Bouncing back and forth with abilities

May flowers

My FIL as many of you know had hip surgery in January and it has taken a good month for him to be off the many meds to even start to gauge what he can and can’t do. Some things he seems better than pre-surgery, and others worse.

What is new for us is that we seem to be bouncing back and forth between his abilities. Before when he lived here, it was a steady decline. He would lose an ability more and more until it was gone.

Here is what we see:

Some days he will say less than 5 words, while others he will speak sentences, and ask where things are, and clearly express what is bothering him. He has not done that since October at least.

Some days his eyes completely glaze over and he is staring into space, no interaction with the world or people around him. Others he is very alert, makes eye contact, pets the dog, smiles at jokes and makes sarcastic comments periodically 

Some nights he sleeps well, others he is experiencing some kind of delirium 

Some days he can express a need to go to the bathroom and actually uses the toilet, others he goes in his depends.

Some days he gets up and walks at a normal pace (with assistance), others he cannot stand, he is a “dead weight”. On his best days he pulls away from me wanting to do everything himself - which is scary - we have both ended up on the floor (not hard falls, more like easing him down)

Some days he can brush his teeth, and hold a spoon, drink from a cup, or at least feed himself finger foods. Others, he will not eat unless the food is placed him his mouth repeatedly, and loses interest in food quickly.

On more “clear” days he is a lot more cantankerous and stubborn, but the trade off is worth it

Both ways, he sleeps, a lot. Probably 60%- 70% of his day

I know we are in stage 7 regardless. But on bad days, it feels like this is the beginning of the end, he is that unresponsive. On good days it feels like he could live for years. It is hard to gauge where he is at. This is new for us, as decline was more steady. We have found no trigger to explain why one day is better or worse. No indication of pain, UTI, amount of sleep, or diet changes…

And it is back and forth day to day and sometimes within one day.

Is this just part of the last stage? Does ability become more erratic around this time?

toolbeltexpert

Mayflower you helped me understand that some functions can be here and then gone which makes it really hard on me to understand where are we at?

What is new for us is that we seem to be bouncing back and forth between his abilities. Before when he lived here, it was a steady decline. He would lose an ability more and more until it was gone. 

 This is so hard not knowing when the next things gonna happen. I have scheduled my dw for a an eye evaluation for her cataract. I worry shes not gonna sit still for the surgery and the possible things that can happen from general anesthesia. 

You are so kind taking such care for your FIL I wish more families could be like you.

Battlebuddy

Thank you SO much for posting this. This is exactly what is going on at my house. Same stage. It’s crazy the range of bouncing we are having. One minute he is asking for a coffee , a little later all he can do is sigh and grunt. One week he has swallowing issues all week, the next week he is fine. It makes things difficult at my weekly Hospice nurse check in. I remember when I went to an Alz care giver class, and the instructor had us make a long declining diagonal line on a paper. Then she said “ now draw a crazy zig zag line all over your declining line. That’s Alzheimer’s “

wyoming daughter

I read somewhere that the effect is something like a lightbulb that's not screwed in properly.  It works just fine sometimes, sometimes it flickers, and sometimes it doesn't work at all.  No wonder the frustration.

May flowers

I’m glad to know I’m not alone. Battlebuddy, you are so right - it is so hard to explain to the hospice nurse. She asks me these 0-10 questions, and I’m like well he was a 2 yesterday and 8 this morning, etc…

The zigzag line and lightbulb analogy both make a lot of sense.