Sunday, July 31, 2011

Where to start?

So much going on.

G is home. Finally.. Too many fights with Drs. to mention.
He will now have to go out of the VA system to get the surgery he needs for
a working fistula. Will have to sign up for Medicare part B which should not
be a problem, as well as some supplemental insurance.
G probably has a sinus infection, but the Dr. at the VA would not treat it, and leaves it up to his primary care Dr. which he will see ASAP.

M has an appointment on Monday with a primary care Dr. I made many phone calls the other day, and found out the hospice agency we are using will not take off fluids
under hospice care, but other agencies will, so either we will change to a different hospice agency, or take him off of hospice long enough to get a shunt put in to reciculate the fluids, which is what they did for my husband, when he had liver failure, due to colon cancer which went to the liver.

Anyway, I am glad G is home. He is sleeping which is what he needs. Not sure why medical staff does not understand the need for sleep..

I am doing OK. Not sure how, but just that this is my job, and I always had stressful jobs, so this is really not so bad.

My brother R is here until tomorrow, then back on Wed. He and M assembled some chairs I ordered, plus some other things. M enjoyed having something to do.

It's a crazy house, but guess we will all survive.

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Thursday, July 28, 2011

That is not an option!

Today, as I was driving to the VA, I got a phone call from the case manager.

Long story short, she was under the impression G had refused medical treatment, and if he did not want continue procedures, then perhaps they would not be aggressive, and essentially, put him on "palliative care" (ie; hospice).

Well, you can imagine my reaction. Essentially I told her the Drs. just needed to try harder and do a better job, and no, I know for a fact that G had not refused medically treatment. I got a call at 5:00 AM from the incompetent nurse, telling me the same thing, so I got up and drove to the VA. What had happened was this nurse has trouble getting an IV into G (G is hard to stick), and called in another nurse, but then he also was trying, and G told him they didn't need to be trying 2 IV sites, try just one first.

Anyway, we agreed to meet. So she sat and talked with me for a while, and then she and I went into G's room, and she talked to him, which made his blood pressure go up (which was actually good as his blood pressure was low)...anyway, we are to have another meeting tomorrow with all Drs. involved to be sure we all know the plan of action going forward.

Also, the Dr. filling in for the renal Dr. came in today. We talked about all the problems getting access, and he mentioned a couple of new things they have had success with, so perhaps tomorrow he can enlighten others as to what can be done.

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Not Good News on G

I will make this brief.

G had procedure yesterday to open of the vein connecting to the new fistula.
He was 7 hours on the table, surgeon put in stents, but the vein would hold for a while but then collapse.

They decided to keep G overnight as a precaution, and good thing. His blood pressure dropped dangerously low. They don't know why.

He ate breakfast this morning OK, but says when he sits up he gets lightheaded.
They will keep him again tonight.

Drs. are debating the next course of action to try and get a fistula going.

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Friday, July 22, 2011

M was swollen this morning

I didn't give M 2 aspirin last night, as he went to bed a little earlier
than I expected.

This morning he was swollen in the face. I gave him 2 aspirin around 6:00 AM,
so we shall see if that helps.

He seems to be doing OK. I guess he really doesn't realize when he gets swollen, until it starts to affect his vision. Good thing he doesn't have a mirror to
look at...I think that might freak him out.

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Update on G

Since I have been so busy with M, G has been left to fend for himself
in many aspects.

He had an appointment with the surgeon last Friday, to see if the new
fistula site is ready for use. Normally I would have gone with him,
but of course can't now that I am taking care of M.

G came home Friday after dialysis, a little after 3:00 and said "I screwed
up". I asked what happened and he said "The surgeon asked me how long
it had been since the surgery, and I told him 6 weeks, rather than
insisting he look it up....and I now realize it's been 6 weeks since
I saw the surgeon, not 6 weeks since the surgery".

Well, I went nuts. What kind of a *** Dr. asks a stroke victim a question
like that, especially when the VA has a good computer system.

I immediately phoned the VA to try and get G an appointment for next week, but the Dr. had put in orders for an appointment in 4 weeks (which is what he told
G, that by then the fistula should be ready...), but the appointment person
couldn't go against Drs. orders, so she sent a note to a nurse who was to call me, but as it was 3:30 on a Friday afternoon, no one did, because no one at this VA facility works after 3:30 on Friday ....believe me I have watched the exodus.

(I overhear people saying "I worked through lunch so I am taking off early...)

Anyway, when G goes to dialysis on Monday he tells them what happened, and they phone for the VA renal Dr. whom we like. She was on vacation until Tuesday, and then Wed. when G went back to dialysis they told him he had an ultrasound scheduled for 8:00 AM Thursday. G asked me to phone for transport (he always gets wheelchair transport, and good thing, with me being busy these days).
\
The company assured me they would pick him up at 7:30, but when I phoned at 7:09 the next morning to confirm, I was told "we might be a little bit late"....I am quite sure they forgot (good thing I called).

Anyway, after G left I laid down for a nap, and M didn't bother me, (amazing), so I woke up around 11:00 and wondered why G wasn't back, an ultrasound doesn't take that long. Finally a little after noon I phoned the VA and found out he was having a procedure.

Apparently they went in with a balloon to try and open up the vein, as there is not enough blood flow. G has narrow veins. He says they don't think it will work.

We haven't talk about what they will do next....

I have decided I will start giving G aspirin. Maybe it will be the wonder
drug for him also.

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Thursday, July 21, 2011

Hospice Dr. Instructions - what crap

Yesterday when the nurse came I told her about the aspirin.

I got a phone call from her later in the day, saying "Dr. so and so doesn't want
you to give M more than one full strength aspirin per day because of what it might do to his liver".

Now, I don't know if this Dr. is getting Tylenol and Aspirin confused, but from what I have read aspirin doesn't really cause a problem with the liver (generally the stomach), and there are some studies suggesting aspirin may even help those with liver problems.

So, I politely told the nurse "Oh, OK", but of course I will do whatever I damn well thinks works.

But, just to check it (I always like to), I didn't give M aspirin last night, and this morning his urine was a darker color.

The new problem which has started is coughing. A dry, unproductive cough, which is probably due to the heart valve problem.

I have started giving him a bit of morphine, along with the medicine which worked for agitation. They gave me some in a liquid form, so I can dispense a small dose, and he doesn't have to swallow a pill.

Things are a bit better organized. I finally got a computer with internet in the front room, along with a day bed, dining room table and a recliner.

Today M ordered a lift recliner as the recliners I have are old (cast offs from my Mom), and sometimes one gets "stuck". He ordered it from overstock.com, so it
should be delivered to our door in a week or so. The nurse suggested that he might sleep better in a recliner and in a bed, as quite often people with heart problems need to be more elevated.

My problem now is keeping him entertained. He isn't really reading books, sometimes does crossword puzzles, has become bored with TV, and apparently even the Internet.

It's way to hot to even think about going outside, so all of us have a bit of "cabin fever".

At least I managed to get some sleep this morning, while G was at the Drs., M left me alone (amazing). I don't think I have had 4 straight hours of sleep since M came home.

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Wednesday, July 20, 2011

Aspirin is a miracle drug

Monday evening M was so swollen, he had fluid build up into his neck and head, even one eye was almost swollen shut.

I decided that giving him aspirin couldn't make him any worse.

When my Mother had edema in her right arm about a month before she died,
I gave her 2 full strength aspirin every night, which kept the swelling
down, completely. I don't even know why I tried it, other than Mom
said if she couldn't sleep she would take a couple of aspirin, so
I figured it couldn't hurt. The results were staggering.

So once again, when it looks as if all hope is lost, I go for the
aspirin. And, once again, I am shocked that it is working.

Anyway, Monday night I decide to give M 2 full strength aspirin.
Tuesday morning he gets up and says he wants something to eat,
and when I ask "what?" to my surprise he says "how about some
scrambled eggs?". Remember, he had been eating only liquids for
4 days.

So yesterday he ate solid foods, had a good b/m, and the color of
his urine has changed from dark (indicating a problem wit the liver)
to normal color. This is the first time I have seen it a normal
color since he began collecting it, even before he went into
the hospital.

I don't know what happened. Maybe there was a blockage that the
aspirin cleared out. Maybe the aspirin had an affect on his heart.
I am giving him 4 full strength aspirin a day.

So far it appears to have taken him from the brink of death. I don't know
if he will start recovering, or only be stable at the point he is.

We shall see.

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Monday, July 18, 2011

M Overmedicated...by me!

I tried the medicine from the comfort kit, I think it is something like Thorazine, I haven't even tried to look it up.

I gave him one pill around 9:00 AM yesterday. The nurse said I could give 2 within 6 hours (the dosing is 1 every 6 hours), so as M was still rather wound up around noon, I gave him another one.

Finally around 2:30 he could barely keep his eyes open, was starting to slur his words. I told him to go to sleep until 5:00, and I would fix some tomato soup for him.

Oh, did I mention he had trouble swallowing "thin liquids"? This is the same problem my mother had, a couple of weeks before she died. If the liquid is too thin, it goes into the lungs instead of the stomach. I bought some stuff called "thick it", to thicken up liquids, but M didn't like it.

So he is getting by on ice cream, vegetable juice, and then tomato soup.

Anyway, at 3:30 M was still not asleep, so I gave him one of the pills for nausea. He finally dozed off, but at 4:55 M rang the bell wanting to eat.

My other brother R was here, so I suggested he take M into the living room in the wheelchair, which he did. M managed to eat, with his eyes only open a slit.
Then he sat in the recliner in the living room. I changed his socks, put on some lotion. He was making some noises. I was trying to decide if those were noises of sleep, pleasure, or if he was dying, as his head was nodding.

Finally M decided he would go to bed. I asked R to take him, but I didn't stand there and help (as I should have), and M ended up on the floor between the wheelchair and the recliner. At least R is big and strong and could pick up M, but M has some bruises on his back.

Anyway, M was so drugged I was sure he would sleep well. Not so. He wanted something about every hour until 10:00, then about every 2 hours until 4:00, then up again at 6:00, and 8:00, and 10:00.

Somewhere around 8:00 he was complaining of pain in his leg, so I gave him some morphine. Oh, he did complain of pain around 1:00 AM, but it turned out the strap which holds his catheter line to his leg had fallen down, so the line was pulling on his penis (I would be in pain also!).

Oh, and the catheter bag is leaking, so we have to set it in a trash can. They should bring a new one today.

Home health aide should arrive any minute, and nurse and social worker later today.

I told R he could come around noon.

At least, M now appears to be resting, but he sure feels horrible.

Yesterday he said "God, please take me", so I guess when the end comes, he will actually be glad.

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Sunday, July 17, 2011

Ativan doesn't work

After the problems with morphine not working, the next nurse suggested
ativan, every 4 hours, to help with anxiety.

Well, I did it yesterday, and it didn't work. It actually made M
more anxious, I guess.

He was up every 2 hours last night, and at 4:30 AM said he wanted to
go sit in the bathtub. I told him no, and actually unplugged
the wireless door bell.

About 15 minutes later I heard him in the bathroom. He had managed
to get off his clothes (which isn't easy, as he has a Foley catheter
which one must maneuver through the pant leg). I helped him get
on the shower chair, and then left him.

Apparently he not only did this, he also went into the kitchen to get a
Sprite out of the refrigerator.

And, at 9:00 AM I got a phone call on my cell phone. It was the hospice
agency. Apparently M had managed to call them, getting the phone number
off one of the medicine bottles. They couldn't really understand him,
but I guess they got his name so they could call me. M wanted to know when
the nurse would be here. He wanted them to give them medicine to make
him throw up, to clear out his digestive tract.

After speaking with the nurse on the phone, I gave him a different anxiety med out
of the "comfort care" kit, as well as the pill for nausea.

The nurse came about 10:00. She took his vitals. B/P was 120 over 70, with
a pulse of 112. LOL.

Oh, and did I mention he walked into the bathroom without his oxygen?

He is started to "wind down" finally 3 hours after the meds. I can give more if
they don't work. He is like a child, fighting sleep. He is so tired he is slurring his words, yet he wants a drink, he wants ice cream, etc.

Friday, July 15, 2011

Morphine has opposite affect

Our family has weird body chemistry. Sleeping pills kept my Mother awake,
and now I have figured out the Morphine makes M's heart race, instead
of slowing it down.

When the nurse was here yesterday, she thought M had some difficulty
breathing when he was talking, so she decided he needed some Morphine,
which is to help with breathing.

So, later in the evening, M said he was having trouble breathing, and
wanted more of the stuff the nurse suggested, so I gave him some (it's a
very small dosage).

Last night he kept saying he had trouble getting oxygen, wanted me
to call 911 to bring a ventilator. Then he decided to lay down
on the floor in front of the window a/c so he could get more
oxygen from the a/c (despite the fact he is on 2 liters of oxygen).

Finally this morning, when I realized he had not slept most of the
night, he suggested I take his blood pressure. His blood pressure
was fine, but his pulse was 120.

No wonder he thought he couldn't breath.

So, no more morphine. I called the nurse this morning, and
she suggested I start him on a regular dosage of Ativan, so
we will see if that helps with his anxiety, which should
also help him to breath.

Now, if I can just get him to eat.

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Thursday, July 14, 2011

M is about the same

M is holding his own. He has gotten fluid build up again, but I think it
has stabilized a bit.

He makes a point of walking around, although he didn't think he should go
outside since it is so hot. At least he recognizes that.

Yesterday he ate a little better. I was hungry for pizza, and thought he
would eat some, so I picked up a pizza and he ate one piece.

M has also been eating ice cream, which is a good source of calories,
and protein.



G is doing OK. He has an appointment with the surgeon on Friday to see if
his fistula can be used. I certainly hope so.

The good news is he is getting adequate dialysis with his catheter, and the
recent tests results all came back improved, so think we are on the right
path with diet and pills.

I am doing better. My brother R comes back this afternoon, and I have a long
"honey do" list which we will start on. Would be nice if we got a break in
the weather, but the forecast is for 102 the rest of the week.

Just hope we don't lose our electricity.

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Monday, July 11, 2011

M in declining

Well, guess I was a bit too optimistic.

M was nauseous this morning, and hasn't eaten much today. I just bought some ice cream, so hope he will eat some strawberries and ice cream.

We played about 1/2 a game of Scrabble this afternoon.

I knew 2 days ago he was in decline, when he didn't cut out the crossword puzzle from the paper. And, I had to finish writing a letter for him, as he didn't have the strength.

He is in denial about the future. He keeps saying "I hope I get to feeling better soon".

I don't say anything.

I think denial is good.

It also helps me cope.

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Friday, July 8, 2011

Each Day Gets Better

M continues to improve. Today he is even walking around without his walker.

We are trying to get a 220 outlet to work. I bought a window a/c for the front room, but found out too late it was a 220, as it is for both a/c and heat.

M use to do electrical stuff. In fact, he wired in 2 new outlets for me in March, climbing up into the attic and everything, at the same time as he was starting to have heart problems. As I mentioned before, he just doesn't listen to his body, and with his mania and OCD, he just can't not do something he has his mind set on.

And now, getting this 220 outlet to work is like that. Just now he said he wanted to go into the basement to look at the wiring. I told him no, he couldn't. The look on his face was one of confusion and maybe hurt. This is what concerns me about him living by himself, his judgement is very poor.

But, he is getting more independent. I set up a coffee maker in his bedroom, along with a small cooler so in the morning he can get his own breakfast.

And my brother R is back in town to help out. That takes a lot of stress off of me.

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Tuesday, July 5, 2011

Short Term Memory Problems

I noticed M's short term memory is not good. When I mentioned to him yesterday about him not being able to walk the last day he was at the inpatient hospice, he said he didn't remember.

And this morning, he asked me to find out when the home health aide would be here. She was here yesterday, and she is scheduled to be her on Mon/Wed/Fri.
Apparently memory problems is one of the results of liver failure.

But other than that, he is doing rather well.

He is walking more on his own. He even managed to go outside and get the newspaper this morning (he has a long oxygen line). If this keeps up, he will be able to start
getting things out of the kitchen for himself, which would be great for me.

Last evening I had him come into the family room to eat dinner with us. He really looked awful, that horrible yellow jaundice color one gets when the liver is not working correctly.

But, this morning he seems better. Maybe just walking around, and drinking more milk, has helped.

Every day is an adventure.

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Monday, July 4, 2011

Settling In

Things are calming down.

M was able to use his bedside commode on his own this morning. He ate breakfast, and the home health came about 10:30, got him into the tub, on a shower chair, and gave him a shower/bath, and even trimmed his hair.

This afternoon I could tell he was getting bored, so I went to the basement and brought up some of my Mother's old photo albums and I found a scrap book I don't think we ever really saw before she died. So M is enjoying looking through those.

He also wanted pencils, a high lighter, and I suggested candy, so went to the store to get those.

M says he has a pain in his chest, so I gave him 2 aspirin, and later he said he still had it, so I gave him a little bit of morphine. The nurse loaded up a bunch of syringes with a low dose of morphine, so I don't have to try and figure out the dose.

I just took his blood pressure, which is 80 over 65, but his pulse is 107, so his heart is racing. Of course, his heart is probably working harder because it's not working well. I suggested M try to do some deep breathing, and offered to put on some music. I don't know what else to do, and he is not really in a lot pain.

G had dialysis today. He came back around 3:00, ate a lot of the pot roast dinner, strawberries and sugar free cool whip. He says he has lost weight, which he needed to, but very seldom does he lose his appetite.

Except for cooking, dishes, and answering call buttons, I am staying inside taking it easy. It was to hit 101 today.

I might even try to read a book.

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Sunday, July 3, 2011

Over Medicated

M was over medicated.

Huh, well, I am not surprised.

M is a handful. He is bi-polar with OCD, but never officially diagnosed because he always thought he did OK.

Anyway, I guess the staff at hospice got tired of him wanting something every 10 minutes, and started medicating him with sleeping aides and maybe morphine.

When he called me Thursday morning I thought he had a stroke, as he was slurring his words. When I got to the hospice room his eyes were half open, and they said he was too weak to go to the shower, they gave him a bed bath, and he was in adult diapers. So, no wonder I was in shock and so upset thinking he would die soon, or at the least, be bed bound.

After 2 days at my place with no sleep aides, only Antivan to help with his bi-polar anxiety, he is now getting up on his own to use the bed side commode. We did buy some pull-up diapers, just in case.

And today, my brother R took M over to M's house to use the computer (he needs to get the IP address so he can notify the bank he is moving the computer). He almost managed to walk up the 4 steps into his house...the neighbor came over to help out.

There is still a problem with M losing his appetite. Today he didn't feel like eating. I think maybe the food isn't moving through his digestive track, so I gave him some of the Senna which hospice prescribed. M is trying to eat dinner now, so we shall see.

He has agreed to contact the mental health clinic to ask for treatment. We will call on Tuesday. When his heart races he doesn't even know that's not normal.

R left today, he will be back on Thursday along with his tools, so he can help work on my house and M's.

M said he didn't want to go out to watch the fireworks, so that will be easier on all of us.

G is about the same. Last evening I sat with him and watched a movie, Malcolm X, which we enjoyed. I realize he is getting shortchanged in all of this, but now things are calming down so I hope he and I can spend more time together.

I am doing better. I have certainly learned I can't do it all, and have reached out to many of my friends and family for help and support. It's nice they have been there for me.

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Friday, July 1, 2011

M is home

M is at my house. It's not his home, but I suspect it will be until he dies.

The people at the hospice agency told me he might be able to live in his own
house with some assistance, but I don't think they realize how bad off he is.

Maybe they figured it out when he was so weak yesterday they had to give him a bed bath...I don't know.

I paid to have him brought here in a wheelchair van. The staff thought I could take him in my car LOL. I told them it might give me a heart attack, especially as it was to be 105 degrees yesterday, and turned out to hit 107.

Anyway, M got here yesterday. He is on oxygen and has a foley catheter. He is also in adult diapers.

That's the other thing, the hospital and hospice people weren't paying attention to poop. I asked them 2 days ago to give him some Miralax, but it never happened, and then yesterday morning when reviewing the chart with the nurse, she realized he had not had a BM for 4 days....
Well, then they got aggressive, gave him and enema and put him on stool softeners.

When M was in the hospital they didn't do anything about his lack of eating, or his lack of pooping. It's just amazing.

M is eating well now. He has a small dinner, and then a bowl of strawberries with ice cream, cool whip and almonds, and he ate it all.

Under hospice care I will get home health aide 3 days a week, nurse once a week, social worker, chaplain, and this agency has volunteers.
It will be great to have volunteers to come sit with M, and talk with him, etc.
I get so torn between all the things I need to do, and just spending time with him.

I am also asking my brother R who is here now, to stay through the 4th. If M is able, I would like R to take him to watch fireworks. M always loved fireworks, and I fear this will be his last 4th of July.

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