Super fast decline to stage 7, what next?

Middling Child

I feel like I'm coming here with questions that I know don't have good/any answers, but I am really appreciating all of the shared knowledge and compassion in this forum.

My mother has been on hospice for about a month and in a small MC since April. Moving into the MC seemed to trigger a speed run from late Stage 6 to late Stage 7, even though my sister and I agree that it's a great facility with a wonderful caring staff. Things had been deteriorating steadily in the months before the move, but not as quickly as the last 4 months. My sister has been the primary caregiver for the past 4 years and was a complete rock star in keeping my mom as mobile and active as she was while living at home. (I live about 6 hours away and visit every few weeks.)

Now, a few months later, she is bedbound and all her meals are pureed and hand fed. She had been struggling with chewing and swallowing for a while. Getting through meals seems to take up most of her awake time. With the pureed food, there are times when she eats readily, with constant prompting and encouragement, but other times when she eats almost nothing, just enough to get through a portion of the puree or some yogurt with her crushed pills mixed in. She closes her eyes and just tunes out requests to take another bite, or sometimes she seems to get so tired partway through the meal that swallowing becomes difficult, and then we stop offering food or liquid.

She seems to react happily when my sister or I come to visit (especially my sister), and she's still pretty verbal with us and her caregivers, though it rarely makes a lot of sense. There are times when I can still connect with her (she will sing along a bit with me when I put on some of her favorite music), but other times it's like she's in her own world, staring far out into the distance, unable to make or hold eye contact when I try to engage her. She still smiles when she's connecting to what's happening around her. I don't know how much weight she has lost (she has been losing weight steadily for the last 2 years), but she seems very small and frail to me, though not skin and bones like some have described stage 7 weight loss.

I guess my unanswerable questions are just…how close are we to the end? Are there signs I should be paying close attention to? I am trying to decide if I should take some leave from work to spend time with her in the coming weeks. I'm trying to decide if it's time to tell our other sister, who lives on the other side of the world, that it's time to come, now. It really feels like this could be the final weeks, but from everything I've read, this "final" stage could also last months or even longer. It's hard to imagine that, after such a rapid decline, but maybe I'm projecting based on what I wish for her, and not wanting to imagine the worst case scenario of how long this could continue.

SusanB-dil

If things were already declining, I wouldn't blame the progression on her being placed. She is safe and cared for, and she is blessed to have both of you watching out for her.

Unfortunately, it is true that further progression is an unknown. I'm sure you've let your other sister know of the decline. If finances allow for your other sis, she could come now to visit a bit, and then again at a later date? Sis may appreciate just having that little window of time once more.

My grandmother did a 'hard slide' into stage 7 and was with us for a few more months. A friend's mom was a moderate slide and was with us over a year and a half. And yes, there are 'signs', and although even that can vary, you can check with the hospice nurse, other posts on here, and I'm sure others would weigh in…

fmb

@Middling Child I have no answers to your questions about a timeline for your mother's future. I understand that it is hard to make plans, especially when they involve complex situations like international travel and taking leave from work. My DH is at a very similar place in the progression of this disease, and I ask myself similar questions every day.

While your hospice team cannot provide an exact timetable, they may be able to give you a feel for where things are at. There are some characteristics that are commonly found near the end of life. Near the bottom of this document is the ADAT (Actively Dying Assessment Tool). Keep in mind that this doesn't always follow a strict timeline.

https://us.v-cdn.net/6037576/uploads/M85FKA0SKDC0/dbat.pdf

I'm sorry I can't be of more help. The waiting is so hard.

MN Chickadee

On the one hand if she is still eating, even if not a lot, she could go many weeks or months that way. Some people spend a year in the Broda chair being hand fed purees. It doesn't take many calories to sustain a bed bound person who is hardly moving. But also things can change quickly. Sometimes they just suddenly decline into the dying phase without an obvious reason. Sometimes a common cold, flu, Covid, UTI or similar can be the catalyst. Once she tapers eating to nearly nothing or stops all together you can probably assume her time will be measured in hours, days, maybe a week or two. After that there are obvious signs to look for that hospice can talk about (skin changes, movements, etc.) Towards the end my mother ate just a few sips of ensure a couple times a day for 1 week and a bite of oatmeal here and there, followed by nothing by mouth for another 5 days before she passed. If the sibling who lives abroad wants to see mom while she may be awake and may have a smile for her, now is the time. If she wants to be there at the end probably wait. It's so hard to say, everyone is different in how they progress. But it's likely you will have some warning. Hospice will give you an estimate, though in my experience they over estimate. I think they know people have a hard time with the shorter end of those guesses, like freaking out if they hear they only have a couple weeks. I wanted the end to come, the last weeks were excruciating and I wanted her to be released. When my mom first went on hospice they said it could be a couple months. I could tell by looking at her that was not happening. After a few days they scaled that back to a month, and she was gone 2 weeks later. But it's all estimations. Blessings to you and your family. Mom is lucky to have caring children giving her a loving send off.

cricketw2

Sorry to hear what you're going through..all I can relate is the story with my mama..she was admitted to hospice after a quick decline from bronchitis in April..she lost most of her mobility and became wheelchair bound which is when we initiated hospice. She was eating good and still interacting well with us and took a very sudden turn of 2 days of agitation and being awake all night to going into unresponsive state for a week where she didn't eat/drink or interact and passed away within the 2nd week of being in hospice. I was the primary caregiver for the last several years and it caught me by surprise at how quickly it all happened. All I can suggest is go with your gut feeling I just knew when she was up for the 2 nights and when the meds finally helped her sleep I just knew that this was the end rapidly approaching. It's impossible to know exactly how long, but anytime left is precious time. My prayers are with your family

terei

Frankly, I would stop cajoling her to eat. I would offer food, but not encourage her, if you know what I mean. My own mother had indicated to me that if she did not feed herself, she did not want to be hand fed. We stopped waking her for mealtimes, where she did not eat anyway + we did not hand feed her, per her wishes.

midge333

I agree with @terei. Why prolong the suffering? I am thinking seriously about adding a "no hand feeding" clause to my own advanced directive. It is one thing if the person is hungry and readily eats but quite another if they are ignoring or refusing nutrition/hydration.

Emily 123

Perhaps tell your sister who has to travel what the situation is—that you don't know. You can only convey what the situation is at bedside, and let her determine what she wants to do. She might decide it's better to come now if your mom's still a little interactive.

Middling Child

I want to thank everyone who took the time to read and reply. It's been immensely helpful to read each one of your replies. Thank you, @fmb for reminding me to look at that staging and ADAT tool from Tam Cummings. It's very helpful, and I would say that many of the signs of the final weeks are there, most even. She already meets all the criteria for Stage 7 except for being hyper oral, and she is still able to smile spontaneously sometimes, and she still talks a lot and intelligibly, though the words often don't make sense.

It seems clear enough that if we were not hand feeding at this point, she would slip away quickly. I agree with @terei and @midge333 that we need to talk as a family and with the hospice nurse about how to approach hand feeding. When I helped my mom complete her DNR paperwork a few years ago, she was very clear that she did not want a feeding tube, and I don't want this to be a feeding tube by a different name. Helping her to eat when she has an appetite is one thing, but if her body is ready to start shutting down (and it seems to me that may already be the case), I'm very easy in my own mind about letting that process take its course. But, I don't know how my sister will feel. She's been so focused for years on supporting my mom's health and nutrition that it could be a challenge to make that adjustment. We are not great as a family about having these hard conversations, but maybe most families aren't!

I was able to get permission to work remotely for the next couple of weeks without having to go on full leave just yet, so I can spend time every day with my mom at her MC, and I hope that there may be some clarity in that time about how we move forward. And if nothing has changed at the end of that time, and it feels like we're in for a longer haul, I don't think there is any chance I'll regret the time spent there now. And, tbh, it will be a huge relief not to have to walk around the office trying to act normal!

fmb

@Middling Child It might help your family to watch this Hospice Nurse Julie video about feeding near the end of life.

https://www.youtube.com/watch?v=4DU0_lZe2ds

Middling Child

Thank you, @fmb, I just shared the video with my sister. I think it's a good way to open up having the conversation when I'm there next week, or maybe she'll already be on the same page.

Jeanne C.

https://alzconnected.org/discussion/comment/219412#Comment_219412

Thank you so much for sharing that video. I've been concerned about the hand feeding with my husband and this video was a wakeup call.

fmb

https://alzconnected.org/discussion/comment/219433#Comment_219433

@Jeanne C. @Middling Child

I had watched this video a couple of months ago, but seeing it again today was a wakeup call for me, too. I discussed my DH's situation with his hospice nurse this morning when I visited him. When we instituted hand feeding back in May, he was maintaining a stable weight. Now he has lost so much weight that he is just skin and bones, edema and ascites. We agreed to simply let him feed himself going forward. At this point, he is able to feed himself, but often just pushes the food (puree) around and piles it up on the plate after the first couple of bites. She also instructed the ALF staff to back off from hand feeding. It was strangely peaceful to simply watch him while I ate my sandwich, not having to worry about whether he was eating enough or trying to 'help' him. Another step in the journey.

Hospice Nurse Julie has a number of very good videos about hospice care and the end of life available on YouTube and TikTok. She has also written a book that explains what hospice is, how hospice care works and explains the the dying process. Nothing to Fear: Demystifying Death to Live More Fully, by Julie McFadden, RN (2024).

Middling Child

https://alzconnected.org/discussion/comment/219440#Comment_219440

@fmb , it seems like you did a lot of good with your earlier post, including for yourself! My sister also thanked me (you) for sharing it, and it felt like a breakthrough moment for us to acknowledge to each other where we are in this journey. It will make the next decisions much easier.

midge333

Just thinking out loud this morning. After watching the video, I got to thinking that it must be pretty unpleasant to have someone try to hand feed you if you are not hungry. What if the smell/taste of food is repulsive or the patient is experiencing nausea. I think many times we are doing more harm than good in spite of our best intentions.