Updates About Howard

Monday, March 8, 2010

2010-03-08T10:39:00.000-05:00

After getting my coffee this morning, I went directly to the studio and began a watercolor painting. I had spent the weekend watching Nita Engle videos in between naps; that with having puttered around in the studio for several days now seems to have gone a long way towards waking up he artist in me.

And so a new journey begins.

As some of you know, before Howard's health took a nosedive, I was actively painting and doing regular posts on my painting blog, publishing a photo of and recording my thoughts about each work once it was finished. I think it's time now to revive that blog and transition to it.

My plan is to give the painting blog a new title and redesign its format, then to move forward with it rather than continuing posts here. That will take a little time, but you can look for it to be ready in the very near future. To find it go to www.diannemize.blogspot.com
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Meanwhile, my heartfelt thanks for sharing this journey with us and for your continued love and support.

Blessings,
Dianne

Saturday, March 6, 2010

2010-03-06T07:52:00.001-05:00

Yesterday was popping with activity: Denyse and her crew came to clean then Brian arrived to get started with our outdoor projects. Brian is due back today to began demolishing the rabbit building.

And I have begun a new project. Shortly after Howard's death, Cynthia suggested that I have a book in this blog report. For several days I've contemplated that and came to the conclusion that she's right, that this blog is a record of a most difficult and most incredible journey and I want it preserved. So I began copying its entries into a Word file towards eventual publication.

As to how I am doing, I can't say things are getting any easier; on the contrary, new realizations hit me every day. But what's happening is an on-going depth of acceptance of my reality and an accompanying, gathering peace. I see Howard everywhere, but these days rather than break into tears, I'm most likely to smile.

Enjoy your Saturday.
Dianne

Wednesday, March 3, 2010

2010-03-03T09:09:00.000-05:00

Howard and I believed (and I still do) that we can understand some real truth about what's going on in our innards if we look at our gestures, body language and actions. One of my mother's formulas was (you're heard it before) "actions speak louder than words;" that one was among her guidances that stuck.

Yesterday, without planning to do so, I found myself reorganizing, sorting and cleaning one little area after another. I've never been domestic and that's not what's going on now: what's really happening is I'm beginning to notice stuff. For one thing, the fabric lampshade donned by our floor lamp was beginning to come apart and had turned terribly dingy. I suddenly noticed it and now it's repaired and brilliant white, brightening the lighting considerably.

It's as of scales are falling from my eyes introducing a new and different clarity.

Have a lovely Wednesday,
Dianne

Monday, March 1, 2010

2010-03-01T11:10:00.002-05:00

Yesterday I drove out to one of my favorite rivers and came home with a hundred photos, a head start toward my diving into my art work. I have spent recent days reorganizing my studio space and this morning I began drawing in my sketchbook, choosing a new one yet untouched so that it will contain this transition all unto itself.

And transition it is. Howard and I always believed true art is not only an expression of who we are, but a reach into something bigger, something that touches where we came from encompassing all that connects us with life. We are all bigger than we know ourselves to be.

Have a lovely Monday,
Dianne

Friday, February 26, 2010

2010-02-26T08:18:00.001-05:00

The depression has lifted. It was a natural phase of the grieving process and like all the other phases, had to be experienced. The trick is not to get stuck in any of those phases but to allow them and to experience them so that healing can happen. There is no place here for denial.

During the past two days, I've been balancing staying in motion with naps and quiet moments. I have arranged with Brian to get the house's exterior repaired and painted. Our color will be Valspar's "Mountain Smoke," a color very much like the bark on our trees. In fact, it is the color Howard and I originally chose when we built the house. At that time the paint contractor messed up, making the color both darker and a bit cooler than we wanted, the final results even after they had corrected their initial screwup. It ended up being close enough not to be a thorn in the flesh, but now it will be on the money.

I've also taken off the wall my mandolin, cleaned it up and ordered new strings for it. And my replenishment paints should arrive today: I suspect soon I'll be picking up a paint brush and begin pushing it.

Enjoy your Friday.
Dianne

Tuesday, February 23, 2010

2010-02-23T06:41:00.000-05:00

I have finished reading Howard's Journals. Early on, one of the first lines she wrote there was "Let journeys be made." A bit later on she wrote, "One can achieve whatever one is capable of imagining."

Throughout her illness above all else I experienced an abiding gratitude for being privileged to have made a near thirty-year journey with this amazing human being. Today, I am far more whole, far more capable of living my own life's journey. It is as if, throughout our years together, my own fragments found unity and all extraneous social impositions melted away, enabling me to become uniquely myself. And in our talks together, she told me the same was true for her. Each of us reinforced what was real in the other. Each of us accepted and loved without exception what was true of the other.

Against all odds, our life together was nothing short of a miracle. From day one and in spite of conventional wisdom, we imagined the impossible and moved forward to make it happen. This morning I look out our study window and find comfort and hope in the penumbra I see.

Enjoy your Tuesday.
Dianne

Sunday, February 21, 2010

2010-02-21T09:18:00.000-05:00

I have begun to make some decisions toward finding some way to redirect my grief. First, I decided to have painted and refurbished the exterior of our house. As those who have visited us know, I've had to abandon our yards and the outside in general. So I've taken the step toward getting things spruced up a bit.

Next, I've ordered replenishments of my oil paints along with a light weight outdoor easel. Along with a new paint box Bill and Vickie gave me for Christmas, this should get my artistic juices out of storage.

And every day, I'm taking Maggie out for a little ride in the car, spacing errands out so that I can do one per day. Beyond that, I've begun walking a bit. Both these moves help get me away from the recliner and in motion.

And Bill and Vickie will be coming for the weekend of my birthday in March. Being with them never fails to bring healing.

Have a restful Sunday.
Dianne

Friday, February 19, 2010

2010-02-19T06:41:00.000-05:00

Thursdays are difficult. Ironic that Howard died on a Thursday, a day that for many years had symbolized freedom for us. During the twenty-four years of the art school's life, Thursday was our day off. Then during Howard's illness, Thursday was the only weekday we had to ourselves. It became a day we looked forward to.

Neither of us tended to pay much attention to most anniversary dates, but so far each Thursday has greeted me with a golf ball knot in my throat. By day's end yesterday that knot had turned into a cannonball.

Toward afternoon I was seized by a giant fear that I would lapse into whining and consequent deep depression capable of rendering me useless. I realized that claiming depression was indeed an option, but would contribute nothing to my well being nor to my continued growth as an artist and as a human being.

Most important now is recognizing when depression is moving in, then label it: that's half the battle to prevent it totally consuming me.

Have a happy Friday.
Dianne

Tuesday, February 16, 2010

2010-02-16T18:31:00.000-05:00

Over our nearly thirty years, Howard and I saw only four occasions that required one of us be away from the other. One of those was for her a two-week stretch of rehab after the first hospitalization nearly five years ago. During that time, exhausted from the previous two weeks of her having been in intensive care, I spent many hours napping in my recliner getting myself recovered by the time she was allowed to come home.

In that same recliner these days I am reading her journals and napping, a factor probably contributing to an emotionally unconscious expectation that she will be returning home. I was jolted into reality yesterday morning when I was jarred awake by that expectation. Intellectually I knew she is gone and will not return, but I had not taken it in as an emotional reality. Needless to say the raw reality brought forth another flood of tears.

Today I'm sad and angry that we were cut short too quickly, that so much was still left to be said and experienced.

Odd all these levels of realization and grief. Seems like a new one is surfacing every morning.

Enjoy your Tuesday evening.
Dianne

Sunday, February 14, 2010

2010-02-14T06:16:00.001-05:00

Reading Howard's journals and listening to the music we recorded together--especially the singing where her voice is so distinct--has opened me up to floods of tears during these past several days.

Yesterday morning I had a revelation: I realized that during those last days of Howard's illness--perhaps since that first TIA--I had unconsciously somewhat numbed out my feelings in order to both survive and to retain the ability to care for her. Not until Wednesday did I begin to thaw and today it continues. In short, I'm really feeling the the full intensity of a broken heart, something I could not afford to feel during those last days before her death.

Seems like every day unveils another level of grief and realization of the enormity of my loss. At the same time, and oddly, there's some healing accompanying all this. But damn, sometimes it just aches like hell.

All this is a part of the natural process. I know that and I accept that, but I thought it worth noting. Actually when I became conscious of the numbing thing, it shocked me until I realized, well of course: no other route was open to me if I held up and I was bound and determined not to collapse.

During the past two weeks, folks have sent me floods of cards and emails, every single one special to me, making me aware that the love continues to flow my way and for that I am grateful. Bear with me folks: I will emerge from this, but I accept that it will take a long time, not only because of the deep grief, but also I am still extremely tired. Body, mind, spirit and heart all need time to recover.

I will continue these posts as least every other day for a while longer, especially because I continue to get messages from you saying you need to know how I'm doing.

Have a happy Valentine's Day.
Dianne

Friday, February 12, 2010

2010-02-12T11:29:00.000-05:00

I have discovered a treasure-trove. Not only do I have Howard's journals in which she has written practically every thought she ever had, but I found cassette tape recordings we did together back in 1981, a time when we were still playing our guitars (and I mandolin as well) and singing together. There it is, our voices in vibrant harmony, just as has been our life together. And in listening to these, I began to really experience the magnitude of my loss and the tears began to flow again.

    But even though tears are the manifestation of a heart broken, they are cleansing, too, keeping a being from exploding all at once. They've been coming in phases, first during the accepting that Howard was going to die, then just after her dying, then whenever something so-very-Howard would meet me face to face, and now in my fully allowing myself to comprehend how huge is my loss.

   There is comfort, though, in having her own words written by her own hand and hearing her own voice during a time before she became ill. And these is peace within the grieving, knowing the suffering is over.

So I am okay. There is healing in the tears as well.

   Have a happy Friday,
   Dianne

Wednesday, February 10, 2010

2010-02-10T11:21:00.000-05:00

Monday I hardly knew what to do with myself. I spent a greater part of the day pacing and talking to Maggie about being totally lost. She paced with me and listened intently to every word. Finally, needing to do something, I telephoned our lawyer and made an appointment to get the legalities of Howard's Will wrapped up. And that we did. Keith York has been our lawyer for more then twenty years. His guidance from the beginning has enabled us to set our affairs in order early on so that either of us would be totally protected should the other die first. And so he is handling everything with competence and efficiency.

Once home I realized I needed to come up with some projects so I reorganized one section of the linen closet, then had a salad, watched a movie and turned in. Yesterday was a bit better: I sorted and reorganized a kitchen cabinet, took a nap, grazed, organized a section of the studio, took a nap, grazed, organized my studio work table, took a nap, grazed--you get the pattern. All that and three long phone calls from friends and family made the day more manageable than Monday.

Today I began my day reading Howard's journals which go back to the 60's around the time she and I first met at Young Harris College. Reading them, I found myself on another level of healing. I took a long bubble bath, then went back to the journals and so far, my day is going well. Maggie and I are going to run some errands this afternoon and I have a movie reserved for tonight.

I know I have a long ways to go towards healing and becoming rested. Taking the advice of family and friends, I am demanding nothing of myself beyond taking good care and eating right.

Have a happy Wednesday.
Dianne

Monday, February 8, 2010

2010-02-08T07:21:00.000-05:00

Maggie and I returned home yesterday afternoon. I didn't want to make a public announcement that nobody would be at home so I didn't announce when we'd be leaving for our visit with Bill and Vickie.

It was a loving, healing, magical time with our family. They fed me, pampered me, entertained me and gave me plenty of space and time to be quiet and sleep. Vickie's culinary skills are exceptional to begin with, but over the top while I was there with something special and prepared from scratch at every meal.

One side of me wanted to stay another week, but I knew the longer we stayed, the more difficult it would be to come home and try to regroup. With it being Sunday afternoon, their returning to their normal business routine on Monday, it was an ideal time to head back and do what needs to be done.

It's time now to begin the difficult stuff: the Will and all the business stuff made necessary when someone dies. I will go at this slowly, one thing at a time and make sure I get plenty of rest and restoration between tasks.

Oh, and this: during the ten months Howard was in hospice, knowing it was not possible for me to paint I put my art on hold. Saturday morning after that tremendous rain, looking out the glass doors to their deck, the clouds were just beginning to break over a horse farm adjoining their property. I took out my watercolor travel kit and while Vickie was making breakfast, did a small watercolor of that scene. It was my first painting back. The family rejoiced and so did I.

I gave the painting to them. There will be more.

Enjoy your Monday.
Dianne

Friday, February 5, 2010

2010-02-05T09:36:00.000-05:00

Maggie and I have spent the past two days sleeping in, not doing much else other than a bit of grazing and drinking coffee. I think I'll need a lot of sleep before I can even think about regrouping.

Enjoy this wet day.
Dianne

Wednesday, February 3, 2010

2010-02-03T05:56:00.001-05:00

On Monday, Maggie and I took our first day out. It had been two months since I had been to town and so I asked Cathy to tag along with me to help me get my sea legs. I had decided that Maggie was going to get groomed, so I made an appointment for her and off the three of us went. Cathy and I knocked about a bit while waiting for Maggie, including getting hamburgers from MacDonalds and going to Pitts Park to enjoy them.

Maggie was a different dog after her grooming, proud and prancing, happier than I had seen her in weeks. She's still spending more time in her bed, but she's no longer looking for Howard and no long under my feet every second, so I think I can safely say she has turned the corner toward recovering.

Once home, I realized how exhausted I am so I made straight for the recliner and have spent the majority of my time there since. A little later on, I'll let you know about when we'll be spending some time with Bill and Vickie.

Last night I remembered that a few years back Howard had read some of her poetry on cassette tape. I wanted to hear her voice back when she was well, when her thought processes were still her own and so I took a chance and listened to one of those tapes. I was a little nervous about how I would react, but I needed a reminder of her before she became so very sick. And it was the right thing to do.

As I listened, a renewed peace came over me and that was the voice soothing my head and heart as I fell asleep. It was exactly what I needed to hear.

Howard obituary was in yesterday's local paper. HERE it is.

Have a happy Wednesday.
Dianne

Monday, February 1, 2010

2010-02-01T07:00:00.002-05:00

Last night Maggie and I spent our first night alone in the house and I think we did remarkably well. Oddly, it was the first time since Howard's death that I noticed there was no oxygen concentrator purring and pulsing. That sound had become so much a part of our environment that it was like an engine that kept everything moving at a steady pace. While Bill and Vickie were here, I had not become aware of its absence.

Early on in our time with hospice, I began to listen to the teachings of Tara Brach downloaded from podcasts of her weekly talks. One thing I learned was to focus on the sounds around me whenever my head became inundated with rushing random thoughts. Doing that, the chatter in my head calmed down and I was able to be in touch with the moment, settle down and fall asleep.

Naturally, when my head hit the pillow last night, there thoughts began to race, threatening to entrap any rest during the night, so I automatically began listening. That's when I noticed the how really quiet our house is now, but it is a peaceful quiet and by listening to the peacefulness, I was able to fall asleep.

Enjoy this first day of February,
Dianne

Sunday, January 31, 2010

2010-01-31T13:15:00.000-05:00

Bill, Vickie, Maggie and I have enjoyed a quiet, lazy weekend together, reminiscing, reflecting, and taking in the reality of the moment. They both have pampered me the entire time, Vickie taking over the kitchen, preparing our meals, cleaning up, not allowing me to do a thing but relax. It's been a healing time for all of us.

We woke up yesterday morning to ice on the trees and our generator running. Power was out for about three hours, but we didn't know the difference. It was a world of beauty outside, especially this morning against a clear, blue sky with sun sparkling on the ice covered trees.

They will be leaving this afternoon. Maggie and I will be traveling down to Monroe to spend a few days with them sometime next week. Maggie's still having a difficult time of it, staying right with me wherever I go.

I continue to be at peace even though my heart is broken. I honestly think I went through several stages of grieving during the last few weeks of Howard's life when I realized that her death was coming very soon. She was gone many hours before her body stopped breathing and her struggle had been so intense for so long that the experience of watching her slip away and the calm that came over her gave to me a depth of peace I would never have expected.

Have a wonderful Sunday afternoon.
Dianne

Friday, January 29, 2010

2010-01-29T09:39:00.000-05:00

I am doing well. My brother, Bill, has been with me since yesterday morning. His wife, Vickie, will be joining us today for a weekend of family time together.

Nurse Gwen and Nicole were absolutely wonderful. They arrived very shortly have Howard's death. Gwen took care of everything, including me. She and Nicole did an amazing job preparing Howard's body for the trip to Emory and seeing it through until the transport was made.

Maggie's having a difficult time, staying close to me and looking around the house for Howard. Bill and I have been giving her special love and lots of cuddling. And she ate her breakfast this morning.

Thanks so much for all the loving emails that have flooding my way. I'm not going to try to answer them, but I want you all to know how very special to me those messages are. What an amazing host of earthly angels surround us.

I will make few most blog posts to let you know how I'm doing before I transition back to my painting blog.

Have a wonderful Friday.
Dianne

Thursday Morning, January 28, 2010

2010-01-28T06:38:00.001-05:00

Howard left us this morning at 6:15. She had been unconscious for most of the day yesterday and all during the night. She is at peace. I am at peace.

Many years ago, both Howard and I donated our bodies to Emory University Medical School. Howard has requested that there be no funeral nor memorial service, rather that sometime down the road we gather together for a dinner toasting her life. And both she and I request no flowers. Instead please send a memorial donation to our favorite local organization and that is

The Circle of Hope Shelter

For Battered Women & Their Children

P. O. Box 833

Cornelia, GA 30531

God bless you all for the love you continue to show us.
Dianne

Wednesday Morning, January 27, 2010

2010-01-27T07:55:00.000-05:00

Howard continues to linger. She was much quieter yesterday. During the night her pulse rate was 101 and her blood pressure elevated. Her fever is beginning to rise a bit. There is now an occasional congestive sounding cough as she sleeps. She woke during the night for a short time during which she was able to swallow an ativan which has become crucial to keeping down agitation. She's taken only water for the past several days.

Mostly now our house is quiet. Maggie and I are spending a lot of time snuggling. Nurse Gwen returned yesterday after having been out for a week with flu. It is comforting to have her back.

Have a good Wednesday.
Dianne

Tuesday Morning, January 25, 2010

2010-01-26T05:18:00.002-05:00

I have thought long and hard about what I'm about to share with you. I've decided to share it so that if you someday find yourself as caregiver for someone you love, someone who's dying, you might not be shocked, rather absorb the mysteries of dying as being a reversed course of the mysteries of birth.

It is a week today since Howard's turn toward death began. This morning she remains among us very much like an infant. Over the past week, I have watched as she has withdrawn inward preparing to die. Her physical existence alternates between long hours of deep sleep and fewer hours of a kind of being awake. During the week, those "awake" hours have included many hallucinations or what appear to be hallucinations. At first, we had some brief lucid conversations, but day by day those grew fewer and fewer. Her facial expression alternated between child-like and being very old.

Between yesterday afternoon and midnight, she was in her "awake" mode, but there was no communication left. She would follow my instruction for taking morphine under her tongue, but she could not process a question. She talked constantly, but the conversation was inside her head. It changed moment by moment as if there was no connection between the moments. Her words often got switched around or misplaced. She spat out her ativan and when I said, "If you spit it out, it can't help you." She said, "So which."

I realized that whether I'm in the room no longer matters. She's like an infant in the crib, babbling, sometimes agitated, but mostly just chatting internally. If I weren't so close it would be fascinating to watch, and even in my grief I still can't help but be amazed.

She finally fell back into sleep at around 1 a.m. where she still lingers in our world.

I have wondered over the years if nature doesn't contain all the clues we need about life and death with the sprouting of spring, the flourishing of summer, the receding of fall and the bleakness of winter which always, always turns back to spring. I think perhaps I will pay closer attention.

Have a good Tuesday.
Dianne

Monday, January 25, 2010

2010-01-25T12:00:00.000-05:00

Howard is still holding on though by a thin thread.

Have a good Monday.
Dianne

Sunday Afternoon, January 24, 2010

2010-01-24T14:38:00.000-05:00

I do believe the lucid moments are gone now. Howard has drifted into alternations between deep sleep and dream-like occasional slow, quiet indistinguishable talk. Sometimes she will make a gesture with her hand or turn her head as if looking ahead somewhere. She no longer calls for me and didn't recognize Becky this morning although I think she recognized Nicole.

I have been able to rest for longer periods of time and Maggie is staying close to me, herself being unusually quiet.

Have a peaceful Sunday.
Dianne

Saturday Afternoon, January 23, 2010

2010-01-23T13:04:00.002-05:00

After another major TIA yesterday afternoon, Howard went into a deep comatose sleep for thirteen hours. Then at 3 a.m., she woke me, needing repositioning. For the next three hours she was in an semi-unconscious chatter, then again drifted in an out of sleep. During all that time, again I was expecting each breath to be the last.

She was semi-lucid during Nicole's visit but during nurse Becky's visit, she could not stay focused and was often confused. Most of the time when she's awake, she cannot field questions.

My thought this morning is that Howard is approaching dying the same way she approached her doctoral dissertation: exploring to exhaustion every available avenue in detail and in a dozen languages. Becky said Howard is so unusual, she cannot predict a pattern. Her vitals are low and she has not had any medication, including morphine, since 3 a.m. Yet, at this moment, she is in a deep sleep.

Cynthia and Cindy brought me some food for nibbles: I can only eat a couple of bites at a time and Maggie will not eat her breakfast.

Love to all of you who keep sending us messages. And thanks Mary, Betty and Bill for toasting us at dinner.

Enjoy your Saturday.
Dianne

Friday Afternoon, January 22, 2010

2010-01-22T16:18:00.000-05:00

Howard remains more or less the same yesterday's post, though weaker and with fewer lucid moments. This morning between 4 a.m and 10 a.m., I was expecting every breath to be the last, then she regained consciousness. Nicole gave her a bath, tidied up and worked her magic as only Nicole can do. Five minutes after Nicole had left, Howard slid back into some duel zone. About two hours later, she experienced another major TIA resulting in the hospice nurse, Doris, raising her morphine dosage. (Unfortunately, nurse Gwen is ill with some crud.)

She is requesting morphine more often.

Thanks so much for all the sweet messages of concern and love. There is no time to respond to each, but know I continue to receive them and during Howard's lucid moments am passing them along to her. What love and caring surrounds us!

Enjoy your evening.
Dianne

Thursday Late Afternoon, January 21, 2010

2010-01-21T16:41:00.000-05:00

Howard's condition remains the same. She has refused all heart medicine and all lung treatments, except for oxygen. She will allow the extra morphine only periodically, but certainly not the every two hours allowed. She has occasional moments of being lucid, but mostly drifts from one kind of unconscious episode to another. I am convinced she is searching for a path of exit.

Thanks for your continuous concern about us.

Have a good evening.
Dianne

Late Wednesday Afternoon, January 20, 2010

2010-01-20T17:02:00.000-05:00

Howard's condition remains unchanged. Hospice nurses and CNAs will now be coming daily for which I am grateful.

Howard needs me with her most of the time so there are very few opportunities to get to the computer. I will keep you updated as I can.

Enjoy your evening,
Dianne

Tuesday Night, January 19, 2010

2010-01-19T18:26:00.000-05:00

Howard has been drifting in and out of consciousness all day. It is the first day since late April that she has not wanted to get up in her wheelchair; in fact, this morning she asked me to take it out of the room. There is no air movement in the lower half of her lungs and restricted flow in the upper half.

The arthritis and muscle pain have become increasingly severe as the day has worn on, to the point that she finally asked Gwen for some pain relief. Consequently, we are increasing the morphine to every two hours, the first of these having been given about forty-five minutes ago. Finally, she seems to be settling down a bit.

It is now nearly 6:30 p.m. on Tuesday. I will update you as I am able to. Meanwhile, thanks so much for your messages, prayers, and just being there.

Dianne

Tuesday, January 19, 2010

2010-01-19T11:56:00.000-05:00

Howard is not doing well. Nurse Gwen just left. She told me she'd be surprised if Howard makes it through the winter and that, at this juncture, she could go at any time or could rally yet again.

Have a good Tuesday.
Dianne

Monday, January 18, 2010

2010-01-18T09:10:00.001-05:00

Yesterday for Howard was a mix of repeats from recent days and a few hours of clarity, focus and being very much herself. There is a roller coaster fluctuation now, the result being there is no way to know what pattern is in play.

Last night just as I was taking in her 8 p.m. meds, she experiencing an excruciating pain across her chest. Thinking it might be another indigestion pain, she took Gaviscon, but the pain persisted so she asked me to call hospice. Becky, the weekend nurse, was an hour arriving because she had to come from Clarmont. Just minutes before she arrived, the pain faded. After checking Howard out, Becky suspects it might be post-polio muscle spasms in her chest and to Howard that made a lot of sense.

Becky was here for more than an hour, making sure that things were calm before leaving. It was after midnight before our lights finally went off. The night was for Howard another of pain and inability to communicate her needs. So we begin our Monday a bit fatigued.

Enjoy your beginning of the week.
Dianne

Sunday, December 17, 2010

2010-01-17T07:00:00.001-05:00

Yesterday and last night for Howard were a repeat of the two days and nights before. Last night it took her more than an hour to be able to tell me what she needed. Things don't seem to be getting any better.

Enjoy your Sunday.
Dianne

Saturday, January 16, 2010

2010-01-16T10:28:00.000-05:00

Howard had about two hours yesterday of being relatively alert even though, during that time, she still tended to nod off. The rest of the day was a repeat of Friday and her night last night was one of the roughest ever.

One of the most trying things happening now is that during the night, she is largely incapable of communicating what she wants. When I ask her a question, there is a two-to-three minute pause before she attempts to answer. During that pause she might drift into sleep so that I must ask the question again. That often confuses her: why would I ask the same question twice in a row. I am guessing that she thinks she's answered when in fact she hasn't. Because of this, it now takes a good half hour just to get her re-positioned. Compare that with just three weeks ago when I could do that in a couple of minutes and crawl back in bed.

The pattern of the past two days resembles what happened during the first TIA. Respiratory therapy folks might have a more definitive answer for me, but I assume that this, indeed, was yet another TIA. If not, that's certain what it appeared to be.

I cannot tell yet what her day today will be like. So far, she is slightly more focused than the past two days but extremely uncoordinated. It is becoming more and more of an effort to get her from bed to chair and back again. Gwen had the hoyer lift brought back in, but Howard hates it and so far refuses to allow me to use it. So in that respect we're in a bit of a catch-22.

Cindy brought in yesterday a huge batch each of scrumptious veggie soup and equally delicious chicken salad. That will certainly keep us well-fed over the weekend.

Have a happy Saturday.
Dianne

Friday, January 15, 2010

2010-01-15T07:02:00.000-05:00

Howard could not wake up again yesterday. Much of the day she spent in bed even though she attempted to be up in her chair for a short time. While up though, she continuously nodded off, was disoriented and somewhat confused. Her manual dexterity was severely compromised.

She tried to eat supper at the table, but nodded off to sleep between every bite. She's so damned independent that if I called to her, she'd declare most emphatically she wasn't asleep, so rather than call to wake her between bites, I'd talk to her as if she were wide awake. That worked more effectively, believe me.

Her night was another rough one, needing re-positioning and Biofreeze nearly ever hour.

The reason Howard wanted to eat at the table was that Gail had brought in a tempting veggie casserole with homemade venison sausage. And her persistence to finish eating before crashing into bed tells you what a mighty fine meal we had.

Enjoy your Friday.
Dianne

Thursday, January 14, 2010

2010-01-14T06:45:00.000-05:00

Howard's day yesterday was exceptionally good for where she is right now. She was more alert and like herself for more hours than since the TIA. But by 5:30 she was totally spent. And the night was nothing short of turbulent with her needing attention every hour. Arthritis pain and shortness of breath were the main culprits. At least the Skelaxin is keeping down muscle spasms thus far.

The further away she gets from the last dose of Decadron, the more severe the joint pain, especially in her hips and legs. And so here we are again.

One fun note was that our Pizza Santa appeared again yesterday. And Howard was able to enjoy hers before crashing. Thanks, Linda. You did it again! And guess what we'll be having for breakfast!

Have a good Thursday.
Dianne

Wednesday, January12, 2010

2010-01-13T06:33:00.002-05:00

With the exit of Decadron, we have the reappearance of joint pain. For muscle spasms, yesterday Gwen brought in a prescription of Skelaxin that seems to work well enough. But joint pain in her hips was Howard's primary culprit last night. And dropping Decadron has not curbed the tendency to break into tears, the real reason Howard chose to delete it. So during the night last night we had both pain and tears nearly every hour and sometimes more frequently. Biofreeze has reappeared on the scene. Howard was able to be up for only about three hours yesterday.

We had a feast for dinner. Cynthia brought in beef stew, lima beans, corn bread and cut veggies with olives. As sick as Howard is these days, with the tummy problem solved, her appetite is good and she can eat anything she wants as well as enjoy a glass of wine. So we ended our day well fed and happy.

Have a good Wednesday.
Dianne

Tuesday, January 12, 2010

2010-01-12T07:37:00.002-05:00

Howard's episodes have calmed down for the moment. She didn't have one all day yesterday even though she did have a brief period of fallout from the last one. During the morning she was alert and in good enough shape to get a hug from Betty when Mary brought in some supplies. Of course as happens when anybody comes in, her social mode took over. But the Betty-hug was good for them both and good for me, too.

Muscle spasms returned during the night last night. Howard has weaned herself off Decadron and is now refusing it altogether. It's been two days since she had the last 1/2 dose that had been, in that small amount, keeping down the spasms and joint pain. I am concerned that she's going to be enduring this pain in addition to everything else, but that has been her choice and I respect that.

Enjoy your Tuesday.
Dianne

Monday, January 11, 2010

2010-01-11T08:27:00.003-05:00

Both Howard and I were able to sleep for about three hours yesterday morning. For those of you concerned, I do catch naps whenever I can, especially when she's resting. Christie said her best advice after her first child was born was "sleep while the baby's sleeping." Believe me, I can do that. And I always turn off the phone ringers when either of us is sleeping.

Howard is resting right now. She had about three hours of calm yesterday before experiencing another episode. This one might have been fallout from the earlier one though because it began to fade toward 1 a.m. Nurse Gwen says what's happening to Howard is typical of end-stage COPD.

Nicole will be back this morning. And there's still snow on the ground with 10 degrees F. outside. Whatever happened to Georgia winters?

Enjoy your beginning to the week.
Dianne

Sunday, January 10, 2010

2010-01-10T07:10:00.002-05:00

This post will be short: I'm operating on about three-hours sleep and so the head is not in the mood for very much thinking.

Howard went into another episode at around 2 p.m. yesterday. It lasted all night, but she began to pull out of it at around 6 a.m. and by 7, was pretty much over it. The pattern resembled the TIA episode of January 1, but was not as severe. Nevertheless, it was no fun.

Enjoy your Sunday.
Dianne

Saturday, January 9, 2010

2010-01-09T06:48:00.003-05:00

Howard had a smooth day yesterday followed by a good first part of the night, but by 3 a.m. she began to get restless. She didn't sleep very well beyond that so we were up by 6 a.m. This morning she is badly short of breath and feeling somewhat agitated.

I realized after yesterday's post that what really happened Wednesday night was another TIA episode. I failed to put it all together at the time, but she experienced an almost identical pattern to last Friday's event. Funny how when in the middle of these things it's sometimes impossible to identify what's actually happening.

And for those of you non-Georgians who asked, yes we did get snow, but only about an inch. Temps remained below freezing yesterday so it's all still there. The drive way is still covered--it's a good thing nobody is due.

Have a fun Saturday.
Dianne

Friday, January 8, 2010

2010-01-08T09:10:00.002-05:00

Howard has had a rough 24 hours. Yesterday she simply could not wake up and during the total two or three hours she was awake, she was disoriented and sluggish. She had a terrible night, but once we got her going this morning, things seem to have smoothed out. At this time, it appears she might have a better day.

Her verbal skills are hampered mostly when she's half asleep. Fully awake, she has relatively good command of what she's trying to say, but when she needs something during the night or during a nap, trying to communicate is virtually impossible. Part of our problem last night was her not being able to tell me what she needed, my having to guess and not always getting it right.

A wise sage from several hundred years BC said that whatever thoughts prevail in our minds will govern our behavior. When Howard is not able to communicate, I have to constantly check in to be sure my thoughts are about the essence of who she is and not feeling sorry for myself or getting too obsessed by what might be going on. We have been so closely attuned for these nearly thirty years that even when she's having the most difficult time, she perceives where I'm coming from. If it's a weak place in me, it makes her insecure because that weakness inhibits my own essence. A word to the wise.

Enjoy your Friday.
Dianne

Thursday, January 7, 2010

2010-01-07T05:01:00.002-05:00

Howard's day yesterday was one of lethargy and needing sleep. She spent only a few hours up and those were, from her point of view, non-productive. She was restless off and on all night, finally needing to get up a bit before 4 a.m.

Her verbal skills, however, were working fairly well yesterday. Seems they fail her most when she's half asleep or extremely tired. For the most part, though, she was not hampered during the day by not being able to communicate.

Nicole is still out with her child who had a complex hip surgery. Christie, though, is doing a magnificent job, every bit as competent as Nicole and quite a card at that. She's due today rather than tomorrow because of the predicted snow here.

Enjoy your Thursday.
Dianne

Wednesday, January 5, 2010

2010-01-06T07:31:00.003-05:00

The nurses and I were happy to see Howard enjoy a relatively calm day yesterday. But last night was a different story. She decided not to take her Decadron last night in an attempt to begin taking every other day (rather than daily) the half-dose she's been on since Christmas Eve. I don't know if that's why she had such a rough night last night or if it would have been that way regardless.

She woke up extremely short of breath and feeling disoriented. The TIA has affected her verbal skills. Last night she asked for a bowl of flashlight which I interpreted to mean a bowl of cereal. All night she struggled to communicate, coming out with phrases that were so far removed that I could not interpret what she needed. The frustration from that exacerbated her restlessness and made her agitated.

Nurse Gwen said yesterday that the verbal skills might or might not come back. TIAs affect folks differently so there's no predicting what will be.

We're bracing for some real winter weather in north Georgia. Stay safe and enjoy your Wednesday.

Dianne

Tuesday, Januar 5. 2010

2010-01-05T07:36:00.004-05:00

All day yesterday Howard was lethargic and a bit unfocused. She slept three hours in the afternoon (and so did I for that matter), but was ready to crash by 5:30 p.m., wanting nothing to eat beyond an earlier snack of goat cheese, crackers and hot chocolate. She slept until about 9 p.m. when she waked up hungry. I made us both a breakfast which she ate heartily. Afterwards, I put her back to bed and she slept hard all night.

Those who've experienced TIAs have told me how they do odd things to the brain. But the nurses and others tell me that things will level out within a few days.

It's damned cold in north Georgia. Some arctic blast from up north got sidetracked in our direction, giving us temps only polar bears can thrive in. Hope it doesn't stay long enough for them to migrate our way.

Have a happy Tuesday.
Dianne

Monday, January 4, 2010

2010-01-04T08:17:00.002-05:00

Howard finally took a three-hour nap early in the afternoon Sunday, but woke up lethargic and a bit withdrawn. Within a couple of hours, she had somewhat pulled out of that, but after eating most of her supper, was ready for an early bedtime.

She was restless during the night and woke up having difficulty breathing and, again, lethargic.

Hospice still has her on daily visits. The weekend nurse, Becky, was here yesterday, happy to see Howard out of bed and to find that her vitals had returned to acceptable. Nurse Gwen plans to be here today when she will most likely decide to return to weekly visits now that the crisis seems to have past.

This episode obviously took it's toll on Howard, but she is still with us. I know the time will come when my report here will be otherwise, but for now I'm grateful for another extension of her time as an earthly being.

Have a good Monday.
Dianne

Sunday, January 3, 2010

2010-01-03T05:28:00.007-05:00

Not only did Howard remain awake, she is now in reverse mode: she was not able to go to sleep at all during the night, that in spite of her usual doses of morphine and a sleeping pill. I, however, did sleep except for the times she needed turning over or the usual meds. But at 3:45 she waked me, wanting to be put in her chair to begin her day. This is the first time she's been up since the TIA episode on Saturday morning.

Her blood pressure seems to be stabilizing, but I will remain cautious throughout the day today. My observation is that this has left her more anxious and more easily agitated. At least for now though she has re-entered earthly life. Her oxygen is still set on 6.5 with the same saturation readings when it was set on 5 prior to this event.

Enjoy your Sunday.
Dianne

P.S. If you are not familiar with TIA, as I was not, go HERE for a good explanation.

Saturday Night, January 2, 2010

2010-01-02T19:50:00.002-05:00

Good news. Howard woke up when the weekend hospice nurse came in at around 3:30. She's been awake ever since and though weak is almost back to her old self. Three nurses now have confirmed that what happened was a TIA. It might happen again or not. But it appears this crisis is past, though I remain cautious. Her blood pressure was far too low when the nurse was here, so we've got an eye on that. She remains in bed.

She ate well tonight and we have enjoyed a few giggles.

More tomorrow.
Dianne

Saturday, January 2, 2010

2010-01-02T08:12:00.000-05:00

At about 8:30 last night Howard opened her eyes, looked at the clock and commented that it was too late for Gwen to be on duty, but wanted me to get one of Gwen's associates (Howard's language) to come here quickly. I thought that a sign that she must be dying. The short is that nurse Joan, whom we know now to to be the night nurse and whom we'd not met before, was here shortly after 9.

The minute Joan walked into the bedroom, Howard woke up and instantly went into (what I call) her social mode. I couldn't believe it. So Joan was able to see nothing of what had been going on all day (in one sense I could have spanked Howard). She did discover Howard is running a fever of 101+. She stayed for about an hour, observing. Toward the end of her visit, Howard began to slide into a sort of nonsensical chatter, but remained relatively alert the entire time Joan was here.

Once Joan left, she began to slide back into that drugged-like state and then fell back into sleep. It's like this: when anybody walks into this house, her social mode causes an adrenalin surge that masks her illness. It does wain a bit if the person stays long enough, but this tendency has been like a red herring throughout this illness. Sometimes I wonder of folks think I'm over-exaggerating what I observe day in and day out (not that what folks think matters).

But time after time I've seen this happen and it even surprises her. Last night before she drifted away, I commented on it. She responded that she didn't know this side of herself, that never had she realized she had such a strong social mode. But as a minister's kid, the training went deep.

This morning at 6 a.m., she was alert for about fifteen minutes, long enough to drink some apple juice and be turned over. During that time she was relatively lucid, but that began to fade as she drifted back into that semi-comatose sleep.

Hospice weekend nurse Becky will be checking on her later today. Meanwhile, we wait.

Enjoy your Saturday.
Dianne

P.S. Read last night's post if this one caught you off guard.

Friday Night, January 1, 2010

2010-01-01T19:15:00.002-05:00

Howard began the day with extreme shortness of breath, the worst yet. After a breathing treatment she needed to go to bed. She fell into an abnormally deep sleep. When Christie came in at 10 to bathe her, we had trouble getting her awake. She refused the bath and became terribly agitated. She needed her oxygen increased from 5 liters to 6.5 where it has remained all day.

It took nurse Gwen making a special trip here to finally calm her down, but not five minutes after Gwen had left, she went into a semi-comatose state in which she remained for most of the day. I managed to get her awake enough to eat a small supper, but she kept nodding during bites. She simply cannot stay awake, even when she's trying and she has had no drugs that would do this.

Gwen suspects a mini-stroke since earlier Howard complained briefly of a severe headache. Whatever is happening, her brain is not happy and neither is her body.

I will keep you updated as I am able to.

Dianne

Friday, January 1, 2010

2010-01-01T06:49:00.002-05:00

We're having a rough morning this morning. Howard has had trouble breathing all night after a fairly calm day yesterday. So I must make this short.

Have a happy New Year.
Dianne

Thursday, December 31, 2009

2009-12-31T05:37:00.003-05:00

Better now means what a bad day meant back in the summer. Howard enjoyed several hours of being comfortable yesterday even though she was obviously short of breath, but her alertness began to wane toward mid-afternoon and by the time she had finished her supper, she was ready to crash.

Her night alternated between restful sleep and agitation. By 1:30 a.m., she begin asking if it were time to get up and reluctantly managed to slide back into sleep off and on until 4 a.m. when she could no longer tolerate staying in bed and so that's when we began our day.

Care Medical brought in another Hoyer lift late yesterday. It occupies the south end of the front porch which will be its home until we must turn to it as the only method for moving Howard from one spot to another. She resents it yet recognizes its potential for helping me take care of her.

When she was stricken with polio at age 13, she had stripped from her so many physical abilities around which she had built her childhood: bike riding, violin playing, roller skating and more. After polio, her childhood attitude became one of becoming independent within the physical limitations polio had left her. The hardest part of this illness for her is losing that.

Each piece of equipment we've had to add has, to her, underlined that loss. Tethered to an oxygen tube all the time, slip sheets, bed pans, the power chair, having to be bathed and dressed by another human--all this being totally antithetical to her image of being independent has challenged her emotional energy.

Yet she retains her sense of humor and continues praise life rather than negate it. For us the key to it all is perpetually finding a way to accept what is in our moment rather than bristling and resisting. It's not always easy.

Enjoy the last day of this year.
Dianne

Wednesday, December 30, 2009

2009-12-30T07:57:00.003-05:00

Howard's birthday was mostly about sleep, catching up on what we both missed the night before. In between naps yesterday, she was fairly comfortable though obviously short of breath and this morning she needed a breathing treatment the minute she waked up.

Nurse Gwen advised us that if Howard agrees, it is time to bring back the Hoyer lift. Howard's strength failing rapidly makes maneuvering her more of a problem. After a lengthy discussion, Howard agreed to have the lift brought in for me to learn to use so that it would be available in case of an emergency. This to her is yet another symbol of her loss of independence, one of the most difficult issues she's having to face.

Last night she had longer stretches of rest except between 2 and 4 a.m. when she was so agitated, she had to get up for a couple of hours. But this time we were able to go back to bed and grab a bit more sleep before beginning the day.

Post polio syndrome is a cruel disease. I once thought cancer and Alzheimer were the most cruel, but I did not know then the ramifications of post polio and it has been given the least research of all. Nurse Gwen is constantly on a learning curve.

I was so lacking in sleep yesterday I neglected to tell about the fantastic BBQ dinner and home roasted peanuts Cynthia brought in Monday. Howard's over indulgence is what got her into trouble with that stomach pain Monday night and so now we've got to keep a sharp eye on proportions.

Enjoy your Monday.
Dianne

Tuesday, December 29, 2009

2009-12-29T12:33:00.002-05:00

Today is Howard's 78th birthday.

She rallied for a couple of hours yesterday afternoon, then crashed at around 6. She slept for a couple of hours before being awakened by a sharp pain on the upper left side of her stomach. I called the hospice nurse on duty who speculated it might be indigestion and advised Gaviscon which did give some relief. But we had another rough night, up from about 1 a.m. until 6 before Howard got calmed enough to go back to sleep.

We both slept until about noon today.

Nurse Gwen is on her way here at this moment.

Have a happy Tuesday,
Dianne

Monday, December 28

2009-12-28T08:00:00.002-05:00

This post will be short. It's been an active morning and spare time is at a minimum. Howard had a turbulent night and early morning, but is calmer now. Yesterday was more or less a repeat of Saturday.

Enjoy your Monday after the holidays.
Dianne

Sunday, December 27, 2009

2009-12-27T05:54:00.002-05:00

Howard's day yesterday had a rough beginning, but after a three-hour nap mid-morning, she was a bit more comfortable. Her afternoon was thankfully uneventful, but by 6 p.m., she had to give it up. While I was preparing an early supper she sat at the table, dozing with her head propped on her hand. She was so spent that it was a chore getting her into bed. Once again, though, she was wide awake by 4:30 a.m. and so began our day today.

She has grown visibly weaker during the past week, her balance tenuous at best. Shortness of breath is becoming more of an issue as is her ability to swallow liquids without getting strangled.

Thanks to all you who've sent Christmas greetings. My time at the computer is limited so I've not been able to make replies so please consider this round robin my reply to each of you.

Have a happy Sunday.
Dianne

Saturday, December 26, 2009

2009-12-26T06:35:00.004-05:00

Our Christmas Day yesterday was a needed quiet one, both of us taking two long naps during the day. Howard was uncomfortable most of the day, but was able to enjoy our Christmas dinner. She gave it up just afterwards to spend a night of alternating periods of rest and agitation. She was awake by 5:30 a.m., ready to get out of bed.

For several days and nights now, she's been experiencing long periods of extreme agitation which she blames on Decadron, so Friday she took it upon herself, without consulting with nurse Gwen, to begin tapering off the drug by cutting her dosage in half for a few days. The agitation does seem to be subsiding with this half-dose cut, and so far only the back pain has begun to return.

I am concerned about the outcome of this, but it is Howard's decision. For her, the nature of the agitation is worse than the physical pain because of the mental and emotional agony involved.

This is meant to be a report, not an analysis. The swelling in her feet and legs continues to worsen and she is weaker and has less stamina than ever. But the fight is still strong and that is what, I believe, matters most.

Enjoy Boxing Day,
Dianne

Friday, December 25 Christmas Day

2009-12-25T07:00:00.002-05:00

Howard managed to cope yesterday, but had another turbulent night last night, ending with our getting up at 4 a.m. in an attempt to get her comfortable.

Outside it is raining and windy, the lights have already blinked once, but our generator relieves us both of any anxiety that we will lose power. I can't help but think of it as our real Christmas gift, even though it was installed in the spring. Those earthly angels that made it possible knew it was a real need, but could not have known the extent to which it has given us ease. We are forever grateful.

Late yesterday, Cindy brought us Christmas dinner--her out-of-this-world pork tenderloin (two of them), roasted vegetables and fruit salad, enough to keep us fed for three days. Of course we dove into it for our Christmas Eve dinner and will do so again for Christmas Day dinner today. What a treat!

Have a happy Christmas Day.
Dianne

Thursday, December 24 Christmas Eve

2009-12-24T08:01:00.002-05:00

Howard had a rough night. She's struggling with extreme restlessness, shortness of breath and trouble staying focused. Her body is tired and weak: muscles that obeyed her last week refuse to follow orders.

And so this Christmas Eve, we're both holding on to a flow of inner strength and peace.

Have an especially happy day.
Dianne

Wednesday, December 23, 2009

2009-12-23T07:16:00.002-05:00

Howard is not rebounding as we would like her to. Yesterday Gwen drew a diagram showing that with every incident of Howard over extending, she will recover somewhat, but never to where she was. So too much activity could actually hasten her decline.

This knowledge revises my attitude about allowing visitors to stay beyond Gwen's thirty minute limit. I had thought it more important for Howard to enjoy a visit for as long as she could hold out, but Gwen's explanation counters that, so we'll all need to pay closer attention to the clock.

Howard slept fairly well last night even though she had a couple of restless periods. I am concerned this morning about swelling in her feet and legs in spite of Lasix before bedtime last night.

It's almost Christmas. Enjoy your day.
Dianne

Tuesday, December 22, 2009

2009-12-22T07:10:00.002-05:00

Howard remained tired all day yesterday. We both opted for a long nap midday. Even so, it was a slow go all afternoon. By sundown, we decided to settle down to watch Biography of the Earth, but not more than five minutes into it, Howard crashed so I put her to bed for the night.

My impression is that she's trying to hang tough for the Christmas season, but doesn't have enough strength to pull it off. She's needing extra breathing treatments and having many moments of anxiety, not knowing what she wants.

Her feet and legs were swollen to a greater extend than I've seen at all, but Lasix brought most of that down during the night though it kept me moving. In between Lasix calls she slept fairly well until our alarm went off at 6 am. So at least we have one day beginning at its usual time. The swelling, however, is returning rapidly after just an hour and half of her being up. This has been an evolving pattern.

All this sounds downright depressing, yet there is a light hearted happiness in our home.

Have a fun Tuesday.
Dianne

Monday, December 21, 2009

2009-12-21T06:02:00.002-05:00

Howard slept a greater part of the day yesterday. She was up for a couple of hours early to mid-afternoon, then totally crashed. But by 4 a.m., she was restlessly awake and we've been up ever since.

I'm cutting this post short today because I'm too sleepy to think.

Have a happy Monday.
Dianne

Sunday, December 20, 2009

2009-12-20T05:30:00.002-05:00

Howard is struggling this morning.

Yesterday, we had a lovely visit with Bill and Vickie. They brought pizza for lunch and presents galore. Howard was in her element, surrounded by family whom she loves and who love her, all aware of how fragile she is yet none of us making that the focus. Rather, we laughed and played and hugged, all making the most of a short but powerfully important time together.

But Howard began to show signs of fatigue so I set her up for a breathing treatment while Bill and Vickie and she said their goodbyes. Once her treatment was finished, she was ready for bed. After a three-hour nap, she was able to be up only a brief time for supper, then she totally crashed.

She had a restless night and was wide awake again at 4:30 a.m., ready to get up though obviously still very tired and having trouble breathing. So today is reserved for being quiet, giving her a chance to reboot.

I had a slight mishap Friday night. Maggie caused me to take a tumble, spraining my right wrist. We didn't need this, especially right now, but it's here and gets figured into the formula for making the best of where we are.

Enjoy your Sunday.
Dianne

Saturday, December 19, 2009

2009-12-19T10:27:00.004-05:00

Not much change to report except that Howard didn't rest quite so well last night, but today she is feeling very much like the past two days and that's one we'll take.

There was a lot of activity yesterday, first with Nicole's giving Howard her bath, then with Denyse and her cleaning crew scouring the place, then Lilith (bless her, in the cold rain) brought in our groceries. A long nap ensued for the two of us.

We're awaiting the arrival of Bill and Vickie, both of us excited about seeing them. And they'll be bringing lunch with them so we don't have to do a thing but play Mahjongg Solitaire as we wait.

Hope yours is a lovely Saturday.
Dianne

Friday, December 18, 2009

2009-12-18T06:14:00.002-05:00

Although still visibly weak, Howard had a comfortable day yesterday and slept rather well last night, but typical of recent days was wide awake by 4:30 a.m., ready to begin her day. And so we did. Also a part of this pattern is a long afternoon nap for both of us, not unwelcomed.

One word to our friends who typically telephone during the Christmas season: with our house being so tiny, whenever Howard is resting, I turn off the phone ringers so she won't be disturbed. And I always turn off the ringers at night. So don't be alarmed if you try to call and there's no answer.

Have a happy Friday.
Dianne

Thursday, December 17, 2009

2009-12-17T06:17:00.002-05:00

Howard continues to hold her own. The burned stomach lining seems to be mostly healed, enabling her to be more comfortable than since Thanksgiving when all this latest setback began. Yesteday she was at ease most of the day and slept relatively well during the night. Nevertheless, it is still sensitive and the whole episode has left her weaker.

We are delighted that she will be able Saturday to enjoy lunch with Bill and Vickie, my brother and sister-in-law. It has been our family tradition to celebrate Christmas in our home with them and their two boys, now grown, each with his own family. This year with Howard being too fragile to tolerate a full family gathering, each family unit will come for a brief visit on a different day, beginning with Bill and Vickie.

On another note, the book is doing well. Amazon now has a "look inside" preview available and is setting up an author's page for Howard. If you haven't yet seen it on Amazon, go HERE.

Meanwhile, enjoy your Thursday.
Dianne

Wednesday, December 16, 2009

2009-12-16T06:04:00.003-05:00

Howard's still making progress, even if slower than either of us approve of. Her day yesterday was very much like Monday with only a few moments of discomfort. She remains weak, though, and has lost some stamina. Her engine runs out almost suddenly and usually before 7 p.m.

Nurse Gwen was here yesterday, her routine visit. She said Howard's breathing passages are now clear of the infection. She's a bit concerned about the swelling, but we're doing all that can be done about that, at least all that's tolerable for Howard.

Howard slept fairly well last night, but was wide awake by 4:30 a.m., couldn't stay in bed another minute and so that's when we started this day. Seems to me her breathing is a bit labored this morning. Perhaps, though, the breathing treatment she's doing at the moment will correct that.

And I have forgotten to mention that during those high winds last week, we lost power for two hours. That lovely generator kicked on within seventeen seconds and except for its purring, we hardly knew the difference. We're still overwhelmed by the love and caring that made that generator possible.

Have a wonderful Wednesday.
Dianne

Tuesday, December 15, 2009

2009-12-15T07:06:00.004-05:00

I have good news. Howard's day yesterday was considerably better than in at least two weeks. Only a few times during the day did she feel any discomfort, even though she was extremely tired at by dark, ready to call it a day. She rested fairly well last night with only one episode. So we've got our fingers crossed that this trouper of ours has, once again, pulled herself out of trouble.

Nicole brought in our little tree yesterday, then pulled down our decorations. While Howard was having breakfast I managed to arrange on it little ornaments crocheted by my grandmother and our favorite little red apples. Only about a third of the lights are working, but it doesn't matter: we have a tree.

Mary came by for Howard to autograph her book, a surprise Christmas present for Mary's mother, Betty. She brought us for supper a delicious soup. Earlier Cindy dropped by with a lovely little dragonfly ornament that found its place at the top of our tree. It is our angel this year.

And with the warmer weather, we spent some lovely times on the porch. So things are looking up.

Enjoy your Tuesday.
Dianne

Monday, December 14, 2009

2009-12-14T08:15:00.003-05:00

Howard felt better yesterday, but remained weak and a bit unfocused. Her breathing was better as well as the stomach; however, throughout the day she still experienced waves of stomach symptoms. Even though she allowed herself to get too tired before heading for bed, she rested better last night, needing only routine attention. So overall, she is showing signs of improvement from this latest bump in the road.

I suspect, though, she is in yet another stage of decline. Her entire body shows signs of water retention, especially her face. And for the past several nights, swelling in her feet and legs has not completely subsided. There are other signs which because I respect Howard's dignity I won't discuss here.

With each decline there has been need to revise routine. Nobody told me to expect this so I hope that information will be helpful to any of you who might find yourself as caregiver for somebody you love.

Hospice is invaluable: their help make this task possible to do and their concern for the total family is comforting, but they can't prepare a caregiver for everything. Perhaps each patient's needs determines what has to be done. Nevertheless, it is important for caregivers to know that anything might change at any moment and with that change comes a revision in routine--routine for the caretaker's daily doings as well as the patients. It's best not to anticipate anything, rather just to respond to the moment.

Enjoy your Monday.
Dianne

Sunday, December 12, 2009

2009-12-13T06:40:00.002-05:00

Howard's day yesterday had moments of quiet, but much of the day she vacillated between being totally miserable and feeling halfway ill. She has become quite weak fighting this stomach problem along with everything else.

She was able to get periods of rest during the night, but was awakened several times by a burning sensation in her stomach. Apple juice continues to work wonders to calm things down, but it lasts only so long. We should have bought stock in Apple & Eve.

Our little Christmas tree made it from storage to our front porch where it sits unattended. Nicole's little daughter and step-son made for us a Christmas tree shaped card and two tiny stockings each with our names. Bless them both. They wanted to make sure we were ready for Santa.

Have a lovely Sunday.
Dianne

Saturday, December 12, 2009

2009-12-12T12:34:00.003-05:00

This must be short. Howard had a turbulent night last night after a day of feeling just so-so. I'm heading towards putting us both in for a long nap. More tomorrow.

Enjoy your Saturday.
Dianne

Friday, December 11, 2009

2009-12-11T08:46:00.003-05:00

Howard had a really rough day yesterday, beginning with shortness of breath episodes which wore her out, then the stress of that caused the stomach problem to become worse. So we had a day of it. She began to feel better by supper time, but was so tired from the day that she went to bed right after she ate. Gail brought us a pot roast and cooked mixed greens from her "yarden" for our supper. Howard ate well.

She has developed a laryngitis from no obvious cause. She first suspected it might be caused by the Advair, a powder she must inhale twice a day, but this morning she's not sure about that. There doesn't appear to be any infection, just hoarseness.

Some good news is that Under the Diamond Pulse is now available on Amazon. We're working now on providing samples for visitors to look at, but that will come a bit later. Nevertheless, it's there and ready to be discovered by the world. We would love it if any of you would be willing to write it a 5-star review. The more good reviews she gets, the more likely the book is to be discovered and purchased. Hint. Hint. Go HERE to find it.

Remember, all the poetry is at Howard's website HERE . The book is a more refined version with a lot more color, a new font and relocation of many of the illustrations. It is a totally beautiful book.

Have a lovely Friday.
Dianne

Thursday, December 10, 2009

2009-12-10T06:43:00.002-05:00

Howard still has a ways to go. Yesterday, she was relatively comfortable during the earlier part of the day, then began to feel a bit rough towards the end of the day. She rested okay during the night with short periods of discomfort. Her needing attention during the night is so much a routine now that to keep mentioning it gets redundant. It's just a part of the care she needs.

Tuesday, Gail came by with our groceries and for our Christmas, the most gorgeous poinsettia we've seen yet. And she brought Howard a bottle of merlot and a bunch of bananas for her birthday, coming up shortly after Christmas.

The poinsettia is at the moment the only sign of Christmas in our house. I've not found time to put up our tree and our traditional Christmas decorations and I may not. What matters most is Howard's care and my keeping myself healthy to provide it, so the Christmas tree might have to stay asleep throughout this particular season.

But through the depths of our now leaf-bare woods, we can see the Christmas lights of our neighbors. Maybe this year that's enough.

Have a happy Thursday.
Dianne

Wednesday, December 9, 2009

2009-12-09T08:29:00.002-05:00

Things are tuning around with this stomach episode. Yesterday, for the first time in days, Howard was relatively comfortable most of the day. She did feel a number of minor pains and burns, but showed definite signs of improvement. She was able to stay up for most of the day and began to eat a bit more.

Nurse Gwen was here yesterday for her regular Tuesday visit. She is making some minor adjustments to Howard meds in an attempt to curb the tendency toward tears caused by Decadron and to help control the swelling in her legs and feet.

From the beginning of this most recent illness, we've been dealing with side effects: a drug does wonders in one area and wrecks another, putting the body in constant stress and creating dilemma after dilemma of which kind of suffering to choose. Decadron has done wonders to relieve her joint and muscle pain, but it causes mood swings and these uncharacteristic outburst of tears that Howard detests. Then we encounter this Cipro incident which probably saved her life on the one hand, but caused several days of misery on the other. These combined with the side effects of morphine give one pause for thought.

Yet there's the ever existing issue of quality of life--which do we choose?

Have a happy Wednesday.
Dianne

Tuesday, December 8, 2009

2009-12-08T08:27:00.002-05:00

Yesterday, we saw small increments of improvement in Howard's stomach. She still felt horrible most of the time, but she was not nearly so sick as she had been since this thing happened. She was in bed most of the day as we continued the routine of apple juice (odd, I know, but it soothes like nothing else), soft, starchy foods and patience.

She had a relatively good night even though her back began to hurt somewhat. This was probably caused by her having spent so much time in bed. This morning, the stomach issue seems to have turned a corner, but we're still cautious.

Howard favorite apple juice is Apple & Eve individual cartons. I thought I had her stocked up by having Amy get two 8-packs on Friday's grocery run. By yesterday, though, she had made history out of those. Lila, bless her, got four more 8-packs and dropped them off on her way home from work yesterday. Just in the nick of time, too: Howard had finished the last one minutes earlier. We don't understand what it is about apple juice that seems to soothe and help the stomach lining burns heal.

Enjoy your Tuesday,
Dianne

Monday, December 7, 2009

2009-12-07T07:21:00.003-05:00

Although Howard had periods of relief yesterday, the stomach problem was still very much with her. Oddly, it is relatively calm when she's lying down, and even though she hates spending any of the daylight hours in bed, that's where she spent most of her day. She had a relatively good night and this morning seems a good bit improved over yesterday.

Nurse Gwen is not sure what has happened, but suspects Cipro severely burned the lining of Howard's stomach. Nexium is preventing excessive acid being formed and antacids, along with soft, starch foods, are keeping her stomach as soothed as possible. If this is correct, it will take some time for the lining to heal. Oddly, apple juice is about the most soothing of all. Howard sipping it constantly.

So this one is going to take time. What we're looking for now is gradual improvement and so far that appears to be what we're getting.

Have a happy Monday.
Dianne

Sunday, December 6, 2009

2009-12-06T08:05:00.002-05:00

Happy first birthday to our grandnephew, Jaxon.

Yesterday was a day of struggle for Howard. We spent the entire day trying to keep her stomach calm enough just for her to cope. She was able to sleep for a couple of hours mid-morning and again in the afternoon, but the minute she began to stir, the burning and knotting in her stomach gave her fits. Finally by nighttime, she began to feel enough relief to sleep and this morning, things seems to be turning around.

All this has made her weaker and has exacerbated the shortness of breath as well as worn her out emotionally. My goal today is to keep her as quiet as possible and to continue this regimen of antacids and small portions of light food.

Our thermometer this morning read 20 degrees F, a bit chilly for a front porch sunrise watch, but it's not half bad from our study window.

Have a happy Sunday.
Dianne

Saturday, December 5, 2009

2009-12-05T08:39:00.002-05:00

After a rough morning yesterday, Howard was finally able to get several hours sleep in the early afternoon and woke up feeling better. Deleting Cipro and giving her Nexium helped, but has not yet brought her back to where she should be and she continues to need Gaviscon nearly every hour. She did enjoy two or three hours symptom-free in the early evening and she slept much better last night.

But she woke up this morning with a return of yesterday's symptoms as well as shortness of breath. However, the swelling in her feet is only about half of what it was when I put her to bed last night.

I talked with nurse Gwen early this morning. She's advising continuing what we're doing in hopes that eventually Howard can pull out of this. And about half hour ago, things did settle down enough for her to fall asleep. At the moment, she is resting.

A bit of human goodness came Howard's way last evening with the arrival of two long stem red roses and a card that read "Somewhere an eagle soars." Howard was deeply touch by this gesture even though neither of us has any idea of who the sender is. So mystery person, if you're reading this, Howard sends you a big hug and thanks.

Enjoy your Saturday.
Dianne

Friday, December 5, 2009

2009-12-04T06:58:00.003-05:00

Howard is not doing well today. She had a terrible night last night with stomach burning and restlessness. Neither of us got very much sleep at all. I just talked with nurse Gwen who told me to discontinue the Cipro, the suspected cause of the burning stomach and start her on Nexium.

The swelling in her feet and ankles continues and this morning she is having increased shortness of breath. For that, she's been ordered to stay in bed for two or three days, but she's not likely to obey that one. At least we can keep her feet elevated.

Yesterday was a rough day, too. All day she was lacking in energy, having episodes of shortness of breath and in general, just feeling lousy. Hopefully, taking her off Cipro, adding Nexium and keeping her feet elevated will turn things around.

Enjoy your Friday.
Dianne

Thursday, December 3, 2009

2009-12-03T06:57:00.002-05:00

Under the Diamond Pulse is now published! Within a week it will be available on Amazon. com, but can be purchased from Create Space right now by going HERE. In fact, Howard will receive a larger percent of the royalty if the book is purchased from Create Space rather than Amazon who takes a larger chunk. The price at both places is $29.95.

It is a beautiful book, laced throughout with lovely reproductions of Howard's little paintings. Deborah and Hank Smith did an outstanding job designing it and they were a joy to work with.

Howard is delighted. This is the body of work that defines, more than any other, who she as become. The poems are rich and meaningful and like the Psalms in the Old Testament, each reading leaves one a bit more enlightened and enriched. And I can't tell you how thrilled I am to have this book published while Howard is still with us.

Her day yesterday was very much like Tuesday, a roller coaster of ups and downs. We're still not able to reduce significantly the swelling in her ankles and feet. Nevertheless, it's a happy day in our home.

Have a super fine Thursday.
Dianne

Wednesday, December 2, 2009

2009-12-02T07:24:00.002-05:00

Howard's day yesterday was up and down. Her morning began on an upbeat, but as the day progressed she experienced several episodes of shortness of breath and anxiety. But she had another good night's rest, though wide awake at 5:30 a.m. She continues to improve from the respiratory infection thanks to that miracle drug, Cipro.

Gwen confirmed yesterday that what got Howard was indeed a bug rather than leaf mold. She listened carefully to Howard's chest, detecting still some wheezing but satisfied there is no pneumonia. Whew!

A big concern now is extreme swelling in her feet and ankles. Up until now, swelling would go down during the night, but during the past two nights the swelling has lingered to about half the size of when she went to bed. She's considering now going to a daily dose of Lasix hoping to counter that.

It's raining torrents in north Georgia this morning, so no sunrise coffee on the porch. But the new downspout is working beautifully so we no longer have the sound of Toccoa Falls at the corner of our porch, just the constant patter of rain all around.

Have a safe Wednesday.
Dianne

Tuesday, December 1, 2009

2009-12-01T06:40:00.002-05:00

Even though we don't dwell on Howard's limited time with us, there are marker days when we marvel over her beating the odds. Today being the first of December is one of those. We didn't know back in April when hospice became a part of our lives that she'd still be here for the Christmas season. That very fact is our most special Christmas gift that I've mentioned so often in this blog, our gift of time together.

And yesterday was an good day for Howard. The frequency of coughing is way down and throughout the day, she was unusually energetic. And ever though I had caught the same crud, it was a happy day for us both. We still don't know whether we both got hit by leaf mold or if some bug found its way to us, but the worst seems to be over. It's left me with a bit of laryngitis, but nothing more serious.

Howard slept well again last night, but was wide awake once again by 5 a.m. We're calling this our new schedule. Seems our schedule gets revised about every two weeks, but who cares--we're just moving along and changing trains at every new connection.

Nicole was back yesterday. Her dad still has not regained consciousness, but she was on the job, as competent as ever. It's good to have her back with us.

Have a good Tuesday.
Dianne

Monday, November 30, 2009

2009-11-30T06:50:00.003-05:00

The congestive sound of Howard's cough has greatly improved, but she's coughing more frequently. So she's not yet out of the woods even though much of the infection seems to have cleared up.

She enjoyed a relatively good day yesterday, spending a lot of her time going through her poetry notebooks, marking poems significant enough to merit a second read and possible future publishing. Her poetry notebooks reach back into her teens, but she was her most prolific during the past forty years.

She had another restful night last night, but was wide awake again by 5 a.m. and you can guess what we did: we headed to the porch with coffee and watched the penumbra. Right now the horizon is that pinkish orange, appearing to dip down and lift the sun into view.

Enjoy this Monday,
Dianne

Sunday, November 29, 2009

2009-11-29T07:11:00.002-05:00

Yesterday Howard continued to show gradual signs of improvement from the infection that grabbed her several days ago. Her energy levels were up and her spirit was lively throughout the day. We both got a mid-afternoon nap, making up for waking so early, and so overall it was a good day.

This morning, again she was wide awake just before dawn and again we bundled ourselves up and headed to the porch with our coffee to watch the sunrise. The outside temperature was around 40 degrees, discernibly warmer than the past couple of days. Our noses knew the difference, too. And it was a glorious morning.

The skies were just beginning to glow a pale cobalt with not yet enough light for us to find our coffee cups, so I lit a couple of candles to allow us to see, sufficient but faint enough not to distract from the sunrise. We talked and talked and talked as the sky slowly woke up. And that's how this Sunday began at our house.

Enjoy your Sunday, too.
Dianne

Saturday, November 28, 2009

2009-11-28T06:46:00.003-05:00

The Cipro went to work right away so that within hours, Howard began to improve. The cough is still there, but it is much better, not sounding as harsh and congested as before she got began taking the medicine.

We still don't know what caused this infection, whether a germ migrated toward us or whether mold spores from the leaf clearing day found a way into her lungs. And she's still not out of the woods (no pun intended), but responding so well to the medicine, I have hope Cipro will completely clear out the infection.

Once again, this morning she was wide away by 5 a.m. and ready to begin her day. Yesterday, she went back to bed mid-morning and slept until noon. That could very well be a new pattern. Otherwise, though, last night she rested well. Other than the cough, she had a relatively good day yesterday, though a bit restless.

She is so excited about her new book. We found out yesterday that if we find no more errors in the next proof arriving any day now, the book could very well be on the market by Wednesday. I'll keep you posted here plus I will send out e-mail announcements to all on my mailing list.

This book is Howard's dream come true and I can't tell you how thrilled I am that it's becoming a reality. Thanks to Cynthia who spearheaded this thing by asking her cousin, Deborah Smith, whether anybody might be interested in publishing it.

Deborah and her husband, Hank, took it on as the producers of the book. And a special thanks to our dear friend, Laura, an editor by profession. Laura went through each poem with tedious care and helped us rid them of worrisome warts.

When if is finally available, you will see the beautiful job Deb and Hank did designing it, giving the poetry a lovely yet tangible place to live, to be absorbed and to be loved. Meanwhile, we wait.

Have a fun Saturday.
Dianne

Friday, November 27, 2009

2009-11-27T07:40:00.003-05:00

Our Thanksgiving began as a light-hearted, fun day and ended with a thump.

We had decided that we'd order and have delivered a super-dooper pizza for our Thankgiving meal. We intended to order it late Wednesday afternoon, put it in the car to keep cool and away from critters, then break it out on Thanksgiving day. I ordered two mediums (so we'd each have our own) with double loads of everything we like. I met the delivery at the gate and walking down the driveway, that aroma got the best of me so I walked right past the car and into the house announcing our pizza had arrived. Howard and I together did a 180 and began devouring it within minutes.

And then we had pizza for Thanksgiving breakfast, pizza for Thanksgiving lunch and smoked pork chops and Allen's fine collards for Thanksgiving dinner.

But during the late morning Howard's cough began to get worse and productive. Christie called nurse Gwen who found a pharmacy open and had hospice nurse Joan deliver Cipro right to our door. But it was 7 p.m. before they managed to get the medicine to us. By then Howard was getting really sick, so I put her right to bed. And that was the thump that our day ended with.

The good news is that she slept well and already feels better this morning, so apparently the Cipro went right to work. I think we might have dodged a bullet here.

Howard was awake this morning by 5:15 ready to get her day started, wanting to get bundled up and head to the porch to watch the sunrise over a cup of coffee. And it was 32 degrees outside. Not to worry--she was toasty warm underneath a sleeping bag, quilted coat and scarf. And so we watched as the horizon of a dark sky began to glow, faintly at first, then gradually turn to a silver light that seemed to spread like wings around the earth and we decided that's not a bad way to begin a day.

Enjoy your Friday.
Dianne

Thursday, November 26, 2009--Thanksgiving

2009-11-26T08:28:00.002-05:00

Yesterday morning was a struggle for Howard mainly because of shortness of breath. But with the help of breathing treatments, by afternoon she was feeling much better. She had a relatively restful night, but was awake by 6 a.m., restless and wanting out of the bed as soon as possible.

I bundled her up in the sleeping bag and her old blue plaid quilted coat for us to go on the porch and watch the sun rise and have our first cup of coffee. It was a subtle sunrise this morning, but beautiful nonetheless and our woods were full of their early morning magic.

That cough continues although is restricted now to early mornings and late in the evening. Howard doesn't want me to call Gwen about it--not yet, and so I've promised her I'll wait for her green light to do so. One way for her to retain her autonomy with my role as caretaker is for me not to push my will onto her, and so I won't.

Cathy dropped by yesterday with Allen's world's-best-cooked collards, an annual ritual among us. And Brian did an excellent job repairing our gutter's downspout, replacing two panels of screen on the porch and installing our new mailbox. So it was a good day.

Have a lovely Thanksgiving day.
Dianne

Wednesday, November 25, 2009

2009-11-25T08:04:00.002-05:00

Even though she showed some signs of improvement, yesterday was another rough one for Howard. At issue now is an increase in shortness of breath episodes accompanied by a developing and congestive sounding cough. Nurse Gwen was here yesterday, but Howard didn't want to address the cough with her, rather she spent her time focused on having Gwen explain again those high BUN numbers as well as to examine an expansion in her lower belly region that has been causing her some concern.

Gwen thinks there might be some swelling in area of the liver. She had already explained some weeks ago that the kidneys are not working as they should and that there are beginning stages of congestive heart failure.

The good news is that Howard continues to be relatively free from joint and muscle pain. That has enabled her to sleep better at night. Typical nights lately require her needing a turn over only three or four times during the night. That's a big improvement.

Lilith did our grocery run yesterday so we're now well stocked for at least two weeks. And Bryan is coming today to repair a gutter downspout that took a tumble during one or our recent torrents of rain. Christy will be Howard's bather all week and that's a happy thing. Nicole's father remains in a coma so it remains unknown when she'll be returning to work. But Christy is every bit as competent as Nicole and is a dear as well.

And today we're expecting the final proof of Howard's poetry book. If we find nothing else needing changes, the printing process can actually begin today.

Deborah Smith, a notable writer and co-owner of Belle Books, is with her husband, Hank, producing the book. She's done an outstanding job putting it together and has been a joy to work with.

While you're making preparations for Thanksgiving day, enjoy this day, too.
Dianne

Tuesday, November 24, 2009

2009-11-24T09:17:00.003-05:00

What began for Howard yesterday as a rough day leveled out somewhat by evening. Throughout the day she was weak and short of breath, but by evening became more settled and felt a bit better.

Christy came to bathe her shortly after 10 a.m. And Christy will be taking care of her while Nicole is out. Nicole's father remains in a coma after having open brain surgery for three aneurysms so more than likely, Nicole will be needed by her family for the remainder of the week.

Keith, Arnold Drug's wheelchair technician with his assistant, Butch, came shortly after noon and gave Howard's power chair a thoroughly examination to find that the brushes in the right wheel's motor are badly worn, thus the cause of the chair losing power. Parts have to be ordered so it will be about a week before they can be replaced. Meanwhile, by keeping the batteries charged periodically, she can safely continue to use the chair.

And I have a happy announcement to make. Early in December, Howard's book will be published in soft cover and available on Amazon.com for $29.95. We've been working on this for several weeks now, but wanted to wait about announcing it until closer to it's publishing date. It is now available as an eBook on Scribd. To get a preview you can go HERE

And I want to tell you as well that most likely upcoming posts to this blog will be later in the day. Howard is needing me more often now during the early morning hours.

Enjoy your Tuesday.
Dianne

Monday, November 23, 2009

2009-11-23T08:18:00.003-05:00

Howard is still weak and a bit disoriented. And today began with uncertainty because Nicole's father is seriously ill after brain surgery and so until 8 a.m., we were unsure who would be bathing Howard today. Turns out Christy will be coming.

Another glitch is that something screwy is going on with her power wheelchair. It still works, but the battery indicator is showing weak signals even though the batteries are only eight month's old.

Because of the strong meds, any deviation from the norm causes Howard uncontrollable anxiety so you can understand why these two particular issues are adding entirely too much stress to an already weakened body.

So today, my job is to stay focused on what matters and just keep things as peaceful as possible.

Hope your Monday is a good one.
Dianne

Sunday, November 22, 2009

2009-11-22T06:25:00.003-05:00

Howard's day yesterday was an improvement over Friday, but it was not her best. She was weak all day with the shortness of breath being more intense at the least exertion of energy. But except for a few spasms in her neck quickly calmed down with Biofreeze, she was not in pain and in good spirits. She did, however, have a restless night.

Friday, Ron and Bryan came and cleared the leaves from our roof, from the driveway and from around the house. What a relief! Our house has never been so covered with leaves and the nurses was commenting they couldn't find the driveway. If it hadn't been for the awareness that both the roof and driveway could suffer damage, we would have left them because the coverage was actually beautiful. But so is snow and we all know how treacherous snow can be. Anyway, it's all clear now and actually appears as if somebody is home.

Have a super Sunday.
Dianne

Saturday, November 21, 2009

2009-11-21T06:59:00.002-05:00

It was rough going for Howard yesterday. We couldn't pinpoint the cause beyond her feeling weak and unfocused. It could, in part, be attributed to Nicole's having to cancel due to a family emergency, but mostly I think, her body just decided to take a break from feeling better.

It is true that any change in schedule can throw Howard for a loop. That's partly morphine, partly weakness. But whatever was going on yesterday was physical as well. And last night for the first time since beginning Decadron, she needed Biofreeze on her left knee.

So something is shifting around, or at least it was yesterday. Today might totally turn all that around.

Enjoy your Saturday.
Dianne

Friday, November 20, 2009

2009-11-20T06:39:00.002-05:00

Howard snapped back yesterday from the slight slump she had hit Wednesday afternoon. All day she was almost pain-free, alert, involved and happy. And she had a fairly restful night last night. She did need to be turned over about every two hours, but with rare exceptions, that's fairly routine.

Our pizza Santa appeared again yesterday. Once again, Linda brought us a pizza for supper and along with it a bunch of bananas and a bottle of shiraz for Howard. And we enjoyed a brief visit before Linda declared it was time for her to go and for us to enjoy that pizza. And we did! And you guessed it--we each saved a slice for breakfast so it's not over yet!

Have a happy Friday!
Dianne

Thursday, November 19, 2009

2009-11-19T07:14:00.003-05:00

Howard's good days continued throughout the first two-thirds of yesterday, but she began to get tired toward twilight. Decadron's relieving of the joint and muscle pain frees her to be a bit more active, but exerting physical effort causes her shortness of breath. What's new and exciting is that she has better use of her hands and arms. The downside to that is she uses them and grows tired as a result. On the other hand, to be able to do more things with her hands makes her feel more useful, less dependent and that's a good thing.

Her night last night was not quite so restful as a few lately. Back pain crept in now and then making it difficult to get her body adjusted to relieve it. And keeping her turned over every couple of hours helped so that she did not need Biofreeze.

Swelling in her legs and ankles continues throughout the day, but the water buildup exits during the night. I understand that as typical when there's congestive heart failure.

Our days remain happy and as this gift of time continues to be extended, we continue to make discoveries that delight us.

Have a happy Thursday.
Dianne

Wednesday, November 18, 2009

2009-11-18T06:43:00.002-05:00

It was an unusually good day for Howard yesterday. Nurse Gwen was to be here at about 10:30, but unexpected needs of other patients caused her to be delayed until nearly 3 p.m. In the past when one of our nurses has been late to arrive, Howard became so antsy that she often exhausted herself by the time they pulled in the driveway. Yesterday while waiting for Gwen, she was a bit impatient, but was able to go on with her reading and Mahjong Solitaire without expending emotional energy.

And once again, she slept well last night. She did need more turnovers than the night before, but overall had a good night.

Today we start a new schedule. Recently Howard's big complaint has been that time spent doing her breathing treatments and medicines leaves her so little time during the day to just do what she wants without being cut short. So Monday, she arranged with Nicole for her bath to begin at 8:30 rather than 9:30. We're hoping this will help relieve that frustration.

It will be another busy day in our house. Denyse is due to clean within a couple of hours after Nicole has finished Howard's bath. So off we go.

Have a super Wednesday.
Dianne

Tuesday, November 17, 2009

2009-11-17T07:37:00.002-05:00

Forgive me for this brief post today. I slept later than I had intended leaving me with fewer minutes than I usually have, but the news is still positive and not much different than in yesterday's post.

Howard had another good day yesterday and a better than usual night last night. What pleases me is the relief from pain has enabled her to be more relaxed, a payoff we forgot to predict.

Enjoy this Tuesday.
Dianne

Monday, November 16, 2009

2009-11-16T06:39:00.002-05:00

Howard had a really fine day yesterday. She spent a portion of it going through her poetry notebooks, marking poems which might make up her next book of poetry. It's always enlightening to review where we've been; for her it was invigorating, so much so that we spent a couple of hours on the porch, her talking happily about how these poems came to be. It was a good afternoon.

Her night last night resembled the night before except for once when her hips went into spasms, but turning her over, repositioning her legs calmed that down. This is the first time any intense pain has hit since she began the new medication.

After a stiff little cold snap and torrents of rain from Ida, we've enjoyed several beautiful days. Afternoons have been warm enough for Howard to sit on the porch with no more than a light shawl wrapped around her shoulders.

The squirrels in our woods are so comfortable with our being out there that they play and hunt for acorns right at the edge of the porch, just inches from where we're sitting and with Maggie lying near us on the floor. From time to time, we speak to them and often they pause and look straight at us as if they're paying attention and they frequently chatter and fuss among themselves.

One day two of them together chased the neighbor's cat up a tree. Score another one for the squirrels.

Enjoy your Monday.
Dianne

Sunday, November 15, 2009

2009-11-15T08:16:00.002-05:00

After beginning the day being short of breath, Howard's day yesterday went far more smoothly than Friday. Her breathing treatment worked more quickly this time, enabling her to enjoy feeling relatively at ease for the remainder of the day.

And she slept well last night, needing only routine turnovers. So deciding to stay with the Decadron is working. And now that she knows the potential consequences of dropping the drug, she is more at peace with the trade-offs.

I think we've become aware now that quality of life includes not being in pain. Before we knew about Decadron, we thought the only way to relieve her pain was more morphine or some other pain killer that would leave her less awake to her own presence. With that awakeness, she can now more consciously absorb these moments left whether few in number or a further gift of many.

Have a happy Sunday.
Dianne

Saturday, November 14, 2009

2009-11-14T07:21:00.003-05:00

Howard's day yesterday was a rough one, but it would have been doubly hard had she not been taking Decadron. The day began with her feeling fatigued and terribly short of breath. Usually a breathing treatment will resolve the SOB, but this time it didn't. Needless to say, when she's short of breath, other things start going south, too.

Due to all the constant fluid build up around her heart and lungs and in her feet and ankles, she has to take Lasix. But because the necessary physical exertion caused by Lasix, she can tolerate only one every other day. Having to take Lasix yesterday compounded her struggle.

But true to what we've come to know as Howard's way, she would not go back to bed. Rather, she held tight to her daily routine, feeling rotten, but refusing to give in.

Finally, by mid-afternoon and after a second breathing treatment, she began to pull out of it, but felt washed out for the remainder of the day. And she had a fairly good night last night, needing to be turned over only four times during the entire night.

One note for those of you who have had polio or who have family members who have had the desease: Finally, the major medical institutions in the US are beginning to recognize and address post-polio syndrone and how devastating it can be. Googling around to see what progress had been made, I found THIS and THIS. It's good to see this country finally acknowledging the seriousness and ramifications as more than just an aftermath.

Have a happy Saturday.
Dianne

Friday, November 13, 2009

2009-11-13T07:13:00.003-05:00

Today I am rejoicing.

Just the single dose of Decadron Wednesday at supper turned things around drastically yesterday for Howard: all the symptoms she suffered Wednesday were gone. She was largely free of pain, her focus was sharp and she was more energetic--all allowing her to have a very good day.

She kept commenting on the difference in how she felt, but still wanted to follow through with the every-other-day experiment. I tried not to counter that, just told her my observations comparing Wednesday and Thursday. The decision had to be hers and I had already decided to accept either route.

By supper time--the designated time for taking Decadron--she had decided that to continue the experiment was just not worth it. She had enjoyed the day so much she didn't want to repeat another one like Wednesday as a follow up.

And so she took her Decadron, slept well during night, needing only the usual number of turnovers with no Biofreeze and no groans during the night. And I slept well knowing she had decided to choose the reduced pain route.

It's okay if there are episodes of drug-induced tears now and then, if furniture and doorjams become more scarred, even if from time to time she crashes the joy stick on her wheelchair. If she can be free of that wretched pain that cripples her ability to enjoy her days, the side effects seem a small tradeoff.

I am rejoicing...

Enjoy your Friday.
Dianne

Thursday, November 12, 2009

2009-11-12T07:12:00.002-05:00

It was really rough going for Howard yesterday. Not only did she wake up with agonizing back pain, throughout the day she was weak, unfocused, short of breath, easily exhausted and moving in slow motion.

This is such a contrast with how well she felt on daily doses of Decadron, I wanted to plea with her not to continue this every other day experiment, to trade off a few moments of tearfulness (and they were very few and short) for the degree of feeling better she has known recently. I did mention it but only in a descriptive voice, and she did acknowledge the difference, but said she wanted to see it through.

Yesterday was the first on-day for Decadron since the experiment began. She took it at supper so that by the time she went to sleep for the night, things had already begun to level out: she needed only three turnovers during the night.

I remember several days back talking about the sinister quality of Decadron. Today, I'm saying "so what." I accept the sovereignty of what "quality of life" means to Howard, but from my on selfish vantage point I'd rather she not suffer pain even if the trade-off is to shed a few tears now and then and scar a few pieces of furniture with her wheelchair.

Enjoy your Thursday.
Dianne

Wednesday, November 10, 2009

2009-11-11T07:25:00.002-05:00

Howard rebounded again yesterday. She was a bit weak getting her day started, but gained momentum as the day progressed. By afternoon she was back to where she was two days ago.

After a back and forth discussion with nurse Gwen, hashing out the side-effects of Decadron against its merits, Gwen suggested and Howard agreed to try taking it every other day, since Howard's dose is already a mere 2 mg.

Last night was the first night off Decadron and she slept well enough, but needed at least a couple more turnovers during the night than since she's been taking the drug. Early this morning she complained that her back was in terrible pain. Her next dose will be with her supper, so we'll see how things go today.

Seems like we're always testing out stuff, but that's the nature of where we are right now. One of the eastern teachings which for a lifetime both of us have followed is "now is the most important moment we have." If it stops working for now, then we'll see about what to do next.

Enjoy your Wednesday.
Dianne