Oncologist Advises vs. Ritalin

Now and then, most of us feel a bit under par, particularly if we haven’t had a good night’s sleep.  Under what circumstances might you consider taking Ritalin to counter drowsiness?

John told his oncologist that the hospice nurse had suggested Ritalin to pep him up when he feels drowsy.  Dr. Heyer said that under some circumstances, he’d approve, “but at the end I don’t.  Ritalin can make you feel wired and for what?” he said.  “At the end” were the doctor’s words.  Are we at the end?!?  A month or more ago, when John had started to feel good, I told him that his cancer didn’t always seem real to me, that sometimes I thought he might be OK.  At the time we were standing together in the living room.  John turned to me and said, in a very serious tone, “I am not getting well.  I do feel much better but I am not getting well.  You must understand that.”

 

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Terminally Ill & Wanting to Travel

Would you consider traveling with someone who is terminally ill?

Weeks ago, John had said, “If I’m feeling well at the end of March, I’d like to go to Santa Fe the end of April.”  It’s now late March.  Oncologist Dr. Heyer, after ordering a CBC, which shows John’s hemoglobin holding and other blood components little changed, sees no reason not to travel to Santa Fe the end of April.  However, with his hand on my shoulder, Dr. Heyer said, “If anything should happen, go to ER in Santa Fe.”

 

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Kudos for Micro Fiber Pants in Black with Elastic Waistband

If you’re caring for a male who is ambulatory but whose waistline is growing larger because of steroids, have you considered alternatives to dress pants?

John now weighs 183 lbs. — up from the 150 lbs. when he arrived home from the hospital.  He has a pot that prevents his wearing any of his dress slacks.  Fortunately, his Northface micro fiber pants w/elastic waist are black.  These with a blue-striped shirt are what John wore to Morton’s for dinner last Saturday.  (I ordered a couple pairs of these pants from REI just before John came home.)

 

 

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Patient Takes Issue

Have you ever, when caring for a terminally ill patient, argued over the need for outside help?

Last week, John proposed that we stop having TH (Touching Hearts) come in twice a week to prepare meals.  “We could go out to dinner one night,” he said.  “Maybe two,” I replied.  “Yes,” said John, who then said that we’re missing out on a lot of good meals because the recipes we give to TH don’t take enough time to merit TH prep., e.g., casseroles.  I told John that we’d hired TH more for me than for him and that I’d like to give his proposal more thought.  After a stint on the treadmill downstairs, I returned and told John that I simply can’t envision cooking right now.  He said he’d do the cooking.  “But,” I reminded him, you’re the patient!”  I asked him if we’re trying to save money.  “No,” he replied.  He then said he was comfortable with continuing TH.  The next day he volunteered that it’s a good thing we didn’t stop the service because after going to three shopping centers on various errands, he was tired.  I’m glad I didn’t acquiesce only to regret.

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Ambien Hangover

At one time or another, most of us have taken something to help us sleep.  Have you ever taken Ambien?

For months leading up to John’s registering with hospice, I had difficulty sleeping and now it’s even more acute.  That’s why my internist prescribed Ambien, which insures falling asleep within minutes of taking the drug.  But the day after taking this drug, I feel awful.  Now, for the past three nights, I haven’t taken Ambien.  Although it takes me anywhere from 1-3 hours to fall asleep when I don’t take the drug, as long as I can sleep 7-8 hours, I’m OK.  Feel much better in the morning without the Ambien “hangover.”

 

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Celebrating a Last Birthday

Have you been asked how you’d like to celebrate your birthday?  What if it’s your last birthday and you know it?

Close friends from Cleveland are stopping by for lunch on Friday, en route to their time-share in South Carolina.  We’re meeting locals for dinner at an Indian restaurant the night before.  And on Saturday, I’m taking John to Morton’s to celebrate his 59th birthday.  Earlier I’d asked him whether he’d like to go to the Inn at little Washington, where we’ve never been together.  “No, Im afraid it would only remind me of what I’m going to be missing,” said John.

 

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Creeping Signs of Death

Most of us get rashes from time to time, be it poison ivy or something more serious such as shingles.  What do you when there’s a rash for which there’s no cure?

John has a rash on the back of his neck and across his shoulders.  He says it doesn’t bother him.  I first noticed it, on just the back of his neck, when he came home from the Sunrise assisted care facility.  Hospice nurse Kim thinks it may be John’s high IgM level, the ugly protein in John’s system that’s increasing because there’s no way to stop it now.

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Getting to Santa Fe One Last Time

Are you able to anticipate what you and the person you’re caring for need to survive from day to day?  What if the patient wants to do something, e.g., travel, that will entail tremendous exertion when the patient’s energy is decreasing daily?

Soon John will decide whether he has the energy to make one last trip to Santa Fe.  His best friend Ron and wife Karen called from California to say they want to visit us if we’re able to make the trip.  I discussed the daunting logistics with my therapist who suggested we hire private transport to take us from the airport in Albuquerque to the Santa Fe condo — an idea John supports.  This would be far less taxing than seeking out the shuttle van at the airport and finding a taxi for the last leg in Santa Fe.  The non-stop United flight from Dulles sounds perfect but John is wary of booking because it’s sometimes delayed, and there’s only one flight daily.  He prefers to fly AA, despite the stop in Dallas.  The thought of changing planes makes me uneasy, even with wheelchair assistance.  As much as John wants to go to Santa Fe in April, he reminds me that we may not be able to go.  It depends on how he feels the end of this month (March).

 

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Strength of a Caregiver

As a caregiver, how strong are you?  Under what circumstances?

Shortly after John had enrolled in hospice, I read the hospice manual.  I found it overwhelming and said to John, “If you become really ill, I won’t be able to take care of you without help.”  “That’s all right,” he’d said.  Today, after completing an errand, I returned to the condo to find John on the phone.  He told me he’d been talking with our friend and neighbor Marilyn for 45 minutes.  “Marilyn says you’re very strong,” said John.  “Oh?” I responded, adding, “I think and hope I am.”  At the time, I didn’t know that it was John who had called Marilyn, asking her opinion of my strength in coping after his death.

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Reading, a Benevolent Distraction from Dying

Of what importance is reading when you’re spouse is dying?

John is as mentally sharp as ever, it seems to me, although he continues to doze while sitting in his chair unless he’s reading or actively engaged in talking.  He’s ordered two more books from Amazon, one on the meaning of God by a professor at UNC-Chapel Hill and a spy thriller featuring a strong female protagonist.  Meanwhile, since reading “The Teapot Dome Scandal” (great read), I’m well into “The Amateur Spy” — the first thriller I’ve read that is based on post-9/11.  Much of the action takes place in Greece, which tweaks memories, but the focus is on the Middle East, particularly Palestinians.  I relish these moments of escape outside myself.  Yet, despite these welcome distractions, I’m all too aware that John is getting weaker.  In only a couple of weeks, he will determine whether he is strong enough to travel to Santa Fe in April.

 

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