My Journey
by Mary Radawski

My Journey Notes:

4/14/2012
I died about 2 weeks ago. (wow and I don't even smell bad)

This whole winter has been a downward spiral, but the death was a wake up call...I was sitting at the computer, and I put my oximeter...77%. Took me some time to realize the tank was empty, and I was running on empty too.

John and Sarah and I talked a lot over the weekend.  Finally I made them see that I wanted to have a hospice person come in to talk to us. Wonder of wonders, the hospice person agreed with me.  Here's the plan...short term hospital tune-up...home to hospice at home.

My second day in the hospital, I had an "I cant breathe" melt down.  Nurses station called the hospice doc and I learned the first lesson in better breathing... MORPHINE... tiny amount under the tongue.  I can breathe.

more later...
hugs, slugs, love, peace
M

4/14/2012
Heartland Home Hospice has taken over my life. Already they have won a battle for me, allowing me to keep my DME supplier and my liquid oxygen. Their suppler could not handle this so mine will.  Do I need this affirmation that they will work with me? YES.

A bath chair is delivered and a bed table.  Packages come in the mail.  The first has all the stuff I might need in an emergency. Morphine constipates, so stuff to un-constipate  is in the box.  There's more morphine as well.  Put it in the refrigerator and use as needed.  I mention my mouth is dry, biotine is fed-exed to my house.

I have an aide for bathing and stuff like that 3 times a week.  There is a nurse and a nurse practitioner. There is a spiritual advisor. A social worker will do whatever I need.  I am settled in with hospice.

Obviously I hope I have more rather than less time. Six months would be great.  Part of the reason for this is to transition my family, including a 6-year-old granddaughter Katie, from the part where Mom is a burden to we had a wonderful time together.

hugs, slugs, love, peace
M

4/16/2012
It's Monday and I am up at the decent hour of 9:15.   All weekend I slept until 11:15.

I missed the people who live inside this box on my desk.  I need to have that normal chat and banter back and forth.  

From the day I first signed on here there has been another family taking care of me.  I honestly believe they saved my life when that bond happened.

more later...
hugs, slugs, love, peace
M

4/16/2012
Hospice is a sort of messy way of living. "Supplies" and "paperwork" accumulate. I have to find a place for diapers and cleaning cloths and medicines and and the papers that each of my team members leaves behind. It is also a bit of joy being given a bath and having my hair freshly washed and my linens changed.

I am enjoying a bit of pampering . I've enlisted Sarah in a project of sending various folks things I want them to have along with notes. She is also keeping notes about who should have various bits of the equipment I have treated myself to. I want to be organized about this process. Lets see how I do with that.

Hopefully, I will get out of the house a time or two over the next few weeks. I want to get a haircut, go to our regular support group, attend Andrew's first birthday...where there will be a professional photographer to do family photos. I can't be planning things a month from now...seems odd but there it is.

We filed our taxes today...I'm thinking that will be someone else's problem next time.

hugs, slugs, love, peace.
M

4/19/2012
Yesterday I "crashed".

John kept trying to wake me up and I kept sleeping. I figured out that I had had 3 long visits on Tuesday. Not one bit of energy left for Wednesday. Today I'm up and alert and looking forward to a bath.

My aide and I will begin to pare down my wardrobe. Mostly I will spend my time in Pajamas. Only a few things will be needed for going out. Things don't matter to me. Except for some things that have special meaning. Sarah is helping me to send these out. People have always mattered the most to me... the years I have been here... the bits and pieces of peoples' stories that have lodged in my mind over the years.

When my 50th anniversary of graduation from High School occurred last year I struck me that in 1961 two things happened that defined that generation for me. In January, JFK gave his iconic inauguration address. In August Barack O'Bama was born.

Little things trickle through my mind occasionally... some will annoy you.

hugs, slugs, love, peace, thanks
M

4/20/2012
It's normal nowadays for a newborn to have a nursery. Parents choose themes and colors and sign up for gifts at the baby stores.

I'm living in a nursery now also and it's a nursery with extra equipment...though the room doesn't seem to have grown in size. I bought myself a comfortable hospital style bed when we decided to move me downstairs. There are two large liquid oxygen reservoirs. I have a bi-pap machine and its supplies plus a couple of nebulizers. I have my very own Potty Chair! Believe me when I say getting off the bi-pap and on oxygen and into the bathroom in time is not feasible. We also have a chair for visitors and, of course, a bed table. The final piece of large equipment is a bath bench.

We've had to rearrange the drawers in my room so that we can accommodate my diapers and my wipes, bed pads, extra sheets, towels, medicine, lotions... the list is endless. Maybe this could be a second career for someone after retirement... decorating and equipping the senior nursery.

hugs, slugs, love, peace
M

4/25/2012
I did not expect for it to happen so early in the process but, there are some things I am losing interest in. Movies and much TV are more background noise than something I want to actually view. Reading remains a joy however and I spend a great deal of time doing that. Also I am writing more on the computer...the hands do not work for writing anymore.

Yesterday was a red-letter wrapped in a great big bow day. Orlan and Dave Meeks visited me. For those of us who got to know him as well David was one of the Joys of Having Joe. As a set of son and father, David was surely the father figure.

Last evening we had a COPD/ Alpha1 meeting locally. It's like having super bonus to get to feel normal and talk to old friends. Having Lisa and Chris Adams come down for the meeting was a like winning the trifecta.

People do Matter...so very, very much. And every minute with a old friend multiplies the joy!

Hugs, Slugs, Love, Peace.
M

5/18/2012
I've become concerned by two things this week. First I am much less steady on my feet and have to be extra careful getting around... and I cannot get up from the floor, even with something to hold onto. I've also had what I feel is a sharp drop in cognition and memory. Words seem to be substituting themselves in my mind. Sometimes this leads to interesting spoonerisms...others to embarrassing flubs.

My eye from the fall taken a couple of weeks ago is still not ready for a photo session. Then last night I scratched in my sleep and now have a big black red spot on my arm. Aggravation has become my middle name. I have not increased my use of morphine...though it does help my breathing. I'm unwilling to trade that for feeling more out of it than I already do.

I'm counting on you folks to notice when I wander and seem not to be thinking straight.

Hugs, Slugs, Love, Peace.
M

5/20/2012
I am going to change my name to amazing grace the klutz. Last evening I went into the bathroom to change into my jammies. I do not even know what caused it but I fell and removed 2 large spots of skin from my right wrist and hit the tub with my elbow. Now typing is awkward, carrying things in my right hand impossible and moving around is challenging. I never realized that every time I got up I used my right arm. Getting into and out of the bi-pap is not an option.

This morning my nurse dressed the wound and checked for full range of motion in my right arm. It is not broken. A call to the hospice office even on Sunday will get you a real person if you need one. It's a factor to consider... emergencies and problems don't tend to adhere to a 9-5 schedule.
A new adventure to try... getting dressed with only one useful arm.

hugs, slugs, love, peace
M

5/28/2012
I'm having a little more trouble this week. Holidays are not a good time for home hospice...only one or two on call and usually not your one or 2.

I learned last week that my regular nurse is leaving this Wed. My new nurse has entirely different methods and I am now feeling confused and a bit at sea. Meds have been a problem. My old nurse filled my boxes with me. The new nurse takes them to the living room and does them by herself. Now I don't seem to know what I am taking, when or why. Tomorrow I plan to call the office to have the manager come see me. I learned Friday that my next nursing visit will not be until next Mon and 10 days is too long between visits.

I am also becoming more forgetful and more unsteady. Since both can be dangerous, these things worry me. I will try to work on them.

hugs, slugs, love, peace
M

6/2/2012
What a week of highs and lows this has been.

I have a deep wound on my thumb from a falling encounter with a wicker basket. I must keep it dry and keep medication over it. This involved putting a glove over the hand every time I need to use the bathroom, wash my face, clean my teeth. Finally, yesterday a physician's assistant was able to dress the wound so that I can fulfill the conditions of keeping it dry and clean...this mess all started May 20. Now the wound may be healed by another week of therapy.

Personnel change in hospice almost daily. My nurse Bev disappeared Wed. They sent Carla. I cannot deal with Carla who treats me like a freaking idiot. Next Mon I will get a new nurse. Pray for me that he/she will work out.

On Wed I had a wonderful visit from Bill Clark who was always my boss and friend at the Foundation. We traded stories and laughed together. How precious it is to have such a friend who will "stop in" after a 5 hour drive from Cincinnati. Orlan also stopped by get materials for an event in Indy and to borrow my small liquid portable for his trip to Indy this week. Elisa came along and we went to lunch. One trip out of the house this week.

I only have one pair of shoes that fits me any longer. My daughter is looking for some of her old size 8's that are tight.

Meanwhile I breathe. Five minutes on my feet send my sats to the high 70's and I must take 10 minutes to recover. Less movement, lower sats, a vicious circle.

hugs, slugs, love, peace
M

6/6/2012
Have I gone completely mad...or is this a blip that will matter not at all in the end.

In the past seven weeks I feel as though Hospice has driven me mad or I have sudden onset dementia.

A tale of 4 nurses.
Bev. Jolly. I will be here every Monday and we will fill your pill boxes, do an assessment...I am your nurse. Take your morphine, everything is fine

Week 3...next week I am leaving permanently for Hawaii....meet your new nurse Carla.

Bev and I do some talking while Carla whisks away my medications to another room and fills the boxes with mixture of meds I recognize and many I do not. She fills the boxes through Monday noon of week 3.

Carla. My med boxes are empty. I have not seen a nurse for 10 days. Call the office. I am not on Carla's schedule.

Maybe I will see a nurse next Thursday. Figure out out your own med's here's a list.

I have a wound from a fall on the lower part of my right hand. Put this orange stuff on and cover it with this breathable stuff. Keep it dry. Wear a glove while using the toilet.

Day 3 we get it wet trying to bathe and wash my hair.  Here, slap on this mini patch and it will do fine. Mini patch comes off overnight. John and I try to fix it. This does not work.

They send folks to drop off material. Orange stuff...I have lots they also send huge wound covers, suitable for say a knee. I describe the material I need. They send the wrong stuff again. Finally someone finds what I need and a week or so later the wound begins to heal.

Today My massage therapist Susan will show up at 3. Tomorrow my aide Jennifer will come and wash me and my hair. Now is a nurse coming Thursday or Friday...this week or next? I honestly do not know.

I am going to sit down and discuss this with my regular PCP on Monday.

hugs, slugs, love, peace
M

6/13/2012
Dieing is harder than living. You occupy a space between being able to do things and not being able to do things without help. I cannot bathe, wash my hair, cook for myself, change my linens or do laundry or clean.

I also have a dilemma with the nurses of this particular hospice. I started out with Bev, competent, cheerful and trying to get me oriented in the hour she was supposed to see me (interrupted by 11 cell phone and pager calls). The next Monday Bev showed up with Carla. Carla is my replacement for Bev who is moving to Hawaii the following Wednesday. While Bev and I talk, Carla takes all my meds into the next room and fills my boxes. Colors, shapes, sizes have all changed around and the result is total confusion for me as I change over to their system. Meanwhile Bev dresses an ugly wound I have gotten on my right thumb. This dressing will fall off when we get it wet during my Thursday hairwashing. Replacement supplies are on the way. NOT. Dressings would cover my knee perfectly adequately. I call and explain what I New dressings are sent. They do not include the wound cover that sticks. Finally some guy named Chris comes over with the right stuff. It is a two person job, but he cannot help me bcause he is not trained. John and I figure it out. Carla will not be my nurse.

It has been two weeks since I saw a nurse. Today the one I was to see tomorrow, has a sudden Dr. appointment. She is due to see me at 9 am Friday. John will be lying in wait to wake me up at 9 and let her see the beginning of our day. I am feeling evil, wicked and self-satisfied.

hugs, slugs, love, peace
M

6/17/2012
DISASTERS
Friday evening we went to dinner with the family. Got myself into bed to read. Fell asleep. Woke up a couple hours later. Oxygen tank completely empty. Sats at 71. Fortunately I had some left in my marathon. An hour later, I had pinked up and begun to breathe at 93. Did you notice the s on the word disasters...more to come later...

6/19/2012
DISASTER # ???
Saturday night I fell down. I had placed myself at the edge of the bed in preparation to go to the bathroom. I fell forward onto my arms and knees. John was nearby, but John only outweighs me by about 20 pounds. Together we struggled and got me back on the edge of the bed. With his support and extra care we made the required trip to the bathroom and back to bed. The only place I am now not bruised and sore is my back and my torso. I wonder what will happen next. I am beginning to feel that I am going to die from a fall instead of COPD.
hugs, slugs, love, peace.
M

7/4/2012
We had a huge rain storm follow by wind and power outage. The rain was least welcome.
The small generator kept us in food and light.
THIS WRITING TOOK AN HOUR.

hugs, slugs, love, peace
M

7/12/2012

Note: This is a part of the note I received:
     This is John, Mary's son. You probably realize this, but we think that Mary had a stroke
or has experienced some sort of brain trauma. She's getting confused very easily and has a
hard time expressing her thoughts. She realizes this to some degree, and she knows that
working the computer has become too difficult for her. She wanted to dictate a message to
you, and after some work in translation, what follows is the message that we came up with

Hey Chip,

I am still hanging around. I am still alive. I can't believe that. I can tell you that it really, really sucks. I am assuming that this story about going into this wonderful place called Heaven is something, but all I see is my living room (which used to be my dining room.)

There's not a whole lot on T.V., and if I could talk taxes with you I wouldn't be able to talk taxes with you. We need the health care. I have never needed all this stuff  to be happy.

We need to get more in touch with people who are in person and not on the computer. We need phone-to-phone lines for people who don't have computer lines. We need a person for sending out COPD newsletters to the newspapers for whenever they have health days.

I expect to be going soon.

Hugs, slugs, love, love you all
M

(Ready? I can't say.)

7/25/2012 -#1
Up and Downs

We had a terrific time this weekend. All of John and Jim's buddies from high school (who were kind of kids of mine too) came to visit. The downer is, however, that I'm losing my gross eyesight. I can't read, type, or do anything that requires small hand motions, so effectively, I'm blind. That makes life that much more difficult. I'd really like to come to chat, but there's no way I can do it. My health has up and down with more eating and drinking problems than anything else. I miss you all. I will keep you notified every so often.

hugs, slugs, love, peace
M

7/25/2012 - #2
"You look so much better!"

Of course I do. Someone is bathing me, cutting my hair, giving me massages, and making sure I take my medications. I look better, but I've lost eight pounds, and I try to cover the bruises from all of my falls. Ongoing problems inside aren't so great.

hugs, slugs, love, peace
M

8/11/2012
You Look Great!  -  folks sometimes tell me that I look great these days. Looking and feeling are not the same. I look better than I did. Someone else is bathing me, washing my hair, making sure I take my meds, feeding me. All the things I was doing for myself are now being helped out with...so the veneer is better.

John has decided it's not his job to write for me...so you may have to deal with some typos...I will try to spend the time and my typing is getting better.

One problem I continue to have is getting g-mail. I can only use one e-mail at a time...my brain is not up to two. Somewhere at frontier.com there are probably a million e-mails. None of them transfer and none of my address book or contacts list came with me to g-mail. the address you can all use to get to me is mradawski43@gmail.com. that usually works after a few tries. I have decided that the word google is a synonym, for me at least. for scramble and google does scramble things very well for me.

John, Dawn and I are working at making this into a place where we all have our own space. Unfortunately mine is the dining room, though there is another way through to the kitchen. have a excuse for how bad the house looks at least. We think one of dawn's kitties will merge with my two...one I haven't seen. Edgar, the mixer, is one of those lovely Dark Siamese who will let me pet him if Dawn is holding him.

I am grateful this week for Orlan's transplant. being on my last legs does not take away worries about others nor interest in what all of you are doing. We are looking for a key-board add-on to help me with the sight problem.

hugs, slugs, love, peace
M

8/12/2012
I'm becoming one big rash.
First I start out with little bumps and then they turn red. Either an allergy or? No one else in the house has it so must not be fleas or bed bugs. Suppose this will involve a consult with an allergist or a (brain not working...insert name of doctor who treats skin).

These days I spend a lot of time fishing around in my head for the word I need to use.

Holidays are boring, especially since something is wrong with our wi-fi. If the computer has to be rebooted...and it does a lot...John has to do that in his room an I cannot get to John's room.

lots of aches and pains and coughs today... think I will take a nap.

hugs, slugs, love, peace
M  

8/26/2012
It is getting harder to accept things that go wrong!

Thursday my oxygen company sold itself to another company, The new installation goes well.   I discover I own the bipap but not the Marathon .

Friday the new tank fails twice. I notice I cann't breathe and my sats are in the 50's.

Am I MAD or just going there?

hugs, slugs, love, peace
M  

9/18/2012
(I just spent two mental minutes trying to think of hospice....only word that would come was compost ... is there a lesson in there?)

There is an up and down to hospice but it is by no means even. It's possible to have a perfectly normal day. Of course the "normal" is a new kind of normal. A day when I wake up around 7:30 take a handful of pills, take some morphine, nebulize, have a snack, check newspaper headlines,.... an aide or nurse or whoever is due today will bathe me...change linens, put away some laundry we use, make sure my diaper is clean ... a few snacks, more meds, a little TV, maybe a nap . Very dull. Normal we like because it is normal. Oddly enough, good can be normal. Normal can be better than good.

This isn't me...It's flat ...the words don't invite you to read...I want to think about this.

hugs, slugs, love, peace
M

9/21/2012
Something woke me up at a 4:34 last night in a panic because I had not filed my income taxes. Increasingly more these little episodes happen at some odd time. Of course the taxes are done, no calamity awaits. Time is gone. I'm seldom aware of when and where I am in this universe I wonder if this is an effect of not seeing forward for I no longer actually plan ahead. I say I will see you well knowing I may not, though there is hope for another meeting.

On the opposite side of the coin there is a place that sort of resembles an old place's town dump.( it's king of an elysian field of dumps). There I wake up to find myself in the most interesting and colorful, field fantastic of dreams. Fun, adventures,food witty chat... poooooooooooooooof! I know these things must be from meds but they are coming fast and furious now.

hugs, slugs, love, peace
M

9/30/2012
Signs of deterioration are are coming faster these days. The kids made my keyboard more useful by printing big letters and attaching them in yellow and making slightly smaller so they could add blue symbols. We have not figured out how to retrieve words and sentences. I am fortunate that John understands my thought process and usually can trap the word. "what name did I really want instead of R Buckminster Fuller? I'll tell you when I remember it again, but he knew.

I have become a sleeping machine...probably because the bipap has been giving me trouble at night. Comfortable bipap is an oxymoron these days.

My Nurse Susie is a pill and morphine pusher - I am not in horrible pain. I prefer to stay alert and able to communicate. Weight and appetite loss have set in again. I have personal help 3 times a week, a masseuse once, Susie once and my spiritual adviser once. Jim mostly works the live in facilities. We mostly just have fun conversations.

hugs, slugs, love, peace.
M

10/1/2012
When in doubt, choose diapers over either a bed pan or a port-a-potty. Just a random thought when I sat down at the computer, but also some wisdom.

Try and keep your stuff organized. What you need keeps growing like a dump around you.

Reading is almost completely out of my sphere unless it is magnified. TV, on the other hand, is still there except for rolling text.
I am not in chat much...you all talk too fast... and my eyes tire easily.

You are in my mind. I wish I could see you.

I am getting weaker also. The dips in how I feel seem larger and they come faster.

Hugs, slugs, love, peace.
M

10/5/2012
I am taking more morphine these days and waking up in pain. I have been taking 4 doses a day and now am using 6 or 7. I try to time my dosing so that I can be more lucid when my bathers and bed changers are in house. I may have to allow my nurse to see me at my worst. She would like me neat and chatty. In fact she would like me to volunteer to teach knitting!....  I finished Andrew's hoody. I think she wants to put me to work. When I look at this broken down broad with, if luck holds, 2-3 weeks left.

hugs, slugs, love, peace
M

11/18/2012

From Mary's son John:
Mary had been in and out of consciousness (Thursday). He indicated that he can tell when she's under sometimes that her brain is working really hard, and there's stuff going on, but it's not translating into wakefulness. The nurses have been there and washed her arm and hanged the dressing under her splint (She broke her left arm about a week ago).

They also made him take a walk so he could get out of the house for a while. He went on to write "Thanks all for the prayers and well-wishes. If our conversations were longer and more normal, I'd tell her that you all are thinking of her!"

In a phone conversation this morning, He let us know that she is unresponsive at this time.

---

Later that same day, at 12:26pm, Mary passed on.

Mary first came to COPD International on January 25, 2005. As she said, becoming involved in this community early on gave her the courage, and the will, and most important the knowledge to go on and to do those things she needed to do to keep going. She also wanted a life as normal as possible, including living independently in her own home. As Mary gained knowledge about our disease, she developed into one of our most active supporters - always full of compassion and understanding for anyone with a problem. She gave tirelessly of herself to the fight for COPD and COPD awareness, always finding ways to help. As an active member of the COPD Help line, and as a part of the support team for the COPD Foundation's coaches corner, along with the endless time spent with COPD International, Mary helped untold thousands deal with COPD. It was Mary's idea to chronicle her experiences starting with her entry into the hospice program in April of this year. It provided a final opportunity for us to learn from this strong, most caring woman as she shared her thoughts on that very hard journey. Through the miles of cyberspace, Mary has become a friend to so many. One only needs to look at the messages in the Loving Thoughts section of our web to realize the degree of closeness she had with so many around the world. Rest well my friend - you have the utmost love and respect of us all. cg