Update on mom

Hello,

Still sorting through the details of what the next step will be for
mom. She listened to everything my sis and I said today. We went in to
see her armed with some really good ideas. She feels a skilled nursing
facility is indeed a good idea and admitted she knows herself well
enough that she would try to just go back to bed if she came home
feeling the way she does.

She said its not that she does not want to be well and to do more with
her life. She just gets so winded and exhausted trying to get up get
dressed etc that she just gave up. First we were told she may be
released Friday. Then during a PT walk today her heart rate rose to 148
and the nurse made her get back in the bed.

Things are not stable when she excerts herself for a simple walk, this
is quite depressing for her, we will see over the next few days where
this is going . Results from biopsies of her lungs should be in
tomorrow. They have given her a universal antibiotic for an infection
that so far has not been identified.This antibiotic has loosened up
some stuff and her cough was made worse but finally has cleared and is
getting somewhat better. There are ulcers on her vocal cords being
treated with an antiviral med . One day at a time .......

Other news that I am quite happy about is that my daughter S since I
have been gone has done really well, and has taken responsibility to
call and make herself and daughter a dental appointment , called for
test results she had done. Most of all that makes me happy and proud of
her is that she called and made an appointment with her therapist for
tonight herself ! This is a first and I could not be more happy with
her. :-)

tonight we will relax at my sis's house and watch a movie exhale

I hope it's not a western grin
Bev

'Kate wrote:
On 30 Aug 2006 17:19:42 -0700, "Bev" the
following was posted in blue dry erase marker:

Hello,

Still sorting through the details of what the next step will be for
mom. She listened to everything my sis and I said today. We went in to
see her armed with some really good ideas. She feels a skilled nursing
facility is indeed a good idea and admitted she knows herself well
enough that she would try to just go back to bed if she came home
feeling the way she does.

She said its not that she does not want to be well and to do more with
her life. She just gets so winded and exhausted trying to get up get
dressed etc that she just gave up. First we were told she may be
released Friday. Then during a PT walk today her heart rate rose to 148
and the nurse made her get back in the bed.

Things are not stable when she excerts herself for a simple walk, this
is quite depressing for her, we will see over the next few days where
this is going . Results from biopsies of her lungs should be in
tomorrow. They have given her a universal antibiotic for an infection
that so far has not been identified.This antibiotic has loosened up
some stuff and her cough was made worse but finally has cleared and is
getting somewhat better. There are ulcers on her vocal cords being
treated with an antiviral med . One day at a time .......

Other news that I am quite happy about is that my daughter S since I
have been gone has done really well, and has taken responsibility to
call and make herself and daughter a dental appointment , called for
test results she had done. Most of all that makes me happy and proud of
her is that she called and made an appointment with her therapist for
tonight herself ! This is a first and I could not be more happy with
her. :-)

tonight we will relax at my sis's house and watch a movie exhale

I hope it's not a western grin
Bev

We get real TV here ya know.

Yes I know,,,,,,,,We rented Posiedon ...... eh, I think I liked the old
one a lot more though. Did I tell ya I saw a cowboy the other day?

I'm glad your mom is better.
What a scare!

I hope she decides to take better care of herself should this be simply
that fact that makes her this way. It is obvious her doctors agree much
of this is caused by behavior . Praying the biopsies bring no new
issues, and what has come to light over the past 9 days is all she
will be coping with.

Tell her don't worry about what she can't do now as long as she does
something every day, the littlest steps add up.

I will tell her just that, we did a lot of talking today and that
helped me understand better just what it feels like to be in her shoes
.. A real heart to heart and I feel she really opened up to me. What she
says about how she feels when she tries to do things , no wonder she
says F it! I probably would too, as a matter of fact for about a month
I did with my knees and not being able to stand up or walk , scared to
stand in the shower unable to take a bath it sucked feeling helpless,
and I cried several times in frustration and pain.

I am thankful for this time with her I hope to be able to stay another
week or so and see her on the high road before I go home.


I wonder how she'll feel
in six months or so if she didn't take those steps now... and imagine
how proud she'll be when she can go shopping again.

'K

Sadly I am afraid mom is headed to a bedridden condition if she does
not take these steps towards better health.

Other news.........

J and I talked a bit today, she says she is scheduled to graduate in
December ! Finally she is on the home stretch of completing this very
long journey to her degree. I am so happy for her . So very proud that
she didn't give up and worked through the obstacles! That's my girl!
:-)

Thanks Kate.........

Bev

Did I tell ya I saw a cowboy the other day?

Nuh huh... nope. We didn't talk about the cowboy.


yep....I did ,I saw a cowboy! Do ya like 'em tall or short ?

I'm glad your mom is better.
What a scare!

I hope she decides to take better care of herself should this be simply
that fact that makes her this way. It is obvious her doctors agree much
of this is caused by behavior . Praying the biopsies bring no new
issues, and what has come to light over the past 9 days is all she
will be coping with.

I will.

One doc calls them biopsy's another called it a wash anyway cancer
screen clear and still unable to identify the "infection" but are
saying bronchitis. The cough is worse now after the antibiotic and when
I asked if we can expect the cough to stop we got a very vague answer.

snip

So the plan is she will be coming home tomorrow probably on oxygen with
home health care at first then outpatient PT. She made her wants clear
and we agreed to let her give this her best shot her way . She says if
this does not work she will go into a skilled nursing facility for PT.

I miss my girls :-( only been gone a week will probably be here another
week or two depending on how this all goes..............I don't want to
dissapoint M, S, and J
We reserved a 4 day 3 night camping trip in Assateague State park for
the 21st - 24th I told my sis I'd stay up to the 19th if need be and
could come back if needed afterwards. thats all for now looks like
another family movie night I must attend ! :-)
Bev

'Kate wrote:
On 31 Aug 2006 18:12:50 -0700, "Bev" the
following was posted in blue dry erase marker:



Did I tell ya I saw a cowboy the other day?

Nuh huh... nope. We didn't talk about the cowboy.


yep....I did ,I saw a cowboy! Do ya like 'em tall or short ?

LOL.... neither! Never had a thing for cowboys. I'm a city girl.

Heh....... me either I'm a ...city girl too ! grin

I'm glad your mom is better.
What a scare!

I hope she decides to take better care of herself should this be simply
that fact that makes her this way. It is obvious her doctors agree much
of this is caused by behavior . Praying the biopsies bring no new
issues, and what has come to light over the past 9 days is all she
will be coping with.

I will.

One doc calls them biopsy's another called it a wash anyway cancer
screen clear and still unable to identify the "infection" but are
saying bronchitis. The cough is worse now after the antibiotic and when
I asked if we can expect the cough to stop we got a very vague answer.

They don't know... how 'bout that.
Has she recently quit smoking? You know how that cough can be ... clears
the lungs but feels like, "oops... too late."

yes they do not know...have said she is a medical mystery to them. Mom
quit smoking like 15 years ago! After the hurry up and wait and 5-6
hours of waiting we brought mom home today, on 3 liters of oxygen full
time. Home health care including a nurse and physical and pulmonary
therapy. She takes an assortment of 20 pills and 4-5 inhaled
medications as well. This is very overwhelming!


snip

So the plan is she will be coming home tomorrow probably on oxygen with
home health care at first then outpatient PT. She made her wants clear
and we agreed to let her give this her best shot her way . She says if
this does not work she will go into a skilled nursing facility for PT.

Good for her for being open to trying.

she was a champ today and sat in the living room for 3 hours walked a
little bit as well before retiring to her room . Sis just left to pick
up the remainder of meds we finally figured out we needed to fill . Set
up a pill box to stay organised.

I miss my girls :-( only been gone a week will probably be here another
week or two depending on how this all goes..............I don't want to
dissapoint M, S, and J
We reserved a 4 day 3 night camping trip in Assateague State park for
the 21st - 24th I told my sis I'd stay up to the 19th if need be and
could come back if needed afterwards. thats all for now looks like
another family movie night I must attend ! :-)
Bev

:-) Enjoy the time with your mom, sis, and her family. You'll be back soon enough.

'K

The enjoyment is a lttle strained now that we have overnight
responsibitlity , I bet sis and I get not much sleep this evening just
worrying ..........

I had me a corona with a lime wedge and have relaxed a bit.....still
thinking that Margarita sounds like something better than that beer
right about now!

Still quit isn't this amazing! thats 11 days , still no cough , I feel
good......

'Kate wrote:
On 1 Sep 2006 19:14:01 -0700, "Bev" the
following was posted in blue dry erase marker:



yes they do not know...have said she is a medical mystery to them. Mom
quit smoking like 15 years ago! After the hurry up and wait and 5-6
hours of waiting we brought mom home today, on 3 liters of oxygen full
time. Home health care including a nurse and physical and pulmonary
therapy. She takes an assortment of 20 pills and 4-5 inhaled
medications as well. This is very overwhelming!

A short list of what the home healthcare worker could/should be doing:
-Check meds for needed renewals & breathing treatment supplies (oxygen,
etc.)
-Liaison with the doctor for her treatments & report any change in her
health to the doctor
- clean and check breathing apparatus (nose hose, mask, tubes).
-train your mother and the family to help with meds & physical therapy
-Help your mother with personal hygiene

Some will cook a meal if your mother needs a special diet
Some will coordinate her meals and do the shopping
Some do light housework... whatever helps the family.
Most will change her bed linens.
Some will do her laundry.

Use the time that the workers are with her to get out of the house!

Don't be afraid to ask exactly what you can expect from the home
healthcare folks and hold them to it. Keep a list of what you need done.

Expect it to feel weird with someone else in the house doing work.
If you're not happy with the people you have coming in, get them to
switch workers. Some are better/less lazy/better attitudes.

Find out what to look for... danger signs.
Find out the settings for any medical equipment and how to know if
something is wrong.
Get use to checking gauges on the oxygen tank, oxygen concentrator, or
whatever else you have for her.
If she needs a hospital bed to get up and out of bed, arrange for it.

she was a champ today and sat in the living room for 3 hours walked a
little bit as well before retiring to her room . Sis just left to pick
up the remainder of meds we finally figured out we needed to fill . Set
up a pill box to stay organised.

Great! And keep a notepad to write down any changes in meds, the
schedule, or missed/late doses. Communication between helpers is very
important.



The enjoyment is a lttle strained now that we have overnight
responsibitlity , I bet sis and I get not much sleep this evening just
worrying ..........

Yeah... it's a new thing and your mother's quality of life depends on
the quality of care. Consider getting a baby monitor. You can sometimes
find them second hand. Keep it on at night or when no one is in sight of
your mom.


Thank you Kate for the very valuble information!

We met with the nurse manager yesterday and were able to set things up
.. Nurse and PT will begin on Tues. Thanks to some quick observation of
my sis we were able to grab some home health aide help....apparently
mom told them she has no problem getting around and doing for herself.
This info bumped the home health aide ! My sis got my attention and we
went into another room and she said did you hear that! I said what?
Anyway mom said she bathes herself ,truth is she just doesnt ..on
occasion an "Irish bath" as she calls it. So we talked to the woman on
her way out about this and she said ohhhhhhh ! How about an aide 4 days
a week to help ya'all motivate mom..........

I had me a corona with a lime wedge and have relaxed a bit.....still
thinking that Margarita sounds like something better than that beer
right about now!

Beer...yuck. Margarita ... yum.

Not a beer drinker aye ? I can handle a nice ice cold one on a hot
summer day or after bringing mom home from the hospital lol!

Still quit isn't this amazing! thats 11 days , still no cough , I feel
good......

You did a good thing for yourself, the girls, and the grandkids.

'Kate

Thanks the encouragement is great. Have you ever heard of muscle pain
like charlie horses in your calf muscle being a withdrawal symptom? All
of a sudden this past two days I have this going on my mom says it is
the quitting?

snipandippity do da day!
Thanks the encouragement is great. Have you ever heard of muscle pain
like charlie horses in your calf muscle being a withdrawal symptom? All
of a sudden this past two days I have this going on my mom says it is
the quitting?

Or the texas heat. Eat a banana and make sure you use a little salt in
your food. Drink lots of water throughout the day. Sweat leeches
potassium (hence the banana).... lack of potassium causes cramps at
night.

I ate a few bananas drank some water and after a day or so I am kinda
feeling better in the calf. It was weird .........we were toolin'
around the local walmart pickin up a few things and all of a sudden it
felt like I was shot in the calf ,severe pain and I could not make the
regular walking movements so I had to limp around and bite my lip so I
didn't yell profanities.

Welcome to texas.

'K

Thanya' darlin' ya'all have a fine way of welcomin' yer guests! I'm
fixin' ta meet up wit cha one day so I can clean yer clock in a game of
Texas Holdem' heh heh heh ............ :-)

Bev