Tuesday, August 30, 2011

Getting rid of more stuff....


Today I loaded up some clothes (not M's, just stuff I had), some food of
M's, some medical supplies (some things that nurses left behind), and took
them to the health clinic where M went, as they also have a food pantry
and clothes closet.

I chatted with the receptionist. She asked me some questions about M, about
his OCD. She said she remembered him as being so nice to her, bringing
her Valentine's cards, taking her picture and then giving her copies.

Am sure M would have like to have dated this woman. She is very pretty,
and nice.

When I mentioned I was on a mission to get rid of stuff, that there was
no use keeping things, gathering dust, when others could be using and
appreciating these items.

She said "I hope you keep a few things to remember him by", to which I
replied "you always keep the memories in your head". And then I started
to tear up, and had to change the conversation.


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Monday, August 29, 2011

Mom's last sibling


I guess I haven't mentioned the problems of my mother's remaining sister.

She is 81 years old, the youngest and only living of 9 children.

She and my uncle came to my mom's funeral, her daughter driving them (about a 6 hour drive).

About 2 months ago we heard she had congestive heart failure, and was sent to a
rehab place. After collapsing, they thought she had an electrolyte imbalance, off to another hospital. Then they thought there was an infection to the leads of her
pacemaker, off to a bigger hospital, where they discovered a blood clot in
her heart. They did surgery, she survived, and several days ago I spoke with
her on the phone. She sounded pretty good.

She is now in a sort of rehab hospital. Yesterday her daughter advised she
is not doing as well, she isn't really eating, and is having some confusion.

Of course when you are 81 and have been through all that, it is very difficult
to recover. But after speaking with her I really thought she would improve.
Now I don't know.

It's really upsetting because she had been so healthy. Seeing her I thought
"well, maybe I have a chance to make it to 85 in good health" (although none
of my mother's other siblings did...). But now I guess not. Everyone on that
side of the family has heart issues, and weird chemical problems which
affect the heart.

It makes me very sad. And sad that I did not go visit her after mom died.
Now I fear my Aunt is dying, and I have missed that chance. Stupid, stupid.

My brother M visited this aunt. As soon as he got a car, he was on the road.
I remember I insisted he write out a will before he went, because he was such a bad driver.

Well, that's life. And death. But I still don't want to accept it, or get
use to it.

Fight, fight, fight.

Which reminds me of the Dylan Thomas poem

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.





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Sunday, August 28, 2011

Getting rid of stuff


Thinking about moving (and dying) has prompted me to get rid of stuff, again.

I ended up with so much of my mother's things. A product of the depression,
she very rarely got rid of things. She loved to sew, and I am pretty sure
she never got rid of a sewing pattern. I have 5 boxes full.

Luckily a friend of a friend sews, and she is about the same size as most of
the patterns my mom had. I realized when I sorted through the patterns that
mom would always buy the pattern in her size, even if it was for me, and then
she would just alter it accordingly. There was one pattern in particular,
a dress she made for me when I was about 17. I was probably a size 8 or 10,
and the pattern is a size 18. That's when I figured out her system.
She was always so frugal.

Anyway, my friends are to come today and we will have fun looking
through all these patterns, many older than we. It will be nice
to find a home for them. Someone will get some good
out of these patterns, rather than them collecting dust and taking
up space.

Must do more of this.

Friday, August 26, 2011

Reading old posts

I started reading old posts in this blog. I really had to laugh when
I read this one, because "Earl" was actually my brother "M"

Mom thinks she can drive
A few months after my mom's stroke, she thought maybe she would be able to drive the car again.

I told her I didn't think it would be very safe, for her, or the other people on the road.

Her retort was "I can probably drive as good as Earl*" (one of my brothers), who is a very bad driver.

I laughed, as I could not dispute this statement.


*name changed to protect the guilty


When I start feeling bad about M dying so young, I have to remind myself it
is a miracle he lived so long.

He was a horrible driver. One time he rolled a car because he was changing
the radio station. He was on a dirt road, must have looked down, went onto
the soft shoulder or sand and ended up rolling the car.

When he was 14 he stepped off a railroad bridge (that's another long story)
Cracked 3 vertebrae, came only a few feet from a pile of rocks which would
have killed him.

Apparently had a car fall on him when he was working underneath it. Neighbors
pulled it off of him.

And who knows what else. He never considered the consequences of his action
to his health and well being.

So, in hindsight, making it to 62 was a miracle.

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Planning for the future


Well, another wake up call for me, to live life to the fullest.

I guess I must be a slow learner. My husband died 21 years ago,
my dad 10, my mom almost 2, G's mom 1 year ago, and now my brother,
2 weeks ago. Of course add to that friends and co-workers over the
years.

I always remember a guy I use to work with. He was literally counting
the days to retirement...crossing the days off his calendar and keeping
a countdown. I think he had about 1 1/2 years to go. I can't remember
when he was going to retire, maybe at 55, or maybe a bit older.
He had lots of money saved up, and he hated his job.

Well, spring comes, he goes out to mow the grass, and dies of a heart
attack. His family gets all the money, and he never enjoyed life.

I was able to work on my "bucket list" after I quit working, 9 years
ago. Actually managed to get all the things done I wanted to, and then started thinking of more.

Then, it was time to start care giving. That has been my life for the last 4
years or so.

But even though G still has some health issues, we are planning on what we
want to do. The weather has been awful here this last summer, and last winter.
G lived in San Francisco before, so we are thinking about trying to live there
for a year. I realize now the reason I have been reluctant to move from
here was because of my brother M. I knew he really needed someone around
to help him out. And I was right. But now he is no longer a reason to stay
here.

Hopefully G will get the surgery he needs to be able to do peritoneal dialysis,
which means he can do it himself. He will do it every day, and it mimics
the kidney function better than taking out the blood. He sees the surgeon
Sept. 1, for the first consult.

Of course, there is always the risk the surgery won't be a success, or something will
go wrong later, but that is possible with anything in life. We could also
be in a car accident, or be in an Amtrak train which gets hit by a truck.


I always function better with a deadline. So, this will force me to get the
houses fixed up and hopefully rented. We can put all our stuff in storage
in the attic of the house I just bought.

We will get on a wait list for a handicap accessible apartment in San Francisco.
That will take some time, but I don't think I will be ready to move before
6 months from now, probably more like a year.

Lots to do. This will give me a reason to get rid of "stuff". I have
way too much stuff, and I really don't know how that happened considering
8 years ago my belongings were what I could fit in my car.

I've got guys here today putting in a new window in the bathroom. The old
one extended over the bathtub, so I could not do a proper handicap shower.
M had been nagging me to get it fixed. I thought he would be able to use it,
but obviously not. At least his nagging has forced me to get off the dime
and do something about the bathroom. I guess M is looking down from
above and saying "it's about time".

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Sometimes it is sureal


My brother's death was so much different than our mom's. Our mom was
an invalid for 2 1/2 years after a series of strokes, and she was
bedridden for the last 6 months.

When at the end she had trouble catching her breath, it was still a
week before she died. The hospice nurse thought she would die in
a few hours, but she hung on for over a week.

With my brother it was so different. He would have been confined to his
bed (which would have been horrible), but he only had to suffer for about 14
hours being stuck in bed. He went so fast.

The difference between being alive and being dead is just one breath.
The next breath just doesn't come.

I guess, just the opposite of when we are born. It's that first breath
that makes us alive. That swat on the bottom to get us to fill our lungs
with air.

One of the things my brother said to me was "If you are born, you die".

We never think about this. We never want to think about this.

At least I don't.



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Tuesday, August 23, 2011

Went inside M's house


I realized I had not been inside M's house since the computer was moved to my house.

That has been a month ago, I guess.

I went over to his house to pick up a library book he checked out on my card,
it was overdue. It was all about estate planning, "planning for the unexpected",
and he had checked it out when I asked him to make out a DPOA (Durable Power of Attorney) for medical decisions, so I could have access to information, and
discuss things with Drs. as needed.

We did this before his appointment with the cardiologist. That was in mid-June. Never in my wildest imagination did I expect him to die. Well, someday, sure,
but not now.

I have learned that sometimes, for our own sanity, we just cannot dwell on
the one who died. It's too hard, it makes one stay in a hole which then
becomes harder and harder to crawl out of.

Just like all the stuff about 9/11. I worked in One World Trade Center, 77th floor. Not on 9/11, but many years before. I knew people who worked in that
building. Now they are asking people "what did you keep from that day?",
and I am quite sure I can say "nothing". I have learned that in order to
move on, sometimes you really have to eradicate the past. Dwelling on it
is like picking at a scab...it is never allowed to heal.

We never forget. It's somewhere in the back of your mind. It comes
when we call for it.

But if you keep it in the forefront, it's there all the time. In your
nightmares, when you think you see something out of the corner of your
eye, when you think you saw them in the car.

It's too hard.

It's not that we don't care. We will never quit caring.

It's about self preservation, about learning how to cope, how
to go on living.

Monday, August 22, 2011

Sleep Study


G had the sleep study. They put somewhere around 30 probes on him. I said
it looked like they had wired him up for a bomb.

He didn't have any problem sleeping. I on the other had did. They asked that
someone stay with him in case he needed assistance walking to the bathroom.
They said they would give me a bed, but all they gave me was a recliner.
I can't sleep in recliners.

So I got about 2 hours of sleep. Came home and I slept for another 4 hours.
G has the ability to wake up and immediately go back to sleep. It takes
me forever to go to sleep, and if I wake up, forever to get back to sleep.

I finally got through to someone at the VA to cancel the surgery they had
G schedule for Thursday. I told them we wanted to reschedule, which
I don't really, but am not going to tell them that.

Not much else going on. I need to go to the clinic today and drop off
the various envelopes people left at the memorial service.

Also, I am sending my other brother, R, to visit our Aunt and Uncle (the one's
I saw on Friday). I will give them M's cell phone, as it a Trac phone,
and my aunt and uncle don't have any cell phone, so I told them they should
have this one to keep in the car in case of emergency. I will also
send over some food, as my brother will get there about lunch time,
and it's not right that they have to always feed their nephew's. It's
time my generation took over that bit.

So I have meatloaf, carrots and potatoes in the oven. Made some brownies
last night.

Gotta run.

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Saturday, August 20, 2011

Visiting Relatives


My father's last remaining sibling, his sister who is 85, could not attend
the memorial service. Her children would have driven them (my uncle is
doing well), but my Aunt had fallen just 3 days before.
She isn't walking well and was concerned she would fall.

As my oldest brother was in town and didn't have to rush home,
I decided we should go visit our Aunt and Uncle on Friday.
We called them about 11:00, and got there shortly after 12:00.
My brother and uncle went out to pick up some lunch for all
of us, and my brother and I stayed until around 2:00.

We had a very nice visit, of course catching up on the health
issues, but also their children, their farm, and their current
life. They moved into town only a couple of years ago, having
lived on farms their entire lives.

My uncle was at Omaha Beach, D-Day plus 1. He lost part of a finger
when it got jammed between two the landing crafts.

I remember after I made a trip to Germany, was discussing it
with him during a family reunion, and he said "I always
wanted to go back to Czechoslovakia, (where he was at the
end of WWII), as I thought it was the most beautiful country".

When I recounted this to one of his daughters she replied
"I didn't know my dad was in Czechoslovakia".

As is with many veterans, they never discussed their war
experience. I understand my uncle has now written down
some of his memories, doing so in a class they offer at
the retirement center where they live.

When we left, my uncle followed us out to the porch, and
with tears in his eyes said "Thank you so much for coming,
you have no idea how much this meant to us".

Too many times we rush through life, not taking the time
to visit people, or keep in touch. I keep trying to do
better, especially thinking of those who are now older,
and are the last of their generation. It starts to get
lonely, and some day I will be in their shoes.

Friday, August 19, 2011

Sleep Study for G


Tomorrow night G will got for a sleep study. I have noticed he has sleep
apnea, and he finally admitted he can't sleep on his back, probably because
he can't breathe.

He has to check in by 9:15 PM, and will be done in the morning between 5:30
and 6:30. Since he might need some help getting into the bed, or if he
has to go to the bathroom, they asked if someone could stay, so I will
be sleeping there also. Might as well if I have to get up at such
an awful hour to go pick him up.

Last Wed. we had blood drawn to check his hemoglobin level, which is when
we found out from the primary care nurse, that he should have received
2 units of blood when he was in the hospital a few weeks ago, but they
only gave him 1. That explains why he is still feeling tired. His hemoglobin
level is coming back up, but it will take some time.

He has lots going on the next few weeks, will see the surgeon on Sept. 1
to see what he can do...this is NOT the VA surgeon.

G went to the memorial service with me, and afterwards he and my 2
brothers went to dinner at a nice restaurant, and he walked all the way from the car parked at the curb, 2 spaces down, into the restaurant. Of course he had to hold onto my hand, and, well, the side of the building, but he did it.

And, so life goes. I am reminded to enjoy each day, each outing.

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Wednesday, August 17, 2011

Getting Things in Order


The Memorial Service for M is almost prepared. I have written most of the eulogy,
which my brother will read. There is no way I can stand up and do it.

I think it will be a very nice service. Not too long. I'm shooting for 1/2 hour, and this is what I told the minister, so I hope he won't have a long sermon.

I remember I took my Mom to a funeral one time (the last 10 years of her life that was what she did for fun LOL).
The funeral was 1 1/2 hours long. I know the family was in great pain, but, they
were putting all of us in pain.

This afternoon I closed on a house I bought. Yes, I am just a little bit crazy.
I went to an auction about 1 1/2 blocks from here, and there were no real bidders,
so I got the house for a really good price. As I will now own my brother's house,
I might as well get into the landlord business. Closing was easy. I will
have my brother R, who will be here through the weekend, start cleaning it up, pulling down some vines growing on a tree, etc.

As for G. He had not been feeling well. I called the primary Dr. at the VA, we did a blood sample today, and his hemoglobin level came back over 8, so that is good.
They give him epogen (I think that's how it's spelled) during dialysis, which improves his red blood count, but it takes weeks. They said their target on
the hemoglobin level is 11, so he has a ways to go.

Tomorrow he has a couple of appointments at the VA, and I need to remember to
get the form filled out for medical records to be sent to the surgeon he will
see on Sept. 1.

He will also have a sleep study done on Saturday night. He says he can't really sleep when he is on his back (well, I think he can't breathe when he is on his back), so hope to figure out what's going on.

I am doing much better. I picked up M's ashes today from the mortuary, and paid the bill. I will get monies from my sister whenever she can get the savings bond cashed. I won't get the death certificate for several weeks, and she needs it to cash the bond.

Oh, I also stopped by the health clinic which we have designated for the memorial contributions. This is where M went for his health needs, as well as eating lunch. Had a nice chat with the director, picked up some envelopes
for donations, as well as brochures. They are doing great work, and have plans to
open another location in an under served part of town. They also have plans to
open something to do with cancer hospice...I didn't really understand what she
was saying, but will follow-up later. I think this is really a worthy charity.

I will have some flowers at the service. One of my Mom's friends kind of guilted me into it...but I have decided I will buy a couple dozen roses and then give them
to the 2 ladies who were especially nice to M when he was really down and out.

Nicer to M than his family was, me included, I am so sorry to say.

At least I had a chance to be kind to him later in his life.


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Monday, August 15, 2011

Update on G

For all of you going "enough already, what's up with G?"

Oh, too much to even tell.

Here's the short version. I have made an appointment with the
best surgeon in town to do the special surgery G needs. He will have surgery to allow for peritoneal dialysis, which is done by yourself, at home. But, you need a catheter placed in your stomach area, and then you put in fluids, leave them for some time, and take them out.

They say it mimics the kidneys the best.

But G tried to have the surgery done for this in March 2010, but he had too
much scar tissue in his abdomen from previous exploratory surgery.
However, apparently one can go in from the side, around the organs, to
insert the catheter. It is much more complicated, and a real surgery, not
just outpatient.

The horrible VA surgeon claimed he could do this surgery, so
we couldn't get a referral from the VA, so G will have to pay for the
surgery himself. But, hopefully the surgery will be successful,
and G has Medicare part A, so he will just have to pay for the
surgeon and the anesthesiologist.

But, the first consult appointment I could get is Sept. 1.

That's OK. G really needs to have a sleep study done first, which I just
got scheduled for this Sat. G says he can't sleep on his back, and when he
is in ICU he must, so it's a big problem. G went for 3 days without really sleeping after that last botched surgery, and he was in bad shape. Of course that was
when he lost all that blood and they didn't give him a transfusion.

G's dialysis catheter is running OK, so I think it will work for another month, fingers crossed. He was also told by the dialysis center that another catheter
could be placed in that same site, if this one fails....but as G said "they probably are just saying that to keep me happy"....

Now that my brother is no longer here (may he rest in peace), the house is quiet, G and I can enjoy time together, and needless to say, the stress level is much lower.

Stress is a horrible thing.

Sleep is good.

Think I will take a nap.


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I have fought the good fight

My sister asked for a bible verse for the funeral folder. She is in charge
of making them.

She offered to do it. I think she has always viewed her role as the one
to handle funeral arrangement and the service planning. I know she is a
bit hurt that I have taken over this duty for M's service, but that is
just too bad. The service will be done the way I think M would want,
and if my sister does it, it would be the way she wants it.

Anyway, this is the bible verse I came up with.



2 Timothy 4:7-8
I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing. (NIV)




I think it's appropriate. Several weeks before M died he said to me, more than
once "I just want to go to heaven".

And now he is there.

Of course, we all want to know what happens when we die. That has been
the question for all the ages.

It's nice to not be scared of dying. M said to me "if you are born, you die".

We must all remember this.

And live our lives accordingly.

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Saturday, August 13, 2011

Notes to the minister


The associate minister at the church my parents attended will do
the memorial service. The senior minister has taken another posting
and will be moving the day of the service.

This is what I e-mailed to the associate minister, to give him some
background on M. He only met M once, in the hospital.

As for the service, if you would like to do a short sermon, it would be nice
if there could be a theme of compassion towards others.

M was bi-polar with OCD, and because of his age such things were not diagnosed
when he was growing up, and there were no drugs available.

Because of his mental problems, he was (as the ICU nurse said to me),
"a handful". He was very difficult to be around, did not have
many friends, and would tend to end relationships when something
went wrong or he felt offended.

When any of us would complain about M, our Mother would wisely
say "that's just the way he is".
M just couldn't change, no more than
someone can change the color of their skin. When he would do
something he shouldn't, I would say "you shouldn't have done that", and
he would say "I know". For example, the day I took him to the
emergency room, when he was actually in heart failure, that
morning he just had to get out and plug up a hole in the eave of
the house to keep birds out. He should not have done it,
he knew he should not have done it, but he just couldn't keep
from doing it because it bothered him so much.

Because he was 8 years older than me it took a long time to readjust
our roles from older brother/younger sister, to older brother
who needs help and younger sister he would trust. But, I was
not always so compassionate. When I was younger I was
embarrassed to have him around (well, honestly that never changed,
I just learned to accept him as he was).

It was only after our mother
had a stroke that I took a more active role in trying to help him.

And he helped me. I took care of our Mom 24/7 for 2 1/2 years.
Every week he would ride his bike 4 miles
one way to stay with my Mom to give me an afternoon off.

When I jammed the garbage disposal, he was the one I could
count on to fix it. He planted the garden for me, and was always
around to help out if I needed. Even in the bitter winter he would
ride the bus and walk 6 blocks to Mom's house, to give me
time off.

I hope this gives you something to go on.


I am asking that instead of flowers, contributions be
made to the clinic where M received care and also often
ate at their free dinners. I didn't know about their
free dinners for a long time, but recently I figured
out he must have eaten there several times a week,
if not every day. They certainly are deserving.
It's run by the Catholic Church, which M use to say bad
things about, but am pretty sure he readjusted his thinking,
based on how nice they were to him.

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Friday, August 12, 2011

Missing M


M is gone. I no longer have to worry about him ringing me for something.

In some way it is a relief, because it was so tiring. But of course, I
miss him dearly.

We are making plans for the memorial service. I wrote the obit today.
I got the date wrong, but managed to correct it in time for publication.

It's still so difficult to believe he is gone. I finally forced myself
to go into his room and strip the bed. I need to remove all traces
of things I needed for his care giving. The lotions, the depends, the
baby wipes.

I will move the big screen TV to the family room. M had lost interest
in watching TV several weeks ago.

But it is still so hard to accept that he is gone. The house is quiet.
It's amazing how one gets use to having someone else in the house.

I turned the light on in his room, but I keep thinking he will be
ringing for me at any moment.

I did the best I could. I was the good sister. I still just feel
so bad he got short changed in life.

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Thursday, August 11, 2011

M Died


M died this morning about 5:00 AM.

I had a bed set up in the living room outside M's door, as I had planned to sleep outside his room until he died. I just didn't expect him to die so quickly.

I think what happened is because M was flat in bed, fluids built up in his lungs. We had told would eventually happen. Also, because he wasn't moving around all the time, and on the pain pills, his heart probably didn't pump as well.

About 1:30 this morning I heard M coughing, so I got up, put another pillow under his head, and gave him the recommended dose of morphine, which was very small. He coughed a little more, but then settled into his normal night time sounds.

Probably even in my sleep I was listening to him, because around 5:00 AM I didn't really hear anything, so I finally got out of bed about 5:15 to check on him, and realized he was already gone.

I asked my b/f to get up and dressed to be with me, waited until 6:00 to call the hospice agency. Of course they have to come and pronounce the death before the mortuary can pick up the body.

So, M left my home about 7:30 AM.

I am so, so, sad. Yet, so glad that he did not suffer more. Two days ago he was replacing batteries in various lights, remote controls, hearing aides, etc. He's the one who said "you need triple A batteries".

Always the task master.

I will miss him, even with all of his craziness.

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Wednesday, August 10, 2011

The Other Story


Yesterday I posted about calling the firemen to pick up M. I said he had a sore ankle, but that's another story.

Well, here is the story.

My ice maker has not been producing as much as as we are using. Probably because it's been over 100 the last few weeks, and everyone gets ice, and stands around with the freezer door open.

M said I probably needed a new filter for the ice maker. I never heard of this before, but then he told me that our dad had replaced the filter in their ice maker every 6 months. So Sunday when I was gone, M decided to GET ON THE FLOOR and try to read the model number on the refrigerator, so we could know what filter was needed.

I came home to find this. My brother R was here at the time, was none too happy (don't forget he has put up with M his entire life, more than I). Anyway, R is a big guy and ended up picking M up off the floor. But, the next day was when M's ankle started hurting, and his hip, so obviously he did some damage.

I feel so bad for M. He just can't help himself. He just has to do it when he gets something in his head, and there is no common sense saying "maybe this will be bad for me".

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Drugging M


After calling the firemen to pick M up off the floor, I resorted to drugs.

Of course, this is what is done in nursing homes, and even in the inpatient hospice unit. But until now I have resisted. Well, that's not true. Nothing really worked and I gave up.

I started back going through all the drugs I had trying them again. I found that a full .5 of Ativan helped to calm M down, but he is actually worse the first couple of hours after taking the pill, which is why I didn't think it worked the first time I tried.

So after the firemen came I gave him a full pill, but he rang me after 2 hours. So a couple of hour later I gave him another full pill, which slowed him down a little (this along with how bad he hurt). But he was still like Goldilocks, wanting to go from chair to chair.

The nurse came at 3:00, because I had called the Dr. asking for more Ativan.

After talking with the Drs. nurse on the phone when the hospice nurse was there, saying how much I had given which didn't really slow him down, about the getting on the floor incident, the Dr. decided to double the dose.

About an hour after the nurse left, M started complaining about hurting, so obviously he was starting to feel the effects of the fall that morning. The Dr. had prescribed Loritab for pain, as the Roxinal made M nauseous, so I gave M a Loritab. This knocked him out, along with the Ativan, so I gave it again around 9:30 PM, to get him through the night.

I fixed him up with a small cooler in the bed so he has access to ice chips and sprite, told him to ring me if he absolutely had to, but to not try and get out of bed. I then parked the wheelchair next to the bed to keep his legs/feet from coming off the bed, if he should turn over wrong, or try and get out of bed.

He did ring me about 4:00 AM saying he needed ice chips, but I happened to be awake so it wasn't bad. Then he rang at 6:30 wanting to get up. I told him to wait an hour as our brother R would be there then. M went back to sleep, and I had to wake him around 8:00 to get him changed, and R got him in his wheelchair.

So begins another day. I sent R to Target to buy one of those memory foam pads for the bed, as if M spends a lot of time in bed that will help prevent pressure sores. So now I am waiting for the laundry to finish to I can remake the bed.

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Tuesday, August 9, 2011

G's Dialysis going OK


G came home from dialysis yesterday and told me the catheter ran well.

The last 3 times it had not, so it was a concern.

I hope it will keep running until he can get the necessary surgery to do dialysis through a fistula, or maybe in his stomach (I think it's called peritoneal), which he would then do himself. I guess you put some fluid in your stomach area (not sure how it works) several times a day. They say it's actually the best way to do dialysis, as it is closer to mimicking true kidney function.

He has an appointment on Friday with the VA surgeon, who says he can do the surgeon G needs, but 1 1/2 years ago he said he could not. Once he takes a look at G he will say "Oh yea, I remember, I can't do that surgery"....of if the idiot does say he can do the surgery we will have a big fight on our hands.

Then the VA will refer him out to the surgeon in town who can hopefully do it. It will require doing an artificial graft on the outside of the abdomen. G has too much scar tissue inside.

They have done one in town which is working. Let's hope they can do it again.

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Called the Firemen


About 1:00 AM I saw the light on in M's room. I was up late making red sauce, so thought I would check in on him.

He was on the floor, next to the bed. He could have reached the ringer, but I had told me not to bother me unless it was important, and he can't distinguish between what is important and what is not.

I managed (although now I realize I should not have) to get him most of the way into his lift recliner. But about 7:00 he decided he wanted to get into bed, did not ring me until he was already on the floor.

I called 911, because I learned they will come pick people up off the floor, and not insist they go to the hospital. They sent a big fire truck with sirens (why else would one become a fireman?), and a couple of medics, 5 guys in all. No wonder taxes are so high.

They were very nice, got him into his chair (where he now decided he wanted to go).

I went back to bed, told him not to try and get up without ringing me. He wanted to know what time I wanted to get up.

His OCD is so bad it is like living with Monk. And even though he is exhausted, he still must have things just a certain way.

I gave him an Ativan after the firemen came, hoping he would sleep for a while, but at 9:10 he rang me wanting to get in the wheelchair, which we managed, and just now into the recliner in the living room.

I think the main problem is his left ankle got hurt. That's another story.

Every day I look at him and wonder if he will die today. He is so very thin, and not really eating.

But, he just keeps going.

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Saturday, August 6, 2011

Update on M

Where to begin.

We changed hospice agencies. M's primary care Dr. is increasing the diuretics to give some relief, which is one reason we changed hospice agencies, the Dr. at the other agency would not do that.

M threw up yesterday after eating a sandwich and some soup. I mean really threw up.

*** (don't read below if you are squeamish)

So I thought his digestive track was messed up, as he had diarrhea before, and now was constipated, so I gave him an enema. It didn't really have any immediate effect, but apparently about 4 in the morning it did. He managed to take care of it himself, because I had told him I didn't want my sleep disturbed.


It's so frustrating, because I tell him to not ring me unless it's really important, but then he doesn't ring me when he does really need help. Oh well, I think him being as independent as he can be is a good thing for him and me.

His swelling is worse. It's really horrible. But, I don't know of other options.
Since we don't believe in euthanasia, I guess this is the best we can do.

Update on G

G did not have viral pneumonia, but he did need a pint of blood.

I got a call from his nurse about 2:30 PM after the Dr. appointment this morning saying that G had to come in to get a blood transfusion.

G wanted to do it the next day, because he had an appointment with his renal Dr. in the morning, but the nurse phoned back to tell me "if he doesn't get this blood, he might not live through the night".

Well, that scared the S out of me...so I put him in my car and drove him there myself. There had been a mix up by the wheelchair transport company and they took him home instead of to the VA....it just all gets so frustrating.

Anyway, he gets to the VA and they don't have a room ready in telemetry, where they want him so they can monitor him during the transfusion. So he hangs around for a couple of hours. Luckily my brother R is in town so I can go to the VA.
So I ask the chief Dr. (who is now taking care of G since it's the beginning of the month and all the residents have just started to work)...."so if this was so critical, why isn't anything being done?", to which he replied "well, I think they were must being a bit dramatic".

So the new Drs (residents) came in to do the history. Of course the VA is basically run by residents, and lets face it, Drs. have to learn somewhere. So G and I took a lot of time and went over his whole history, which is quite interesting. They were concerned that G was losing blood somewhere, so they sent him for a CT on the leg where they did the procedure last week.

Of course as G said, they could just look at it and see it wasn't bleeding, but, Drs. can't just look at anything these days and see what's wrong. They must have a diagnostic test. That's why G didn't get blood when he was in the hospital. He was discharged with a hemoglobin count of 7.1, and they won't transfuse less than 7But by Wed. it had dropped down to around 6. The thinking is that because of the volume of fluids they pumped into him to get his blood pressure up, somehow (I guess) this masks the true hemoglobin level.

So once again, if someone with a brain looked at him (as I did) and said "this guy is sick", and, if the Dr. who did the surgery had the guts to say "this guy lost a lot of blood during the surgery, he probably needs a transfusion", maybe they would have given him blood, like they would have in the old days before all this testing.

G pushed to get released on Thursday morning in time to make his Dr. appointment. Once again he had to irritate the nurse to get her to do her job. And, when the renal Dr. nurse came out to the waiting room she said "we thought you were in the hospital", despite the fact that the hospital nurse said she had called the renal Dr. nurse to let her know he was being released.

Now, there are some very, very good nurses at the VA. We know them. Generally they are working in the general part of the hospital. For some reason all the bad nurses have been shifted to the ICU/telemetry part, or, the nursing home.

G's renal Dr. called him at home yesterday, to tell him the VA surgeon can do the surgery he needs for access for dialysis, which is BS, the guy just forgot.
So G should see him next week, and then he will remember, and then G should be able to get a referal from the VA to the Dr. in town who can do the surgery, as that is his specialty. The VA surgeon is just a general surgeon.

G's catheter has been running slow for dialysis the last 3 times, but he took an extra pillow to sit on, and that helped. He now wants to go in the car to places, and I guess we will. If he were to die soon, it would really suck I was so careful and didn't enjoy life a little bit. And now that catheter has been in him so long, it is probably well "set".

G is feeling much better, which is good for me, because with all I am going through I can't handle him being grouchy.

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Monday, August 1, 2011

Update

G has an appointment on Wed. with his primary care Dr. I think he has viral pneumonia...we shall see if I am correct.

As for M, we will change hospice agencies this week. But, M says he would like to go to heaven, and I asked him if I am doing a disservice to him by keeping him alive, and he said yes.

So, in a few weeks he may decide to discontinue care. If this is really what he wants to do, I can't disagree. He is not happy, knows he will never get back to what he was like. The new Dr. and hospice agency will give him more of the diuretic to reduce the swelling, but I don't really know how much difference it will make.
He has no interest in anything. Only today did he eat half a sandwich, as he has only been eating ice cream and drinking juice the last week or so.

He is like our Dad, if he can't be doing something, he is not happy. And, if one can choose to go as one wishes, maybe that's not so bad.

I just don't know how I can handle the end. But, perhaps the hospice people can help with that.

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