Update on Craig – June 30, 2009

We had no power for about 3 hours this morning after a severe thunderstorm, and no Internet for another 3 hours or so after that, so I’m just now able to be in communication. Gratefully, our next-door neighbor Frank Rodgers is a whiz on sorting out technical issues and helped to get our wireless network back up and running.

This morning was a repeat of yesterday morning – at 4 a.m. the end-of-life symptoms kicked in and we thought that was it. However, although his blood pressure is running approx. 60/40, his heart rate is staying up around 130 beats/minute to compensate. Until his heart rate drops, he is sustaining life. Craig’s eyes are still staying open continuously, fever of 102, and mild seizure activity. He is still doing some communicating with us with his eyes and eyebrows. We stopped the morphine last evening when Craig began to seriously resist the doses. He does not appear to be in pain any more, and we have not needed to resume them.

Leah, Michelle, Holly, and I did the nighttime and morning shifts and managed to get some sleep each. Last night we left Craig in fairly peaceful state, doing little to disturb him. Today we have done some praying and singing at his bedside, alternating with peaceful periods.

We are reflecting on the way this process is similar to baby birthing – predicting timing, pain, and moments of uncertainty are all parallels.

We have also been learning from our hospice team and each other about how to interact respectfully with Craig, telling him before we touch him what we are going to do and asking for his “yes” or “no” via eyebrow movement if there are choices. When someone comes to visit who has not seen Craig one-on-one, or when it’s clear that I need one-on-one time with Craig, there is a natural flow out of the room to give the space and time needed.

I’m noticing that at times I’m trying to say reassuring things to Craig, like it’s okay to close his eyes and assuring him that he’ll be fine and the angels are with him. Then I pause and realize that he is far more in tune with these things than I am!

Love,

Susanne p.s. Someone commented that it must be difficult to do these postings at this time. Actually as a writer, it is helping me to process and accept the experience, and we are so grateful that it has helped us create a community that is praying for us and supporting us. Craig and I are also deeply committed to contributing to others, and we feel that this communication is fulfilling that commitment.

Update on Craig – June 29, 2009

From about 4 a.m. on all day we expected Craig to pass. Nancy (sister) spent the night with me and all day here. His blood pressure was very low and all signs were that he was close. His children all arrived by the afternoon, and it seemed as if he held on for them. However, he is still with us. He is dying with his “eyes wide open” though – very conscious and aware all day (See blog from April 22). He communicated with us with his eyebrows, eyes, and body movements quite well. Our hospice nurse, Kim, was with us most of the day. Our music and art therapists came and spent time with us, with Ginny singing, and Barbara helping us understand the process. Craig began to refuse the morphine during this evening, but he does not seem to be in pain. There have been continuous apparent “mild” seizures happening. We are now doing shifts with daughters Leah and Michelle and Holly and I. Nik just left. So, we are quiet and peaceful and still expecting Craig to pass tonight. There’s probably more to say, but that’s all I can manage at the moment.

Love,

Susanne

Snoring the Day Away – Maybe! – June 28, 2009

Holly and I more or less managed the shifts last night. Craig got agitated at 4:30 a.m. or so at the end of my “on-duty” time. We noticed times when he would stop breathing briefly and that it didn’t seem as if the morphine was keeping up with the pain. Of course, we also began wondering whether it was “the end”! (It wasn’t.) The hospice nurse visited and helped us work out an increased dosage with the doctor. That has then kept Craig comfortable today…although it means often hourly medication. We then continued to do shifts until mid-day.

A friend brought food in today, so for those who are concerned about my well-being, I’m eating well, I promise! Deb Boyd-Tressler (Niks’ wife) came for a while this afternoon so I could nap, and she spent time intuitively communing with Craig. She helped me learn his body language for when he is awake and when he is asleep, even though he is “snoring” away. It’s funny that he hasn’t snored throughout our marriage (a blessing!) and now here he is doing it at the end! It’s actually simply congested breathing. Deb said that Craig is so busy visioning internally that he does not open his eyes, even when he is awake. He was able to let Deb know that the morphine is helping him, and we should continue it.

My challenge this morning was coming up with enough help to be able to have someone awake with Craig on a 24-hour basis. The solution at the moment is that my sister-in-law is coming in from Pennsylvania for the night tonight. Her husband may come in after that if we need help. Tomorrow the nurse will reassess Craig to see if having continuous hospice care is appropriate – that assessment will now happen on a daily basis as well.

The day has been gorgeous – sun and breeze through the house all day. We are playing the Long Healing Prayer for Craig periodically (www.projectmelody.com) and other music and in between enjoying the quiet and holding his hand.

We appreciate all the loving and encouraging comments on the blog and on Facebook, and we know that there are many others out there silently praying for us. We feel well accompanied!

Love, Susanne

Pain Starts and Friends Help – June 27, 2009

Nik Tressler and I spent the night with Craig. He was peaceful, but kept twisting and turning in the bed until he looked like a pretzel. But, we kept putting pillows around him, and as long as he seemed comfortable, we left him be. The hospice nursing assistant straightened him out while bathing him, but he seems to still want to curl back up. During the day today, it has been clear that he was beginning to experience pain in his head. We are dependent upon body language, but grabbing his head and rubbing his forehead seem like clear signals! The hospice nurse visited and confirmed that we should begin morphine for him. We started with a low dose spread out at a four-hour interval, but we are now on a higher dose and at every two hours. He’s running a fever of a bit over 100 F. The congestion is very entrenched in his chest. We have seen Craig’s eyes briefly a couple of times, and he does seem to understand us when we talk to him.

A couple from our support groups – Cheryl and Les – stopped by this afternoon. Holly Timberlake joined us later on this afternoon. She and Nik did spiritual visualizations for Craig. She has also recorded one for me that you can listen to on her website, www.todaystapping.com. See the menu on the right side for Susanne’s Journey below the link for Craig’s Birthing Meditation. Holly and Nik sent me upstairs to rest and listen to it while they helped Craig. Very helpful! Nik has just now gone on home, and Holly and I will do the night shift. We’ll have to set the timer for every two hours for the medication, and we are planning to do alternating three-hour shifts of sleeping and waking to keep him monitored.

Love,

Susanne

Different Today – June 26, 2009

After a full, alert day yesterday, Craig went soundly asleep at about 10:30 p.m. last night and slept all night. However, this morning when we tried to wake him, it was clear that it wasn’t really possible to arouse him. He is not in a coma and still responds with facial expressions and noises to the unfortunately necessary things we are doing to him (enema, catheter, bathing, etc.). But, he does not open his eyes and isn’t generally interacting with us beyond a random “okay” once in awhile when we tell him something.

Full-time hospice care ended today after it was clear that Craig was somewhat stable. We still have 24-hour access to the on-call nurses, and he will receive visits all weekend, but friends and I will be monitoring him for challenges. His chest congestion keeps coming and going, as his heart is now apparently too weak to effectively remove fluids from the lungs. Right now, he is in minimal pain as far as we can determine by body language. If that changes, he’ll be assessed and probably medicated. Otherwise, he is now on no medications, food, or liquids.

Barbara T-Q, our art therapist, came by this afternoon and glued the last poem he did in his art journal. We had hoped he’d be able to paint today, but that activity now seems to be done. I’ve played music and prayers set to music for him off and on all day…the same pattern we had in previous days. It’s a beautiful and quiet day, temperature in the 70’s, with the windows open to a light breeze. I now have a desk set up outside of Craig’s room with the same view into the trees that he has from his room. It’s been harder to focus today on doing anything though…too restless to settle down for much of anything for very long.

Thank you all for your prayers for God’s will and Craig’s peaceful transition (and that we have the strength to effectively handle any last minute adventures!).

Much love,

Susanne

p.s. We also appreciate your prayers for daughter Jennifer as she approaches the birthing transition with our granddaughter on July 16th.

Craig Amazes Us Today – June 25, 2009

Hospice and I are somewhat in crisis responder mode – suddenly stopping steroids and anti-seizure meds without tapering is not the usual pattern. So, all night and day we have been wondering what consequences were going to emerge. Instead, Craig was awake and alert practically all day from fairly early in the morning. Lately he has been sleeping most of each day, so this was a big change. His speech was clearer and he actually came out with phrases and sentences instead of just an occasional word. The congestion in his lungs improved, and the coughing significantly decreased. His kidneys were functioning better. His appetite was good, too. So, quite baffling, but very nice!

Craig is now on a soft diet that can be easily swallowed, so I made applesauce this afternoon, one of his favorites. For the first time in a couple of decades – at least – I also made some pudding so he would have a non-dairy version (less congestion). So, we are experimenting with what he can eat and what tastes good to him.

Tonight Craig tried to communicate some more complex matters, much to our mutual frustration. I understood from him that the angels are still doing their “pre-visit” and “preparing” him. They helped him feel better today. And they want us to do three things. Unfortunately, that’s where the communication broke down and all I got was “Let us begin”! The angels are apparently still the same crew, however at some point recently Craig also saw ‘Abdu’l-Bahá (son of Bahá’u’lláh, the founder of the Bahá’í Faith).

So, we have had brief visitors, read, listened to music, interacted with the hospice nurses, reaffirmed with Craig that he wants to continue to stay off the drugs, and wandered through the day. I got out to the grocery and post office and had a nap in the middle as well. It was 90 degrees, so we were shut in the air conditioning all day and then we turned the computers off for a couple of hours while thunderstorms came through. The night nurse is now on duty, and the plan is for me to sleep upstairs again and leave her to help Craig. I got up once last night as needed, but otherwise slept well.

Each morning, our lead nurse visits and we will re-evaluate our need to have someone here continuously. It is too soon to stop it yet. One day at a time…

FYI, some have expressed interest in the quotation I recently posted about Bahiyyih Khanum. Here is a link to the whole article about this amazing woman.

www.claricomm.com/Bahiyyih_Khanum_Tribute.pdf

Love,

Susanne

Medications Stop; 24-hour Care Begins; June 24, 2009

For the last while, Craig’s medications to keep treating one symptom or another kept increasing, instead of decreasing. When the proposal came to us this afternoon to add one more that would keep his lungs and heart functioning, we entered into a consultation with our hospice nurse. Craig is on a high enough dosage of steroids at this point to be very clear in his understanding and clear in his brief responses. He has emphatically indicated that he wants all primary medications stopped.

We were also at the point today where he could no longer safely swallow pills and we would need to crush them and put them in applesauce, pudding…

Hospice licensed practical nurses will now monitor Craig on a 24-hour continuous care basis here at the house to watch for and help us deal with seizures, brain swelling, pain, and so on. We have plans in place to respond as appropriate and needed. He is okay with us administering medicine for pain and to calm his coughing – comfort management only.

He spent the last 2 hours listening to spiritual music and is now peacefully resting. Because he’s already had his full dose of steroids today and his morning anti-seizure medications, it is likely that it will still take some time for both reactions to the absence of medicines to set in and his body to actually start to shut down.

The hospice spiritual care person was here this afternoon and gave me a Reiki treatment after the decision was made…that was helpful. I’m doing my best to stay calm and centered and know that all of your prayers are what is helping hugely.

Much love,

Susanne

The Time of Waiting – June 23, 2009

Sunday was Father’s Day, and Craig was delighted to hear from all his children and his eldest niece. He felt a bit more energetic, sitting up on the side of the bed for two meals. The night then was difficult, with lots of congestion, coughing, and breathing difficulties. This meant little sleep for both of us. Yesterday he was very quiet, sleepy, and minimally responsive. We raised the steroid level yet again, hoping to keep ahead of the tumor growth and swelling.

Hospice and the oncologist evaluated his situation with us yesterday. The vital signs are still about the same, but his lungs are definitely in worse shape. We started a new drug last night to clear out some of the phlegm, so he slept better. Our friend Holly Timberlake also spent the night and took the lead caregiver role, so I slept upstairs in my bed with the door closed and got caught up on sleep a bit. Blessing!

We had study circle here yesterday evening, although Craig wasn’t up to having some of it in his room. The participants still visited him and perked up his spirits though. Our friend Nik also came in during the evening, so he, Holly, and I surrounded Craig’s bed with prayer and love.

I’ve thought a lot lately about the passage below written by Marjorie Morten about Bahíyyih Khánum (daughter of Bahá’u’lláh) and its applicability to and lessons for Craig and I at this time:

“The word mazlúm, which signifies acceptance without complaint, has come to be associated with her name. She was never known to complain or lament. It was not that she made the best of things, but that she found in everything, even in calamity itself, the germs of enduring wisdom. She did not resist the shocks and upheavals of life and she did not run counter to obstacles. She was never impatient. She was as incapable of impatience as she was of revolt. But this was not so much long sufferance as it was quiet awareness of the forces that operate in the hours of waiting and inactivity.

“Always she moved with the larger rhythm, the wider sweep, toward the ultimate goal. Surely, confidently, she followed the circle of her orbit round the Sun of her existence, in that complete acquiescence, that perfect accord, which underlies faith itself.

“So she was in life. And when she came to die her failing faculties threw into sharper and more intense relief the nature of her heart and spirit. It was as if she first let slip away the mechanical devices of the mind and the transient sense perceptions while holding fast to the end the essential elements of her being, unclouded by extremity of bodily weakness and pain. Still her smile spoke strength, serenity, tenderness and the love that is both recognition and bestowal.” (The Bahá’í World, 1932-1934, Page 181-185)

Love,

Susanne

Craig’s Physical World Narrows – June 20, 2009

Craig has spent almost a week now exclusively in bed and in his room. Each day we have asked if he wants to get up, but we will now probably stop asking. His wheelchair is now folded up in a corner, and the parts of our home that were moved to accommodate it are moving gradually back into place. The TV is now outside his doorway so we can watch a movie with him in the bed. It’s a weird transition—not wanting to assume he’ll never get up again, and yet seeing that he just doesn’t have the energy to do so either. The nurse and I yesterday moved his bed so he has a better view out the window and all of us have better access to care for him from both sides of the bed (it was against the wall). I’m beginning to give the caregiver some days off, because there just is not enough to do.

Craig’s vital signs are constantly changing. Heart rate, blood pressure, and temperature are all ranging above and below normal daily. His lungs are more congested, so I’m doing breathing treatments more often and occasionally cough syrup when the coughing is making sleep impossible. He’s generally eating two small meals daily. It’s clear that Craig just wants to sleep and wander in spiritual space, so having physical interventions (bathing, breathing treatments, pills, etc. etc.) are a test. I often simply sit at his bedside and hold his hand…or simply let him sleep (and keep checking whether he’s breathing!).

Craig’s mother and sister drove over from Pennsylvania yesterday for a lovely visit. They had not been able to be here since Easter/late April, so it was good to see them. Betsy, Craig’s support group leader at The Gathering Place, also came for a visit with him yesterday. Music and Art therapies were both canceled this week, but he’s still open to them happening next week…we’ll see.

It’s becoming harder for me to leave Craig for any length of time. I’m wondering too much what is happening in my absence, and he seems to need me close by. I am still taking occasional breaks though – got to the grocery (he’s enjoying the cornmeal mush again), dentist (no cavities), and massage therapist (lovely) this week.

Love,

Susanne

Fever and Coughing – June 16, 2009

The rest of the day yesterday was difficult in many ways. When the hospice nursing assistant and I tried to get Craig out of bed with the lift, he slid out onto the floor (gently). So, we needed the local helpful firemen again to get him into bed. He then chose to spend the remainder of the day in bed.

In the early evening, he began coughing, and breathing treatments, cough drops, Vicks Vaporub, etc. etc. didn’t stop it all night. Finally by the third breathing treatment around 5 a.m., the coughing stopped and we got some sleep. The hospice nurse came and checked him during the night and discovered that he is now running a fever. She ordered cough medicine for him in case we need it from now on, too.

Craig has run a fever all day, although Tylenol is keeping it down somewhat. He ate a piece of toast and some blackberries is all. While it’s possible he has an infection, it is more likely that the tumor is now affecting his ability to maintain a normal temperature. Bonnie Schaefer, a friend from my support group bought and brought me a new humidifier for Craig’s room, since that is helping his breathing. Our old one was way too loud! I caught a 2-hour nap in the afternoon while Craig slept. He has again spent the day in bed.

Our friend Bob Horn stopped by this afternoon and was able to get Craig to laugh a little with his stories. He asked Craig if he is “bored”, to which Craig quite clearly responded that he wasn’t. The spiritual part of this adventure is keeping him interested! John Cunningham is coming this evening along with the caregiver so I can go to my support group. Last week Craig got so sad about me leaving, that I thought having a friend here might help.

Hospice at this point is saying that Craig has fairly extensive healthy physical reserves, so it is taking time for his body to actually shut down. It will likely (not guaranteed!) be a gradual process. Craig and I together with the nurse decided to keep him on the higher dose of steroids, because the swelling in his head and neck is becoming more uncomfortable.

Love,

Susanne

Heavenly Stairs vs. Physical Ones! – June 15, 2009

So, if you picture the stairs that we run up and down all the time, Craig would have easily made it to the top of the staircase sometime this weekend. This morning when I commented that the climbing seemed to be going very slowly, he agreed! So, the only conclusion I can reach is that the heavenly variety works a lot differently than the earthly kind! He says he is still being accompanied up the stairs by the same people though. The emotional push and pull for everyone of this process of preparing for him to die and then him continuing to live is exhausting.

He spent the weekend wandering between here and “there”. Friends flowed in and out visiting, saying prayers, and singing for him. He shed tears often in the process. He spent some time up in his wheelchair. Yesterday we sat on the back porch for an hour or so holding hands and listening to prayers set to music. I shed a few tears then as well.

I realized that I needed to have friends come almost more than Craig did. Sometimes the alone time is a blessing. However, sometimes it’s very hard to be here alone doing everything. It was good to have Holly here with me on Saturday evening/night/morning, and up with us during the night helping. I’m struggling a bit more with taking care of myself right now. Patterns of sleeping, eating, exercising, etc. are all more random. Usually I can get back to sleep after being up with Craig, but at times, it’s difficult once I’m wide awake.

Craig is now very shaky and losing his balance, even sitting on the edge of the bed. So he now requires support and assistance with virtually everything – eating, using the urinal, getting positioned in the bed. I gave the caregiver (and us) the weekend off, but he’ll be back today to help. There’s a pile of bedding to launder and dirty dishes to handle, so good to have help back.

One of the interesting challenges now is that in trying to reduce Craig’s head pressure discomfort from the growth of the tumor, we have increased the steroid levels. The side effects of this drug include increased appetite, thirst, and urination. So, at a time when all of these had begun to significantly decrease, they are back increasing again. This drug is not intended to extend Craig’s life, only increase his comfort, so we are questioning whether that is really true. We meet with our nurse later today and will discuss this together.

Love,

Susanne

Quick Update – June 13, 2009

Craig is still physically with us and spent the afternoon out of bed. After I read him his email messages, many of which moved him to tears, he simply wanted to sit quietly in his wheelchair. At one point, he didn’t want me to touch him or move him and said he was “there”. He seems to be wandering between this world and the next one, zoning in and out and confirmed that he’s still walking up the stairs.

Our friend Nik joined us for a while so I could sleep (last night was a constant series of waking up to help him and finally a breathing treatment from hospice about 6 a.m.). When I got back up, I was able to help Craig express that he’d like Nik to sing to him, which he did, and prayed with him, too. So, peaceful time… Our friend Holly is coming in for the evening and to spend the night, so I’ll have company and help.

Susanne

Stairway to Heaven, June 12, 2009

As Craig is spending more time in bed, he often sits on the edge of the bed with a wooden TV tray in front of him with his meal. Tonight I pulled in a chair and my own tray and we ate together – baked chicken, dressing, carrots, and potatoes. After dinner we drank tea and ate cookies and talked.

Talking these days is mostly Craig saying single words so I have some idea of what he is thinking about. Then I ask questions that he can answer with “yes” or “no” so I figure out what is on his mind. We got talking about the angels. He motioned with his hand that they were higher than him and on his left side. Pleasant is no longer with him (I asked if he had to go back to work, and Craig said “yes”!). His Dad, Kevin, Janet, Becky, Debbie, Pearl, and now Jet Andrews were there tonight.

I asked if he is seeing the angels in the daytime now or still only at night. He is seeing them at both times, but not all of the time. I asked if he sees them only in his bedroom (“no”) or if he now sees them elsewhere in the house and out in the driveway, where he likes to sit in the sun. He said “yes”. I asked if he had seen anyone famous like Christopher Columbus, and he said “no”. I asked if he had seen ‘Abdu’l-Bahá or his heroes Mulla Husayn or Quddus, and he said “Oh!” “No!” and looked very surprised. I commented that maybe that was why he hadn’t left yet, that he was waiting for them. He said “maybe”. The only people he has recognized with him are friends from the greater Cleveland area who have passed on and his father.

I curled up in the bed next to him for a while. At one point, I was laying watching him and he suddenly stared straight ahead and said “Oh! Stairs!” Through questioning I was able to determine that he was seeing a set of stairs floating in the air, that the angels were wanting him to climb the stairs, that the climbing once he began was “easy”, that he was not afraid, and that the arrival “plaza” that he painted in last Saturday’s painting was at the top of the stairs. He said a couple of times that “they are there in spirit”. I asked if they wanted him there in spirit, too. He responded “yes”. He then had a brief time of confusion where he didn’t understand quite where he was and what I was asking him related to the stairs. He said “this may be the last time I see you”. I asked if he wanted me to call and gather the few people he had said could be at his bedside while he was passing, but he didn’t want that. He just wanted quiet.

We played a lot of music all evening. During the time of the stairs, the song that was playing was a Bahá’í quotation, “O MAN OF TWO VISIONS! Close one eye and open the other. Close one to the world and all that is therein, and open the other to the hallowed beauty of the Beloved. (Bahá’u’lláh, The Persian Hidden Words, #12) Amazing!

There is a prayer Craig has been asking for since Saturday, but we have been totally unable to figure out which one he wants. We decided tonight that the angels could probably help him find it, and he smiled in relief and said “yes”.

We did our normal bedtime routine of changing his clothes and getting him in bed. I now have to use the lift to place him in the bed high enough so that his lungs don’t fill with phlegm. We lay together and listed the “roses” of the day. I cleaned up the kitchen from dinner and then went back in to sing the Healing Prayer with him, which I’d forgotten to do. I said a second prayer as well and kissed him goodnight.

It will be a late night – Medical Services is delivering breathing treatment equipment and medicine to him around midnight in case we need it. The sublime and the practical together...

Love,

Susanne

Music, Paintings, and Poetry, June 11, 2009

Much to Craig’s delight, he now has his guitar back that he loaned a friend. It has been his faithful companion since at least college days. The music therapist filled him with joy when she played “his” songs on it for him this week. www.claricomm.com/CraigGuitar.jpg

We’ve been talking about our current hospice painting and poetry but haven’t really shared it, so I’m doing this posting to attempt to do a little of that. On June 6th, Craig painted an abstract depiction of his journey toward the next world. www.claricomm.com/LivingUp.jpg In response to questions from his daughter Michelle and I, Craig shared these words about it:

Living Up

Narrowing passageway

I’m going along it

Traveling on a river

There’s a plaza, an arrival place, a compass [far right of painting]

Traveling here, arriving there

People with me throughout history

Very nice at end, less people

More help at beginning, less at end

I’m in the middle, I want to be at the end

There are things to walk over first [orange lines]

- Craig Farnsworth, June 6, 2009

Today in art therapy, he painted in his art journal a painting he entitled “Soul Completion”. www.claricomm.com/SoulCompletion.jpg The circle represents Craig, and inside are the angels and Craig together, singing, praying, and communing. Today for the first time Craig did his painting in bed instead of up at the table. www.claricomm.com/ArtinBed.jpg

On June 5, I painted “Intimately Touching The Dying Process” www.claricomm.com/IntimateDying.jpg. I then shared these words:

(Context: If it’s so hard, why aren’t you putting Craig in a nursing home?)

So when I began today, I used the flesh tone for the gift of touch,

and then drew with the fingers of touch

In the center part of the gift of having Craig here with me at this time

Is that we can hold hands

I can lay with him,

Put my ear on his chest and hear his heart beat.

And I’m intimately touching his most basic physical needs

As well as his need for emotional and spiritual touch.

We’ve been intimately touching on the gift of our marriage

And I’m intimately involved in helping him speak

And companioning him as he struggles with living and dying

It feels like a privilege at this time to

Help him with his journey

And to powerfully choose with him

How to beautifully die.

- Susanne Alexander, June 5, 2009

This evening we watched a movie that we both enjoyed, and then we listened to Bahá’í prayers set to music for about an hour. Last night was difficult as Craig’s lungs filled up with phlegm and it was a struggle to get him positioned in the bed for greater comfort. It was scary listening to him have difficulty breathing. I didn’t call hospice fast enough for help with him…I’m still learning about doing that! I’m hoping he won’t be coughing as much tonight and we both sleep better.

Love,

Susanne

The Race and Physical Shifts, June 10, 2009

On Sunday (June 7), Craig requested that his daughter Michelle and I represent him on the Craig and Stephanie team for the annual Race for the Place fundraiser for The Gathering Place (our cancer support center). Our friend Stephanie died of pancreatic cancer about 18 months ago. We had about 28 on the team and raised about $1200. It was a bit sad doing it without Craig, that’s for sure, but good to do it nevertheless.

Here are the photos: www.claricomm.com/RaceforthePlace2009.pdf

Our uneventful period ended over the last couple of days, as Craig and I are dealing with things coming out of both ends of his body again. Thankfully, the hospice nursing assistants and our caregiver helped with the cleanup process!

Kim Klein, the hospice nurse, and I assessed Craig today. We have been lowering the steroid level for the last 10 days. However, it’s clear that brain swelling is now uncomfortable for him. He is experiencing pressure around his forehead and temples. There’s also swelling in front of his ears and at the base of the neck. So, the dosage will now ramp back up somewhat.

There continues to be some lung congestion and capacity reduction as well, but he is still sleeping well and the coughing is not generally keeping either of us awake. He’s still sleeping a lot and eating only small amounts, but still recognizing visitors and clearly understanding most of what is said to him.

Love,

Susanne

The Sacredness of Accompanying Craig – June 6, 2009

Each day brings new opportunities for attuning to what Craig is feeling and trying to communicate. He is grieving leaving this world. In particular, this week he has been sad about the relative shortness of our marriage (almost 10 years). And at the same time, he’s sad that the dying process is taking so long!

I reminded Craig yesterday and today about our Bahá’í wedding vow, “We will all, verily, abide by the Will of God.” In fact, we sang it together today (as we did at our wedding) so I would be clear that he heard it. I have asked him to “go with the flow” and not try to agitate for or force his ending here to go at any other pace but what God wills.

My Dad sent me an email this week that included the phrase “in intimate touch with the dying process”. That became the subject of my artwork yesterday with the hospice art therapist. I feel so privileged to be accompanying Craig in this process. The love in his room is palpable. Craig’s artwork yesterday was all about locks and keys. We think he’s searching for a way to unlock the door to the Kingdom of Heaven.

Today Craig has been accompanied by his daughter Michelle, who just arrived for the weekend. For the first time in their lives, they painted together this afternoon. Of Craig’s two paintings, one he described as including many angels gathered together singing. The other was of traveling from a wide place through a narrowing passageway and out to an open “plaza” at the other end. He said he was in the middle, but wants to be at the end.

We got an email yesterday from our dear friend Holly. She said, “every breath is an opportunity for awareness of breathing in the Holy...” So we breathe in and out each day and experience the sacred. She stopped by this evening and brought us dinner, so we breathed together!

The hospice nurse yesterday said Craig has lost more lung capacity since Wednesday, but his heart rate was back to normal. The steroid levels continue to drop. All else seems stable at the moment.

Love,

Susanne

Craig’s Body is Slowing Down – June 3, 2009

This week Craig is spending a lot more time in bed. He’s still getting up for brief periods, but he’s lower in energy. He goes in and out of sleep, and I and various visitors wander in and out. Sometimes I play music. His appetite and body functions are slowing down. He has decided that it’s time to lower the steroids he was taking, so we are gradually ramping them down each day. However, he will likely stay on a maintenance dose to help prevent seizures. He can only communicate in a limited way, but he is still understanding what is said to him.

The angels (many of whom he recognizes) are singing to him some nights, and he’s very happy to hear them. As with most things in Craig’s lifetime, he is struggling with the patience to wait for God’s time to catch up with his! But, we know it will soon.

I’m now sleeping on a fold-out couch in the family room, which is close by his bedroom in case he needs me during the night. I went to the support group by myself last night – very sad to do. His group members and mine both missed him very much.

Our friend Holly Timberlake has created a podcast for Craig to help him with the process of being born into the next world. If you wish to listen to it, the link on her website is http://www.todaystapping.com/craigs-birthing-meditation/. (Free Real Player or Quick Time software seem to be best for playing it)

The hospice nurse just left. For the first time, there is beginning to be some diminished capacity/air flow in Craig’s lungs and some increase in his heart rate. They will monitor him closely over the next few days.

Love,

Susanne

Staying at Home – June 1, 2009

After the last postings, when it was clear that this part of our journey is physically difficult, especially on me, a few people asked why we didn’t go ahead and move Craig to a nursing home. Let me try to address that.

We consider and experience our home as sacred space. It is full of spiritual vibrations, prayer, and love. The view out the back windows is of a ravine full of trees. We can see the sunset down through the trees and catch glimpses of its reflection on Lake Erie in the distance. It’s very quiet, especially in the evening and at night. We can sit and pray together over a cup of tea. I can crawl into his bed with him for snuggling at bedtime. If he’s hungry for ice cream, his favorite flavors are in the freezer nearby. Friends and family can easily stop in or call. Craig’s painting supplies are easily accessible, and the CD player is handy for favorite music. I know when he needs to sing the short healing prayer. If I need to work or rest, my office is upstairs and the bed close by. I just needed some daily help, and I have that now.

The staff at the nursing home seemed caring and helpful. But, overall, I just couldn’t see it working for Craig. The nursing home reeked of urine. The residents and staff make the place full of activity and noise. Craig is losing enough mental abilities, that the new place would be confusing, and it would be difficult for him to rest or figure out new routines and even how to work the bed controls. We think that this time of challenges is actually very short. We are confident we can cope for a limited amount of time. Then I plan to sleep for a couple of weeks!

And…life has unexpected curves, so we’ll continually re-evaluate as needed!

Love,

Susanne