Update

[RevMC]

Hello again everyone,

It's 4:00 am EST USA and figured it was time for another Louie Update.

It's been crazy lately.  Now he has high blood pressure on top of everything else.  The KS is still gone, t-cells are back over 200 and undetectable.  He's still on TPN, since October.  1600 ml a day for 16 hours flow rate.  No albumin for the past few months. 

Stopped Procrit for a few months, doc thought it was causing High Blood Pressure, starting on Procrit again.  He had to have another blood transfusion this past Wednesday, 3 units.  What a LOOOONNNNGGGG day.  Got there at 7am and we were finally done around 10:30pm  They also were going to see if he had fluid buildup in his abdomen area and take it out.  No fluid.  For some reason the doctor can't explain his ehmaglobin and hematicrit rates are low again.  It sems like every few months he needs another transfusion.

Doc put him on an anti-anxiety med, he started taking it on Saturday and now all hell has broken loose.  Because his belly is huge again he's had a hard time sleeping, now it's worse.  Which is why I'm writing this at now 4:15am.  Sunday morning he took his pills and then said he thinks he double dosed and not sure which one's.  An hour later he's trying to take pain pills again.  It was a struggle but I stopped him from doing that.  It was an all day struggle.

He's seeing things, thinks I put his pills in front of him and now took them away.  When I do give him his pills, 5 minutes later he's asking where his pills are.  He's dropping cigarettes left and right, burned many holes in his clothes, all over his mothers house on the rug and even her couch.  Doc said this is all side effects of the anti-anxiety drug so we stopped it.  Actually the only thing I gave him after Sunday morning was his HIV meds and pain pills as directed.  Plus his blood pressure meds of course.  Doc said the half life is 30 hours and he should be his self again.  Well it's been at least 40 hours right now and I'm stuggling with him all night.  One minue he's hot, the next he's cold, taking hs shirt off, leaving the shirt to hand between his pic line and the TPN.  He's gotten the tubing tangled on a few occassions.  His home health nurse came by Monday morning and he managed to pull a stitch that's holding the pic line in place so she taped it down for now.

This was VERY quick.  I asked the doctor's nurse if this was medicated related or dementia, she said it may be both.  Only time will tell in a few days if he get's better or not.  We'll have to take it one day at a time.

In the meanwhile it looks like I'm not going to be sleeping much.  His mom is 87 yrs old and Sunday took a tole on her.  She's bugging me to do something and yet there's nothing we can do right now except to keep an eye on him.  So needless to say she's been driving me up a wall.  So I took him home like I normally do on Monday afternoons.  Tried going to bed at 11:30pm, woke me up at 12:30am and it's been an ongoing battle since.

Have to call in to work again today, missed 2 out of 3 days last week, thank god they understand and would allow me to take the family leave if needed.  I'll definitely be calling the doc first thing when his office opens and begging him to get me some help.

We'll be changing home health agencies to one that will go from our home to his mom's home.  Right now the only one we have won't go to 2 places.  This one has a hospice part to them as well.  This was docs suggestion, he'll get the paperwork going.  That'll be a big help especially to do labs more regularly as well as to better monitor his condition.  Maybe it'll give me a break.

I'm glad I did a search on here about dementia.  It has helped me a lot and will probably prevent us from arguing.  I have Power of Attorney and Health Care surrogacy for him.  We argued about his meds and I told him if he took more than he should I'd have him put away for a few days because he's a danger to himself.  He told me if I did that he would never talk to me again and leave me.  The trailer we live in is in both names and because I didn't have my drivers license the Jeep is only in his name, though I am a co-signer on the loan.  It's paid off in September.  So he told me I had better not go anywhere in HIS vehicle.  Or to be careful in HIS vehicle.  I know he's not in his right mind so I'm learning to go with the flow.

He seems to be calming down a bit and not so aggitated.  It's now 4:43am and I'm going to try to get some sleep, hopefully he won't try to play the "Why won't you help me" game.  He keeps asking me to help him, I ask him what can I do for him to help and he keeps saying I don't know.  Then when I try to close my eyes for a cat nap, he's like "Honey your closing your eyes".

He's being very unreasonable and uncooperative right now.  I'm just afraid if I have to drive somewhere I'm going to fall asleep at the wheel.

Sorry this is a long post, just needing to vent for a bit.

[RapidRod]

Rev, you are doing all that you can possible do. You do need to get some sleep. I hope stopping the meds, does the trick for you. Just hang in there the new home healthcare will be there before you know it to relieve you of some of your stress. I was also going to put worries but I know that wouldn't work for you. Take care..

[BT65]

You are an angel.  You must have tons of patience.  Just remember to take care of you! 
Love is being sent your way!
Peace-
Betty

[Ann]

Hi Michael,

One thing you might want to get the doctors to investigate is the possibility of stroke. My mother-in-law was having small strokes that affected her behaviour instead of motor skills. She would slowly come out of it over a period of a few days.

Another thing that can cause mental confusion is bladder infection. Had this with the mother-in-law as well.

I'm sorry to hear you're having such a struggle right now and I hope Louie feels more himself very soon. Don't forget to take good care of yourself right now! I'll be sending some love, light and positive healing thoughts your way.

Hugs,
Ann
xxx

[AlanBama]

Michael, I am so sorry to hear this.

Stay strong my friend.   Prayers and blessings to you....

hugs,

Alan

[aztecan]

Hey Michael,

Wow, you have had your hands full. I would echo what the others said and add that you should investigate having someone take care of him for a day or some such to give you a break.

I am sending much positive energy your way.

HUGS,

Mark

[RevMC]

TY everyone for the kind words and support.  Just got home from my part-time day job.  Got at least 3 hours of sleep total and getting ready for a nap.  He's actually doing a bit better today and realized this morning that he's been forgetful, he's not sure why but he knows something is wrong.  Doc said that's a good sign that the meds are almost out of his system that he had a reaction to.

He's been more careful with his smoking as well.  But still nodds off mid sentence most of the time.  He told me he loves me and trusts me completely.  He says he understands that I'm trying to get him more help as well as help for his mom and I to help take care of him.  He even said we can definitely use the help, he's a handful at times.

We're switching home health agencies.  The new one has hospice, home health and private duty nurses.  This agency will be able to send someone out when his mom and I need a break and help keep an eye on him, plus if he gets worse the switch over to hospice would be an easier one.

PLUS, this agency works in both counties so when we're home during the week we can get help and when we're at his mom's house on the weekends, we can get help there as well.

WOW, what a relief.  I'll keep everyone updated.  I guess this is the bumpy road that lies ahead.

Well such is life!

[appleboy]

Rev,
Glad to hear that things are a bit better.  You are a strong person but don't forget yourself.  You have to remember every so often step away and take a deep breath.  Here is a huge hug! {RevMC}
AppleBoy

[Dachshund]

You are a good man Charlie Brown....hang in there.

Hal

[Queen Tokelove]

Rev,

I'm glad things are getting better for you. After things get settled with the new hospice maybe you can get some sleep. You definitely are a blessing and I'm sure Louie knows this.

[Iggy]

Rev,

I'm truly in awe of all that you do.  I hope the new home health agency allows you a little more breathing room.