Stage 7 New Development???

Wild-West

Hi Folks,

Have you seen a phenomenon with your advanced stage LO in which they seem fine sitting up in their wheelchair (or wherever) one minute, and then they sort of just crumple and become unresponsive, and are then completely dead weight getting them back into bed? This seems to be a regular occurance for us now. 

My 89 yr old mom in stage 6 -7 seems to only be able to be up for about 3 - 4 hrs a day now, and then the above situation occurs. Our struggle is that she wants to be up and out of bed so desperately, and it's joyful for her when she is - looking at the flowers outside, etc. But it's becoming more and more unsafe to allow that to happen because she ultimately has to be picked up and placed back in bed by my DH. If I'm home alone I definitely can't allow it, because I'm not physically strong enough, but even with DH able to do the lifting we risk injuring her brittle little bones. I dunno ...

Heartbreaking quandary. Thoughts?

May flowers

We are experiencing something similar. My FIL is strong enough for us to stand and pivot to the chair in the morning, but by the afternoon and evening, we either need a lift (me / our caregiver) or DH who practically has to pick him up and put him in the bed as he is a dead weight by then. He isn’t doing the crumpling in the chair, but he has a gerichair which has a kind of tilts back. He does lean way to the side and we have to prop him straight with pillows. I’ve noticed more and more he is experiencing a sudden exhaustion - we noticed it last night at dinner. I thought he was going to fall face first on his plate. He still eats, his eyes are closed but not asleep. Just so tired looking.

His CG and I can both transfer him with the hoyer lift by ourselves. I’m mid-50s, she’s early 60’s and we are both careful with our backs, but it is pretty easy and gentle. I use a sling that is easy to get on him while he’s in the chair and he doesn’t seem to mind it. This is the one we use: https://www.amazon.com/gp/product/B07573D3XG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 I lean him forward slightly, slide the sling behind him, pull the sides around and under his legs, then cross the straps between his legs. We don’t have to move the sling once he’s in bed, we change his diaper and hook it back up to put him in the chair.

ButterflyWings

I have seen that only a few times with my DH - It happened on a flight maybe 2.5 years ago and then not again until a couple of months ago after his last fall (had to call for firefighters' assist). And then just the last 2 days but only in certain situations. 

1)Trying to get him out of bed which he usually does OK though sometimes is a little shaky right after standing so I wait right in front of him until he's got his sea legs. 

2)And trying to get him off the toilet without the commode frame, he is just dead weight now until he gets to a certain point close to fully standing with me doing all the work and then he gets his bearings and can help me. It took >20 minutes on Friday and TWO HOURS yesterday. I wanted to scream and cry. The replacement seat frame I ordered can't get here too soon.

I didn't think he was close to 7a yet but I guess he is knocking on that door.  Your examples seem like physical decline where in DH's case I had been thinking it was more that he didn't want to do something (he can't tell when he's done toileting so he insisted on just sitting endlessly with me begging him to get up. And was just fine reclining in bed but I wasn't going to let him eat lying down.) or maybe isn't sure he can do it? 

There is so much to learn, to help them transfer without injuring the CG, but when he is actively resistant that is scary for both our sakes.  He is not a large man at all but I'm still quite a bit smaller. That sling...so glad to hear that it works. I would not even know where to start! Oh I hope you all have an easy week. 

ButterflyWings

And I'm remembering 2 more times now that you mention it. Once on a different trip before covid (early Stage 5)- we were touring a historic site and had to sit down on the curb mid-tour and wait for a friend to come back with water. DH wasn't dehydrated, but I thought he was fainting. He just started going limp like you described Wild-West. 

And then it happened here at home - early last year. I heard a bump and ran into the next room to see him getting up off the floor. He's been line of sight other than that. Not sure what is happening...doesn't seem like TIAs and it isn't always the same scenario or time of day. For us I think it is definitely related to exhaustion maybe like May flowers said. I'm glad you brought this up. Will watch more closely for this. 

May flowers

BW, I was so intimidated by the hoyer lift and sling when we first got it - I only used it for emergencies, like when he was on the floor. Now I feel pretty comfortable with it, much more than trying to stand and pivot knowing his legs may give out or decides after he’s on the toilet he doesn’t want to stand!

Surprisingly, he does not fight the sling at all. He complains more with standing up. It has been one of the easier things we have to do during the day. As an aside, the caregiver told me the other day that she wasn’t sure she could do the job physically but after a few days using the lift (and knowing I’m nearby if needed) she’s good with it now.

Wild-West

Butterfly and May flowers, this conversation is super helpful already. Thank you! With my mom, it is also like a sort of exhaustion that seems to overtake her, and then she's just done -- she crumples, wilts, melts ... My transfers with mom pretty much mirror yours, Butterfly.

May Flowers, were you saying you use the sling even without the hoyer lift, to get your LO transferred? Or is it always with the lift?

May flowers

WW, I use the sling with a lift, sorry I didn’t make that clear

​fesk

Wild-West - when you say unresponsive, do you mean a deep sleep?

My mom does fall asleep suddenly now at times. This happens often at breakfast for some reason but also at other times during the day. However, I can see that it is going to happen. I can see she is getting sleepy, but then she is out quickly and sleeps deeply. If I see it happening, I try to get her back to her chair where she is more comfortable. If I catch it early enough, she will still respond and stand for me but I am almost completely supporting her for the transfer. I do know there are times the caregiver had to wait it out until she woke up. 

My mom will also tire very easily at times. Like when getting washed up. So there are times I'm supporting a lot of her weight for the transfer when we are done.

I think for my mom it is in part related to medication (not that she's taking it at that time, but in general) and in part due to progression. 

I'd recommend keeping a watch to see if there is any pattern and to make sure something medical isn't going on. 

Wild-West

Thanks for clarifying, May Flowers.

Fesk, good question. She's not sleeping. It's more like she's gone catatonic, often with her head hanging down. But it's definitely possible that meds are at play. The pattern seems to be that she can only manage about 1.5 hrs of up/awake time and then she's done. 

I also recall that in stage 7 they can lose the ability to hold up their head, so that came to mind. I'm a newbie with all of this though, so I don't know squat. I will ask our hospice nurse about it tomorrow. 

Thanks, everyone!