Caretaker and hating it.

[paris]

You write wonderful posts!  First I am angre, then laughing out loud, then crying!  It has been hard on you.  I'm sure my husband feels a lot like you do because he is use to me doing everything.  He gets on edge some days and I assume it is because my issues have pushed him too far.  "caregiver" isn't a role he is use to.  And there are days I hate the burdon that has been put on him by me.    BUT, the days seem to be getting a little better for you and I am so glad.  I do think many of us are over medicated sometimes.  Good for you for catching this!  You may hate the job, but you are very good at it.         

Keep posting so we can be with you on this journey.  It's not always fun but there are always surprises!!!

[RichardMEL]

Oh this update post has TOTALLY made my day!

Wow, what a turnaround and all thanks to you getting those docs to liase and sort out the meds - that's a fantastic result, and look at everything that has stemmed from that simple act!!! He's more himself, rational, listens to you, your daughter is out of hiding (ok, maybe that's the bf ) and you've even dealt with the evil M-I-L!!!

I am just so happy that things have improved so much for you, Lee and Leah in so many ways. Thank you so much for updating us. May things continue to improve for you both!!

 

[del]

   I'm so glad you got things sorted and have your husband back!!! 

[Gandalf]

Karrye, my heart really goes out to you - the situation you describe must be absolutely heartbreaking for you.  I can only imagine how difficult it must be to have to witness someone you love and care for seemingly hurting themself without any reserve. 

It is really difficult to separate out the medical issues from the psychological ones, in terms of trying to determine why he would react as he is.  Perhaps, we cannot really know at this point, but it must surely be the obligation of his Neph and other technicians to try to make a more holistic assessment of what is going on here?  Shouting at you when you raise your concerns?  That is totally unacceptable in my view - this person is a professional service provider, and he owes you some type of explanation, if not assistance.

Whatever, while I think you are absolutely amazing for bearing all this, it is totally unfair that you should have to shoulder the burden alone.  His mother is placing you in an intolerable situation - while she says it is too hard for her to witness her only son in this situation, she is making it a thousand times worse- in my opinion her behaviour is more destructive than your husband's.  Wow, if only she had a degree of insight into what she is doing to him - and to you!

I am really keeping your situation in my thoughts and prayers; please know you are not alone.

[karrye]

We get to come home today!!!   Thanks everyone!  Another crisis adverted for the time being and from what the weather is saying, I am afraid we won't be able to reach our home due to almost 3" of rain headed our way!!!  We have no road to our home, but only a creek that is 1/3 mile long!!!  As our 'road' is solid rock for all of that 1/3 mile, I guess I will try and go up it in 4 wheel drive.  Yes, I have driven in flood waters before, but not after 3" of rain...we will just wait and see.

Thanks IHD board!!

[willowtreewren]

Hooray!  Hooray! 

Karrye, you are so very expressive and your posts are great to read! Ever thought about a career in writing?

 

Aleta

[chatrbee2]

I really feel for you.  We've been dealing with dialysis for a year with my father and I am having such a hard time riding the tiltawhirl.  His cases is different but it causes him to be hard to deal with and to get his diet right.  The hospitals aren't much help either so it makes it even harder.  I have to admit I logged in here today having the same feeling as your subject line.  I love my dad but he gets so mean, and I realize I have no idea how he feels but taking how he feels crappy out on me is starting to wear me down.  There are better moments so maybe that's what you need to focus on.  It is very hard to be an awesome care giver as much as it is to be a patient.  I had to step away from the hospital today because both my father and the hospital are getting to me.  They do so may things wrong with diet and medicines and then they give me a hard time.  Once I'm in his room he's not with himself wanting to go home, being mean to me.  So today I just said, I'll be in later, I can't do this right now.  Sometimes as much as your heart tells you not to do that you have to step away and step back when you can help them.   Lots of it with my father are all his medicines, but being dialysis not washing them out right away doesn't make it much better until he's cleaned out.

[RichardMEL]

Hi Chattrbee2,

Good post. I'm sorry you're finding it so difficult. Often the ones closest to you (as in the patient) are the targets to vent frustration, anger, depression (and then some) because they're "easy" targets. It probably isn't even a conscious thing... your father is lashing out in his discomfort and frustration with it all, and who is there? The caregiver.... That's what can make it so difficult for you guys as caregivers - you want to help so much, yet can only do so much, and then have to bear the brunt of this stuff as well.

*huggles* (tm poppy)

one question: you write that the hospitals aren't much help - in what way do you mean? Support of your father? advice on diet management? what sort of thing?

[looneytunes]

Chatrbee...being a caregiver is tough.  It takes a little bit of hardening your heart and stiffening your backbone to make it through just a normal day.  We sometimes walk around with a bullseye painted on our foreheads but that is because our loved one knows and believes in our unconditional love for them.  No matter what, your dad believes you will be there for him.  And you will.  But, (there's always a but, huh?) you have to draw a line in the sand and let him know that crossing it is taboo.  It sounds like you have done this already.  Just keep the line there and if you need to walk away, do it.  He will get the message.   

[rsudock]

I am glad to hear that he is coming around and doing better. Glad the burden isn't as great to bare...hang tough!

[karrye]

Lee is highly fluid overloaded.  As he spent most of his time in the hospital laying down or sleeping, I never noticed. Well, when we got home, I immediately called the dialysis clinic and told them he looked to be around 25 pounds or more heavier than he was.  They said bring him in earlier on Friday morning and we was there when they opened the doors at 5:00 AM.

One of the nurses came out and told me he had almost 35 pounds of fluid back on him!!! So, they took 4.5 liters off Friday and then yesterday (Monday) another 4.5 liters.  I called the hospital where he had his surgery and found out they had used at least a dozen bags of IV fluids and and other fluids during his complete stay.  I asked why didn't they remove that excess fluid during the various dialysis treatments, and once again, she had no answer for that.

They put him back on 4 more meds, abet 2 are antibiotics, one is another bp med and another pain med.  Hopefully, 3 of the 4 will run their course in 12 days!

Anyway, I haven't had any 'straight' sleep since Thursday, as all this excess fluid has Lee not sleeping due to his heart and lungs doing the "rumba" in his chest.  He has to be almost upright in his recliner to breathe.  He could breathe much easier last night after we got back home from dialysis, and I told him I am quite sure that after tomorrow (taking in consideration if they remove 4.5 liters again), that he would be almost back to himself.  He agreed on that assumption.  We then talked at length about what we can do the next time he is in the hospital and receives fluids and we both agree, that the first thing is to make sure that during any dialysis he receives, the 'removal' should be upped as well.  Yes, we are finally working as a team on his dialysis and other care--for the most part, anyway.

Now to the 'icky' part.  His drainage hole is draining like no tomorrow.  It is about an inch from his chest port for his dialysis.  Well, last night, Lee had had enough with that bandage.  Yes, I change it twice a day, like his discharge papers said and I use extreme care in making sure I have surgical gloves on and even disinfect my hands before putting them on.  I cover my mouth with a mask and then take off the bandage.  I then use alcohol and betadine to clean the site and using as small as possible absorbent bandage and cover it back up.  Well, that isn't a reality now.  Lee wanted it all removed, except his port bandage, and boy, the mess is everywhere!  The front of his shirt is 'hard' from the discharge.  The bandage over his port is covered. Luckily, it is suppose to be water proof, which I am hoping means discharge proof as well.  You can imagine the mess on his recliner and in the bed.  I had to toss 2 of his bed pillows and had his mom go buy two more (her expense!! LOL) and got them on the bed.  I took the steam cleaner and got the recliner cleaned.  I am, atm, trying to get him to change his shirt and he is giving me hell over it.  Oh well, he is in one of his 'self pity' moods.

He has dialysis tomorrow and I told him I hope he has a good explanation for why he did what he did, to tell them.  I told him HE WILL CLEAN UP or by all that is holy or unholy (you pick!! hehehe) he will be cleaned if I have to get the pressure washer out of the storage shed.  So, we are at a standoff.  Anyone want to wager who  is going to win this one? 

We got alot of rain and huge wind storms.  I suppose if you are here in the USA, you saw all the tornadoes and the woman that lost 3 children and her 1st cousin that was a child, as well.  It was an Amish woman that had 6 children in her buggy and was crossing a stream like many times before and a flash flood hit her.  It flooded here, but nothing that my 4 wheel drive couldn't handle.  My daughter turned 17 yesterday!   Where did the time go!?!?!

Dsurock: TYVM

Chatrbee:  Hang tough!  It isn't easy and from all I notice about Lee and his struggle, its more often fear and being scared out of his mind, that makes him react the way he does.  Its his way of trying to regain some of his dignity and self worth again, w/o knowing how to do it.  Yes, its a tough thing to deal with, and just walk off.  You have to consider time for you, whether you think you can or not. 

Willowtreewren:  Heheheh I am busted.  I do write!    I have had a few short stories published many years ago and am currently working on my first novel that would of been ready for press at this time, but is put on infinite hold until this situation with Lee is managed.

Gandalf:  Tyvm for your kind reply.  Well I am finding that not 'sweating' the small stuff and concentrating on the bigger picture, is making alot of difference.  Once Lee 'stabilizes', again, things will ease up.

Monrein:  If I didn't post any humor, everyone who follows my post would think I was some kind of 'dungeon mistress' ( ) and perhaps, a bit outta my gourd! 

Del: Thanks!

Richardmel: *Attaches tracking device and calls mothership for him* 

[del]

Karrye, I can't believe the staff at the hospital filled him full of fluid!!  Didn't they realize he was a dialysis patient?  35 lbs is a LOT!!  They should have seen that before he was released and given him dialysis. I can't believe he had to wait until his regular day to do dialysis.   Hubby always makes sure to remind them that he is a dialysis patient and not to give him very much IV.  They usually just turn it on so that it is just a very slow drip.  When he had his gall bladder removed with a scope a few years ago the doctor put him in ICU over night even though there weren't any complications just in case he needed dialysis and there was a portable machine in the ICU.

I really hope he doesn't get an infection in his line from the drainage (there has to be germs in the drainage!!)  He needs his butt kicked big time!! 

I love reading your posts!!    to your writing.  Keep it up it'll help with the stress.

[chatrbee2]

Chatrbee...being a caregiver is tough.  It takes a little bit of hardening your heart and stiffening your backbone to make it through just a normal day.  We sometimes walk around with a bullseye painted on our foreheads but that is because our loved one knows and believes in our unconditional love for them.  No matter what, your dad believes you will be there for him.  And you will.  But, (there's always a but, huh?) you have to draw a line in the sand and let him know that crossing it is taboo.  It sounds like you have done this already.  Just keep the line there and if you need to walk away, do it.  He will get the message.   

He also goes in and out his health issues are so much more than dialysis and I know this.  Dialysis is just the icing on the cake and the hospital/staff over all aren't helpful they don't listen and often they feed him horrible and cause more issues as he doesn't really understand the whole picture of what goes along with dialysis.  I've reported them a couple times just for how the send in foods without any though of diet and when they so think of it the food isn't fit for dogs So it is enough to make anyone crazy.  It's amost unsafe to leave him alone in the hospitals and the staff has more than once asked how we handle him....what else is one to do? I'm not wanting them to keep him that's for sure.  He hasn't been getting better everything seems to be affecting his mind.    He walked into the hospital a year ago and landed on dialysis...I haven't really seen my dad to much since dialysis started.   I'm not sure who hates dialysis more.  Him because he's sick or us because we can't get it to seem to work out for him. :-/

What would help is getting his food right, the diet makes me crazy.   Any help with good snacks!?!  He eats like a toddler.  The whole ordeal for us has been frustrating and heart breaking.   But good comes out of it.  I know see what others go through who deal with it an when I see something I can help with to make something go easier for them because I am lucky not to endure it .... I do. 

 

[karrye]

Just a generalized update to keep everyone informed.  I am beat and grab naps when I can.  Lees' health is failing rapidly for some unknown reason.  I have had him at his gp several times in the past several days and he don't know whats going on either.  Dr. F was at the dialysis clinic Friday, and I had just dropped of Lee and went back home to nap.  I asked Lee about this later and he said he had 'forgotten'.  Perhaps...

Regardless, he is back at his 'dry weight' again.  On Wednesday, they removed 6.1 liters; Friday, another 6.5 liters; and yesterday, a whomping 7.1 liters!  That one, I must admit, scared me silly!  That is an amazing amount of fluid removal in such a short time--to me at least.

I have noticed something odd on his hands/arms, tiny petechiae type 'blisters'.  Is this normal? It really looks horrible and Lee says it is nothing to be concerned about.  Well, thanks everyone and I am going to try and catch me a  nap. I am, sincerely, dragging.

[MooseMom]

Life is hard enough without yet another medical mystery to solve.  You are right...that's an enormous amount of fluid they're having to take off.  Such a large amount being taken off so quickly over only a few times a week (compared to how slowly and evenly healthy native kidneys perform) has GOT to be physically traumatic...maybe therein lies an answer?  What's causing so much fluid to accumulate in the first place?  Any idea?

[RichardMEL]

I had always been told my my dialysis folks that they limited fluid removal to 5L at a go because more than that could be dangerous... obviously they could and would in emergency situations, but yikes.. over 7L is scary.

I am a bit confused - I thought Lee was being much better now that  his meds had been sorted out more and he was clearer headed and more compliant???

[looneytunes]

Wow!  That's a lot of fluid...is he being compliant as far as fluid intake restrictions?   

As far as the blisters, could they be from high phosphorus/PTH issues?  My hubby has these little bumps that come up all over his body that itch and when he scratches them, they break open and bleed.  Our neph sent him to a dermatologist who said they were plaque/calcium deposits under the skin caused by high PTH and high phosphorus levels.   This may not be the same for Lee but it's more common with renal patients to have these.

Sending you a big cyber-hug.    




 

[okarol]

  {{HUGS}}

[lmunchkin]

I wonder if things are any better for you now, Karrye? Things have got to be somewhat better, right?

[karrye]

I am back.  For a bit of off topic and I shall be brief.  Sorry for not posting sooner.  I have been extremely ill since March 25 and finally can actually walk again and use my whole body! Woot I am so happy!!!  I should of realized what was going on when I started 'dragging' but didn't. LOL Oh well, at least I won't have to worry about my 'unknown' muscle disorder for 5-7 more years!! hehehehhe

Anyway, Lees' fluid overload was due to surgery he had.  He is now back to normal and they set him a new dry weight goal.  He is loosing so much weight and that bothers me to no end.  His new dry weight is now at 126 and at dialysis yesterday, he met that goal.  He has his bad days and good ones, abet the good ones are more often than not now.  Thanks everyone!

Since my last post, Lee has had 2 more surgeries, both of which have been on his fistula.  One was to 'adjust' the position of it and then they found it was too 'deep' and he had out patient surgery to correct that 8 days ago.  Ugh the mess they made of his upper arm. He had 27 staples in that huge incision!  Well, his neph said that they should be able to start using his fistula this month and hopefully, remove the chest cath around the last of June or so.  I sincerely hope so.

Lee got back on the sugar train.  No sooner than I get him off one bad habit he grabs onto another.  He ATE AN ENTIRE HALF GALLON OF ICE CREAM IN 4 HOURS on sunday! His reasoning, he deserves a break every once in awhile.  His dietitian agreed he could have up to a half cup of dairy per day, but he thinks he should have at least a quart or more and I have been keeping any and all dairy at his moms.  She has been more active in preventing him eating/drinking things he shouldn't. I think it finally  hit her when I got ill, if I died, she would have to face all the stuff I have been in the past half year.

Regardless, Lee is Lee.  I take it one day at a time and what comes or what don't, I do what I can and leave the rest in Gods' hands.  I am only human and can only do so much.  I want to thank each and everyone for being so supportive and a huge welcome to any new people that have joined since my little hiatus!  LOL

[boswife]

oh goodness.... i gotta tell you i was right near looken you up to see where the heck you've been.  So sorry to hear of your ills (so whats up with that?!) but sort of better news on your fella.  Love to hear more from you, and hope your feeling better each day...   

[Poppylicious]

He ATE AN ENTIRE HALF GALLON OF ICE CREAM IN 4 HOURS on sunday!

*gasp* ... Four hours?  I could have done that in one ...

 

Glad that things are looking better, although sorry to hear that you've been poorly. 

[karrye]

Poppy bad bad girl!!! LOL   

[karrye]

Hello board and the diehards that post and read here on a daily or semi daily, as the case maybe.

First of all, I am sorry I haven't posted in almost 3 years.  Those 3 years have been the hardest in my life.  Lee lost his left leg to the knee, almost 2 years ago and spent 33 days in and out of the ICU.  He relearned to walk amazing fast after his stump healed and when he was fitted with his first prosthesis.  He managed to get his final prosthesis nearly a year ahead of schedule.  A few months after his final prosthesis, he was rushed to the hospital and then sent to another hospital with Keto Acidosis.  He was in a chemical induced coma for 3 days and nights and then he was allowed to wake, with minor brain damage.  After this brush with death (9 days in the hospital), he was in and out of the hospital for many illnesses relating to his diabetes and kidney failure.

On November 17, 2013, Lee woke me complaining of full body numbness.  I called the ambulance and he was rushed to the local ER. I was waiting for some 60 minutes before I could see him, and when I did, I was told to leave the hospital because "I was upsetting the patient".  Lee was asking me about his stats on the various monitors and was telling him what was going on.  Apparently the nursing staff and the ER doctor didn't like that at all (his pulse rate was 269).  Me, his mother and our son-in-law (yes our daughter married in 2012); was asked to leave the premises, in which we did.  Around 3:30 AM, I got a call telling me they had air lifted Lee to the UK Hospital in Lexington, KY. Me and my mother-in-law (no sleep or eats), drove the nearly 2 hour journey to see him.  After much yelling and paperwork, we go to see Lee.  Diagnosis: Potassium overload. He was on full life support....

On November 20, 2013 at 1:25 PM, Leyman "Lee" Smallwood Jr. died at the age of 46.   

[MooseMom]

Oh, I am so sorry to hear this.  He suffered so much.  Thank you for returning to give us this sad news. 

Bless your heart.