A Long Day’s Journey Into Night* (with Congestive Heart Failure)

After three heart attacks, three open heart surgeries and three strokes, my brothers and I often wondered, what would finally “get” Dad? Over the last year, it became apparent that congestive heart failure was catching up with him. When symptoms worsened this year, he’d already had it for more than a decade. He didn’t even remember that he carried the diagnosis of that chronic condition, along with a few others. But when we asked what we should expect as someone became terminally ill with congestive heart failure, the answer was always something like, “It depends.” CHF can look so many different ways. This record of my email entries to my brothers is here for the benefit of other families who may wonder, and look for examples. The last year was hard – emotionally and physically – but hopefully you will see that our father’s personality continued to shine through. His quality of life was good. True, his world had shrunk – a lot. But he still received and expressed love until the day before he died. 

So here, for the record, is the story of Dad’s last few years. I don’t know how it might help a family out there – it’s just one story, after all – but know that our thoughts and prayers are with you. (*Fortunately, my life story bears no resemblance to Eugene O’Neill’s, whose work by this title earned him a Pulitzer prize for drama.)

May 18, 2007 (as Dad is 90 years old)

I have been noticing more signs of minor confusion over the past 6 weeks.  Today, the anti-coagulation clinic called and told me Dad’s protime is 1.7, below the threshold for therapeutic range.  Turns out he didn’t take his pills Tuesday or Wednesday night; they’re still in his pill tray.  We can deal with that in the short term but I’m becoming more concerned about his ability to be in independent living.

He either forgets, or takes pills on a different day because he thinks it’s a different day (he doesn’t confuse morning and evening routines – just the day/date).

I’m also concerned about hygiene and the effect on our relationship.  It now takes me several days to get him to take a shower (after 7 days from the last one, sometimes more).  At some points, he gets testy – a little like an adolescent with his mother (something I know a lot about).  I want to be the daughter, not the shower drill sergeant.

He’s still at a pretty high fall risk.  He likes to use the stairs to go down to dinner instead of taking his walker clear down to the elevator.  So, maybe a move would be a good idea anyway.  He has good days and also some very tottery days.  He really needs to walk daily or 5x/week to keep his balance/strength at a reasonable level. Let me know what you think and we’ll talk to Dad about it this weekend.

June 24, 2008

All is well.  Just wanted to bring you up to speed on Dad’s health from his appointment today with Dr. Flaningam.  Bottom line is just to keep an eye out if Dad starts to experience any weakness or dizziness due to too much blood pressure medication on board, in which case Dr. F. would probably eliminate or reduce Dad’s Spironolactone.

Dad has had some twinges of pain in his left arm so I took him in to make sure it wasn’t cardiac-related.  I also reported that he says he felt weak last week and almost had to hold on in the shower; this was after a 4-5 day break in our usual walking routine, which could be the cause.  Dr. Flaningam did not think the arm twinge was consistent with cardiac symptoms – more likely a nerve pinch.  As for the weakness, Dr. Flaningam noted that Dad takes three medications that affect blood pressure.  Dad’s spirits are pretty good – and no news is good news.

June 24, 2008

Dad was humming this tune today, from high school glee club.  Hadn’t heard it before so I thought I’d pass along the lyrics and Dad’s subsequent quote:

Morning in the golden hills/Meadows that unfold in rills/Morning in the heavens of blue/Morning in the eyes of you

In those dreaming eyes/Where the kind God made my skies/It’s morning, it’s morning, it’s morning…

He also said, “Of the many things I’ve enjoyed, I’ve loved the women around me, beginning with my mother.”  Truly said!

July 16, 2008

This one on our walk just now…

Where the blue of the night/Meets the gold of the day/Someone waits for me.

Beautiful little thought… (from a Bing Crosby tune)

April 14, 2009

I took Dad out to dinner alone tonight, which we haven’t done for a while.  Thought I’d pass along some of his reflections as best I can remember them. Dad ended up recollecting about his family:

“I never really knew my father.  He was an SOB.  He was the great ‘I am.’  It wasn’t unusual for a man of his social stature at the time, to be focused on himself and his interests.  I knew very little about his life before dental school.  Three sons, no daughters, and we were all afraid of him.  My mother was cowed by him.  Curious.”

We talked a little about the fact that he’s an optimist, and that he doesn’t live in the past. He said:

“The past is over.  And I can’t live in the future.  So I live in the present.  I have these distinct periods of my life.  They’re almost separate lives.  I wish your sister had lived.  In my last memory of her she was in an oxygen tent, holding out her arms and saying, ‘Daddy help me.’  I couldn’t do a thing.”

It struck me that, as emotional as Dad is, he has been and is a very practical man.  He does what has to be done.  When memories are too painful, he doesn’t dwell on them.  He continues to be amazed that he has survived so much, and for so long.

April 16, 2009

Here’s my exchange with Dad today on the levee:

“I’m getting to be an old crock.” I said, “You do so much better than most people your age – you’re hardly an old crock.”  He said, “I hope it doesn’t shock you, but I look forward to being with your mother again.”

Dad and I have talked about his concept of faith and God many times in the past, and he has expressed regret that he couldn’t quite believe in God, much as he might want to.  Further, he found it unfair that Mom, a woman of so much faith in God, would express fear of death when she was in the late stages of her illness.  So I asked him, “I take it you do believe in an afterlife.”  He replied:  “What’s the alternative?”

Jan. 26, 2010

Good news from Dad’s doctor today.  He was in for his annual, and it was all good news.  His blood pressure was 108/60, which Dr. Flaningam was very happy with.  Dad reports that he has occasional chest “load” when we walk, but it doesn’t seem to bother him much, and it’s not all the time.  I think, if anything, his balance is better than it was a year ago.  He hasn’t had any dizziness for at least 15 months, when he changed medications.  His weight has been stable for the past 18 months.

Jan. 25, 2011

I was just out walking with Dad and my neighbor, Betty, walked by with her two horses.  I made a slight joke by saying, “Betty walks her horses and I walk you.”  To which he replied, “Some similarity there, I suppose.  Horse’s ass and so on.”

Aug. 18, 2011

Dad’s at “camp” until Monday [his assisted living community].  It’s been kind of a rough week – hasn’t slept well three days out of four.  His tolerance for heat/cold/discomfort is so narrow now…

Aug. 31, 2011

Dad is here and available for Skype tomorrow night. I am beginning to feel that he is slipping on several levels.  He can be pretty slow/confused at times, and physically is somewhat weaker.  He usually has chest pain walking now, although it is mild – and that’s new.  I hate to think it but time may be catching up with him. Just a suggestion that you try to visit this fall if you can.

Nov. 4, 2011

Dad’s spirits are pretty low.  He had a wonderful birthday but got socked by a cold.  Then he enjoyed Scott’s visit but felt a little bereft when Scott left.  I think (still) not feeling 100% has contributed to him feeling more like he isn’t long for this world.  If you get a chance to send him an email/presto message, I know he will love it.

Dec. 29, 2011

…just a few things I’m noticing. His chest pain has increased a fair amount when we’re out walking. It may be all the holiday food (and some extra pounds) but he is having to stop every other house or so when we’re out walking, and occasionally makes it just one house before taking a break. The good news: we’re still out walking and his balance seems about the same. He complains of some hip pain (right hip) and I could see that he is favoring that side a little when he took a few steps without his cane this morning. I also notice a little more confusion, though he is still himself. Just now, he told me that the water in his sink wasn’t getting hot. I thought that seemed strange. He thought about it some more and said that the hot water wasn’t flowing. That also didn’t sound right to me. After several go-rounds, he said he meant that the sink wasn’t draining well. These are concepts that are “next door” to one another but a reflection of it being harder to find and articulate what he means. It doesn’t bother me – I can usually tell what he means. But the chest pain and mental effect may be related to some deterioration of his cardiac condition. Just thought you’d want to be apprised…That said, his spirits are good. January is a tough month (post-holiday blues, shorter days); he is looking forward to seeing Scott, who will visit mid-month.

Jan. 17, 2012

Dad had an episode Sunday that was weird and a little alarming, but basically nothing has changed that we can identify. Here’s the note of explanation I gave Dad, with details:

“In the end, it was pretty anticlimactic. You had an episode while we were out walking Sunday. You remember sitting down and getting two bouts of vertigo. You don’t remember sort of twitching for 5-10 seconds or so and almost jerking out of your walker seat. Neither of those things have happened before, so I called 9-1-1. I was concerned it could be a warning of an impending stroke or heart attack – but as I said, it turned out to be a tempest in a teapot.

In the end, they concluded you did not have a stroke, and your heart is actually in very good shape except for the old damage from your original heart attack. They think your heart could have slowed too much (bradycardia) while resting, or you could have had an arrhythmia that caused a brief problem.

We can continue walking but the hospitalist/internist, Dr. Ritter, said to “let pain be your guide.” If you have significant pain, your heart is warning you, and you should stop. If you have another episode of dizziness, they may have you wear a portable heart monitor at home for a while so they can record what your heart is doing at various times.

Dr. Ritter wonders if you should be on Spironolactone and suggests you talk to Dr. Flaningam about it. It controls edema/fluid build up. You were put on that medication when your blood pressure was getting too low from potassium chloride pills. It’s worked well for you, but it’s worth a conversation about the tradeoffs.

What I’m most interested in now is maintaining your ability to go out walking, but we have to know what to do about the “exertional chest pain” (chest load or pain while exercising). A long acting nitro is a possibility, too.

A few more details, maybe more than you wanted to know!

1)   You have had an elevated white count and elevated lymphocyte count since last February but it probably didn’t cause the issue. It’s possible you have a blood cancer of some kind but there are types you can live with indefinitely. It doesn’t seem to be causing any problems and they suggest ignoring it!

2)   You have a thickening of the lower part of your lungs that shows up on chest xrays. It’s not fluid, which would indicate pneumonia. You also have no fever, coughing or other symptoms of illness or pneumonia. It’s called adelectasis and that’s something you can just ignore, too. It doesn’t seem to be causing a problem for you.

3)   The echocardiogram of your heart and the stress test didn’t show blockages. Your heart is not struggling. You also don’t have blockages in your carotid arteries.

4)   Overall Dr. Ritter was very impressed with the medications you’re on. He thinks they’re very smart and that they should be continued.

Everyone is impressed with your overall vitality and mental acuity.  Well, what did they expect? J

Jan. 22, 2012

Dad continues to have some heart pain while walking – he rates it a ‘3’ on a scale of 1 through 10. But he has not had any repeat episodes of the vertigo/shaking. He had one moment when he thought he felt it coming on, but nothing happened.

He did have one weird thing happen yesterday. After lunch, around 2:30, he said he just couldn’t get out of his red chair. He said he kept trying and struggled mightily – finally did – but for 15 minutes or so his legs were just too weak. We see Dr. Flaningam Thursday and may go through the drill of conferring with a cardiologist.  I’ll keep you posted. Overall, his spirits are great. But I am concerned, still, about the increasing chest pain and the unusual weakness yesterday.

March 1, 2012

I thought I’d do an update later today after Dad and I see Dr. Flaningam. Not back to pre-wierdness level but improved by 50-75%. Yesterday we walked and Dad was generally stopping every 3 driveways. That’s shy of the old/good normal, but waaaaay better than barely making it one driveway. And he’s not struggling for breath while inside the house.

April 26, 2012

I wanted to let you know he didn’t want to walk today. He said he didn’t know what was wrong but just didn’t feel right – thought he might not have slept well last night. I noticed his left ankle/calf is quite a bit more swollen tonight so I am giving him an extra Lasix (he is below the normal dose and Flaningam says we can give an extra at night when needed).

May 3, 2012

Dad’s ankles are still more swollen. I will increase his Lasix to twice daily, which is a normal dose. His doctor attributes it to congestive heart failure, which makes sense.

May 22, 2012

Dad is hanging in there but still losing a little ground, slowly. Last week was kind of strange on several fronts, so I took him to see Dr. Flaningam Monday. (Good report – see below.) He is urinating more frequently and had two accidents when he didn’t make it to the John in time. He’s had several days he’s complained of weakness, to the extent that he didn’t want to walk. And the swelling in his ankles is still significantly up from a couple of months ago.

I took him to the doc to make sure he didn’t have a UTI. Clean result. Dr. F. is making the evening dose of Furosemide (Lasix) a more regular thing. I hate to say it but I always feel like I’m one fall or episode away from something bad, but nothing bad happened today so we’ll count it as a success. On the upside, his sense of humor is intact and I think he’s pretty happy — as long as he’s here.

June 9, 2012

Dad is here until Tuesday and then will be at the Chateau for a week. This is his second week (just completed) with the three evening doses of Furosemide (Lasix) and it seems to have helped his chest pain and edema a little. Spirits are pretty good although he says pretty much every day that he feels like he’s getting weaker and that he doesn’t have long before the “big jump”. That said, I don’t see a dramatic difference, just incrementally harder bit by bit.

June 14, 2012

Kind of a first (and worst) yesterday. I returned Dad to the Chateau Tuesday since I was going to be at a seminar yesterday and have guests arriving today for the weekend. He left a message on my home answering machine sounding very distressed yesterday, “Where’s Betsy? I haven’t seen her all day. Please have Betsy call me.”

He said today that he knew I was not planning to come by yesterday, but he really depends on me now (emotionally). Made me sad. I will see him everyday while he is at the Chateau, except Saturday, when we will be in the foothills’ wine country for a birthday lunch.

He complains of feeling “weak as a cat” when we start out walking most days. All in all, not good, although part of what’s happening now is that he only likes being here.

June 15, 2012

I sent my blog post to Dr. Flaningam and asked him what we could do to avoid taking Dad to the emergency room as the only available solution for urgent pain and symptom control. I asked if Dad would be eligible for hospice at this point. He called yesterday with a great solution. He told me that Sutter now has a program called Advanced Illness Management that is essentially pre-hospice or “hospice light.” It has many of the same case management features as hospice and it can help with things like home visits from nurses. Its goal is to prevent unnecessary hospitalizations by staying right on top of issues as they arise. Sounds great. I don’t think you have to give up minor curative therapies like antibiotics. I asked him to send me information about the program, which I will share with Dad. You do have to indicate that you “wouldn’t be surprised if this person passed away within the next 12 months.” I don’t think it would shock Dad to be asked that question, and it’s less ominous than saying you’re ready for hospice.

June 18, 2012

I took Dad out to dinner last night, along with my friend Wendi. Two attentive female companions are always better than one. (Wendi to Dad: “You are most charming.” Dad to Wendi: “You are very perceptive.”) He wasn’t that great right at first – a little cranky – but he warmed right up. (I asked him how his day had been and he said, “What do you care?” I think I said something like “Wow” or “Okay”. He quickly edited himself and commented that his remark was “churlish.” (Which it was.)

The AIM program sounds useful. I don’t know that they will bring much to the party that I am not already doing, but I’ve never managed care for a really old person before. They know a lot more about the road ahead than I do. If nothing else it might be helpful to have their point of view on the many detailed scenarios that could arise. Their goal is to help the person/family meet their goals for quality of life. They principally do that through assessments, and at least monthly in-home visits from a nurse who specializes in this kind of care. They pay close attention to medication and changes in symptoms, and try to stay ahead of things that might deteriorate and lead to hospitalization. Their social worker also tries to line up a plan for long term care – which we don’t have. The program does not provide home health aides of any kind, but the social worker can help identify resources if/when Dad gets to the point he needs more assistance with daily activities (during his stays here). I would rather Dad did not have to be at the Chateau to get those kinds of resources. At some point in the future, if Dad qualifies for hospice and we go into a period where we all believe he’s nearer “the end,” I may move him out of the Chateau and into my house. But I couldn’t do that for a long period of time, so we’ll have to play it by ear. Obviously, I have to see how Todd feels about it, too.

June 25, 2012

I’ve been slowly increasing the support that I provide Dad and it’s probably timely for me to write it down for when you’re on deck. We don’t all have to do things the same way — some of these things are comfort/dignity more than safety — but here it is for reference and use as you see fit.

Fall prevention: I meet Dad with a towel after he showers, and head him off at the pass when he starts to clear his breakfast dishes (without use of his walker or cane).

Wound prevention: The AIM program nurse thinks he should be wearing compression knee socks to prevent breaks in the skin, which is now pretty stretched around his ankles and calves.

Walking: So far, so good – but he is now saying he feels too weak once or twice a week. Normal chest pain after 5-10 minutes of walking is “3” to “5” on a scale of 1-10. (I always ask him when we walk.) A good day is 0-1. A bad day is 7. The hospitalist said he should listen to more significant chest pain (like 7), so I take him home if he gets up to that level.

Watch for blood vessel breakage: He had a small blood vessel break in his foot last week. The AIM nurse says we should report it to the doctor if it happens again in case the Pradaxa is thinning his blood too much.

One of these mornings, on a “bad” day, I would not be surprised if he needs help dressing.

Showering: Dad is now showering 2x/week and I think that’s OK but to protect his skin it shouldn’t be less than that.

Clean clothes: When Dad showers now, he changes his undershirt, underwear and socks, but not his shirt and trousers. He doesn’t see the stains – and he always has them. I swap out the old clothes with fresh clothes when he showers. I don’t think he cares but I do this because the “old Henry” would have hated to see himself walking around with stains.

Incontinence: Dad is not quite making it to the John about twice a week. I have purchased knit boxers to go with some “male pads.” I don’t care if he uses them or not – it’s really up to him if he doesn’t mind changing his clothes when they get wet. At some point he may prefer to avoid the problem and use the pads as a security measure.

Make his bed: He likes to have his bed made and says it’s hard for him to do it. So I make his bed every day.

Laundry: I always have a clean pair of pants hanging on his closet door at home and the Chateau in case he needs a quick change of trousers.

Pedicure/nail clipping: I take Dad to get his toenails worked on every six weeks. They’re like hooves.

Haircut: every three weeks.

Discomfort and accommodations: If he does have back or other pain, we can give him Tylenol and should (as directed).

Last week, Dad’s lower back was very sore. I think it may be in part from the way he naps in his red chair, which has no lower back support. I talked to him today about replacing that chair with a Laz-E-Boy that has good lower back support. If his back gets too sore, he won’t be able to walk, and I know he will lose ground quickly.

I am also going to have a ramp built in the garage going in the door to the laundry room so that if he does have a bad day, he can avoid doing stairs to get into my house.

July 16, 2012

I’ll start off with the positive. As Dad was leaving the house this morning for our walk, he commented that he felt strong and didn’t feel like he was losing ground. I agree with his assessment that he has been pretty stable since a rough week right before my birthday. In other news, he is having more instances of confusion or confusing behavior – maybe once a week. When Scott visited the weekend of the 22nd, Dad thought Scott lived in San Diego and then Minneapolis.

I admit this one is kind of funny: he apparently was too warm when I had my young adult friend Jennifer walk with him on the levee last weekend. When he became too warm he loosened his trousers and dropped them down while he sat. Practical, but a little unusual. I’m confident he doesn’t think it’s acceptable to “drop trow” in public so I have to think it was a short circuited moment where he temporarily lost his filter. Jennifer handled it well and just told him he needed to pull his pants back up.

July 21, 2012

I’ll call the AIM program Monday to report this, but Dad told me that he woke up every 2 hours last night, needing to pee. It was weigh-in-day at the Chateau, so I stuck around to see what his weight was. He has dropped from 204 two weeks ago to 195 today. So something’s up. I asked the nurse to make sure they were giving him the evening Lasix only three times a week. He’s not feeling great – but that’s partly because he’s not at my house right now – talked about “taking the big jump soon” yesterday and “coming to the end of the line” today.

July 28, 2012

I just sent this message by secure email to Dad’s doc. Dr. Flaningam was out of the office last week. If I don’t hear from him I’m going to take matters into my own hands and try cutting back the Furosemide. Ideas??

Dad’s weight today was 188.5 per the Chateau. It was 195 last Saturday, and 204 exactly two weeks before that. So close to 20 lbs. in three weeks. The swelling in Dad’s ankles is way down. Both Friday night July 13 and July 20 he slept poorly because of having to go to the bathroom every 1-2 hours. He is not confused but reports feeling weak. Should we cut back the Lasix (Furosemide) to 2x a week in the evening?

Aug. 3, 2012

He is very tired today, I think from traveling to Seattle. I know I’m still tired! He does not feel up to walking and I doubt he will feel up to a shower, so please push walking tomorrow and Sunday (probably about 10 a.m.) and facilitate a shower tomorrow afternoon. He had another peeing accident – that’s 1 yesterday and 1 today. I think he’s kind of sleepy and by the time he’s up to deal with it, it’s too late.

Aug. 4, 2012 (written by brother Bruce)

I arrived at Betsy’s about 8:30 pm to spend Saturday and Sunday with Dad. Jennifer expressed concerned that his breathing had sounded labored earlier in the afternoon. Dad looked as weak and worn out as I’ve seen him; he was puffing when I arrived, but otherwise as comfortable as possible in the new chair. When I asked how he was doing, he replied, “I don’t think I can pull through this…” This sort of comment prefaced most of his conversations.

He needed help getting the compression socks off, but they are doing the job. His ankles and feet were not swollen. Saturday his appetite was off in the morning and at lunch, though he drank several glasses of milk. We did make a short walk around 9:30 am. He had to stop every 30 yards or so to regain his breath and ease his heart pain. He made a good dent in his hamburger and corn on the cob but didn’t finish it. Had some nice conversations after dinner, remembering Deep Creek Lake (1952?) on the day I caught a perch (!) and Scott caught his first bass. Also talked about Hawaii and my time at Punahou – he was surprised at how well I remembered it. (50 years ago, almost to the day, we disembarked the SS Lurline at the Aloha Tower).

Betsy and I discussed the shortness of breath, and decided to give Dad an evening dose of Lasix. He was up at least 5 times during the night to pee, but his breathing was improved, and his ankles were normal. Appetite was off again at breakfast, and he was too tired to attempt a walk. I did manage to get him in and out of the shower, so he went back to the Chateau smelling sweet.  I reassured him that he is and always will be my hero. He is in a pretty low place and needs your Presto messages.

Aug. 8, 2012

Dad just arrived here about 11 a.m.. We are not in crisis – nothing imminent, just generally crappy. I am hoping we can get the CHF symptoms under control after meeting with Dr. Flaningam Friday. I will of course update you afterwards and Dad will be here until at least next Thursday.

Spirits – not good: His schedule indicated I would pick him up at 10:30 this morning. He called at 10 and said, “I need you. I’m alone.” When I picked him up at 10:30 he said he just couldn’t hang on anymore (without calling me).

Appetite – not good: He is not eating much – only ate half the cookie that Maddie brought him yesterday and didn’t touch the soup. He is drinking lots of milk.

CHF symptoms: He is VERY short of breath. He had a Lasix Saturday night (that Bruce dispensed) and one Monday night (that I had Maddie bring) so he’s had a little relief but it’s obviously not enough. I think the SOB is triggering anxiety for him, and I expect he will settle down a little because he feels safe here. He usually expresses some worry going back to the Chateau but it usually resolves after he settles back in – that didn’t happen this time.

His weights and blood pressures over the past month have been a roller coaster

Aug. 21, 2012

Dad has pretty much recovered from the bronchial infection and his weight seems to be stable. His mood is a lot better. Walks are increasing though still a lot shorter than June.

Aug. 26, 2012

Dad is not quite back to June levels of fitness/spirits but he’s not far off, either. I feel like his spirits and health are more fragile. For example, we went over the Ray and Mary Lou’s from 6:30-8 Friday night, and I told Dad I’d let him know when we returned. He was in the john, so I hollered that we were back and he answered, “OK.” But the next morning he said he hadn’t slept well because he waited up for me. He had no recollection of me telling me I was home or him answering. Memory is deteriorating slowly (e.g. he couldn’t tell the oven repair guy the cat’s name.) He’s also having a hard time with comfortable temperature. It’s cooler here now (not triple digits!) but in the afternoon he tends to complain that it’s too hot in his room, so I turn up the air conditioning, and then find him bundled in a sweater and blanket. My conclusion: his emotional and physical comfort balances on a knife’s edge. Overall, however, he’s definitely better. Just inconsistently so. He’s stopped putting his socks and shoes on by himself, coming out for coffee barefoot if I don’t catch him while he’s dressing. I’m now assisting him with both.

Aug. 29, 2012

I think we are entering a new period with him in terms of cognitive abilities.

Two things happened when I returned Dad to the Chateau. First, I wanted to show him the new Pac-12 TV channel, and then I wanted to switch back to CNN. So I asked him the channel for CNN and he said, “CNN.” No, the channel, I said. He repeated, “It’s CNN.” That happened on more time. Finally I said, not the letters but the number. (Turns out it’s 40. I found it on the channel guide.)

He also asked me what to expect, by which I thought he meant the schedule that I type out for him, so I walked him through it. Then he said that wasn’t what he meant. He wanted to know what would happen at the Chateau. Would they bring him his medications? Does he have food?

It has been 3 weeks, but he really didn’t recollect the whole Chateau routine: that they bring him medications, he eats breakfast, he goes to lunch at 12:30 etc. I’m also not sure he’s remembering he has my schedule in his pocket. I wrote out the daily Chateau routine for him on his yellow pad and set it on his breakfast table.

I know the Chateau will cue him as necessary but I’m concerned about his anxiety level. If he really doesn’t remember that people there are going to look out for him, he may get agitated. So I hope he settles back in.

Aug. 31, 2012

Dad called last night, something that he’s never done before unless it was to report something broken or that his pills hadn’t arrived. He asked, “What day is it?” I told him it was Thursday. I reassured him I would see him tomorrow. I asked him if he was OK and he said, “I’m OK, just old.” He didn’t sound agitated but he is obviously experiencing more confusion. He did seem better today and we actually walked our usual distance on the levee.

And in other news, he hasn’t completely cleared the congestion for which he finished antibiotics two weeks ago today, when Scott was here. Dr. Flaningam had me take him for a chest X-ray and Dad does have pneumonia. So he will start a new round of antibiotics – different kind – tonight. He is much better but I was concerned that the productive and hacking cough (it’s been both) hasn’t completely resolved.

I’m hoping that maybe the confusion is related to the underlying medical issue.

Sept. 6, 2012

Dad went down the stairs unusually slowly today, and hesitated a long time mid-way (foot extended but not lowering to step). In the process, he apparently pulled a groin muscle. After a few steps, he said he felt sharp pain in the hip area. I’m confident it’s not bone related; he pointed to the groin.

Sept. 24, 2012

Dad seemed to handle being at the Chateau pretty well from Thursday until today. I am making sure we return in time for lunch, and then I stay with him for a few hours. I visit him every day – usually before lunch to walk, stayed with him as his guest for lunch, and then hung out for an hour or so.

Sept. 25, 2012

I received the message below from Dad’s internist in response to my question to him about whether Dad might be depressed and/or benefit from seeing a gero-psychiatrist. What do you guys think? Sacramento is under-resourced with psychiatrists overall and my psychologist didn’t know anyone who specialized in gero-psych either. I just don’t see Dad being able to do talk therapy at this point.

“While this is a good idea, it’s hard to find a regular psychiatrist, much less a geriatric psychiatrist. If we’re interested, this is the one specialist that you don’t need a referral from me, but rather would call his insurance to get a list of psychiatrists in town that accept his insurance. Then you start calling those names and hope that one of them is open to new patients. Not many are, which is a aren’t Sutter psychiatrists, so I’m not much help. However, I’m not sure that we need a psychiatrist’s expertise. Most people with depression are treated by their primary care doc, and not a psychiatrist. Based on what you’ve described, we should consider trying a medication for him. Before I say too much about that, I’ll first point out the non-pharmacologic treatments, as these can be just as effective for depression. These include counseling with a psychologist, which might be helpful to him. I also encourage people to exercise, get into a hobby, get outdoors, and other things that aren’t really practical for him to do. Therefore, I think it would be worth trying a medication.”

Oct. 4, 2012

Dad is on week 3 of our 3-night stay “program.” I think this is working. On Tuesday, instead of picking him up to come to my house after I returned from Tacoma, I explained that I was attending a conference the next day and would pick him up afterwards – which was yesterday afternoon before dinner. While he said, “That’s disappointing,” it was in a very “normal” voice – no deep sadness. He still has short term memory issues. I didn’t have a “Dad walker” over the weekend, so he’s had less exercise than usual, but he looks about the same in terms of strength and balance. The temperature is finally dropping… from 100 Tuesday to 86 today. That will help, too. Dad has lost about 5 lbs. in two months, but that’s probably a good thing. Still no need for evening Lasix.

Dad will be here until Saturday. My new program for returning, as you know, is to return in time for lunch, join him in the dining room for lunch, and visit for a while following. That seems to work well. Saturday is college football day and that should entertain him in the afternoon.

Oct. 5, 2012

My Dad is polite to the point of being decorous. When slightly annoyed, however, he is not above a salty remark. So, when asked by the nurse to bend over EVEN MORE while getting his vaccination, he finally said, “How much ass do you NEED?” He’s still Henry… 😉

Oct. 10, 2012

I left for an errand at 1:15 and returned at 2:30 to find Dad on the floor in the kitchen. He cleared his plate without benefit of his walker and it didn’t go well. He said that he didn’t feel hurt and he seems to be walking okay – a little stiff. He thinks he fell at about 1:40; 50 minutes on a hardwood floor alone would make him stiff.

Oct. 17, 2012

He’s been a bit up and down in the past week… a little more chest pain, weight fluctuating a little more, a little more short of breath. I know he’ll appreciate any emails you can send.

Nov. 21, 2012

Dad has complained in the past week of upper back discomfort upon awakening – once at my house and twice at the Chateau. He thinks it’s the bed, but the bed at the Chateau is pretty new and he has always said how comfortable it is. I just talked to Amber, the AIM nurse, for ideas.

She suspects it may be radiating cardiac or gastric pain. She suggests asking lots of questions (where are you feeling pain, etc) and giving Tylenol (2) at night and in the morning. A heating pad might also help.

Nov. 26, 2012

Dad is having a rough day, to the point that he is too SOB to go out to lunch. He is winded walking from his bathroom to his chair at the Chateau. Bruce noted more variability in his walks. Some are short and some are aborted. We intended to walk today but it’s clear he can’t. We ended up walking to the car downstairs and back. I’m getting takeout. I’ll check out his weights and see about an evening Lasix, which might help. I’ll keep you posted.

Nov. 27, 2012

Sondra, the visiting nurse, evaluated Dad an hour or so ago. He seems slightly better today but still has noticeably increased shortness of breath.

While just sitting in his chair, she noted that his lungs are retracting when breathing (he “pants” and the area just above his belly pulls way in, engaging his stomach muscles) and he can’t say more than a few words without taking a rest and catching his breath to complete a sentence. He has a slight wheeze when breathing that increases if he does anything, such as tying his shoes. I still notice confusion – he told her he joined the Marine Corps in 1924 – but I don’t know if that’s related.

The good news is that she does not hear fluid in his lungs. She suspects that there is increased fluid retention around his heart. She is asking the doctor to write an order allowing the Chateau to give him an extra 20 mg. pill when he has this kind of SOB (“PRN”).  So… maybe a little better. Let’s hope a periodic boost of Lasix keeps him stable and feeling improved.  We’ll try to walk tomorrow (although a storm is coming in); I think it would be too much today.

Dec. 2, 2012

He is walking a little better and complaining of pain slightly less. Still very sore but not to the point I worry about him being able to dress or go to the bathroom during the night.

What I’ve been doing: alternating cold packs and heating pad, pushing Tylenol every 4-6 hours. I had a friend/massage therapist give him a 1 hour massage and I think that will yield some benefits tomorrow. I kept him in PJs all day and assisted him with a shower SEATED in the shower chair. The Tylenol is a big help.

Dec. 2, 2012

Not a rough night! He is obviously still very uncomfortable but he can get on his feet and walk to the John and back. I think he is moving a little better than yesterday. His spirits are pretty good; he is not afraid, which is a relief – kills me when he is!!

I gave him 2 Tylenol upon awaking and am having him sit in his chair for a half hour with a heating pad before coming to the table. Abigail is coming at 1:15; massage has been helpful in the past. Will keep up with heat and cold today. I planned to return him tomorrow and to leave town Tuesday afternoon. I think that is still possible but I’ll have to see. He has had a sore lower back or IT band several times in the past and our home comfort remedies have helped within 48 hours.

Dec. 3, 2012

Dad’s back was really sore again this morning so we did go to the doctor. It is a muscle pull. I did use the wheel chair this morning in the interest of time and comfort but he is generally walking with his walker.

Dec. 4, 2012

Dad called at 3 in the morning saying his back hurt and that he couldn’t reach anyone. The lead nurse wasn’t answering her phone and his emergency pendant wasn’t working. I got the nurse (through security), had her give him Tylenol and had security replace the battery in his pendant. The nurse said the after hours cell phone wasn’t charged. I will take those issues up with management. Dad could walk, and the Tylenol helped. Part of the problem is that his memory is faulty, especially at night, so it was a new thing to him that his back hurt.

Dec. 9, 2012

As you know, Scott took Dad to urgent care Saturday and they removed over 1 liter of urine when he was unable to pee. They assumed a bladder infection but took a culture. Dad started his antibiotics at about 5 p.m. last night and took his second dose this morning. He is incontinent right now… peeing every 10 or 15 minutes. I have him wearing a male guard which seems to be doing the trick in terms of protecting clothes and property. He did sleep pretty well last night. I never heard him get up, but I’m pretty sure he must have. He did wet the bed this morning when he was unable to get to the john in time but he stayed dry last night (without the pad). I am going to push cranberry juice today. Does not seem to have a fever.

He is significantly weaker than usual. It’s been a very rough three weeks. First the extreme shortness of breath, then the muscle pull and now this. Poor guy can’t get a break. He is glad to be here. He really couldn’t be at the Chateau without help yet so I’ll keep him here for now.

Dec. 10, 2012

Dad was noticeably perkier last evening; the shower helped and I think the bladder infection is STARTING to calm down.

At 7:45 this morning he shouted, “I can’t hear you!” I mean, really shouted. He has had this happen before – kind of like phantom hearing where he thinks someone is calling out to him or talking to him, but there’s been no sound. Just fyi in case that happens to you some time.

He was wet; the “Depends” style undies didn’t provide adequate protection on the sides. I had him sleep in them last night because he has had such urgency… and the pain medication they gave him turns his urine bright orange. Not desirable to drip everywhere.

Yesterday morning, he had immediate urgency to pee about every 15 minutes. That was down to about every half hour, with more control, by evening. Let’s hope for even better today. So far, so good. So the “goals” for today are: 1) hope that Dad can actually walk to the john and make it; 2) walk a little more; 3) drink cranberry juice.

Dec. 11, 2012

Dad in extreme pain this morning. Dr. Flaningam had me take him to the emergency room for a cath. Immediate relief. The UTI culture from Saturday was negative; they are running a new one but think it’s an enlarged prostate. While he waits to get in to the urologist he will go home with the cath. I will have support from Sutter Home Care. We should be able to head home as soon as new urine culture is back. There is an unlikely possibility that this is related to his Saturday fall. If he injured a disc he would have leg weakness and problems with bowel control. I am to keep an eye out.

Dec. 11, 2012

Sutter Urology thinks Dad can tolerate the catheter for a week or more and wouldn’t schedule him before Monday. I am frantic. He is very wobbly and a definite fall risk – cannot hold on to the idea that he has a catheter and gets up to pee. I have a caregiver I’ve found for 9 p.m. to 5 a.m. tonight. Am going to talk to the urologist’s office tomorrow – they have all gone home and it was the scheduler that gave me that gem – and I will beg. I will see what the caregiver service can do, but unfortunately I am kind of sick myself. I may need reinforcements. Stay tuned for an update tomorrow. This is a little overwhelming or maybe I’m just exhausted.

Dec. 13, 2012

The urologist’s office just called and is going to work Dad in tomorrow at 10:45 a.m. They will do a “trial void” with the nurse and then a cystoscopy.

Things about the same: pretty good in the morning, very weak by afternoon (falling down weak). Catheter is working fine and Dad is tolerating it better (not trying to get up to pee every 10 minutes). The Sutter Home Care nurse just left and collected a bunch of information; they will now send a nurse every week until things get better or worse, as well as send a bathing assistant (hopefully tomorrow) and get Dad started with PT and OT, both in-home. (PT in this case works on lower body strength whereas OT focuses on upper body strength, memory and tasks like dressing.)

The nurse also gave me a large urine bag so that Dad will not have to have his small leg bag dumped every 2-3 hours during the night. Should give him a better sleep.

He is at risk for pressure sorese while he is less mobile. They can happen anywhere there is a bony protuberance. We are to look out for pinkish spots about the size of a dime; they should “blanch” when pressed (turn white). If they do not, they are the start of pressure sores. If he ends up hospitalized, we should try to make sure his position is changed every 4 hours or so. I am getting him to move every couple of hours here.

Dec. 14, 2012

I just wanted to give you a window into my thoughts and feelings right now as it pertains to Dad’s living situation. I’m not looking for answers or a vote from the three of you but I wanted to give you time to process the options, as I am processing them.

There has been no question this week that he needed to be here because of his weakness/fall risk combined with inability to consistently remember that he didn’t need to get up to go to the bathroom. I’ve made a couple of lightning runs to the store or Walgreen’s but did not feel he could be left alone for more than about 15 minutes. I’ve been particularly concerned about fall risk at night, and have had a care assistant here for the past three nights. That covers Dad for 8 hours, but it still means I have to be on duty (within ear shot on the living room couch) at 5 or 6 a.m. He doesn’t always call for help; you have to hear him moving and trying to use his walker.

My hope is that Dad will stabilize enough to be able to return to splitting his time between the Chateau and here. There are several considerations here:

My health and availability for my family

Cost

Dad’s well being and happiness

My health etc. – This is definitely a more demanding period of care. Unless I have help in, I’m entirely house bound. I know I need time for intellectual and social stimulation as well as physical exercise. It’s not just my life, however. I really need to be a supportive spouse. Part of Todd’s enjoyment comes with outings (going out to dinner, wine tasting), and short trips. His world is still incredibly stressful and he generally is awake a couple of hours a night. I need to help him stay on his feet, too. Right now, both Maddie and Tommy are doing great – and hopefully it will stay that way.

Cost –  Night care is costing Dad $184 per night. If I add a little daytime care so that I can go out, we’re talking probably $250/day or $1,750 a week more than he is paying now. At some point, it will make more financial sense to bring Dad here and just pay for the help rather than paying for the Chateau and personal assistance here (or there – right now we would have to contract for help at least at night there because of fall risk).

Dad’s wellbeing – We all know what Dad would want! He’s happiest here.

Which brings me to my fear, and that is, that Dad is so darned resilient I have no idea how long I would be signing up for if I brought him here. Even with care here, it means managing care and being the “first responder” for everything, day to day. When he is close to qualifying for hospice, I want him here. But, as medical innovation keeps helping him to claw back functioning and health, I know that he could be with us quite a long time.

So back to the beginning… I’m not making any decisions now. I need to see how much strength he can regain (so that he is not an imminent fall risk – that’s the biggest thing) and whether returning to the Chateau is possible. It’s going to take at least a couple of weeks to know that. We may do a trial 1-2 days at the Chateau when he is stronger… but again, I can’t predict when. Having Sutter Home Care on board will be helpful to the mission of helping him get stronger. But who knows when the next shoe will drop.

Dec. 14, 2012

Hi, Dad and brothers,

Dad – you are now in another supportive program, Sutter Home Care. Their goal and ours is to help you get steady on your feet again so you can enjoy daily walks as before, and get on the road to resolving the urine retention problem.

You will stay here until you are stronger, at least through Christmas. We’ll have nighttime assistance until you are steady on your feet at night, too.

Through Sutter Home Care (paid for by Medicare) you are now slated for:

• Bathing assistance twice a week
• Physical therapy (lower body strength and balance building – and hopefully back strengthening) twice a week
• Occupational therapy (upper body strength and memory-building) – once a week
• Home nurse visit to evaluate and adjust as need – once a week
• And I’m throwing in a home massage visit once a week for now.

So Dad, expect to be coddled a bit. Hooray!

Dec. 17, 2012

I have a call in to Sutter Home Care – I’m not sure who is on “first” with AIM and Sutter Home Care in the mix — to see if the advanced illness nurse can come sooner than Weds. I feel like Dad’s condition is deteriorating. He is significantly more short of breath – even than a week ago – and just wants to sleep most of the time. If he does not become more alert, I am afraid we are on the downward slide.

I am asking the nurse if oxygen would be helpful during shortness of breath spells. I don’t see how he could participate in PT tomorrow. I’ll keep you posted. The immediate step, I think, is to get a nurse here who can help us figure out what trajectory we’re on. He is in no immediate danger, and resting comfortably right now.

Dec. 17, 2012

Update:

The nurse is going to recommend to Dr. Flaningam that Dad have oxygen on hand for periods of greater shortness of breath. We’re going to keep the PT scheduled for tomorrow, but we learned some bits…

Dad’s BP the second time was 148/78, which is high for him, and his heartbeat was 54, which is low, but not immediately worrisome. His heartbeat is irregular… that is, beat-beat-skip…fast beat, beat. The edema in his ankles is way down compared to last Tuesday (I remember the ER doc commenting on it), which makes us wonder if the fluid is going someplace else, since his weight is still stable. His oxygen level is 95%. Doctors don’t usually order oxygen unless it’s below 90%, but she thinks it would be reasonable to have oxygen so that Dad doesn’t get more anxious about being short of breath.

This nurse isn’t that familiar with CHF but she thinks Dad may be retaining fluid in his abdomen and chest. She said there is one kind of CHF where, if your heart is weaker on one side, you retain fluid in the abdomen on the opposite side.

She also suggested I start measuring fluid in and fluid out (urine) so that we can see if there is more evidence he is retaining fluid, or how much, which might indicate perhaps a different standing dosage of Lasix. Lastly, she said that Dad’s back may be sorer due in part to retracting his lungs so much when he is breathing more heavily.

Dec. 18, 2012

Bruce said he thought I sounded a little frantic in my note yesterday. I’m not panicked, but I do feel very much like this is a turning point and I – or we – will have to make a decision with Dad as early as this week about hospice. Every day is a little harder in terms of breathing. I am finding it very difficult to imagine Dad getting stronger or more active – even moving around the house – given that he is gasping for air. He doesn’t seem to be afraid, but he is aware of how difficult it is. Because of all of this I have a hard time imagining that things will turn around and improve. I’m not a pessimist, as you know. It just stretches credulity to think it’s going to turn around when you see him like this, and a little worse every day. (He used to have bad day-good day-bad day-good day pattern, but there really aren’t good days now.)

So I feel like we’re coming to decision time about hospice. We have many of the same services in place now, but I think they are better at managing the symptoms. I think Dad needs to be under the care of people who know a lot about comfort with end-stage CHF.

What we would give up would be treatments related to CHF, because Medicare won’t pay for them. If he has something unrelated to CHF, say, breaks a bone, Medicare DOES pay for that. I don’t know what they would do about antibiotics if he develops pneumonia (he near-aspirated again yesterday) but I can ask. I am not sure if hospice would mean giving up the idea of the cooled thermotherapy for his prostate condition but it probably does. And at any rate, Dad couldn’t get up independently to pee without falling anyway, so it may be safer for him to remain on the catheter.

Tommy told me last night he doesn’t believe it, that Papa could be within the last six months of his life. I’m not sure if that meant he didn’t WANT to believe it or that Papa has rallied so often that you can never count him down. I don’t want to believe it either, but I think we are there.

I will ask for a hospice evaluation this week. We can decide “yea” or “nay”… And Dad should have input. If he gets better, he can get kicked out of hospice. Or we can drop it in the future. It’s not a forever-decision. But I do think we are quickly approaching a decision time.

Dec. 19, 2012

The nurse did see Dad today and has a message in to Dr. Flaningam to order a hospice evaluation, as well as faxing orders to the DME supplier for oxygen, a hospital bed and a bedside commode (we can buy the latter if that isn’t typically covered).

The upshot is that Dad’s vitals are better than some of the criteria for CHF hospice admission. The nurse believes that his belly may be bloated with fluid. He continues to breathe rapidly and really struggles to breathe at times. His functional status – and the change in it – is probably the greatest indicator. He can walk to the kitchen table and back in the morning. By afternoon, it is very difficult for me to transfer him from his chair to a transport wheelchair, or to get him off the john and back into the transport chair. His appetite is about half as the shortness of breath is getting in the way of eating and drinking at some times (although his weight is still stable).

He continues to be forgetful about the need to pee (or lack thereof given the catheter) and is a fall risk in the afternoon and evening.

In terms of practical relief for shortness of breath, Marie would like to see him have a small dose of morphine. She says it slows the heart rate down. She also said that a small fan blowing in the face and cool washcloth help slow the heart rate down, and it can be helpful to lean forward on a table (to open up the lungs in the back). She suggested a heating pad for lower back pain and thinks the hospital bed is the best solution.

Dec. 21, 2012

Dad was approved for hospice today. I know you are all wondering how he’s doing – and pragmatically — how long he might have. With cancer, there’s a pretty predictable progression. With congestive heart failure, there really isn’t. And we ALL know how Dad beats the odds anyway.

Dad isn’t doing great, but I do think he will stabilize with the tender ministrations of hospice. These people are GREAT with comfort care. Statistically, people with advanced illness live longer with hospice than without hospice. He could well rally and “graduate” from hospice (be kicked out of the program). Or he could continue to have accelerating problems.

That said…I think we are talking months. Dad did participate in the decision to seek hospice care, but he does have short term memory issues and I doubt he will remember it or think about it that much. What he cares about is being here “for the duration.” He will love to have you visit, or spend time with you, if you want to do so, but he may or may not feel like he needs to say “goodbye.”

My dear friend, Jim Jennings, is a chaplain for a hospice program in Kauai and sent along this advice:

“When he begins to decline, it is probably a good idea for your siblings or loved ones to have their own one on ones with him so they can release him and tell him they love him and will be OK and to go forward.  Your brothers are likely gonna have a hard time with this.  Very important though to express it. One more caution before you get there.  Once he has said what he needs to say to your siblings, and they to him, whether he seems fine or not, he could go quickly.”

Hospice is support for ALL of us. They have a chaplain and social worker that can meet with any member of the family, not just Dad and not just me.

Dec. 22, 2012

Just wanted you – who are all dear friends – to know that Dad was admitted into hospice yesterday. He’s still “himself” and doing OK but things have changed pretty rapidly over the past three weeks. Hospice is the best possible care he could get, and it will allow him to stay in his favorite place, right here at my house. He’s in no imminent danger and I expect he’ll be with us for quite some time, and comfortable. I am really grateful for all of the supportive services of hospice, and it’s a relief that he was eligible.

If we’re lucky, he’ll stabilize and rally, maybe even “graduate” from hospice for a time. But there’s no way to know what the remainder of his journey will be like. I just know we are now in the very best position to help him feel secure and comfortable, and that I won’t feel alone in having to dash to figure out each new thing that arises.

I am grateful for the love you give me – just knowing you’re there helps. I’m a little sad, of course, but also feeling supported and relieved. My brothers have been great.

Dec. 22, 2012

Dad is still asleep I think. Night before last was pretty rough – either back pain or shortness of breath kept him pretty restless. He doesn’t think much of the twin sized hospital bed (hasn’t slept in one for several years at the Chateau) but it was easier to ease down to a flat position with the help of the electric hospital bed. Hospice will be bringing the air topper like Mom had; it’s now standard to get that right away so that bed sores don’t develop. I bet Dad’s going to complain a fair amount about the hospital bed but I can’t do anything about it until 12/26 even if I wanted to.

Last night’s caregiver said that he did vocalize several times during the night. He’s still a little anxious about whether someone will be there to help or dump the bladder. I imagine there is a part of him that did take in the “hospice” message and he may feel a little less secure about his own future. But I am hoping he will adjust to the bed and that he will fall into a routine. I am having the night caregivers dump the leg bag on a regular every-three-hour schedule so that Dad (hopefully) learns he can count on it and them.

Medications… We now have the “comfort kit.” Many of the medications will be helpful later but I am using one now to ease shortness of breath and back pain at night. He has a bottle of liquid morphine in the concentration of 20 mg/ml.  Drowsiness is an expected side effect for the first 48-72 hours. If we should have difficulty waking Dad, we are supposed to contact hospice. For now, I am going to limit the 1/4 (smallest) dose to half hour before bed and again around 7:30 a.m. (if he is stirring) to see if I can ease pain before he arises. It was REALLY painful arising this morning (like a 9 on a scale of 1-10).

Between the new techniques for sitting at the kitchen table (using the wheelchair, which has arms, instead of my kitchen chair), always using the lift on the recliner, and the lift on the hospital bed, I am hoping Dad’s back will feel less strain and he gets more comfortable.

Side effects: constipation is the main one. They want Dad to take a daily dose of “senna” and stop taking it if he gets constipated. They still recommend prune juice but do NOT want him to add Metamucil; it tends to form bulk and cause more problems. Another possible side effect is nausea. It can be offset with Haloperidol, which we also have in the comfort kit. That’s another side effect that is expected to pass quickly. Hopefully we won’t need it. So our comfort kit has the morphine, senna, Haloperidol as well as Lorazepam (we used it for Mom for unrelieved agitation) and Hycosamine, which a drug used for secretions (when someone can’t clear anymore).

Dec. 22, 2012

I want to give you a run down on the volume of information I’m picking up as the hospice team comes aboard. The hardest thing right now is trying to figure out how to ease Dad’s breathing with the right dosing of morphine. I had a visit from a nurse today (GC Low) and a hospice social worker who follows up with people 24 hours after they come on service (Dennis Armstrong). GC thinks Dad’s shortness of breath can be gotten under control. When we talked about prognosis, she ventured 1 – 3 months. She thinks it will be more of an ebbing than a cliff… but you never know. He could regain ground and graduate from hospice, or have a faster decline.

What is “very short of breath”? Huffing and puffing, obviously really retracting his lungs, with the episode lasting for a long time even when at rest. Which has pretty much been 100% of the time since awakening today. He just couldn’t eat at breakfast today (had a little coffee and milk, and about 3 bites of scrambled eggs) — too short of breath (tho he did take his pills). When he does anything, even blow his nose, he is almost gasping.

So… I asked the nurse on call to clarify the scale on the oral syringe for dosing morphine. She came out and spent an hour. I love that about hospice; she said she’d just come show me. She was PO’d that the order for oxygen hadn’t been marked urgent and she said he needs it all the time until his SOB is under control. It just arrived.

Dec. 23, 2012

I wish I had better news but I don’t. I think I hoped that, as Dad’s shortness of breath got under control, he would regain some strength. I can tell you that he is much more comfortable (not struggling for breath), and happy – good sense of humor, even, but he is physically declining rapidly unless things change. I will call Hospice in the morning.

Dad has not needed much morphine for shortness of breath today. He had 1/4 syringe in the afternoon, but that’s it. The oxygen has been adequate. He is eating more and still able to take his pills.

And he is still “himself.” He entertained Tammy with Shakespeare when she came by today, and was his charming self. He was at the table trading funny little remarks with Maddie for 90 minutes at dinner. Great quips and quotes. But his words are kind of slurred, he asks the same questions over and over, and he has not been able to walk at all today. By which I mean – his legs are so rubbery that he cannot assist himself to stand. Yesterday he could walk to the table for breakfast. Today he could not. After dinner, he fell immediately asleep in his chair.

My gut isn’t good, brothers. I think we are going to be able to control his symptoms (pain and shortness of breath) but not the slide. Maybe that’s the way he wants it. I can tell you his heart is not heavy and he is not afraid. He is in a good mood.

I thought we had quite a bit of time but now I am not so sure. I think he will be alive but I think he may slip off cognitively. So I would say, come sooner rather than later. So at least you talk to him while he “gets” that it’s you.

So many wonderful Christmas eve memories are flowing through my head… hanging “icicles” on the tree… putting out Mom’s angel figurines on the “angel hair” lit from below…driving with Mom and Dad to see the lights… midnight services by candlelight. I am missing you all tonight.

Dec. 23, 2012

The new nighttime caregiver (we have three people in the mix now), had great insight into what’s going on with Dad at night. We did give him morphine as he went to bed (1/4 syringe at 8:50 and another 1/4 syringe at 9:40). She said he slept deeply and snored during the first stretch of the night. After a few hours, she said, he starts to sound shorter of breath and turns onto his side; so apparently his movement at night is partly related to trying to breathe. I pre-measured a half syringe and a quarter syringe last night so she could administer if he needed it. She gave him the 1/2 syringe at 12:30 or so. He became restless again several hours later and she used the second syringe then. He sounded pretty uncomfortable about 6:45 so I had her give him a final 1/4 syringe.

Dec. 24, 2012

New problem – This morning, Dad could not support his weight for the first time. Virtually at all. I had Maddie help me. By the time Tommy and I transferred him to go in to breakfast, he was even less able to participate. I was holding virtually 100% of his weight. My back is tired, but not sore.

I talked to hospice about the best way to manage the “dance” of transfer and they gave me a few suggestions. I was pretty much on the right track (the “Mom” transfer we learned where you are kind of bear hugging them and pivoting) but my legs weren’t quite in the right place so we were sidestepping too much.

Be that as it may, in their opinion, at that point the person in hospice should really be in bed 100% of the time so that he doesn’t fall and the caregiver isn’t injured.

I cannot bear the idea of Dad in bed full-time. Not yet. He is still talking, though more slurred, and has his humor intact. His cognitive abilities are sliding. He looks at the schedule I give him over and over, and asks the same questions over and over. This morning for the first time he didn’t read the paper. It was in front of him, but he was kind of staring, not reading. He is still losing ground in every sense.

The nurse and I notice that he is still in decline. I told her it seems to me we are more likely dealing with weeks then months, and asked for her thoughts. She said CHF and COPD are the hardest to project. If he continues to lose ground as he has fairly rapidly even in the past few days, then weeks. But she said it is common to see dips and recoveries with CHF. They usually can tell when they are within 2 weeks.

I need you guys to come soon – for me if nothing else. I know you are there, but it does feel like I am kind of coping alone. And it’s a bitch on wheels. Let me know when you can come for some stretches – soon. It’s time.

Dec. 25, 2012

Me to Dad: “Have you had a good Christmas day?” Dad: “I think so. It’s enough being here.” LOVE my Dad!

Maddie: “It’s good to see you!” Dad: “I’m glad you find it such a big deal.” Maddie: “You look very handsome in that shirt.” Dad: “I AM handsome…”

Dec. 25, 2012

Dad and I are watching Military History Channel – what else would you do on Christmas? He had a good morning after a good night’s sleep, and, at the risk of being a little crass – enjoyed a good poop. They are very welcome, compared to the “fishing out” that he had to endure yesterday.

After lunch, Dad slept for about 3 hours. His shortness of breath is obviously in better check although he continues to say he feels “weak as a cat.”

The cat-like reference is pretty apt. Have you ever tried to remove a cat from someplace it doesn’t want to leave? Where it hangs on for dear life with its claws? Herein lies my dilemma… transferring Dad to the John earlier, we had “the talk” that we always have (given his challenges with short term memory). I explain that, on the count of three, I’m going to boost him to his feet, he is going to hug me and I him, and we are going to pivot, transferring from the wheelchair to the John. Boost went fine. Then he grabbed the door handle behind me and hung on for dear life. So he is collapsing on his legs, gripped like iron to the door behind me. And I cannot budge him, so I am yelling, ‘Let go!’ He did, after about a minute of repeated instructions (yelling). Meanwhile I am holding up 200 lb. of nearly dead weight. The cognitive skills are a challenge on top of the physical ones. Laid down and groaned afterwards, but no injury. It would be funny if it weren’t so hard!

It ended well – in success anyway. So Dad had a great nap and might enjoy Christmas dinner. Let’s hope!

Dec. 26, 2012

I just called the nurse. Dad doesn’t have any urine in his bag after 4 hours. Normally he’d have 400 cc’s or so after the 16-20 ounces of fluid he’s had so far. They’re going to come out and see if the catheter needs to be flushed.

Dec. 28, 2012

If I’ve seen one day with Dad, I’ve seen one day. We did use Lorazepam last night for the first time because of his extremely twitchy feet. This morning, he was apparently trying to reach the clock to see what time it was and called me. When I came into his room, he was extremely short of breath. I gave him 1/4 syringe of morphine and another 20 minutes later when he was still gasping and told me he was afraid.

He did make it to breakfast but was extremely sleepy even at the table. He rested until 1 p.m. – as is often the case, was confused upon awakening, trying to get up to pee, etc.

I had a meeting from 3-4 p.m. During the time that I was out, the care assistant said he was gasping for breath again so she gave him 1/4 syringe. He slept as heavily as I’ve seen him sleep this afternoon. When I spoke to him he didn’t stir. He is comfortable now, and awake.

Dec. 28, 2012

I think we are finding “a new normal,” at least for the present. Dad is not in free fall like he was in the past week, although his strength is not improving, and I don’t think it will. We met our regular nurse, Diana Skinner, today. She’ll come twice a week although we can get an urgent visit as needed. She still thinks “weeks to months” and that it’s hard to say. He did have a little blood again in some phlegm he coughed up this morning but they don’t seem concerned about it. My daytime caregiver shift started today and it was a huge relief to have a partner for transferring. It gave me the chance to run two brief errands.

Dad is still almost 100% dead weight – occasionally can kind of stand holding you without crumpling at the knees, but that’s maybe one out of 10 times. So you are lifting someone bent at the waist. Pretty hard. Especially if you’re trying to get pants up or down.

The two riskiest times of day are:

1) Afternoon when he awakens from a typically-long nap: he is very confused, on the edge of difficult/cranky, skeptical and doesn’t understand what’s happening. These are the times he insists he wants his cane or his walker. He will ask “what’s happening?” over and over. He is a particularly high fall risk during this period.

2) Transferring off the John. He is pretty far back on the John which makes it hard to get him up. I did buy a “booster seat” today.

His appetite continues to be variable. He is eating maybe 1/4 of what he used to… usually one meal gets consumed fairly well and the other two are just nibbled at. He is sleeping more – 2-3 hours in the morning, and another 2-3 in the afternoon.

In terms of his physical health, his shortness of breath is greatly eased with oxygen, and we are getting in to a groove with the morphine.

His breathing discomfort at night is eased with a 1/4 vial of morphine at 1 a.m. and 4 a.m.. He is receiving a low concentration of morphine. An entire vial is the equivalent of a Vicodin. It’s safe to give up to 1 vial every hour, so what we’re doing with Dad is light usage.

The nurse recommends giving him a 1/4 vial of morphine upon awakening to help him with morning shortness of breath.

His back pain is way down – probably because he’s not doing the work of trying to stand. We are generally not needing morphine during the day at all.

This is strange – he is starting to twitch his feet and legs when sleeping. It doesn’t seem to disturb his sleep, but if it begins to do so, we may give him Lorazepam (instead of morphine) which helps with breathing and is calming. They prefer to use Lorazepam only at night because it makes you sleepy. The nurse isn’t sure why he twitches – maybe hypoxia (not enough oxygen in blood supply or making it to brain) or possibly dreaming of walking, like when dogs move their feet dreaming of running. Maybe related, maybe not – he complains of cramps in his hands…

You should be prepared that Dad varies on how he feels about the caregivers. Sometimes he says one or the other “isn’t his favorite companion.” I think they are doing fine and are quite competent. The underlying problem is that none of the caregivers are me or you.

Dec. 29, 2012 (to my friend, Jim)

I know you’ve been saying this but it finally is sinking in that I don’t think my Dad is going to rally and that the best thing we can do is ease his journey home. I am SO accustomed to helping him rally and regain function that I don’t really know how to do anything different. I read today that sleeping more is part of the process as he withdraws; I have been worrying about him sleeping too much and becoming dehydrated. You’ve written all those great words about the descent/ascent, the bridge, etc., and I took it in but I don’t think I really thought I was there now. But that’s were we are, isn’t it? He is withdrawing.

Dec. 29, 2012

I am beginning to really take in the bit of info in the Hospice Booklet that says it is natural, and part of the process, for people to sleep more. Dad had a better day today in terms of shortness of breath (no morphine), and he was more social – but he is still sleeping at least 2 hours in the morning and 2-3 in the afternoon. Tammy visited, and he talked with Tommy at the dinner table, and by 8:30 he really wanted to go to bed.

This is something you will have to be ready for when you visit. Hospice’s advice is to let people sleep. It is part of the process of withdrawing, preparation. Dad is not going to rally, I believe, so we all have to be prepared to just comfort him rather than try to bring him back. He isn’t going to get back to “baseline” and I know he wouldn’t want to linger forever.

Believe it or not, I am just now starting to really absorb that. I’ve been focused so very long on helping Dad to rally and recover.

Dec. 31, 2012

No fever. Still blood in urine. The nurse said the urine is usually cloudier if there is a bladder infection. I asked her if she would culture it, which she did, but we won’t know the result until Weds or Thurs. Dad is not uncomfortable and morphine will work if it does heat up. They will prescribe antibiotics if he does have a bladder infection.

She did say it could be kidneys. Dad has back pain off and on so it’s hard to say if that pain could be from kidneys. If that’s the case then that is another step toward his organs struggling, which also accompanies heart disease.

The bath lady said Dad was weaker than last Thursday, although I think he is slightly better than he was Friday and Saturday. “Stronger” means if you can get him upright as dead weight, he can stand a few seconds with you bear hugging him or helping him to stand at the walker. He has iron upper body strength, as is evidenced when he grabs things behind you when you are trying to transfer.

Dec. 31, 2012

Tommy brought his girlfriend from school home tonight. I introduced Dad and said, “She is from Portland.” His response? “It’s not her fault.” Spoken like a true Washingtonian, still!

Dec. 31, 2012

I never thought this is where I’d be saying goodbye. Dad had loose stools and was tired, sitting on the John. “I feel so weak” he said. I said, “Well, you’ve had an amazing run but your heart is failing you. But I want you to know that you have raised good, strong people. We will be OK. And we will do the best that we can to help you be comfortable. I wish I could make it be easier. “ He told me that he is proud of me.

Jan. 1, 2013

Today Dad told me, “In my next life I’m going to come back for you.”

Jan. 3, 2013:

High (low?) lights:

Dad does not have a bladder infection – but the blood in his urine has cleared (we don’t know what cause it – maybe kidney function?). The bath lady says Dad is weaker physically and she wants to bathe him in bed; so she is coming Mondays and Thursdays at 8 a.m. before he gets dressed. He is getting a little more agitated in the afternoons/a little more dementia, less settled and worried about whether I am there. I would say Dad is on a plateau, to use Hospice’s term. Hospice says that, with CHF, there can be these long plateaus, but there is not usually recovery/improvement… it’s kind of a slide down a series of plateaus unless something sudden happens. And hard to predict.

Emotionally, however, Dad is VERY dependent. He accepts the caregivers, but he is very vigilant (on the edge of agitation) if I am not with him pretty much all the time. I went out with Todd to a movie last night and Maddie came over for Dad’s emotional security. He didn’t want to leave the dinner table – even though he was exhausted – because he was counting the minutes until I said I’d be home at 9. Starting at 5 a.m., he asked the caregiver to get me up. I relieved the caregiver at 6 a.m. and Dad called out to me four times in an hour. He kept wanting to know I’m there.  So, same, same… not easy but stable.

Addendum: Today was the first day that Dad really had to have the portable oxygen for lunch and dinner. He was gasping at lunch and again at dinner until I brought out the tank. He really needs oxygen pretty much full-time.

Jan. 8, 2013

Dad was pretty “up” through lunch time but was fairly anxious and agitated in the afternoon.

Confusion/agitation — It’s hard to say exactly what causes the confusion. It can be a result of hypoxia. Hospice also says that, as part of what they call the “life review” process, some people become more distant from reality and begin to transition. It can take a lot of forms. Agitation can be related to a feeling of anxiety and loss of control; I do think Dad feels very vulnerable being picked up by other people, including women who are sometimes shorter than he is. And late in the dying process, it is common for there to be a restlessness and struggle. I don’t know that this explanation helps me all that much – except to understand that it’s common and takes a lot of forms.

Jan. 11, 2013

As Dean will attest, Dad’s had a pretty rough day and a half. The nurse came out yesterday to check on blood in the urine and found him very short of breath with a BP of 180/83. She gave him a Lorazepam and morphine to get the anxiety and breathing under control. He had tried to get out of bed – and almost succeeded – around 6:45 a.m. Really wiped him out and obviously did a number on him.

He is increasingly confused or agitated in the afternoon. Wednesday he was confused coming out of a deep afternoon sleep – he couldn’t seem to connect the dots to swallow his pills. He just kept sticking his tongue out. Eventually Dean put water to his lips and that seemed to make the connection to try to swallow them.

Wednesday night he had shortness of breath and/or agitation virtually every hour from 1 a.m. on. Last night was worse, although we were – as told – giving both morphine and Haloperidol. He started awakening and having problems at 11 p.m. and it continued every hour or half hour from that point on.

Jan. 12, 2013 (to friends)

I just wanted to let you know that Dad passed away Saturday, Jan. 12, having slipped quickly over the last 24-48 hours of his life. Dean and I were with him (Scott and Bruce were en route but that last day went unexpectedly quickly). He was a great guy until the end, touching those who came in contact with him as a true gentleman, and of course sharing large passages of poetry he memorized long ago. The past six months have been pretty difficult and I am glad to see him released from the challenges of very old age (96). As Dad often said those last few months, “It isn’t easy being me.”

We will hold the celebration of his life on Saturday, February 16, at 1 p.m. at our “home” church in Tacoma, St. Andrew’s Episcopal.