what you will of that.  Yes, his nephrologist isn't a very nice person and he 'yelled' at me for not being a more caring and stricter caregiver.  Well, let me tell you, no one yells at this old gal.  I let him have it with both barrels.  I am not proud of that by any means, but sometimes, one has to tell it as it is.

Lee is napping, so that gives me about 1 to 2 hour window to read the replies here and make a general reply of my own.  Plus, I can read about other people in the same situation and find solice in the fact, that I am not ALONE in this.

Once again, thanks oh so very much!
 

Karrye

[Deanne]

This sounds awful! Has Lee been tested for dementia?

[MooseMom]

I did ask his nephrologist, but it 'isn't' done that way at his clinic.  So make what you will of that. 

OK, now, this statement raises all sorts of red flags.  Patients should NOT be shoehorned into a clinic's way of doing things, rather, a neph and his clinic need to evaluate the needs of each individual patient and form a specific treatment plan accordingly.  You shouldn't have to be fighting Lee's health care team; they should be working WITH the two of you.

If you think your husband got more effective treatment in the hospital, then try to get his records or talk to the hospital staff who took care of him and find out how much was being taken off and how he responded.  The neph should be looking at that data in forming a definition of good dialysis for Lee.  While the amount of fluid that should be taken off will be different in different situations, the data from the hospital surely can provide a guide.  Nothing...NOTHING will get better until Lee starts receiving good dialysis.  That's the bottom line.  Unfortunately, the way things are "done" in clinics don't usually result in good dialysis unless Lee has access to more frequent sessions.

Good for you for bringing in outside resources.  Build yourself a support network.  No one person can give you all the answers and shouldn't be expected to do so.  Don't take on this entire burden by yourself because no matter how smart, loving or dedicated you may be, you simply do not have the expertise to find all of the answers yourself.  No one does.  I am really eager to follow your story because believe me, your story is far more common than you'd imagine.  A lot of people will be following your progress with intense interest!

[del]

  to you!!  You must be at the end of your rope. It must be so hard to try to care for somebody when they will not even try to help themselves.  I am glad you are seeing an attorney and have sought out some help.  Would social services even allow his mom to care for him if she is sick herself and already caregiver to one person?   I can't believe the neph yelled at you when you were trying to help your husband. I hope you told him he should be a more caring person!!!     It could be a build up of toxins, blood sugar or meds or a combination of all that is affecting his behavior. Hopefully you can get some answers and some help. My heart goes out to you and your daughter. Must be so difficult to see the one you love on the road to destruction. 

[Poppylicious]

Firstly, goodness!  I can't imagine having to go through all of that.  I know that when Blokey first (and unexpectedly) began dialysis he was very naughty (although I thought he was being good; he was very sneaky) because he was in denial and all he could see were endless years ahead of him involving nothing but dialysis.  Thankfully he's now (fairly) good, but it was a rocky road to start with.

Secondly,

I have talked to his mother about putting him in the nursing home and I thought the woman was going to strike me!  She made it very clear she would take him in her home and nurse him if she had too.

I'd be tempted to drop him off at her door and see how she gets on.  Perhaps then she'll realise just how bad it truly is (I'm assuming she doesn't see all the really terrible things, or only hears about them after the event?)

It's awful that Lee's neph yelled at you.  As MM said, they're supposed to work WITH you, not against you.  Besides, you're his wife, NOT his mother or his babysitter.  You can only advise and support him, not force him into doing something.

I really hope that things get better for you all.  Keep talking to your daughter and garner all the support you can. 

*huggles*

[karrye]

No Lee don't have dementia, abet I think I will talk to his regular GP about that. Thanks for the point.

Poppylicious--his mom 'did' this to him from the day he was born.  She is of the 'old school' that a fat child is a healthy and happy child. She is totally convinced that  'dialysis' is a passing phase and he will be 'totally cured' by summer.  Talk about demented....His mom does well to take care of herself and her disabled BF.  There is no way she could even handle the 24/7 care Lee needs atm.  In our tiny town, its not unusual for this type of conduct from doctors/nurses/specialist.  We are in an extremely poor area of Kentucky and most of the medical personnel 'volunteer' to come to Eastern Kentucky, which, IMHO, gives them a 'complex' about dealing with the poor.  I did talk to the other partner of the dialysis clinic and he agreed, that at least 4 liters should be removed and he apologized to me for his partner. I told him that it wasn't him that should apologize, but he did give us a number to call and file a complaint with the Nephrology Board for this behavior.  Hopefully now, we can work with him, but unfortunately, he only visits once a month in our area.

Del, I will speak to an attorney sometime next week, if the weather holds.  I did speak to public official about having some in home help a few times a week, and she said she would get back to me ASAP.

MooseMom--I agree totally. As you can see from above, I did make some progress and his nephrologist is looking into it.  Hopefully we will not have to deal with his partner very often, but as I stated, he is only here once a month.  So, we will have to take it as we can.  All of Lees' records were electronically transferred the day he started dialysis and are constantly updated from where he is in the hospital so often.  Dr. Fergunson had his newest records and looked over them today and he said he agreed that Lee seems to do better on 4 liter removal than on the 2.5 to 3.5 schedule.  From reading various posts on here, I find so many have it much harder than I and I am thankful for what I have been given and living with.  I am working on having a support base but as I am not a native of this county, I have no kin nor friends to turn to.  So it is rather difficult at times.


To each of you following my post, thanks from the bottom of my heart.  Lee is sleeping--yet again.  He sleeps roughly 14-22 hrs a day--or naps I should say.  His 'sleep' isn't deep and restful, but a series of long catnaps.  He came from dialysis today all nice and pink and on top of the world.  This is the best he has felt since Friday of last week.  So whether the 4 liter removal has anything to do with it, IHDK.  So I shall hang in there and hope for the best.

And to each of the people doing the various styles of dialysis, hang in there and don't you dare give up!  Its a fight and each and everyone is capable of doing their best.

[RichardMEL]

Dear Karrye, first of all welcome to IHD. I am glad amongst your difficulties and sttresses that we are a useful outlet for you and that you know you have support all around the world.

For me, reading your posts about Lee just drive me a little bonkers. We've had several caregivers in similar situations (annabanana, texasstyle, looneytunes come to mind) with husbands (and it always seems to be men?! There must be something in that!) and for mine, I just can't understand how someone can do this to themselves. Yes, I know about toxins - I've been there too - but I just couldn't conceive of a situation where I would do such things to myself to hasten my own demise. Yes, my situation is/was so much different to his (I don't have diabetes or all that colon stuff etc) so I guess you can't compare, but I also know of patients on dialysis who DO have other serious conditions who do manage to follow the protocols and do the best they can for themselves. I guess the point is his behaviour is not rational, and it's not helped by his ignorant mother - imagine that providing him with litres of soda (probably cola, right?!!) when he clearly needs to limit intake, let alone worrying about things like phosphates and potassium. Ignorance is such a horrible thing. She really needs education. Lee needs a TEAM around him supporting him who are all on the same page, giving the same messages and following the same ideas. Right now it's fragmented and he's allowed to abuse himsef due to thoughtless and ignorant actions (his mom, the dialysis center not taking enough, etc) - all this makes YOUR life that much harder.

I really feel for your daughter - she's got her own stresses of school, fitting in, all that stuff and then has to come home to that? No wonder she locks herself away from it. That would be horrible for her to witness and feel powerless to help. It is a pity that Lee is in a state where he doesn't seem to register or care about the effect his actions are having on those he loves the most. It may be one thing to not care about himself, but surely he cares about his two girls?!

re: dialysis center not taking more than 2.5L. I have heard of this. Ours has a limit of 5 because there's a certain upper limit, around 1L/hour, that is unsafe to go over - as in pulling too much is dangerous for the heart and access method. Obviously in emergency situations in hospital they'll roll the dice and take more (maybe extended time sessions also to lower the UFR), It sounds like he's got so much fluid retained all over his body that you could probably take heaps more out and still have more to take.....

I definitely think at this point perhaps rather than thinking about packing up and leaving, that YOU need HELP on the home front, cleaning him up, managing that suff, so hopefully some kind of help can be arranged so you are not on call 24/7 and can get some quality time *FOR YOU* (and maybe then you and your daughter can get out of there for a bit and get some special time together also).. I'm also kind of liking the idea TO give him to his mom for a few days. Make her deal with him, go to dialysis with him, etc - make her LEARN just how difficult this stuff is and maybe why a lot of this stuff is important. Would she come and see the neph with you? Like I wrote above - Lee needs a team all on the same side here.

Just some thoughts. My best wishes go to you, your daughter and of course Lee..

 

[jbeany]

You mentioned talking to an attorney.  Where I'm from, with a doctor to back you up, you can go to court to get a person declared mentally incompetent, and request status as legal guardian.   It was a step I considered with my gram, but thankfully we managed without it because she could afford home health care and we finally managed to talk her into accepting 24/7 care.  If we hadn't, that would have been our next step.  No doubt his mom will fight you, but she would have to prove she was the one more competent to make decisions.  I'm not sure if you actually need the legal guardian step, though, since you might be automatically in control because of your marriage.  Hopefully the lawyer can give you your options.

Hope you get some help soon.

 

[MooseMom]

MooseMom--I agree totally. As you can see from above, I did make some progress and his nephrologist is looking into it.  Hopefully we will not have to deal with his partner very often, but as I stated, he is only here once a month.  So, we will have to take it as we can.  All of Lees' records were electronically transferred the day he started dialysis and are constantly updated from where he is in the hospital so often.  Dr. Fergunson had his newest records and looked over them today and he said he agreed that Lee seems to do better on 4 liter removal than on the 2.5 to 3.5 schedule.  From reading various posts on here, I find so many have it much harder than I and I am thankful for what I have been given and living with.  I am working on having a support base but as I am not a native of this county, I have no kin nor friends to turn to.  So it is rather difficult at times.

I have a son with high functioning autism.  In his early years when things were so difficult, I was living abroad and had no family nor friends close by, so I understand how difficult it is when you are dealing with something so profoundly distressing and are also burdened with a sense of isolation.  At the time, I didn't have internet access; there was no equivalent IHD for support.  It was an experience that I don't think I have ever really recovered from, and I don't want to see the same thing happen to you.  Support can come from many sources.  If you have a computer and internet access, you'd be amazed by how much you can learn and by how many friends you can make.  You can come here and get emotional support from our members all over the world.  You can get more practical support from an attorney, your husband's healthcare team and any other source you may suprisingly come across.  You've already made a very good start.

It doesn't matter if other people have it easier or harder than you.  If someone has it harder, it doesn't really make you feel better, does it?  If I sense that someone is suffering more than I am, I certainly don't get any solace from that.  It makes me feel worse.  My husband and I have had our tax returns done by an accountant since we got married 7 years ago.  Her name is Tina, and she is so friendly and so nice; you'd never know she was an accountant!  LOL!  Anyway, we got our forms from her office in the mail this week, and my husband called to ask her a question.  Turns out she had retired because of medical reasons.  The lady who will now do our taxes told him that Tina has terminal brain cancer and is just pretty much withering away at home.  Tina has it much worse than I do, but that doesn't make me feel thankful in the least...it makes me damn angry.  My point is that measuring suffering is an inexact science and isn't worth the effort.  That's my philosophy lesson to you for the day!     See?  Just because you are not native to this country or are hidden away in a Kentucky hollow doesn't mean you can't benefit from my wisdom!!

Anyway, I am hoping that once Lee's physical health improves with better dialysis, life will be a bit easier for all of you.  You are definitely on the right path!

[karrye]

Hello and good afternoon everyone. 

First off, its already been a highly stressful day.  We were at the center by 6 AM this morning and he immediately got on and didn't get off the machine until 10:22 AM.  Well, when he came out, he was staggering left and right and not a nurse nor aide in site.  Between me and Mr. Turner (his wife is taking dialysis, both elderly) we steadied him and got him out into the truck.  He is such a very nice man and he brings me a coffee.  Bless his heart!  Well, on the way back home Lee gets it in his head he wants to go to the post office and check the mail.  I told him we would stop and I would run in right quick--huge mistake.  He didn't even wait for me to come to a complete stop until he had the door opened and was getting out.  He grabbed his 02 'bag' and his walking cane and walked into the post office. Roughly 15 minutes later he came back--and no, I didn't follow him.  He gets very upset when I follow him saying I am 'spying' or don't 'trust' him.  I try and do anything to keep him calm and stable as to not increase his stress level nor his BP.  As we are almost home, he tells me he forgot to get his meds filled that are now empty, since yesterday.  I told him that I had asked him Friday if he was running low on any of his meds--which I knew he was--and he said no he had other bottles.  Now it will be several hours before they are filled at our local Wal Mart and he will be missing 2 doses he needs to take on a regular schedule.  Plus he looked at me and said they upped his 02 to 4.5 liters.  Well, his 02 machine we rent, only goes to 5 and IDK what we are going to do if his usage goes any higher. He has a number of pleural cavity 'bubbles or scars'  that are inside and outside his lungs that tend to fill with fluid.  This is due to the many times he has had pneumonia since he was an infant. He had pneumonia three times last year and two of those was in the summer!  Anyway, we finally made it back home and he did his usual and is now in bed sleeping.

What really has me mad as I all get, is they ONLY TOOK 1 liter today!  One Liter!!!  I asked Lee why, and he said they think that is his optimal level of fluid to remove.  I am speechless.  I am currently awaiting his nephrologist to call me back as I left a very terse message with his secretary.  Apparently, we did not come to any understanding with Dr. F last week, whatsoever.  Now all I have to look forward to tonight and tomorrow, is diarrhea and vomitting.  I have noticed the trend when they remove under 3 liters off of him, he gets severely sick. I have no doubt I will have him in our local ER around 1 or 2 in the AM later on tonight.

CC: Dr. F called back and said they are going to find his 'dry weight', whatever that means and they will be upping the removal process over the next several weeks and refining it until they find the optimal removal limit.  I told him about Lee and what he is doing and he said that the next time he is in our home town, he wants to have an indept talk with both of us.  I told him that would be great by me as Lee is not following any protocol he has laid out for him, whatsoever.  Dr. F told me that Lee said he was and I told him I live with Lee 24/7 and I know for a fact and that our daughter could tell him as well, that Lee does not follow anyones rules but his own.  Dr. F then said that unless Lee starts to follow the guidelines, he will have a short life expectancy.  I told him I realized that, and I am up against Lee and his mother--both of whom thinks they know best.  He went on for several minutes describing what will happen unless he changes.  I told him thanks for calling and and for him returning my call.  I am glad that this is just a stepping up measure to find the limit that needs to be reached/obtained.  Stress is lesser.

I am going to get Leah to write up a paper describing what her father does.  I will hand this paper to Dr. F when we have our appointment later on this month.  I hope that he will come to understand that what Lee says is not what Lee does.

MooseMom:  I fear I did not make myself quite clear, I am not grateful for people having a worse situation than I, just saying it in a religious context, if that makes any sense. No, it don't make me feel any better that someone(s) has it worse than I. Also, I am a Kentuckian, 100% so, just I am not native to this county I reside in.

jbeany:  Lee is far from mentally incompetent.  He is just more oft than not, 'confused' or 'lost'.  I am awaiting for Lee to have one of his 'good' days to discuss adding to our living will giving me complete and total authority over him and for him and to include that his mother is to have 0% say so in his health care and decisions.  We had discussed this years ago, but never thought that we should of included this years ago as we foresaw no need for that. 

RichardMel:  Hmm, could be RichardMel.  It could be some kind of male genetic factor that makes men when they are ill, drive their women wild with their petty ways.  I am only teasing!  His mom buys him cola and Leah has made the habit of taking it in her room and then pouring it down the drain!  As for the sweets and the cakes, that's a bit harder, but we have been managing to bag them up and she takes them to school to give away.  LOL I know, that is bad for the students, but much rather give it away than toss them.

His mom did come with us, once so far, and she said there is no way she can do that.  She went on and on about how 'hard' it was to know of her 'only baby' being hooked up to a machine that wasn't doing anything to 'cure' him.  I listened for over 4 hours to her whining about how I should of done better by her son. 

So for now, things are 'calm' and steady.  I am concerned that his BSL's are getting out of hand again.  He is drinking over a gallon of water a day and more.  I have mentioned it to Lee over this past weekend that he was way over the limit on his intake, as he rarely urinates any more.  Which brings up all the lies he tells to his regular doctor and his nephrologist.  He told both of them he urinates regularly--big lie.  That he monitors his intake--bigger lie.  That he watches what he eats--his nose is touching the moon.  So, now this group has an ideal of what I deal with 24/7. 


I am so sorry for venting and making other posters on here so upset.  My sincere apologies in this regard.  We are very different here in the mountains than from other parts of the USA or the world, for that matter.  I spent the better part of this weekend working outside to get some very early yardwork done and I was all but falling into bed Saturday night.  I did come back inside quite regularly to check on him. Don't have no fear that I don't devote my time taking good care of him. It seems that Lee has found another thing to annoy me with, he decided to start wearing socks and joggers to bed.  He will not sleep until I have his socks pulled up 'correctly' and his joggers pulled to where the elastic is under his heels.  I have to get up and cover and tuck him in nice and tight, as well.  I was like wth is up now?  I have to make sure there is no water in his 02 line, so that he don't 'drown' at night.   The list keeps getting longer and longer with all his little weirdoes thingies.

I guess I should get the bottle and diapers out next.  Can anyone donate any size 3X diapers and maybe pint bottles/nipples with a sanitizer?

[Tracy]

Karrye,
I'm from Texas and feel like you could be my  neighbor!  You (I don't know how) have a pretty good sense of humor and you need to  keep that as long as you can.  Gosh, that makes me so angry what Lee is doing.  Obviously, they didn't take enough fluid off of him.  I was feeling pretty bad there for a while (like before I started D) and the doctor started taking .5 more Kilos off of me and I started feeling so much better.  So, they do have to try and find his dry weight.  It will be hard.  Once I start cramping a little, I know I'm there.

I totally wish you the best of luck.  You hang in there.  Maybe you could use Gma to babysit Lee while you and your daughter go to dinner or a movie. 

You have many friends here.  Tracy 

[RichardMEL]

Wow!!! This post makes me so angry I fear my kidney may pop out!!!!

Not YOU Karrye, but Lee!

Well, on the way back home Lee gets it in his head he wants to go to the post office and check the mail.  I told him we would stop and I would run in right quick--huge mistake.  He didn't even wait for me to come to a complete stop until he had the door opened and was getting out.  He grabbed his 02 'bag' and his walking cane and walked into the post office. Roughly 15 minutes later he came back--and no, I didn't follow him.  He gets very upset when I follow him saying I am 'spying' or don't 'trust' him.  I try and do anything to keep him calm and stable as to not increase his stress level nor his BP.

So wait, he's on 4L of oxygen and he's "rushing" into a post office to get some mail that you could do so much more easily? Why would he do this?? Was he waiting for secret porno stash or something to arrive? What's the deal with that?

As for the "spying" and lack of trust thing - that's simply appaling!!! If anything *I* would have said to him "But she can run in and have the mail picked up in a couple of minutes!" and the other argument about you going with him is to make sure he's OK - for heaven's sake he just came off Dialysis in a disoriented kind of situation (not normal) and he wants to go alone into a post office. Heavens you'd think you'd want to be there in case something happened to him. Yikes!!!

As for the spying thing. Wow talk about insecurity and paranoia. Neph should probably get him referred to a psychologist or something (not that he'd go....) That's just scary.

As we are almost home, he tells me he forgot to get his meds filled that are now empty, since yesterday.  I told him that I had asked him Friday if he was running low on any of his meds--which I knew he was--and he said no he had other bottles.  Now it will be several hours before they are filled at our local Wal Mart and he will be missing 2 doses he needs to take on a regular schedule. 

Irresponsible.. and I'm sure if you said to him maybe you should manage such things he'd again accuse you of spying or trying to run his life or something. Do you think he "forgets" this stuff on purpose???

What really has me mad as I all get, is they ONLY TOOK 1 liter today!  One Liter!!!  I asked Lee why, and he said they think that is his optimal level of fluid to remove.  I am speechless.  I am currently awaiting his nephrologist to call me back as I left a very terse message with his secretary.  Apparently, we did not come to any understanding with Dr. F last week, whatsoever.  Now all I have to look forward to tonight and tomorrow, is diarrhea and vomitting.  I have noticed the trend when they remove under 3 liters off of him, he gets severely sick. I have no doubt I will have him in our local ER around 1 or 2 in the AM later on tonight.

oh dear

CC: Dr. F called back and said they are going to find his 'dry weight', whatever that means and they will be upping the removal process over the next several weeks and refining it until they find the optimal removal limit.  I told him about Lee and what he is doing and he said that the next time he is in our home town, he wants to have an indept talk with both of us.  I told him that would be great by me as Lee is not following any protocol he has laid out for him, whatsoever.  Dr. F told me that Lee said he was and I told him I live with Lee 24/7 and I know for a fact and that our daughter could tell him as well, that Lee does not follow anyones rules but his own.  Dr. F then said that unless Lee starts to follow the guidelines, he will have a short life expectancy.  I told him I realized that, and I am up against Lee and his mother--both of whom thinks they know best.  He went on for several minutes describing what will happen unless he changes.  I told him thanks for calling and and for him returning my call.  I am glad that this is just a stepping up measure to find the limit that needs to be reached/obtained.  Stress is lesser. [/b]

It is important that the neph is more fully aware of what REALLY is going on vs. what he is told by the patient who is clearly a founding father of noncomplaince city. This will hopefully guide his actions and responses in future. It sounds like he's trying to be supportive.

About the dry weight. This is also known as the "ideal body weight" which is basically Lee's weight post dialysis with the fluid removed - ALL the fluid. It's a moveable target at times, and it's basically a best guess, but the idea is to find the Dry Weight (as in you come off the machine "dry" vs. the "wet" weight that you come into dialysis with, because you're holding fluid). The idea is if you try and maintain that weight post dialysis it will be easier and more regular to work out how much to take off (which will be your "wet" weight you come in with, take away your dry weight). For those that actually give a crap (ie: not Lee ) it's useful to keep a note of that and work towards minimising fluid intake between treatments to 2kg/litres or less.

There are a number of ways to work out the dry weight - the most basic is to keep taking fluid until one crashes/cramps, which is an indication that you're too dry. The other way is to run a "crit line" (otherwise known as a BVM, or body volume measurement) during the dialysis treatment which shows the refill rate of fluid into the blood stream - this gives a more accurate indication of how wet or dry someone else and if done properly can minimise the need for painful cramp or crashes to figure out when too much has been taken off.

What I want to know is what the heck have the neph and the dialysis unit been doing all this time if NOT establishing a dry weight andd trying to keep it there? That's usually the first process undertaken when you start dialysis?!!! I don't get that AT ALL.

I am going to get Leah to write up a paper describing what her father does.  I will hand this paper to Dr. F when we have our appointment later on this month.  I hope that he will come to understand that what Lee says is not what Lee does.

You know while I understand this idea, I would not personally do this. You already mentioned she hides away in her room and is having enough trouble dealing with what her father does. This is sort of dragging her in more a bit - unless of course she WANTS to but I'm not so certain that would be a good idea. That's just my opinion though - I'm sure everyone else will have different opinions on that one. I understand you want to try and give the neph another view of what goes on at home though.

RichardMel:  Hmm, could be RichardMel.  It could be some kind of male genetic factor that makes men when they are ill, drive their women wild with their petty ways.  I am only teasing!  His mom buys him cola and Leah has made the habit of taking it in her room and then pouring it down the drain!  As for the sweets and the cakes, that's a bit harder, but we have been managing to bag them up and she takes them to school to give away.  LOL I know, that is bad for the students, but much rather give it away than toss them.

I drive women wild.... well up the wall anyway

Bless Leah for pouring out the coke!! What a dear girl she is. It sounds like you both are trying so hard. *sigh*

His mom did come with us, once so far, and she said there is no way she can do that.  She went on and on about how 'hard' it was to know of her 'only baby' being hooked up to a machine that wasn't doing anything to 'cure' him.  I listened for over 4 hours to her whining about how I should of done better by her son. 

Oh My God! What an ignorant stupid woman. SHE can't handle it? She can't handle the truth?! She's not even the one hooked up to that bloody machine. Holy crap!!! "there's no way she can do that"? What be there to help her "baby"!! WOW. The mind boggles. It truly does.

How could YOU have don better by him? You didn't give him the disease, you've tried so hard to assist him in every possible way to get through this better - SHE could have done MUCH better by her "only baby" yet she just doesn't see that. Yes, dialysis is not a cure. Transplant is not a cure however dialysis CAN allow for quality (and quantity) of life - but you have to work WITH it, not against it. And Lee and his idiot mother are working against it. And that's just sad.

So for now, things are 'calm' and steady.  I am concerned that his BSL's are getting out of hand again.  He is drinking over a gallon of water a day and more.  I have mentioned it to Lee over this past weekend that he was way over the limit on his intake, as he rarely urinates any more.  Which brings up all the lies he tells to his regular doctor and his nephrologist.  He told both of them he urinates regularly--big lie.  That he monitors his intake--bigger lie.  That he watches what he eats--his nose is touching the moon.  So, now this group has an ideal of what I deal with 24/7. 

wow. Denial. Sad. Paging texasstyle!!! This is like a mirror copy of her husband. I just don't get it. I really don't.

Wait... 1 US gallon of water is 3.79L. You tell the neph that and that alone and he'll have a fit. Lee will get fluid on his lungs and around the heart (probably already does) which just puts more stress on his system and can be deadly. I know YOU know all this, and it's just horrid that Lee doesn't understand or care the huge damage and risk he is doing to himself.

I am so sorry for venting and making other posters on here so upset.  My sincere apologies in this regard.

Don't you DARE be sorry!!! This is what we are here for. Clearly you need an outlet for your stress and struggles, and we are here for you. We can empathise and get angry and frustrated with you. yes upset too - but that's for you, and for Lee and Leah etc, but not upset with you for sharing. People like you are one of the main reasons IHD exists. We may not be able to help though we so much wish we could, but we ARE here to offer YOU all the support we can.

We are very different here in the mountains than from other parts of the USA or the world, for that matter.  I spent the better part of this weekend working outside to get some very early yardwork done and I was all but falling into bed Saturday night.  I did come back inside quite regularly to check on him. Don't have no fear that I don't devote my time taking good care of him. It seems that Lee has found another thing to annoy me with, he decided to start wearing socks and joggers to bed.  He will not sleep until I have his socks pulled up 'correctly' and his joggers pulled to where the elastic is under his heels.  I have to get up and cover and tuck him in nice and tight, as well.  I was like wth is up now?  I have to make sure there is no water in his 02 line, so that he don't 'drown' at night.   The list keeps getting longer and longer with all his little weirdoes thingies.

We all know you are doing your best to look after him, despite his own self sabotage. Have no fear.

Wearing socks and joggers to bed? That's bizarre. He really does have some real issues...

I guess I should get the bottle and diapers out next.  Can anyone donate any size 3X diapers and maybe pint bottles/nipples with a sanitizer?

At least you can keep your sense of humour hun. This is very important. I have a sense you will need it that much more over the coming time.

lots of hugs to you

 

[rsudock]

If you hate being a caretaker as your subject line indicates, then you should put him in a home.
-R

[del]

Karrye, I love your sense of humor!!  It is going to help you keep your sanity!!  I can't believe that he is telling the dialysis people lies.  That is not going to do him any good at all - probably going to hurt him.  I sure hope they believe you and your daughter.  Be sure to take time for yourself to help with the stress. Take care 

[karrye]

Wow what a rollercoaster this has been this month!

First off, thanks for the nice replies!  It makes my evening to actually have a bit of time to catch up on them!

Rsudock: Believe me I would if I could, but things are a bit better now...Just read

Lee had a bleed in his right eye and we thought for sure he lost his vision permanently, but after some 'vacuum' surgery and then a shot to stop the invasion of capillaries that is invading his retina, there seems to be a light at the end of the tunnel.  We went back to the oph and after an  extensive exam, the oph said that the surgery and the shot is working.  Lee can now see at 10 feet, the first letter on the chart.  The doctor said that was extremely good.  I was like, that is good? And he said yes considering all he could see was shadows before.  Lee, apparently, stretched the truth a bit when he said he could 'see' out of his right eye.  His left eye is 'shedding' cells, but his oph said that his body will absorb them over time and not to be too concerned about them, but that he would keep a close watch on them.  Lee has to go back monthly, until this situation is cleared up. 

We finally found a dry weight (I am probably not using this in the right context) that is working quite well for the time being--2.75 Liters--a little more or less on each visit, but always in that general area.  His weight is slowly but steadily coming off.  He is down to 290!  That is the lightest he has ever weighed in 14 years!  His nausea and diarrhea have all but vanished and the headaches too.  I think the biggest thing was shortly after my last post, I drove up to his gp and told him that Lee was on way too many meds and I was quite concerned that he was taking doubles and triples of medicine that was for the same thing!  Well, turns out I was right.  His gp called up his neph, oph and his onco and teleconferenced and came to the conclusion to literally, suspend all meds but his diabetes one.  After 9 days, they considered him 'clean' and started him back on a much lesser regiment. There were 4 for his bp, which he only needed one!  The removed over half of the meds that Lee was on and now he is at a manageable 3 insulin's and 9 pills now!  His 'dementia' has all but gone.  Yes, he still has a few 'blonde' moments, but nothing compared to earlier.  His bp, bsls, and creatines levels are now almost in the low normal and upper normal ranges, all which are considerably better than they was.  He is thinking much clearer and actually is getting back to his old self!  He now does 99% of his bodily upkeep and dressing.  The 'odd' behaviors he indulged in for several weeks have gone away as well.  So, from all of this, I draw the conclusion that he was being over medicated.  His gp agrees with this assessment as well. Unfortunately, his neuropathy isn't any better and they had to up his dosage on his painkillers.  That didn't go over well with me, but I do have to give ground somewhere.

No, this don't change how I feel about me being his caregiver.  I still hate it.  I have to still drive him everywhere and do even more now, as he don't have the 'nod' from his oph to drive yet.  Well, I guess that is the trade off--having Lee almost back to himself, versus someone that isn't even Lee.  At least he is in his 'right' frame of mind and can be reasoned with.

We did get all of the legal work taken care of and well folks, ever see a woman have a litter of kittens? I did!!! lol  His mom hit the roof when Lee regained 'himself'.  He told his mom, after we got back from our second visit with the attorney, what we had done and he gave her an updated copy.  She read it and went into her 'tears and regret' role and then the "I can't believe my baby did this to me role" and finally the "You are a (&(&( (&(^(&* ^&(&(& daughter-in-law' role.  Oh well, no love lost and can't miss what you never have, right?    Regardless, I have 100% discretion now and his mom has zero.  WOOT!  We did add a few exclusions for unforeseen issues such as diabetic or ureamic coma, if it goes that far, otherwise, things in the legal department are solved.  The attorney did note that Lee was much more alert and in his right 'mind' and was quite capable of making his own decisions for the time being.  He noted that on the documents as well, but he did say that when or if Lee was to ever permanently be like he was before, he would highly suggest to me to put him in a nursing home and take it from there and Lee agreed.

I never made Leah do that btw.  I was just so mad and upset at what he was doing to himself that I was at wits end on what to do.  Oh, we don't qualify for any public help atm.  As he is on sick leave, we miss any public help by around $200.  Yes, a lousy $200. 

Lee made it out of surgery today with flying colors.  We found out Friday at his cardiologist that he had a 95% blockage in his right carotid and jugular.  He was in surgery for under 2 hours and he was lucid and doing well.  Dr. Mitchell said that during the whole procedures, he had and EEG going as well as the ECG.  Any flux in any waves, he and his staff was 'right on top of it'.  Lee said he was 'uncomfortable', but it was bearable.  I am glad Lee was smiling! I have missed his laughter and smiling for along time.  Anyway, he is doing good and Dr. M thinks that he got all of it and no 'breakaways' whatsoever.  He said in the next few years, Lees' left side will have to be done, but it is only around 30% atm, so it is  really no deal to be concerned at this point.

I am slowly learning, Ihatedialysis board, about what it means to be on dialysis.  I have been giving Lee living hell now about all of the things I have been learning.  I never realized what foods were no-no's and what are ones are good.  Lee still is into the fluids, sodas, chocolates, noodles and other foods, but I am slowly but surely changing that.  Since he can reason now, I told him if he wants to see any grandchildren, he needs to start following the rules.  He agreed, much to my relief, but that still don't stop him from sneaking over to his moms' and grabbing things.   No, we aren't expecting any grandchildren for a few hundred years yet! hehehehehe

Yes, he is up and moving around.  He takes short walks around the yard and sits outside, as weather permits.  He actually does some light cooking, something he said he really misses.  He is a great cook!  The dietitian quit and I am reading books from the public library, trying to educate myself on how much of what he needs and what he don't need, and especially things that are totally against a dialysis diet.  I am reading post on this forum as well.  So any help in this area will be read ragged! I am learning.  I make sure he eats enough protein each day, and that includes 3 eggs.  Thankfully, he loves scrambled eggs and Mrs. Dash comes in so many flavors!    I've got an electronic food scale and have been making good use of it.  As he loves onions and garlic, I make sure to use them quite often too.  It makes him reek, but its good for him!  LOL

Leah has made a huge improvement too! She is out of her room and she pesters her father to no end!  She really enjoys having her father back and tells him everyday how sad and upset he made everyone. Yes, she is really vindictive like that.  Takes after her mother, I am afraid.  Lee tells her everyday that no matter how he behaves, he really does love both of us and that he did 'come' back.  It just took time.  I think Leah will take some time to heal.  She is really such a delicate and fragile soul.  I do see the difference and even her teachers told me they can see a huge difference in her and her school work.  Plus, having a new boyfriend seems to be helping too.  LOL

I want to personally thank each and everyone for the opportunity and time you all took to comfort me in my lowest point of my life--so far.  I am sure, that further on down the road, there will be even worse things to live through, but for now, I have made it over this hurdle.  My heartfelt thanks.

Oh, I do have some 3x diapers and bottles/sanitizer to loan out.......

Karrye

RicharMEL: Please try and keep your kidney inside your abdominal cavity or Hannibal Lector might get it and make a pie.  I guess Lee thought he would 'prove' he was able to do what he usually does and he just got it into his head and was on a one way street.  After he got 'clean', I told him about some of the odd things he did and he actually was appalled at his behavior and ashamed.  He apologized and said that he didn't mean to be so hateful or so not himself, but I reassured him that we lived through this and I am quite sure we will have other times like this as well. 

I have found over the years, that men have 'selective hearing disorder' and I am quite sure that is akin to "conveniently forgetting disorder".  See you men aren't as smart as you think.  We women are onto you!!  j/j

Yes he is having some issues with fluids around his lungs and diaphragm.  He spent over a week in the CICU for this problem in the middle of January.  He is still drinking around 1 to 2 gallons a day, but he is urinating again too.  He output is almost equaling his input, so, I think that this is good.  I did tell Dr. F and he just frowned at Lee and told him that he needs to limit ALL FLUIDS to 2 liters or less a day.  Lee thinks that fluids are literally fluids, but I told him that includes any fluids found in his food too.  Dr. F said to him, that I was correct in that.  Lee got this perplexed look on his face, like he couldn't believe that he had to include anything 'wet' as a fluid. DUH.

PS: Richard I hid all of the porn....hehehhe  j/j

del:  Lee has a way of charming people, believe me, and if he keeps on this path of self destruction, he will die long before his time.  It is something I have come to accept and make a part of me.  If that sounds cold, so be it.  I have learned during my life, that one lives by the gun, will sooner or later die by it.  Lee lives for Lee. I am slowly changing it, but I cannot control 24/7 all of the things he does.  He gets up during the night and drinks water/milk/other fluids and I find the glasses in the morning when I get up.  I can't put a lock on the fridge..well I guess I could and shut off the water to the house too, but boy, the whole house would reek from the unflushed toilets!! lol

Tracy: Its a pleasure of meeting you!  Maybe someday we can be neighbors.  I have often thought of moving to a warmer place then my old Kentucky home. So who knows? lol Do you need any 3x diapers? LOL  Anyway, things are looking up and hopefully, we will be home Thursday or Friday morning.  I really hate this 'hospital housing'.  The rooms stink and the carpeting/bedding is so dull and dingy.  Well, its free and with around 500k plus in medical bills and climbing, beggars can't be choosers.  I haven't seen a movie in years.  At our home, the nearest theater is over 40 minutes away! LOL  The price one pays for having this nice view and privacy!  At least we have mountains here and not 'bumps' y'all call hills...hehehehhe  Take care.

[monrein]

Thanks for taking the time to update us so fully (and very funnily in spots too!) about what's been going on with you guys.   Sounds like many things are much better and that's great to hear.  Hope Lee continues to improve and that your load gets lighter as a  result.