Is There Any Way to Do This Well? May 29, 2009

Our hospice art therapist gave us a timely reminder today that what we have been going through these last weeks is very much like the birth canal transition for babies. It’s often messy and full of pain, but the outcome is generally a happy one! Craig just wants calm, quiet space to wind down his life. But dealing with his physical needs just seems to keep requiring more people and more fuss. Wednesday night was a brief trip into hell. At the end of the evening, I wrote this to the hospice nurse:

“Okay, I give up. I can’t do any transfer any more. My neck’s out. My back’s out. And the Hoyer lift and I are having swearing pitched battles with one another. I tried tonight to get him from the bed to the bathroom…in a hurry because he thought he had to have a BM and didn’t want to have it in the bed. I had trouble getting him straight in the sling. I’m having trouble all the time pushing him in the lift, getting the legs of the lift to stay apart (they keep moving back together) and then getting him far enough into/straight into the chair when I’m doing it by myself. I’m not strong enough to lift him back into the chair. He had no strength in his legs and couldn’t help. I finally dropped him in as best as I could into the seat of the chair, but we were both so stressed that he had a mini-seizure. Then I got him to the toilet because he still had to go and we weren’t fast enough so he peed all over himself, his clothes, the floor, and me. And no BM. I had to keep holding the commode chair steady, because he’s so heavy and off center, that every time he moved, he almost tipped over. And then we held each other and cried. But then I couldn’t get him off the toilet, so the firemen had to come help get him off the toilet and back into bed [six of them in our little bathroom when we only needed two!].”

We then sat and listened to a spiritual music CD and ate pizza and waited for the on-call nurse. So, we calmed down and re-centered a bit. Someone came yesterday and did some re-training with me on the lift, so I actually did use it successfully at bedtime last night and tonight.

Yesterday was calmer (thank you God!). The hospice nursing assistant got Craig washed at 9 a.m. and he went back to sleep and got up about 1:15 p.m. We spent the afternoon and early evening with me reading our new “Empowered Healing” book to him all the way through and making edits. Then he was ready for bed around 9 p.m. Today we started another new routine. Craig sleeps in until a hospice nursing assistant comes at 11 to shave, bathe, and dress him. They then get him up for breakfast/lunch. We now have a new daily caregiving service, and they’ve sent us a very strong man who puts his arms all around Craig and lifts him from one place to another! So, that helped today. I got to the chiropractor and massage therapist and got the kinks out of my own body while they did that. And I got to miss the enema party with the hospice nurse at the same time! Yay! [Note: We evaluated whether to send Craig to a nursing home and decided to try the daily caregiver instead.]

I’ve been so accustomed to doing excellent caregiving for Craig that I’m frustrated at not being able to handle this period anywhere near as well as I would like to be. But, the team is rallying, and I’m trying my best, and we are muddling (“laboring”?!) through it all!

Love,

Susanne

Craig’s Paintings, Songs, and Poems – May 27, 2009

Over our fireplace mantle are now two framed displays, both including Craig’s paintings and poems from 1998. See photo, www.claricomm.com/CraigPaintingsPoems.jpg.

We previously shared the one poem that Ginny Kalley, our music therapist composed original music for. She has now completed the second one, “The Wind” (the painting on the right side; Here Comes the Sun is on the left). Here are the words:

The Wind

The wind is clear

The wind is clean

The wind is blowing, clearing the cobwebs.

The moon is bright

The moon is light

The moon is shining like as a beacon.

The stars are glistening

The stars are listening

The stars are leading the man to open.

Running, running, running

Singing, singing, singing

The wind, the moon, the stars.

The path has a freshness.

The dust has been removed.

The way has become clearer.

The wind is carrying a song

The moon is lighting the way

The stars are piercing the sky.

~ Craig A. Farnsworth, November 11, 1998

In the center of the photo is a mandala drawing done by Ernie Horvath of our cancer Spirituality Group. It depicts the Sunrise and Sunset of Craig’s life.

Love,

Susanne

Craig Learns to Fly, May 25, 2009

Okay, I’m starting to recover from caregiver meltdown last week. Our hospice nurse, Craig, and I have been in brainstorming mode trying to figure out how to not burn me out and wreck my body. And how to keep Craig home instead of down the road in a nursing home. As Craig is becoming harder and harder to transfer (As testimony, there’s an array of bruises on his posterior from landing on the arm of the wheelchair), we explored whether to confine him to bed. The decision was “not yet” – and we got him his own personal flying device – a Hoyer lift. See photos:

www.claricomm.com/CraigFlying.jpg

www.claricomm.com/Craig-Annie-and-Hoyer-Lift.jpg

Craig’s initial response the night the lift device showed up was complete resistance. I got very frank about an “attitude adjustment” – it was let the lift stay or he could consider either being bedridden or moving to a nursing home! Now he’s decided it’s fun…in spite of my challenges driving the thing and operating three separate controls on it! He also agreed to an increase in the steroid dose, which is helping him talk better and making bathroom transfers easier and safer.

Over the last few days, it became clear that I could no longer safely transfer Craig in and out of the shower either. Hospice is now providing a daily nursing assistant to bathe him in bed and get him dressed and up in the morning. That’s very helpful.

I was able to get to a massage therapist and chiropractor on Friday and then had a respite day on Saturday. Unfortunately, friend Nik Tressler then got stuck with our ongoing saga of Craig’s digestive system. He took Craig out for a nice breakfast. On their return home, diarrhea and vomiting both hit simultaneously – thankfully in the bathroom. They blessedly cleaned it up and didn’t call me, so I continued on with resting and relaxing and dealt with it from 4:30 to midnight instead. We are trying to determine whether one of the medicines is causing this…that’s our best guess at the moment. Craig’s getting very tired of rice, even though I’m varying his diet with rice cakes, cooked rice, baby rice cereal, rice milk, Rice Krispies, Rice Chex… It’s getting broken up with bananas and applesauce, too! So, we hope to resolve this very soon…

Craig is talking about it being “disorienting” that he is wandering between this world and the next one. He says it’s “weird” and it’s “easy to go, hard to stay.” We talked about the possible wisdom of this transition taking time, being gradual, and at times being difficult. He painted three pictures this afternoon about wanting to be with the angels and about the angels “singing beautiful, clean, and clear.” It was the first I knew that he had heard the angels sing.

We hosted our weekly study circle tonight and began it with a brief memorial service for relatives of the group who had passed away. Craig shared about two of his “angel guides”. We used a beautiful CD of music called “Fire and Gold” by Elika Mahony (www.elikamahony.com) – heavenly. We then began studying the section in our book about “Life and Death”, so Craig’s experiences kept coming up all evening.

Every day now is different. Routines are virtually non-existent. Two days lately, our morning couple prayers happened at 9 or 10 at night. I’m getting better at eating while Craig is sleeping and not waiting for him to wake up. I have to be vigilant to not miss doses of pills – both his and mine. There is a stream of people in and out of the house at a time when Craig just wants peace and quiet…but unfortunately, that would mean me doing everything, and that’s not possible. So, we cope one day at a time doing the best we can.

Love,

Susanne

Tough Day, May 20, 2009

Craig and I have agreed that I won’t get too graphic on the blog. Some days that’s a tough agreement to keep!

The diarrhea from 10 days ago turned into constipation and the treatments for that turned back into diarrhea in bed about 4:30 this morning. While trying to get up, Craig ended up on the floor, and we needed the firemen to help get him up and help me with him. Then the cleanup. Then the hospice nurse. Then more cleanup. Done about 9 a.m. Tried to sleep, but the neighbor needed to edge his lawn for an hour, so a nap later worked instead. Upon Craig waking up, we discovered that adult diapers are more made for old women with small bladders, not Craig. So, the bed got changed twice today.

It’s times like these that it’s harder to take my own advice and say “O God!” instead of “O s—t!”! We got through it all with perseverance, tears, prayer, and gratitude. I said to Craig at one point that at least it wasn’t as bad as the prison in Akka! Baha’u’llah, His family, and many early Baha’is in the 1870’s (I’m bad at history, so the date’s approximate…) were banished to there in northern Palestine(now Israel) for being too spiritually popular in Iran, Iraq, and Turkey. There was no water to drink or wash in, no food, high heat, foul air, cramped in small rooms, illness, and more. At least we have hot, running water, supplies from hospice, firemen and nurses to call for help, rubber gloves, diapers, and washing machines!

The rest of the last few days have been fairly quiet. A highlight was Thursday night’s cancer-spirituality group where we talked about labyrinths, a meditation/prayer tool that helps people center themselves with God. On Sunday, we went to one at Ursuline College, about 20 minutes from our home. I pushed Craig in his wheelchair around the path, and we made it to the center for some prayer. Here is a link to a photo so you can better see what I’m talking about.

The angels have been back visiting Craig a couple of nights in this past week. Mostly the same people, but Bill Fountaine was new. It’s amazing how many people we know who have passed on to the next world! Quite a crowd to greet Craig!

Craig is sleeping more these days. He’s had a couple of days where he has slept until after noon. I get lots of writing done, but it’s strange to keep adjusting to when to do meals and other activities. His legs are getting weaker – I’m often now pushing his wheelchair around the house instead of him using his legs to get around. And he has an infected spot on his “good” leg that we are treating. But, we are still successfully transferring him from here to there…most of the time!

So, we keep going…one day at a time.

Love,

Susanne (and Craig)

Numbness is Spreading, Books are Growing, May 13, 2009

Much to our amazement, it’s now been three months since treatment stopped. The original forecast was that Craig living more than two months would be amazing. So, he continues to astound.

Craig calmed down somewhat today, and that actually seemed to help him communicate better. He was also able to sing more words, which apparently comes from a different part of the brain, so some phrases came through more clearly. I was able to read to Craig new parts of “The Journey” book about his life and some from the latest one on the Fact-Based, Spirit-Guided Path, and he was able to indicate his approval and some input.

Kim Klein, our hospice nurse, checked Craig out today. She is trying to get a speech therapist out to help us with some communication techniques. Craig’s blood pressure, which was fairly high for him on the weekend, was back to normal. However, we discovered during the exam that numbness is now spreading down from the right side of Craig’s face, where it has existed for months, into his right shoulder and down his torso, front and back. We assume that this is linked to spreading of the tumor through the left parietal brain lobe.

Tonight we watched the movie “Guess Who’s Coming to Dinner”, about an interracial couple in 1967 wanting to marry. It was a movie we had both seen before, but we enjoyed seeing it again and being amazed that in our lifetimes, such a marriage went from being illegal in many states to now when someone who could be their child is President.

Susanne

Crying Myself to Sleep, May 12, 2009

I cried myself to sleep last night. Grieving losses…feeling some lower moments…

We realized yesterday that the cane had become a superfluous item that we just kept moving out of the way. Craig’s not walking anymore. We can still transfer him between bed-wheelchair-commode-car by grabbing the safety (gait) belt around his waist – although even that is getting more difficult as his legs weaken.

Craig’s frustration level yesterday was very, very high (he was literally tearing his hair out!). He is thinking better than he can talk, and trying to make himself understood is getting more difficult by the day. Visitors often don’t realize just how limited his ability is because he has always been a good listener and they fill up the space with their words. Even my ability to interpret on his behalf is struggling.

We attended a visitation yesterday for John Schaefer, a member of Craig’s support group with prostate/bone cancer who died on Saturday. His wife Bonnie is in my support group. I’m glad we went…and it’s hard when I look through the eyes of wondering about Craig’s service.

I’m back in the middle of dealing with an ongoing legal issue with my business. It’s so hard to think strategically through challenges right now…I’m glad I have good help. But it’s a hassle I just wish wasn’t there!

“We carry around in our heads these pictures of what our lives are supposed to look like, painted by the brush of our intentions. It’s the great, deep secret of humanity that in the end none of our lives look the way we thought they would. As much as we wish to believe otherwise, most of life is a reaction to circumstances.” Paul Richard Evans, “The Sunflower”, p. 355

But, today is another day. The sun is shining. Craig is painting out his frustrations. And, we go on…

Love,

Susanne

Difficult Weekend, May 11, 2009

As we’ve mentioned, at the end of each day, we note the “roses” and “thorns” of the day…and there are always more roses than thorns. This weekend tested that scenario a bit, as either medication doses, tumor changes, or a virus hit Craig’s intestinal system. Managing Craig physically is challenging most days, but diarrhea added a new level of complexity and exhaustion (I got better at it by the end of the weekend, however!!). So, the hospice nurse was in twice for visits and adjustments. Today he seems to be mostly back to “normal” – Yay!

On the roses side, Craig’s daughter Michelle and granddaughter Karida were in for the weekend. They helped me make a giant pot of applesauce for Craig, which he loved. Being on a rice, bananas, and applesauce diet was not thrilling for him, but he was relatively compliant! Four-year old Karida (5 in June) drew us some great pictures, too. It was a challenge trying to minimize her awareness of Grampa’s difficulties. On the other hand due to her mother’s excellent preparation with her, she was also able to briefly talk to Grampa about passing away soon.

I ran across a quotation recently that seems like it fits what I’m feeling and facing:

“There are times, it seems, that God throws a cosmic switch that moves the tracks beneath us, hurling our lives headlong in a new and uncertain direction. Of these times just two things are certain: It’s best we don’t know what’s ahead. We can never go back.” Richard Paul Evans, “The Sunflower”

Here are the last of the current batch of photo montages—I’m finally caught up! These ones are of Craig with friends:

www.claricomm.com/Friends_Mar-Apr_2009.pdf

www.claricomm.com/Friends_Apr-May_2009.pdf

Love,

Susanne

In the Peaceful and Creative Zone, May 7, 2009

I’ve been so busy writing other things, that I forgot about writing for the blog! My apologies…

We’ve been in a peaceful and creative zone over this last week. On May 2, we attended an all-day symposium on brain cancer at The Gathering Place. Our social worker at the Ireland Cancer Center, Jaime Hein Foyle, coordinated the event. Dr. Nock, our oncologist and Dr. Einstein, our radiation-oncologist, were both presenters, and we knew many others there as well. Craig made it through the day with only two short rests/naps, so we were quite amazed!

That evening, a new book was born as we talked about the day. For quite awhile we have talked casually about taking what we’ve learned and done over this 2-year cancer journey and write a book. Honestly, we figured I’d write it after Craig passed! But, here we are doing it, and I’m glad to have Craig’s input. The focus will be on sharing the tools of the “fact-based, spirit-guided” approach to cancer. It feels great to be book-creating!

On May 4th, Arlene Nedd Green came to visit. She, along with Pleasant Montgomery, visited Craig’s Sunday School class at the Federated Church in Chagrin Falls when he was a teenager and shared about the Baha’i Faith. This was Craig’s first introduction to the religion (he later became a Baha’i at Hiram College). Arlene now lives out of state, so this was the first time they had seen one another in about 20 years.

Craig’s legs are becoming increasingly weaker with some bouts of pain in them. We are managing it with increased steroids, ointments, and Ibuprophen. I couldn’t get him out of bed one day for a few hours until a caregiver could come to help. We were scared that the time of being bedridden had arrived, so we both felt relief when the steroids worked and he could get up. The steroids are helping him communicate somewhat as well, but we are doing more and more hand motions and guesswork. We got out this week to our support groups and today for haircuts, so we are doing our best to live as well as we can.

Craig’s still painting and giving me input on the two books underway when I read the content to him. The music therapist got him singing and drumming today, too. We have watched two movies and recordings of a variety show we both performed in years ago.

Craig sleeps until he wakes up or is ready to get up and shower, so our schedule these days is very fluid and constantly changing. I work and snack until he’s up and then fix breakfast for us both. Often it is so late in the morning that we only get in two meals and a snack during the day.

Here are links to a couple of photo montages (I’m catching up!):

www.claricomm.com/Craig_and_Family_Mar-Apr2009.pdf

www.claricomm.com/Craig_Living_Fully_AprMay2009.pdf

Love,

Susanne