Lessons learning from supporting a terminally ill parent

[Anonymous]

I’m sorry for your loss, OP. It’s very generous of you to share what you learned with those who have not yet walked this path.

[Anonymous]

Anonymous wrote:My dad died in the hospital on 6/27. We were trying to get him home to hospice and it just didn’t happen in his case. However, my significant other is a hospice doctor so I knew somewhat what we might be in for and OP is correct it’s extremely challenging, even for well resourced families and damn near impossible if the caregivers have jobs or other responsibilities like young children. That being said I obviously believe it’s worth the sacrifice, but families should go in with their eyes open. Sadly there just aren’t a lot of great options for dying in our country / culture. OP, condolences to you as you navigate your grief and the ongoing tasks associated with your loss. I’ll be thinking of you.

OP here - my condolences to you also. I'm so sorry you didn't get any peaceful time at home with your Dad, though perhaps you (and your Dad) were spared other challenges. In the end it's hard to lose someone, no matter the specifics. I'll be thinking of you as well.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Thank you for this. And I'm sorry for your loss.

I would add one more thing--if your LO is hospitalized, you need to physically be there when the doctors are doing rounds. They will not call you when they are in the room, even if you leave a phone for them with a number.

So true!! This was impossible to do during covid but being in the hospital in the morning is critical. I find that if I’m there between 8 and 11 i will catch rounds, follow-on discussions about tests or specialists, and sometimes will be able to help connect the dots between people. (A technician comes in to schedule a procedure but might not have enough info to know that multiple things are happening and they need to be in a specific order for instance. Or a nurse might not have had the chance to hear the attending physician wonder about possible concerns or symptoms and if you can flesh things out for the nurse then they can pay closer attention to things in question.)

Another good time to be at the hospital is for shift change at night. For many of the same reasons above - meeting the overnight staff helps you if you want to call and check on someone overnight, and you can provide that more nuanced/detailed information about a patient which might not be fully captured in chart notes. Even just “my mom really loves a cup of tea before bed if that’s possible?” Can be helpful for everyone. But sometimes it’s also things like taking the nurse aside to say “Just a heads up that Dad will have a much easier time taking his meds if you give him apple or tomato juice instead of water to take them.” Little th8ngs like that help the nurses, help the patient, and also let you know you’re making a difference.

PP back to add a few more things.

Be aware that VA now has a law that caregivers have to be allowed in with the patient. If there is another pandemic (or this starts getting really bad again), you might not ba allowed to leave, but you can be with your LO.

I found being there from 7-6 the first few days was really important. There are doctors coming in at odd times, and tests happening, and decisions being made about course of action. Sometimes they rounded super early. Other times they were delayed by an emergency and didn’t come around until the afternoon. And often one doctor dealing with one system (like the heart) won’t know what another doctor (like kidneys) are doing. We even had a situation where the “electrical” cardiologist and “plumber” cardiologist had 2 different plans.

Once things are better known and there is a course of action, you can just be there in the morning. And keep an eye on weekends, especially if your LO is checked in over the weekend. Testing is harder to get and inexperienced staff are on.

[Anonymous]

So sorry for your loss OP. And thank you for sharing, because I think my MIL is terminal. I

I'm guessing she has 1 year, she lives 1500 miles away, friends near her but no relatives, no income, and only 5 figures in the bank. She says the only way she is leaving her state is after death.

We have no idea what Medicare would cover for hospice. Will it pay for it? I'm hoping somehow we can transport her here for hospice.

[Anonymous]

I’m so sorry for your loss. We, my siblings and I, were blessed to care for our dear mom at her home until she died. We did shifts until things got bad and then we all stayed 24/7. It is very hard, but we will never regret our decision. Our mom was always so good to us. Bless you.

[Anonymous]

Anonymous wrote:So sorry for your loss OP. And thank you for sharing, because I think my MIL is terminal. I

I'm guessing she has 1 year, she lives 1500 miles away, friends near her but no relatives, no income, and only 5 figures in the bank. She says the only way she is leaving her state is after death.

We have no idea what Medicare would cover for hospice. Will it pay for it? I'm hoping somehow we can transport her here for hospice.

Medicare paid for my mom’s hospice.

My DH recently died and his insurance covered hospice as well.

[Anonymous]

Thanks so much for posting this, and I’m so sorry for your loss. This advice is so timely and helpful.

I’m going through something similar (I’m the OP of this thread: https://www.dcurbanmom.com/jforum/posts/list/0/977757.page#20133693) and would love any other advice you have. We thought we might get 6 months with my mom, but it looks like that was overly optimistic. If you have any other words of wisdom, resources or books that you found helpful, I’d appreciate whatever you’re willing to share. I feel like I’ve wandered into a strange world of end of life decisions and emotions that I was not remotely prepared for.

[Anonymous]

Pp from 22:22 here and I have a question for OP—if you were advising yourself, how would you suggest pacing yourself? I re-read your prior post and I almost could’ve written it myself (especially the rant about no hospice even if the patient is only receiving palliative chemo). My mom is steadily decking but we don’t know if she has days, weeks or maybe a few months left.

I also live across the country from my mom and have two little kids. I feel this crazy need to jump on a plane and see my mom but also know that’s not sustainable if this goes on for a few months. So how did you keep yourself centered while you were at home and not with your mom? And again, you have my sympathy and I’m very appreciative that you’re willing to share!

[Anonymous]

Hi 22:22, OP here. I have been thinking about you and what I might be able to offer that is helpful, when so much can depend on particulars and on the myriad unknowns of disease progression. Anyway, here are a few random thoughts, in no particular order:
- No matter how much you plan you won't know exactly how things will play out. Life will take its own unpredictable course so if you can try to find a level of acceptance with knowing you will need to be flexible and things won't be perfect, then you'll have a good head start.
- Some things you can plan for are the kinds of things that will give you flexibility. For me that's childcare. Knowing I have back-up care options for the kids if/when I have to leave on short notice, or for a longer stretch, gives me peace of mind. I have a husband who is great, but we also have a nanny, babysitters, good friends, neighbors, etc... They all knew what what going on in recent weeks and were eager to help babysit the kids when I was gone. That was very helpful to me in terms of logistics and also in terms of parental guilt. So let the people around you know that you may need their help and then use them. In many cases they will be so happy they are able to do something useful.
- Similarly with work. I can telework, so could do more from my mom's house than would have been true a couple of years ago. I let my boss know what was going on and was lucky enough to have tremendous flexibility when I needed to be away. This also meant I was working crazy hours, at the end of already nightmarishly stressful days, but in being upfront with work I could triage the most critical stuff and I made it work. Had it gone on for months it would have been a different story, but the one or two weeks at a time approach turned out to be sufficient for my instance.
- You know that your mom is facing death - the questions are just how soon, how hard, etc... In that case I would say get on the plane and go, now, while she's still here with you and fully herself. She won't get better, things will only get worse, and you won't regret grabbing high quality time now. (This kind of gets to my priority thing - I wasn't with my mother in person in her last few days, but I was with her for her last/best calm day. It was really only an hour or two of quality time, but it was a couple of short conversations that I will always cherish. I'm ok w/ not being at her side for the last few days because she had her other kids and excellent care with her. So I had decided ahead of time that I would be ok w/ that kind of compromise.)
- Along the same lines, my kids are sad that they didn't get to see their grandmother again. So if I had a "do over" I would have gotten my kids there at the very beginning of the end - when my mom was still up for seeing them. Maybe that's worth considering for you. Maybe even your kids are young enough that you could relocate them for 2 or 3 weeks (hiring local babysitters a lot!) so you get substantial time in non-tiring doses for your mom? If you decided to do that you would document precious moments and probably never regret the effort.
- I would suggest thinking about what you can/would do for your mom that is uniquely your role or your ability to offer. What does/will she need in terms of support and which things can you do remotely that will let you feel you are doing as much as you can while still maintaining your nuclear family/life/self as you need to? What are the local supports for your mom re the daily care, doctors visits, clinical management, social calendar management, etc... that she has support for? Do you have siblings who will/can shoulder some of those things? Your mom sounds young so she may have friends who are eager to help with some things. Etc... Maybe part of your role is in talking with your mom about what she will need and helping her to plan for or coordinate those things. One of my central priorities was allowing my mother to make her own decisions for as long as possible and doing whatever I could to support her decisions and choices. I didn't always agree with them, but I didn't want to ever feel I pushed her into something prematurely, or that I robbed her of any amount of independence she was able to retain. I sit here now thinking we could have had a few more weeks with her, but it would only have happened if I had pushed her into hospice sooner - and then I would be sitting here feeling guilty for the rest of my life for doing that. I digress. My point is that I was able to support my mom in a lot of her choices by coordinating things from a distance. Lining up care, coordinating doctors appointments (even doing a few by telehealth - which is a rare covid blessing), managing her bank accounts, etc... were all things I could do a fair amount of from hundreds of miles away. So try to find a few things that can be done remotely and are of value. That will be of comfort to you later.
- I don't have books or anything to recommend, but I journal and that is always tremendously helpful to me in stressful times. I also have a therapist and keeping those appointments was a lifeline for me.
- I also made some hard choices to ensure I was as ok as possible. I've written about some of them (sleeping elsewhere, not with my mom, was one of them) and I was certainly conflicted then about doing that. I think it was the right call though. I couldn't do the things I had to do (mother/wife/employee/daughter/crisis manager...) if I didn't stay as together and healthy as possible. It is extremely hard for women to do this. It is equally critical that they (and you) do. Do it for your kids if you can't find a way to do it for yourself.
- Try not to get so drowned by trying to plan for what you think will happen - because it's a false illusion that you can plan for it. It won't happen the way you think, your mother (or you or any number of other folks) won't react the way you expect, outside events will force changes in plans, etc... So let yourself off the hook for longer term planning and just focus on what is possible now.
- Seize the quiet moments when you have them. I had an early morning (because I wasn't sleeping well) when I felt like I had real clarity about what was happening, what felt right for me to do, where I felt ok drawing boundaries, etc... I wrote about it in my journal. It was a good moment. Three hours later we were back in crisis, but I paid attention to the quiet moments of clarity and they helped me hold my center in the middle of chaos. If you can find your true north, or grounding principles, or whatever your equivalent is, that will help you.
- Not sure if you're dealing w/ sibling issues or not - that's a whole other can of worms!
- Try to ask the hard questions, have the sad conversations. Ask about favorite memories, regrets, any unfinished business, wishes for services, how they want to be remembered, tell her what you cherish, look through old photos, get passwords, etc... It's hard to bring those things up but they can lead to very precious conversations. My best friend died when we were 35 and I sat at his funeral laughing while bawling because I had wonderful memories of the night he and I chose the music for his service. It can be hard to face those discussions but they can be full of such beauty that it's worth making yourself do it.

That's probably enough rambling for now. I wish you and your Mom comfort, peace, and some great quality time. If at any time it would be useful, and if you have a burner email you feel comfortable posting here, I'd be happy to chat offline.

Hang in there.
- OP

[Anonymous]

Pp from 22:22 here. Thank you again for all of the thoughtful advice! Just wanted you to know how much it’s helped me. I keep re-reading your posts as I sit in the airport waiting for planes to take me to see my mom and in other odd places and it’s so comforting to hear about someone else’s experiences. Thank you again.

[Anonymous]

Anonymous wrote:Pp from 22:22 here. Thank you again for all of the thoughtful advice! Just wanted you to know how much it’s helped me. I keep re-reading your posts as I sit in the airport waiting for planes to take me to see my mom and in other odd places and it’s so comforting to hear about someone else’s experiences. Thank you again.

Very glad if my ramblings are of any help.

All the best to you and your Mom.

-OP