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…
INSTRUCTIONS Updated Jan. 9
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
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
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).
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
Get urinal in place
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.
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!]
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.
IMPORTANT: YOU SHOULD HAVE A BACKUP PERSON WHEN YOU MOVE DAD TO/FROM THE JOHN – HE TRIES TO GRAB THINGS AND IT’S DANGEROUS IF YOU TRY TO PULL DOWN/UP HIS BOXERS ALONE. IF YOU ARE ALONE AND HE HAS AN URGENCY, USE THE COMMODE. YOU CAN SEAT HIM BACK ON A TOWEL (WITHOUT HIS PANTS) IN HIS RECLINER IF NECESSARY FOR SAFETY.
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.
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
TRANSFERRING AFTER DINNER:
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
** 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!