Tag Archives: congestive heart failure

Our Common Cause as Adult Children

Dad bird hunting

You won’t find this blog post until you’re ready to think about what we have in common: the sometimes-painful, sometimes-rewarding responsibility for caring for a parent during their “golden years.”

The senior years can be tremendously active and exciting – a period of freedom after a long life of work. But for our parents and most of us – yes, us, too – there comes a period when the world shrinks.

Our job, if we love our parents and choose to be involved, is to make their passage during these years as good as they can be.

Almost every day, I stumble across someone who faces their parents’ elder years with trepidation. It happened again this morning, walking with a neighbor.

These are the truths I hear over and over again:

  • Parents don’t want to be a burden; they actively wish to die in their sleep or go quickly, and don’t want the adult child to feel pain over their departure.
  • Parents often live near their lifetime’s worth of friends, while their children are sometimes states away. Adult children worry how they will provide the assistance needed when one or both parents need more help.
  • One sibling bears most or all of the responsibility for looking after their parents.
  • Often, there’s a sibling or sibling’s spouse who is not on the same page about what should happen.
  • We feel drawn and quartered. We may face pressure at work or be trying to support our young adult children or spouses through rough patches in their lives even while we are trying to pay more attention to our aging parents.
  • Having candid conversations with parents about their intentions, physical limitations and financial preparedness is very, very difficult. Few aging parents are realistic and proactive, leaving adult children to worry about whether (or when) they will have to step in and take over.

I learned some truths of my own along the way, truths that surprised me. I fully expected Dad, who had advanced heart disease for more than 50 years, to go out with a big bang. Instead, he rallied over and over again, never quite recapturing the ground he had lost, but persisting even so. He lived at least 15 years with congestive heart failure.

I also learned that quality of life didn’t depend on the things he thought it did. His perspective changed with time, and he was able to be pretty satisfied even though Mom was gone and he couldn’t hunt, fish and enjoy the outdoors as he once did. His world was small, but there were people in it who loved him.

I learned that Dad’s long decline was an important time for him in coming to terms with regrets. He regretted that his father wasn’t more interested in him. He regretted that he couldn’t save my little sister when she became ill with leukemia. He regretted that he couldn’t protect my mother from feeling afraid during her terminal illness with lung cancer. Eventually, those regrets ran their course and were replaced by peace.

I learned that I could give him my love and attention without resentment, even though it meant living my own life in the very slow lane.

I learned that I could have a far deeper relationship with Dad after my Mom’s death than we ever had before.

I learned so much from the last seven years caring for him.

But I understand the fears of those who stand at the precipice of their parents’ old age, wondering and worrying how they will handle it. All I can tell you for sure is that it won’t go quite the way you expect it to. There will be parts that are harder, but there will also be surprising gifts.


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Searching for Answers About Congestive Heart Failure (CHF)

photo credit: womenshealth.gov

When you’re caring for someone with a deteriorating health condition, you can often feel alone. It’s up to you to stay on top of symptoms, reach out to doctors, and try to make sense of information that is unlike anything we’ve ever tried to understand. It seems that congestive heart failure is one of the diagnoses that is most frustrating for health care professionals and caregivers to manage. It can proceed in so many different ways.

A few minutes ago, a woman named Karen commented on a blog post where I shared – in detail – my journal of my Dad’s 10+ year experience with congestive heart failure, as well as his last month of life. She wrote, “I was so lost with questions that couldn’t be found.”

Unfortunately I don’t have answers, but I put my Dad’s experience “out there” in the public view so that caregivers like Karen could see one example of how CHF developed and what happened during the rapidly-changing period that Dad was in hospice. I’m glad it was helpful to her in some way.

Curious, I looked at the statistics for The Henry Chronicles and was astounded to see that 20 people who found this blog in the past 30 days were searching for information about CHF.

Some of the queries were obviously clinical, like, “end stage congestive heart failure,” but others spoke to the painful and powerful experience of a caregiver trying to understand what to expect, how to prepare — emotionally if nothing else: “congestive heart failure journey.”

My Dad’s journey is over, but I am with you in spirit, fellow caregivers, as you try your hardest to make sure that your loved one has the best possible quality of life.


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Yet Will I Try the Last

hospice notes and pills

When I’ve hearkened back to the period that my mother was terminally ill in 1999, I’ve always referred to it as “the bad old days.” I was so exhausted — by trying to keep up with the political machinations of my workplace, be some kind of mother to my then seven and twelve year old children, and care for my mother in rotation with my brothers. I’m proud of the work we did to comfort my mother at home, but it gave me a new definition of fatigue. And triumph.

Old age isn’t for sissies and neither is hospice. Even with the phenomenal care we received from Sutter Hospice, caregivers will feel taxed physically, mentally and emotionally. In the final week of Dad’s life, I updated the growing list of daily tasks that his primary caregiver would need to perform or supervise.

It’s hard to find much information about the practical realities of caring for someone in the terminal phase of congestive heart failure (CHF). Our amazing nurses – Diana Skinner, Mary, G.C., Tony and Barbara — answered my questions about what to expect pretty much the same way. They said that CHF and COPD (chronic obstructive pulmonary disease) are tough to predict; it almost comes down to the will of the individual. Having already realized that my father is one of the biologically tenacious, I expected that Dad would continue to fight to the very end. And so he did.

Even on his last day of life, he clung with a vice like grip to the bed rails, trying to raise himself from the heavy blanket of illness and fatigue that had settled over him.

If you are a hospice caregiver and you stumble upon this blog post, I hope you will not be daunted by the myriad details that you may be asked to manage. Your hospice team will teach you every step of the way. You have only to call and they will come. Hospice staff, volunteers and paid caregivers will help do what you cannot. Friends and family will cheer you from afar if they cannot be a part of the caregiving team.

But in the end, you WILL do it. Some days you will wonder if you can, or think you can’t. You will because you were chosen, and because it is in you. Your loved one knows it and needs you.

When doubt creeps in, take a page from my father and recite this passage aloud from Macbeth. Put some breath under it and raise your voice to a rousing crescendo:

I will not yield,/ To kiss the ground before young Malcolm’s feet,/ And to be baited with the rabble’s curse./

Though Birnam Wood be come to Dunsinane,/And thou opposed, being of no woman born,/

Yet will I try the last. Before my body/I throw my warlike shield! Lay on, Macduff,/

And damn’d be him that first cries, “Hold, enough!”

For the record, then…


Standing appointments:

Monday, Thursday 8 a.m. : Rebecca the bath lady comes. She thinks it is now best to bathe Dad in bed

2X/week (day varies): Dad receives a home nurse visit, usually from Diana Skinner, RN

Monday noon: Dad has a standing appointment here Monday at noon at the house with Abigail Kane-Berghash, a friend and massage therapist


Fill water bottle on compressor with 1” of distilled water daily (usually care staff does this but make sure it doesn’t run out)

Getting ready for the night shift caregiver from Visiting Angels

They are not supposed to measure the medications but they can dispense what we pre-measure.

Pre-measure and set out on the medication log: 4 syringes filled to the ¼ mark with morphine, 2 syringes filled to the quarter mark with haloperidol.

**Don’t take Dad’s hearing aids out until he is in bed; the last thing you will do is swap the leg urine bag for the larger bag that hangs on his bedrail. The hearing aids let him hear you if he forgets what you’re doing “down there”**


Risks/issues you are always or commonly managing:

1)   All the normal health problems – with ongoing medications (morning and evening) NOTE: Dad is now getting evening Lasix (Furosemide) in addition to morning

2)   Shortness of breath and back pain

3)   Fall risk especially when he wakes up and thinks he needs to pee or is confused

4)   Bowel movements or lack thereof

5)   Catheter

6)   Agitation if it becomes a disturbance to sleep or comfort – this is now taking the form of hyper-vigilance, worrying about where I am

7)   Dad’s confidence and security – he is happiest if you’re sitting with him J

8)   Eating/staying hydrated

Sutter Hospice

Our regular RN/care coordinator is Diana Skinner but you can get help anytime from the 24 hour #. Hospice is providing:

  • Nursing visits 2x/week (or as needed)
  • Bathing assistance 2x/week – Rebecca (he has not been strong enough to get in the shower since 12/16 so they bathing assistants have been using washcloths, etc. He has also been too tired to shave on his own and I have also encouraged Rebecca to help him shave.)
  • Social work or chaplain may call and check in

Do not call 9-1-1 unless something happens like a broken hip.  Call Hospice if needed. The sad part: if Dad passes away, call Hospice first, too.


Dad is still taking all of the medications he was before except I am not bothering with the multi-vitamin because it’s big and Dad has enough of a challenge taking the pills when he is short of breath. I have started giving him pills in his room before coming in for meals while he is using oxygen.

He also has a “comfort kit” – see the overview of hospice medications

When Dad gets a new medication related to hospice or new issues, they usually order it electronically from Walgreen’s. The exception is the liquid morphine and liquid haloperidol, which is only available from Knott’s Pharmacy in Carmichael (new address).

Leg catheter

It needs to be dumped every 3 hours or so. If you do not see pee after 3 hours, CALL HOSPICE. It means the catheter is plugged and needs to be flushed.

It gets changed every 4 weeks.


Supplies: urinal and alcohol wipes

You can raise Dad’s pant leg to get at the leg bag

Remove cap

Get urinal in place

Open lever

Wipe nozzle with alcohol wipe

Dump pee – rinse out – spray with Clorox

* How dark is urine is tells you how much to push liquid; it should get lighter during the day but it does not have to be nearly clear *

Shortness of breath and back pain

Start with using the oxygen. Dad doesn’t have to use it all the time.

He generally needs O2 when he is on the john now.

Look for: belly breathing or gasping. Belly breathing = he is pulling in his lower stomach quite a bit and you can see the retraction near the apex of the heart. Sometimes his shoulders go up and down, too.

Worse shortness of breath: gasping and looking afraid, usually with exertion (which can be something as minor as lifting his arms to reach something or folding Kleenex)

Start with ¼ syringe of liquid morphine. See the black mark on the syringe.

If not eased after 30 minutes, give another ¼ syringe.

If ¼ stops being enough and you are always giving it twice, start giving ½ syringe

He can safely have up to 1 full syringe up to once an hour; it’s the equivalent of 1 vicodin.

Dad also has some back pain when we transfer him or if he has been straining in some way. It could be referent pain from congestive heart failure. Treat as you do shortness of breath. Morphine helps with both.

He is generally getting 7-8 ¼ syringes of morphine per day.

The night nurses are finding that Dad needs ¼ vial of morphine 2-3x during the night. He gets short of breath periodically. They also will put on oxygen if needed.

NOTE: Log the comfort medications (including Senna) on the log sheet, and what you gave it for.

Fall risk

Dad forgets that he can’t stand unassisted and he will fall if you are not aware when he wakes up. I am keeping his wheelchair, cane and walker out of reach on purpose. When he asks for them, I remind him that he is not using his cane and it’s not safe for him to get up unassisted – just call for me/us.

He is at especially high risk in the afternoon after a long nap. He also tends to be a little confused and agitated when awakening but has responded to gentle, repeated explanations.

He does occasionally say he wants to get up to pee at night but the night staff is right there and listening for him.

TRANSFERRING – really important

Have the care staff do it if they’re here, with you on “backup.” I prefer to have 2 people on hand.  USE THE CHAIR LIFT IF DAD IS IN THE RECLINER.

NOTE: He uses the wheelchair at the kitchen table because it has arms and it reduces the number of transfers.

**The big thing is to have the wheelchair at a 45 degree angle next to the recliner or bed, as close as possible, so that this is a pivot move.** Position one leg in between his. Your other leg should “lead” and be in front of where you are moving. Explain to Dad – every time – that he should try to push himself up and then you will bear hug him and “dance” into position. He is hard to get into a fully standing position and may be dead weight.

The hardest transfer is off the john. I now have a booster seat and that helps. The big problem is that he grabs the door and you get stuck in mid air, yelling at him to let go! [Update: I removed the door!]

Bowel movements

The primary medication that he is taking to try to keep him regular is Senna. It’s a gentle laxative – nowhere near as dramatic as Milk of Magnesia.


We shouldn’t expect Dad to have a regular schedule like he has before. He’s had bowel movements at 5:25 a.m., 1 p.m., 5 p.m., 9:25 p.m., etc. You keep increasing Senna (adding in 1-2 glasses of warm prune juice) each day that Dad skips. Think of it as a reset button every time he has a bowel movement. And you HOLD if you go over the edge to loose stools – then start back with 1 senna the next morning.


Day 1 after bowel movement: 1 senna morning, 1 senna evening

Day 2 after bowel movement: 2 senna morning + 1 glass warm prune juice, 2 senna evening

Day 3 after bowel movement: 3 senna morning + 1 glass warm prune juice, CALL HOSPICE FOR ADVICE, 2nd glass of warm prune juice at lunch, 3 senna evening

He can receive up to 4 senna tablets per dosing schedule, 8 per day but I’d talk to hospice before you do that.

Hospice may come out for a physical exam. There are “ultra absorbs” in the armoire to put under Dad. They put him on his side for this procedure. I help him stay on his side.


Agitation now usually takes the form of Dad insisting that needs to get up to pee (or wants his cane) or perseverating about where I am.

Distraction is working OK during the day. For the peeing focus, keep explaining that he has a catheter and/or drain the urine bag. It’s more important to manage the agitation at night so he gets a decent rest. Haloperidol is preferred when this occurs at night.

Lorazepam is used for anxiety. Haloperidol is, too, but it is best when you can’t distract the person or get them off of whatever they’re perseverating about. During the night it isn’t possible to use reason/distraction, so haloperidol is the drug of choice for agitation at night.

Haloperidol dosing is just like morphine, and it’s liquid. Start with 1/4 syringe. If that doesn’t work, give a second 1/4 syringe in a half hour. It should make him sleepy.

To repeat what I said above, if morphine is being used to manage back pain or shortness of breath, it can be used in conjunction with Haloperidol.

Dad’s comfort and security

Really, he just wants to be in company with us – which these days means hanging out in his room with him and trying to be interested in what he’s watching when he’s awake. Or sitting at the table with him.  This is a scary time.

Eating/staying hydrated

I haven’t really been worried about food. His appetite is about ¼ what it was. But usually one meal per day gets eaten more. I think he’s getting enough food.

I encourage “small bites” – cookies or milkshake or toast – in between meals, if he’s awake.

I haven’t yet pushed Ensure. I do think his nutrition is adequate.

On the other hand, he is tending to drink too little, especially on a “sleepy” day so push fluids off and on.

DAILY ROUTINE – to the extent there is one! This is what I’ve found works best but you can try whatever you like.

6:55 a.m.        Rise and shine for you! Relieve the night staff

Find out how the night went/review the medication log

Hang out in the living room — make coffee

7:45 – 8:00    Most mornings you will hear Dad stir

He generally waits until 8 to call that he’s awake

8:00                Give him his hearing aids so you can talk to him; open the blinds

Ask if he’s in any pain

If he is, give him ¼ syringe morphine and give it 15 to kick in

Have him wear oxygen – it exerts him to sit up

Swap the night bag with the leg bag that attaches to the catheter

Raise the head of the bed a little, help him sit up and get his feet on floor

Leave boxers on (keeps catheter from being jostled); get clean T shirt, button down shirt and sweat pants. Put pants on just to knees (you’ll pull them up when you help him stand and transfer)

**I am now using the slippers full time instead of socks and shoes**

With a second person (ideally), transfer Dad and pull up his pants at the same time. Give him a minute with the oxygen to recover.

Give him his pills in his room while he is on O2. I now give them to him in batches; otherwise he gets too short of breath.

Put his glasses in his pocket.

Care staff will make Dad’s bed up – but push it back toward round table to give yourself room for transferring to recliner after breakfast

Breakfast:   Usually oatmeal or bacon and eggs in kitchen

Coffee: warmed milk with sugar

Prune juice (warmed) if he didn’t have a bowel movement yesterday

The usual – read the paper, coffee, etc.

This is his best time of the day for socialization! Try to converse a bit.

Around 10 or 10:30

Head back to the room to nap

Check urine leg bag

Transfer to recliner

Put feet up and cover him with blanket

He should probably use his oxygen for a while after moving

He will likely sleep for a couple of hours

If he takes oxygen off, but starts being short of breath, I put it back on

**If he sleeps until 1:30 or so, I may awaken him and suggest drinking apple cranberry juice, which he likes. Note: Hospice says it is usual to sleep more in the last 1-3 months of life and this is part of the process of letting go. They suggest letting him sleep.**

If it’s nice out and he doesn’t sleep as long, transfer to wheelchair and get some fresh air outside.

He has generally not needed morphine during the day – but there are “bad days” and it’s hard to predict

Around 1 or 1:30

Dump urine bag

Transfer from recliner to wheelchair

Encourage lunch – he may need O2 if breathing is difficult

Best liked right now: open face cheddar cheese sandwich + tomato soup

Prune juice if day 3 after BM

He will probably sit at the table for a while – this is also a good time to try to engage Dad

3 or so          Return to room

Check urine bag

Repeat drill to settle in chair for afternoon

**Awakening from nap is usually most confused period of the day. Be especially cautious about watching him for trying to get up**

5                      Think about dinner/do prep as needed

Dinner – He did have lamp chops – the kind with the rib “handle”on Christmas eve. Favorites: mashed potatoes or baked potatoes (still).

Chocolate cake and milk. I don’t give prune juice at night.

Give evening pills in his room while he is on O2.

6 or 6:30        Dinner

If Dad has not had morphine, I usually offer a little red wine (habit/tradition)

Brushing teeth after dinner

He is too tired to do it later, and he can’t stand

We’ve kind of figured out a routine where he stays in the wheelchair and I hold my hand mirror while he brushes; then I hand him water and hold another glass for him to spit. He like to floss first and do the tooth brushing in 2 increments: first upper (spit), then lower


Knowing that we will be undressing later, I usually pull Dads sweatpants down in the transfer after dinner, then cover him with a blanket (and put socks on)

TV after dinner: Dad doesn’t seem to want to watch anything but Military History Channel and CNN but you can surf around or look at “recorded TV” (button on remote) and see if there’s something you might enjoy

He will usually sleep in his chair around 8:30 but stay with him – he will awaken off and on and may start to undress

9:15                SET UP ROOM FOR NIGHT:

Move bed as close as possible to chair to minimize transfer distance

Dump urine

** I usually have the night care staff help me get Dad undressed for bed, and then transfer him **

9:25                Doorbell rings – night staff

Get undressed for night – throw t-shirt and sweatpants in wash

Night staff will work with you to get Dad into bed;

Use the half sheet to adjust or boost him if needed

**Swap out overnight bag for leg bag**

Probably a good idea to start with oxygen after exertion of moving

The night staff know how Dad likes the lights; PUT THE CLOCK ON SMALL TABLE BY HIS BED

They will need help moving the living room chair into place by his door.  9:30  GOODNIGHT!

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I’m Not Alone

morning candles

It’s been almost seven years since I moved my Dad to California, knowing that his cardiac disease was catching up with him. We’ve had quite a few scares since then: a small stroke that temporarily interfered with his ability to speak, a strange seizure, numerous falls and illnesses. During one of those scares, my husband was in Mexico, unreachable, and I was alone at the hospital with Dad, afraid.

I hate being alone when Dad’s life is at risk. I can handle the decisions that need to be made. I can handle the physical challenge of the long hours. I can be strong for Dad so that he is not afraid.

But I want to be able to cry and have someone to hold and comfort me when am afraid. I just don’t want to be alone.

Yesterday my first morning thought was of all the people who are, as one friend puts it, “holding me in the light.”

In recent days, I have heard from a college friend with whom I have been out of touch in recent years. My spiritual and artistic cousin, Lynn, has become the angel who perches on my shoulder with frequent, loving messages, like this one:

Whenever I read your ardent posts as I did just now.. and look at your exquisitely poignant and palpably tender photographs.. I am reminded again and again of the Rumi stanza..  that I am sure you are familiar with but I can’t help writing:“Let the beauty of what you love be what you do.” –Rumi    

 Mostly, I want you to know this New Year’s eve that even though it may seem I am in the background I am a part of that large net beneath the high wire you are walking– where by the way, you are dazzling in your diamond light.  I am not quite breathing with you, but almost…

My dear friend, Lisa, who spent the day on the 18th hanging out with me and cooking for me, is in Italy with her family where she is lighting a candle in every church she encounters. When traveling, Lisa normally devotes her laser-like focus to something food-related, like tasting lentil soup in Turkey, but on this trip, she says she is thinking of Dad and me. She wrote:

It is making me feel slightly better — but marginally so — wish I could be with you to help you through this important time. Your dad is a great man, and you are the best daughter and friend anyone could hope for. Miss you.

Yesterday I wrote my oldest friend, Ellen, about how she had rescued me when we met as lonely adolescents. She wrote back:

I have loved walking this current path with you. I have felt your sadness and pain. I have cried with you. I have wondered, and asked, and railed with you. I have grown with you. I have deepened and broadened who I am with you. I want to be there with you, but also know that you would be caring for me, and worrying about me, while at the same time you are caring and worrying about everyone else in your life. It’s your nature.

This is a hard path. But it’s far harder on Dad as he struggles. The love and support of family and friends makes all the difference. It holds me up so I can hold him up.


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