An Update and Dad's email

We are taking things day by day. Sunday was a very good day for Mom up until the early afternoon. Dad called me so that she and I could talk since she was cohesive and making wonderful sense. I was able to have a lovely conversation with her! What a blessing. Monday (yesterday) was less good... she returned again to being unable to form sentences or receive information well.

Grandmom did share a story with me recently that gave me a giggle...She described one of Mom's comments yesterday:

"We laughed on the way home though. When John came and said you were dilated 3 centimeters Jan said ' We had better pack a bag.' Her only full sentence of the day."

[On a side note, it is true that I am dilated 3 cm, but I am still at home, just instructed to lay low and hydrate...we're heading in the direction of labor, but let's hope we move that direction slowly!]

Thanks to all those who are supporting, thinking about, and praying for our family right now. Mom is lucky to have such loved ones in her life.

Below is an email Dad had sent out... wanted to duplicate it here:

From Dad (sent Monday-yesterday):

On last Tuesday, Jan was fine as could be and had been feeling that well for about a week! We met Tuesday afternoon with Dr. Miller, head of Brown Cancer Center, and he was very pleased with how Jan was doing and said he felt she would enjoy this wonderful ride for a matter of months vs. weeks. Jan and I even began making plans to travel for an overnight visit to see one of her longest friends (Mia) and for leaving for Columbus soon after the twins were born (or, more likely, as soon as we learned that Tricia's water had broken!).

However, just the next day (Wednesday morning) Jan woke up not feeling well, which included having a headache and back pain, but she took Tylenol and carried out a full day of receiving visitors until around 9:00 PM. On Thursday Jan was less mentally alert nor as hungry and by Friday, she simply closed down. She wouldn't eat or drink, she slept some 90% of the time and when awake, she was incoherrent or unresponsive.

Yesterday morning I arrived at Norton's Hospice Unit to take Jan home as was scheduled, with the goal of helping her out of this unusual and surprising funk with home cooking and 24/7 love and care. But from the time I woke Jan up she did not recognize me (or at least did not show that she did). She could not talk at all and had a blank stare in her eyes. Jan had refused food since Friday morning's breakfast, was running a pretty high fever and would not take her medicine. Then, when I met with the Hospice Unit doctor and nurse on duty, they took the time to explain in a caring and understanding way that Jan had begun the death process, during which her body will begin to function less and less.

Naturally, I was in denial at first and called both the Brown Center nurse (Bev) and Brown's oncology doctor-on-call about transfering Jan to U of L hospital for a second opinion (and to conduct whatever other tests were needed to fix the problems). However, both Bev and the doctor convinced me that this process was in fact what was occuring, and that Jan was better off where she is (which also would avoid putting Jan through the trama of being moved). Bob and Joyce came down and saw first hand how accurate this determination is. Justin replaced Bob and Joyce and he spent the night on the couch in his mom's room.

Jan's body condition will go up and down. For example, this morning Jan started out slowly (would not eat breakfast and would not take her medicine) but by Noon she was quite alert and in a very good mood! Her fever had broken and she ate a little of her lunch. Plus, she stayed awake for some seven or more hours straight! It was a good day for Jan, and for everyone who saw her. I hope tomorrow will be just as good.

Even when Jan is not alert, she appreciates company and can hear what is said to (or about) her. The Hospice people say to talk to her like normal; tell her what we have been doing and, if we choose, perhaps hold her hand and let her know how much we love her and are praying for her. This helps to give her a warm, cozy feeling and keeps her mental outlook positive.

Jan can be reached on her private room phone, (502) 629-3697 or seen in her room (number 607) on the top floor of the Norton Pavilion, which is the former Methodist Hospital facing Broadway between Floyd and Preston streets. You can't miss the spouting water fountains in front of the building and a parking garage behind it is reachable from both side streets.

Regarding here at home, large numbers of well-meaning phone calls are being received. And, however much they are appreciated, the volume can be overwhelming and quite time consuming. Therefore, besides family members or urgent calls, I'd like to ask that you try to contact me only by email for awhile. I hope and trust that you understand.

Love,

John

A Critical Time

As mentioned in the last blog, Wed-Fri were "bad" days for Mom. We were all anxious for her to go home on Saturday. When Dad arrived at Nortons Saturday to pick her up, it was clear that she had taken an even more dramatic turn for the worst. She was not expressing recognition that he had entered the room and seemed not responsive. In addition, Mom had not eaten well for awhile - no appetite.

At that time, Dad was told - both by the Hospice doctor/nurses and by her oncology team - that Mom had begun the journey towards death. She will be staying there at the Hospice unit at Nortons unless something changes.

Saturday (yesterday) she did become more able to communicate as the day progressed. However, her ability to understand comes and goes. It is difficult to know whether she is "with" you or not. This morning (Sunday), she seemed about the same.

As you can imagine, being strapped to Columbus for me is extremely difficult. I will continue to update this blog frequently...We are all uncertain how much time Mom has left and I feel sure a lot of folks will want to know any changes as they occur.

Let us all pray she is experiencing peace. From what I can tell, she is in no pain and no emotional anguish. So this is good.

Last Day of Stay at Nortons

Today marks Mom's final day using the respit care there at Nortons. Thanks to all who visited. When I spoke with her a couple times a day I would ask if she was feeling bored, and she would reply that she had so much entertainment in the form of folks stopping by, NO TIME TO BE BORED! This REALLY made the time pass for her. So, thanks.

As I have mentioned, Mom's overall energy and "Janet-ness" seemed to have improved since the radiation. For a solid week and a half of so, she was on a roll. The last couple days, she has noticed a bit of a set back again. She is having the trouble getting motivated to get up and take a walk or stay awake for long periods. But all of this could change today - of course. We are learning (as always with life) to take one day at a time, appreciating as many moments we can of her feeling like her "good old self."

Heather, a dear friend from childhood, visited last night to help write out old memories. Mom has a book with questions designed to prompt responses about her life... from specific memories to words of wisdom. Since it is becoming near impossible for Mom to write long-handed, Heather agreed to be her scribe! Thanks, Heather... hope yall had fun.

Also, I forgot a couple days ago to include Donna Farris on the list of those who visited. She stopped by both Tues and Wed.

Lastly, I wanted to let you know that Dad is feeling more refreshed as a result of a few-day break. He is getting the opportunity to play golf today with Norman Stivers. And, in general, spent his week with good harmony between getting stuff done and putzing around with no pressures. He has been working his tail off and deserved it!

Doctor's Appointment

I forgot to mention that Mom also had an appointment today with her oncologist, Dr. Miller. She described how she is feeling - much better overall. He agreed that he could notice a difference himself. Some of her mini-symptoms (swelling feet, for example) he is attributing to the steroids, which are now no longer being taken and probably working their way completely out of her system. So hopefully we will observe those symptoms vanish as well.

She also had a visit from a physical therapists arranged by Hospice, who showed her some exercises to help her leg/hip strength. She can practice them either in bed or in a chair. We are hoping with some strengthening, she will experience an easier time getting up and down from a sitting position.

I need to also add some names to the list of folks who visited today. In addition to Grandmom and Grandad and Gaye, Mom was visited by Janet Mertz, Aunt Lisa, Jessica, and Andrew... and of course Dad as well. Hope I didn't leave anyone out.

Nortons serves a mean meal

Mom and I spoke last night after dinner and again this morning after breakfast. Apparently, Mom is extremely pleased with the food. She commented to one of the nurses, "Your food here ain't too shabby!" The nurse's response was, "Don't hold your breath. It could change by your next meal!"

She is doing pretty well there since she got admitted after lunch yesterday. I believe she is getting visited today by Grandmom and Grandad (her parents) and Gaye Holman from church. Reta and Norm Stivers plan to stop by tomorrow (Wed). As Dad mentioned, the visitation is limitless - so feel free to give a call (one more time: 502-629-3697) and stop by. Since she is feeling a bit more alert and herself these days & since there is not a whole lot to do there, she appreciates the company!

Dad's update emails come to a close

The idea of this blog, noted in the very first entry, is to allow folks the opportunity to check in however frequently they like. Also, it relieves Dad of the task of sending email updates. Below is the last email update Dad sent, probably what guided you to this site...

From Dad:
This may well be the last update emailed to you, because Tricia Joy Johnson Arthur has made us a blog! (Address is below.) For awhile at least, Trish will compile and post information regarding Jan more frequently than did I, so you can stay more current. Too, you can visit any time you choose and as often as you like, and Trish can post pictures for a more visual update. Thanks again, Tricia.

Meanwhile, since the last update, Janet Denise McClain Johnson continues to do improve remarkably and has been feeling this good for the last four or five days! She still has no pain but now the old sharp mind we knew has returned! Jan also has enough more energy than before to much less tired and to help her stay awake during all or most of each day. We are certain that the main cause of Jan's welcome "rebirth" is her recent radiation treatments, which has reduced the swelling inside her skull.

We meet with Dr. Donald Miller, head of the Brown Cancer Center for U of L, tomorrow at 2:00. He will be pleased with the report, so I don't know if he will want Jan to take another brain MRI at this juncture.

Another piece of happy news is that we finally bit the bullet and installed a chair lift last Thursday leading to and from our second floor condominium! Also installed are ramps out the front door and down to the parking lot with enough pitch for Jan to use just her walker instead needing her wheel chair. She has fallen more on these concrete steps than any other place. Janet is thrilled to have this added freedom to get out and about!

Pictures are posted on the new blog, www.thelatestwiththejohnsons.blogspot.com. Trish said the name is so long because so many of the shorter names are already taken, especially those with "Johnson" in it.

And finally, Hospice offers a neat program to give full-time caregivers of terminal patients a break to recharge their batteries. In Jan's case, after lunch we went to Norton Pavilion (formerly Methodist Hospital on 315 East Broadway) and up to her room where she will be staying through Friday! The room number is 607 and her private room phone number is 629-3697. Note that, since she is not there for any medical treatment, there are no restrictions for phone calls and none for visitation! Both are available 24/7!

Elizabeth's visit

Elizabeth came into town from Maine to visit with Mom Saturday. They had a wonderful time visiting and talking and adoring Elizabeth's 11 month old little girl - Stella! Justin joined them as well. Enjoy the pics..

Breaking News!

Mom coasting effortlessly down her steps with the help of the lift
Outside the main door, Mom now uses her walker to decline off the newly installed ramp

Mom's chair lift is up and running! The crew came to work on it a couple days last week, and it is fully installed. On Friday, Mom and Dad were able to do some errand-running together - a task pretty near impossible to do without easy access down those condo steps. In addition to the chair lift itself, Dad also got permission to get a ramp built just outside the condo unit's main door, so those couple concrete steps do not present a problem.

When I spoke with Mom on the phone Thursday while they were finishing up this project, she already had a mental list prepared including all the places/people she would like to visit once mobile. Since she encountered this energy boost (which we are assuming is due to radiation) and has been feeling a bit more herself, I think Mom was beginning to feel trapped in the condo. As mentioned before, the steps were a HUGE obstacle. And they prevented her from being able to freely GET OUT INTO THE WORLD whenever she wanted to.

Grandmom tells me Mom prefers the walker to the wheelchair when they are out and about now-a-days, which is good - since her leg strength needs to be reinforced. As Dad mentioned in a recent email, her steroid doses (pills prescribed to reduce swelling of the brain - which had been causing some of her mental cloudiness) have been slowly reducing and now have completely stopped. One of steroid's popular side effects is weakness in the legs. So were are HOPING that she will gain back some leg strength now that that drug is out of her system. As for the brain-swelling, the effect of the radiation treatments (which are now over) should be accomplishinng that.

So, watch out, Janet Johnson is back in action! What a beautiful time of year to enjoy being OUT!

Johnnie Lynn and Lisa

Forgot to mention ... yesterday (Wed) Mom was able to get some of her "to dos" checked off... She had the special help of Aunt Lisa, who has been carving out time on her past few Wednesdays to visit and do odds and ends, and Sunday School friend Johnnie Lynn. The three of them rearranged her closet and drawers so that they were more summer-compatible.

Anybody want them to stop by your place? I hear they are volunteering their services! Hee! Hee!

The Help Hospice is Offering

As some of you know, Mom registered with Hospice a few weeks back in order to get some assistance. Their very first role was to order and deliver a hospital bed with the cool remote control and handle bars/seat for Mom to better get up and down from the restroom. They have been a real help...

Below is an update Dad wrote about the other ways Hospice plans to be involved:

1) They are arranging a Hospice volunteer to come for a couple of hours once a week on the same day and time. . This way, I can get out more and can plan ahead for appointments or to play golf (for example) on that certain day, while up to now I couldn't.

2) Jan is now on the waiting list for a Hospice program to give primary caregivers a break, and I really do need one! She will go to the Hospice "wing" of Norton's Hospital for up to five days for 24/7 care, with visitation rights open 24 hours as well. I just have become to feel overwhelmed and worn out, so this will help immensely for me to recharge my batteries and continue to provide good home care for Jan. There are five ahead on the reservation list, so it could be a week or two before it can happen.

3) We are on the way toward putting in a chair lift for Jan to get down the main steps in the main building, and to adding a ramp for the four total steps out the front door and down to the parking lot pavement. I met with the our condo association just last night and they approved it all, including the need for the ramp to take a parking space.

Mother's Day!

As a Mother's Day weekend gift to Mom, she has been granted some unexpected energy. Friday, I spoke with her on the phone around lunch time and she sounded better than she had in quite some time. Grandmom and Grandad (Bob and Joyce) spent some time with Mom and Dad, including dinner, and she was apparently quite the talker... commenting that this was one of the BEST days she had had in a LONG time. YEY!

Then yesterday, she spent some time with Aunt Lisa and Uncle Brad at their home. Usually, the thought of getting out of the house (and down those stairs) is overwhelming - she must have felt pretty good to feel up to it.

Mom is now finished with her 10-day radiation treatment. The next medical appointment on the calendar is to meet with her oncologist in the coming week.

Testing 1, 2, 3 ...

Hello and welcome to our first blog entry. This site is designed to offer a common place to gather information and updates about Janet's health and the overall wellbeing of the Johnson and extended families.

Dad (John) has been, up until now, faithfully emailing the latest information about Mom (Janet) to a long list of caring folks. Alternatively, we ask that you now turn to this blog's web address: www.thelatestwiththejohnsons.blogspot.com
at your own convenience for updates. Our thinking is that the specifics of Mom's condition can be communicated once - through this blog - and that friends and family can decide for themselves the frequency with which you check it. Please record the site's address and feel free to pass it along to extended friends who may be interested in sending thoughts and prayers.

To be specific, I (Tricia - Janet's daughter) will be authoring these blog entries for as long as I am able (bed rest = unlimited time!). Dad will be providing me with the important medical/general information...

As always, we appreciate your involvement, your interest, and your prayers!

The above picture was taken this past weekend here in Columbus.