Expert tips and Tricks for end-of-life caretaking; Parkinsons' edition
December 25, 2021 5:53 AM   Subscribe

Trigger warning: illness, death, and a heavy dose of the corporeal. Do not read if you're not up for a bit of a bummer on an already fairly dreary Christmas. Seriously.

My dad is terminally ill and nearing the end of his life. He has Parkinsons, brain cancer and seizures, diabetes, hallucinations, dementia and who knows what else. We're working hard to keep him from getting Covid. He is at home and receives palliative care.

Under no circumstances will he be visiting another doctor's office or hospital or nursing home. My mother would set fire to the house on his behalf before letting that happen. He is at peace and is 100% aware of all of this. I'm focused on his comfort and everyone's safety.

He's occasionally lucid and can sometimes follow instructions and is sometimes awake but eyes closed and completely unresponsive. We think some of those moments are seizures, but it's not really germane.

He has a catheter, sleeps about twenty hours a day, is mostly disinterested in food but still drinks water and has been excited about artichoke dip and chicken wings and banana bread. He had a little beer last night. I would guess 200-400 calories a day.

His urine is increasingly dark, he has an inconsistent but more frequent wet cough. He cannot stand on his own. We know the signs of near death and my mother has been present for deaths before. I haven't, but I've googled it and know he's close.

Hospice is coming next week.

Bonus difficulty level: he is 200 pounds and 6' tall. Mom's 100 lbs and 5'. I'm around 140 and 5'4. He's dead weight and can do very little to help us move him.

He cannot get out of his chair (medical grade recliner) without assistance. This week my mom and I learned about Stand and Pivot from the home care nurse who is here four hours, five days a week. (She's amazing.)

I looked that up, and when we shifted him to the commode last night, it was safer than our usual ad hoc gymnastics.

So, knowledgeable people: What are some good things that would help us be safe, cause him the least distress, and help him hold on to his dignity, preferably without killing any of the three of us? Search terms like 'Stand and Pivot' and 'Squat and Pivot' have been helpful.

We thought he was dying the other day because he didn't eat, drink, or wake up for 24 hours but then woke up, had dinner, watched Jeopardy, got some of the questions right, and then we watched a movie. He could be dead in two hours, two days or two weeks.

We're focused on the practical as one is at this point. No need to sugar coat anything--all of us are in the land of no illusions.

Thanks for looking at this on Christmas.

The whole extended family just got Covid and can't come for Christmas. Literally yesterday. That's not part of the question that's just me with a 'Wow, this sure is sucky!' comment. I am otherwise a conduit of positive and helpful benign steady presence--comfort in, dump out--so don't get to go around saying 'this sucks' and also I miss my husband and kid and cats and dogs and I'm homesick and it seems like it will be so long before I can go home it's fucking raining and thanks for letting me have this moment of self-centeredness.
posted by A Terrible Llama to Health & Fitness (21 answers total) 21 users marked this as a favorite
My mom also had Parkinson's, and died on Christmas Day 2008. (CW: helping someone die when they want to). She stopped eating and drinking several days before she died, quite deliberately (I still hold it against her--she was an Episcopal priest and I know she decided she'd quite like to die on Christmas Day). I think the thing we did best was invoke my sister's health care power of attorney to keep them from taking her to the hospital when they realized she was dehydrated. We sat around with her and celebrated Christmas while she was in Cheyne-Stokes breathing.

Really important to get help lifting. Mom was only 120 pounds and it took me years to recover from lifting her. And don't feed someone who is trying not to eat - I still feel bad about that tablespoon of potato I got into her before I realized.
posted by Peach at 6:30 AM on December 25, 2021 [1 favorite]

Many, many hugs to you, A Terrible Llama. This is terrible at the best of times but it’s so much worse during a pandemic when you’re homesick and can’t have your extended family with you.

I don’t know if you have a transfer belt but we’ve found them helpful when having to help my mom up or down. They give you something to grab hold of besides a limb or clothing and make transfers a lot safer. There are also two-person slings that can help you pull a person into a sitting position.
posted by corey flood at 6:39 AM on December 25, 2021 [5 favorites]

Wow, I am sending you love today.

Not parkinsons, but perhaps helpful.

A nurse taught us how to change sheets on an occupied bed, and that was incredibly helpful for us. Focusing on a clean room and bedding and clothing was helpful. If your dad is on oxygen, it's best to unhook the tubing before moving him.

Having a cup with a sipping lid was more helpful than a cup with a straw.

Hospice will be helpful -- they gave us a pamphlet that went over things like not pushing food or drink on the patient, how to maintain patient dignity. Seeing everything in writing was helpful for acceptance as well.

If they bring you meds for your dad, things like painkillers or anti-anxiety drugs, don't be timid about asking specific questions and using them. We barely touched them because we didn't understand the dosage or the effects or the timing, but I wish we had known more and used them. When the nurse came to do paperwork, she destroyed all the extra meds, and quite honestly had I known, I might have kept some of that lorezepam in personal reserve for the weeks that followed.

When my dad passed, he was in home hospice but we couldn't get a nurse to come because they were all caring for other patients (the season was changing and that has some sort of ancient, primordial affect on when people let go), so we did the best we could. You might question what you might have done better. If that happens, please make peace with that.

Be prepared for things to happen quickly. Time elasticizes while you're caring for a terminal loved one.

One of our hospice nurses told us that people often wait to be alone to pass over. With my dad, we all sat up with him until 4am in vigil. I went to bed, and my other two family members fell asleep for an hour sitting at his bedside, and in that short hour, he left quietly and peacefully. I'm not saying to leave a terminal patient in need, but at the end I think he perhaps needed a little privacy to let go.
posted by mochapickle at 7:04 AM on December 25, 2021 [19 favorites]

Using a sheet to help move a person in bed or to sit up can be helpful.

Lift with your legs.

Remember to take care of yourself too! Getting a meal service and/or someone to help clean house can be extremely useful and take some stress off.

Have any conversations you feel you need to have, provided they don't stress him or you too much.

Best of hugs and thoughts to you.
posted by Brandon Blatcher at 7:07 AM on December 25, 2021 [2 favorites]

Also, if you haven't already written out his funeral wishes, it might be good to do that now. Having a list of exactly what is wanted and sticking to it will make things easier with the funeral home.

And the options are hard to navigate in a time of grief. For example, I thought cremation would be really simple, but it's not: You have to choose a vessel for the body for the actual cremation process (anything from cardboard to mahogany, for the short period of time the person uses it), you have to choose a container for the ashes (I picked out an urn but before transferring the ashes they put everything in a hard reinforced plastic box and we actually much preferred the box, and it turned out the urn was the wrong size for the niche at the cemetery), and there was much internal debate about what to engrave on the urn itself, and you're in such a state of grief that it's impossible to think of appropriate and fitting words to sum up someone's life in 29 characters or less, because how can you possibly do that in the best of times.

Also, for getting financials and affairs in order, you may need several copies of the death certificate, and it seems like everyone wanted originals.
posted by mochapickle at 7:19 AM on December 25, 2021 [2 favorites]

I agree that many organizations claim that they want the original death certificate. In our state (in the US) you take the original death certificate to your County Court Clerk’s office and they can make as many CERTIFIED death certificate copies as you might need. Cost is minimal, I think.
posted by serendipityrules at 7:38 AM on December 25, 2021 [5 favorites]

Hugs to you Llama. My dad died of Parkinson's in February 2019, although he was at an in-patient hospice. I was there for the last 15 hours or so, and by that point his body had pretty much stopped eliminating. So not much help with transfers I'm afraid.

Even if he is sleeping/unconscious, holding his hand and talking can provide comfort for both him and you.

Our hospice provider did some suctioning to clear up mouth secretions that he couldn't do anymore, but there seems to be some differences in opinion on whether this is helpful or not.

Sending comforting thoughts your way.
posted by weathergal at 8:05 AM on December 25, 2021 [2 favorites]

My best to you this crappy holiday time.
While my Dad was slowly but inevitably dying at home, I was fortunate to have my siblings and friends to just share the crazy weirdness of the situation, and to be willing and able to laugh about the whole thing.
Not in front of my mother or my dad necessarily, although sometimes we all broke down laughing at how hard/weird/sad/trying/lovely the whole thing was, but often during a break or by phone. Your friends and family want to be there for you -- let them.
They may help by emotional support, dropping off food, running errands, whatever you need. It's a gift to allow them to help you, because they want to.
Hang in there.
posted by mmf at 9:30 AM on December 25, 2021 [2 favorites]

You're doing an incredible thing. I've done this twice and it seems like you're on top of the most important stuff and people have made good suggestions above. And I'm agreeing with you that at the very end it can be a very unclear process -- "It could be two days or two weeks from now" is a very normal way that the final days progress.

Two things I will suggest:

-- Do you know what to do at the moment of death? Like, are you clear on who you call and how he will be transported, and which funeral home or mortuary services you will be using?

-- And have you written an obituary, either formal (like for the newspaper) or informal (the email you want to send to friends and family)? Writing the obit was unexpectedly hard for us in both the deaths I've been a part of. This would be a good time to start it, if you haven't, and also find a photograph or two that reflects who he is/was.

I'm sorry for your loss.
posted by BlahLaLa at 10:05 AM on December 25, 2021 [3 favorites]

Best answer: Definitely if you have people saying "let me know how I can help" or "how can I help", and they have access to a car/driver etc, send them to the grocery store or Walmart or the pharmacy for whatever supplies you need. Venmo them cash for it. Keep a notebook in a central location so you can keep a running tally of what you need and who has offered to help.

Canadian Virtual Hospice has a playlist of caregiving techniques like moving, bathing, mouth care etc.

When hospice comes, put all the instructions in that notebook, and also ask if you can record at least audio if not video on your phone for everything you're being told and shown how to do. As advised above, if you do not robustly understand the medication instructions* or care instructions ask for clarification until you do.

*In every hospice situation I've been involved in or discussed with friends, there has eventually been liquid morphine. And there comes some very specific - and yet somehow unspecific - instructions about dosage. That's an instruction as much as a warning. There are unspoken words there. It is in part that you're being told there comes a level of morphine application that's a point of no return: anything that needs to be said should be done before then, but also you can't give someone increasing amounts of morphine and then stop giving them that much morphine because that's cruel, so you are on a committed path at that point. The morphine is also hastening the outcome, and to some extent there are some decisions in your hands. Nobody can say that part out loud, though. And when you're an exhausted caregiver trying to absorb all this information, your takeaway can be "don't give too much morphine" but that's not exactly it.
posted by Lyn Never at 10:13 AM on December 25, 2021 [24 favorites]

Best answer: A Terrible Llama, I am so sorry about your dad.

My father died last year: here's some scattered things that may be helpful for you.

First, yes to keeping your father at home. I had my father taken to hospital about 36 hours before he died (I panicked), and they added literally zero value to anything. There is, of course, nothing they can do. Like, really really nothing.

You may find there are people around you who seem to know what to do, or seem to have strong ideas about what you should do. Like, that your dad should go to the hospital, or that he needs water, or whatever random thing. In my case some people seemed to have a fixation on my dad's physical symptoms, which was weird to me because by then we knew he was dying. At a certain point it's not a medical situation any more, you know? Because you are no longer trying to save their life. So don't let other people drive or persuade or bully you. Just keep your focus on your dad, and your mother, and do what they seem to want, or what you know they would want.

I got a lot of good advice from my father's sister, a retired nurse who has seen a lot of death. She told me something really important: that dying is like childbirth, like labour, and that it's helpful to think of your role as kind of like a midwife or doula. Like, you are holding their hand, breathing with them, encouraging them, and soothing them, through what can be a very long process. I was so glad she told me that. In my father's case, he ended up actively dying for a period of about 10 hours, and if I hadn't been prepped I think I might've run around raising an alarm and calling for help, like on a TV show. But he was dying. You can't stop the death. All you can do is be present and there with them while it's happening.

mocapickle is right about anti-anxiety medication and serious painkillers. I had to push to get them prescribed for my dad in his final days, which was amazing to me, and nobody ever clearly explained to me how to administer them. (How much, what kind of timing, etc.) The situation was somewhat unusual because it was peak COVID, and so I think medical staff were generally panicking / not at their best. Still, I was amazed that they didn't seem to have a plan, a routine, for that kind of thing. So one thing you can do for your father is to insist that he have access to serious painkillers and anti-anxiety meds, and to ensure they are administered if he seems to need them. If you don't already have those kinds of meds, on-site, definitely get them now.

mocapickle is also right that you should consider keeping the medication afterwards rather than letting it be destroyed. I wish I had done that. A few days after my father died (in a country I didn't live in, where I therefore had no family doctor), I went to a walk-in clinic for anti-anxiety medication, because I had been having some kind of panic-attack-type reactions. The awful doctor, who I will never forgive, prescribed me literally two pills. OMG. Because they are a controlled substance, and people are sometimes drug-seeking. I will never forget that, it was just an awful capstone to a terrible time.

My last piece of advice: don't rush to call the funeral home after your father dies. There's no hurry. It's over. And it's the last time you'll have with him. I stayed with my father for hours before I even told the hospital staff he had died. My initial instinct was to immediately alert everybody and I am so glad I didn't. I did all kinds of weird things in those hours. I washed him. I prayed. I read aloud. I played music from my phone. I made everything perfectly neat and clean. It was meditative and precious and ritualistic and strange, and deeply satisfying.

Oh and also there will probably be things you'll regret about how you handle these last days. I think that's inevitable. Don't beat yourself up. Death is awful and there's only so much you can do to make it less bad.

Love love love to you and your family.
posted by Susan PG at 10:17 AM on December 25, 2021 [35 favorites]

Best answer: If you are not already familiar with the sound of a “death rattle,” I would recommend Googling for audio samples. (Use headphones if other people are around.)

It’s a fairly unmistakable sign that the end is very close, and it can be distressing if you’re not prepared for it (more so for onlookers than for the patient, from everything I’ve heard).

It’s worth being familiar with other signs in this family, like myoclonus and Cheyne-Stokes breathing, but in my experience the rattle is easiest to recognize. It can also be heard from the next room.

My heart goes out to you and your family. I’m so sorry.
posted by armeowda at 11:13 AM on December 25, 2021 [2 favorites]

I don't have advice for your exact question but just wanted to say I'm so sorry you're going through this. It sounds like you're handling this impossible situation as best you can, which may not feel like you're doing the best. But I'm willing to bet you really are.

I'm in a caretaker role and this year, the holidays have been harder than ever. A dear friend and I were chatting tonight on the phone. He saw his father through end of life medical issues and said something to me that I found a tiny bit comforting: as difficult as this is -- and it really, really is -- you will look back on this time and never regret being there for your loved one.

I hope things get better for you soon. Sending you love and wishes for peace from an internet stranger.
posted by Majorita at 6:28 PM on December 25, 2021 [2 favorites]

Response by poster: Aw guys, this is so helpful. I'll watch the videos carefully tomorrow, though I did watch briefly tonight.

Sorry about whatever is incoherent here. Yesterday I added 'sugar' to the grocery list and spelled it 'shower.'

To a few questions:
-- Do you know what to do at the moment of death? Like, are you clear on who you call and how he will be transported, and which funeral home or mortuary services you will be using?

Yes, my mother has explicit plans to immediately go to pieces after about seven years of this and given that, has provided me and my brother with the deed to the house, access to bank accounts, the names of the lawyer and accountant, the funeral home and contact. All of their financial information, accounts, and instructions about how to handle the financials immediately following. There's a family notification hierarchy and we'll follow that.

The house is in my name and my brother's. My brother has direct access to the bank accounts and I think he has power of attorney (he lives near by, I do not; this is fine.)

If the question is literally 'immediately following' we'll probably sit quietly and stare at each other for awhile.

Mom bought the coffin and her dress. She ordered the specific flowers, and also table arrangement for Christmas *at the same time*. She got his suit cleaned. We went out together and got me boots for the funeral and she bought like a sweater for her dog or something.

Per an earlier AskMe, I got a nice dress. My husband, who isn't here because Stuff, has his clothes ready. One day for the wake. One day for the funeral/internment. Our thirteen year old is aware of what is going on.

I don't know about other people's families, but mine seems...surreal. But I guess this is one of those quiet weirdnesses of life that people don't talk about or understand until you've experienced it.

-- And have you written an obituary, either formal (like for the newspaper) or informal (the email you want to send to friends and family)? Writing the obit was unexpectedly hard for us in both the deaths I've been a part of. This would be a good time to start it, if you haven't, and also find a photograph or two that reflects who he is/was.

Mom wrote it a few months ago and enlisted me and my brother for the eulogy. I have bullet points, he'll deliver it. I think we'll get hammered after Dad dies and finesse it and my brother will deliver off the cuff at the church funeral based on half remembered talking points.. (My brother is great with the delivery, and I can make sure the important points get delivered. For example, how much he loved his wife.)

Get Certified copies of the death Certificate is good advice.

I am aware that people sometimes wait until others leave the room to pass and I told my mother, who again, has been through this more than me. She seemed surprised, but I see that as 'can you all please leave so I can have some privacy please?' and my dad is absolutely that kind of guy.

Food: no one will make him eat or drink anything or resist his eating or drinking anything. He gets what he wants and that's it.

We have a flotilla of available drugs and know how to use them. I hate we are a 'be your own doctor' country but we are. We do not have drugs available for the death rattle.

I understand that's more uncomfortable for the family than the patient, but if we can spare anyone anything, we will. I wish someone would prescribe those meds *before it fucking happens* But I don't know. Maybe hospice can facilitate. I sure has hell hope so.

My Dad's at peace with his God and ready to go. He an my mom have said all of the things they need to say to each other.

Now it's just waiting. I worry a little of the novelty of my being here perking him up. Like now he feels like he has to play host, because this is more than I've been around in decades.

I've been here a week. I'm so tired.
posted by A Terrible Llama at 8:01 PM on December 25, 2021 [16 favorites]


Before my Dad died but when he was already unconscious, I snipped a little lock of his hair.

Also, I realized we had already had our last conversation about two days after it happened. The hospice staff put him on stronger meds and it suddenly meant the last conversation was already behind us without us realizing.

From my hospital experience, a lot of patients suddenly perk up a few days before death, usually for a day..

I wish you and your family peace and comfort.
posted by M. at 10:50 PM on December 25, 2021 [2 favorites]

I'm here in solidarity. Mid March will be the 2nd anniversary of my mom's death. My job (at a college) shut down for a week to shift online for COVID. The following day I got the call that mom was going downhill so I jumped on a plane. She always had a sense of timing.

First: You are doing really well. Individually and collectively as a family, it sounds like you have lot of the details sorted. Which is great, but might also make you feel at loose ends as you run out of tasks to accomplish and you are all just...waiting.

Do what you can for self care. The exhaustion is real. It's OK to take a nap or take the scenic route to get some takeout food. It's also ok to laugh, to zone out, to eat cookies for dinner, etc. Just do what you can to treat yourself as kindly as you are treating your dad and mom. What you are doing is hard and important.

A few other thoughts:

When you say hospice is coming "next week", is that in 2 days or 7 days? If it's the latter, can they come sooner to provide more help in terms of moving him from his chair, etc. A call to check in and update them on his condition might get someone there sooner. They are usually very good with all the meds as well. (Nth-ing making sure a few of the lorazapams or whatever-pams are set aside for family use. Just be careful not to mix them with booze.)

One of the things I did during my week+ with mom was put together a playlist of music she loved, along with some suggestions from family and friends for mellow music. Visitors were restricted, so extended family and friends appreciated a way to connect/contribute if only with a song title. It wasn't super long, and at that point, she was unresponsive, but it was comforting for me and hopefully for her as well.

Don't be surprised if things don't go to plan. Death and grief are just weird. Your mom may not go to pieces as she has planned (and earned). You may weep through the entire funeral or you may not. There is no right/best way to get thru this. Feeling like you are stumbling around and making it up as you go along? Yep. Same.

My last thought: If you decide to not have a funeral right away, I'd still suggest doing something as a family - a zoom call or whatever. The ritual of gathering can be very helpful in the grieving process.

Sending you strength and peace.
posted by jenquat at 12:14 AM on December 26, 2021 [3 favorites]

You Are A Good Person for doing all this.
posted by lalochezia at 5:30 AM on December 26, 2021 [1 favorite]

So sorry you’re going through this. You may be able to rent a hoyer lift to help transfer him. This was recommended to me by staff at a skilled nursing facility when they wanted to discharge my mom to home.
posted by fozzie_bear at 10:02 AM on December 26, 2021 [2 favorites]

So sorry you're going through this. It is a very hard but also a very important time.

If you have something like a "death doula" available where you are I would look into it. When my mom was in her last few days, we decided it would be nice for her to get a massage because she seemed uncomfortable. This massage therapist had some kind of gift around death -- she was an amazing help. Actually called us up at midnight to see if she could come over because she thought the time might be approaching. I don't know what all she did with my mom (we gave them privacy) but my mom seemed much more comfortable and serene. She was also a huge support to me and my brothers. I don't even have her contact info (she was sent through an agency), but I'll never forget her and her kindness.

Also, if there is money available to be spent now, hiring additional nurses to come in a few times a day was also really helpful. My mom was very private and didn't want her kids doing things like changing diapers, and having some "pros" come in preserved a lot of her dignity in the end. Pro tip: banks can't or don't bother to collect balances from the deceased, so if your father has credit cards you could use to pay nurses that's one way to facilitate making extra nursing care happen.

Good luck to you. This is tough -- really tough. But it is amazing that you can be there. Take the opportunity to give your dad a lot of hugs if that's his/your thing.
posted by nixxon at 11:00 AM on December 26, 2021 [3 favorites]

I just wanted to confirm that this stage is super fucking weird. Totally surreal. Like, you're largely going through at least the absolute necessities of life and probably some optional stuff too and also just hangin' out waitin' for someone to shed the mortal coil. You've taken care of whatever errands you feasibly can in advance, and now you just, what? Eat meals, go to the bathroom, look at your phone, watch some Friends, watch things progress?

Bereavement is so strange. It's fine to acknowledge it, laugh and cry about it, shake your head in disbelief. I'm sorry for your impending loss.
posted by Lyn Never at 2:08 PM on December 26, 2021 [4 favorites]

Response by poster: Warning: bummer to follow.

He has Parkinsons, brain cancer and seizures, diabetes,
hallucinations, dementia and who knows what else. We're working hard
to keep him from getting Covid. He is at home and receives palliative

Updating: he died a couple of days ago and Covid has been listed as the official cause of death.

He was fully vaxxed and boosted, but died a horrible death from Covid, likely because someone out there either didn't get fully vaxxed or didn't get boosted or didn't wear a mask or whatever.

This was a sucky way to die for a guy who was already incontinent, having seizures and barely mobile but had made arrangements for long term care in his own home so he didn't have to die in a hospital. He had lots of advantages and also none. He died in our living room, unable to speak, suffocating, but high enough on morphine that he hopefully didn't know.

Anyway: if this bummer of a story is useful for anyone reading this to talk a friend or family member into getting a vaccine or get boosted, it's worth the time I took to type it. I know I'm preaching to the choir here, but who knows. Maybe it will be useful somewhere. Maybe someone who hasn't gotten around to getting a booster at CVS will get one. Who knows.

I tested positive, having gotten it from him. It's not a big deal. I'm 2x vaxxed and boosted also. I'm quarantined but it's not going to kill me and I'm just hanging out on the internet, planning the summer garden, and maybe doing some shoe shopping. I have cough drops and tea. I get out of quarantine just in time for the wake and funeral.

What covid is to one person is absolutely not what covid is to another.

Thanks so much everyone for your help and support.
posted by A Terrible Llama at 1:59 PM on January 10 [6 favorites]

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