Cognition Question from SunAndSea

[sunandsea]

Checking in on a Wednesday for a change. Was going to start a new thread, looking for advice, but not sure what I would call it. Went to clinic last week and respiration function was surprisingly good - no change in 3 months (71%). But fatigue is more noticeable and confusion continues to worsen. I believe the specialists at clinic were also surprised at his responses, or lack of, and his cognition. E.g., he wasn't able to tell the doctor her name or where we were when she asked. We've been going for two years. I know this is ftd with the als but have others had these difficulties with memory? There are times he doesn't know who I am and he can't remember what we did last week, a year ago, or many years ago - so it's not just short term memory.
Today he is so tired and he said he feels like he is dying. He's using the trilogy more and I can't notice a change in cognition or fatigue with it and without. His appetite is down and he's not eating as much as he should. He's lost weight and is coughing more with liquids so we are now using thickeners.
Sorry if this is disjointed and rambling.
I know others have it more difficult than this. He just says so little, it's difficult when all he is sharing is that he feels he is dying. I guess I am often wondering if I will know when he needs more help.

 

[Atsugi]

Sorry I'm not familiar with your husband. Is he walking, transferring, feeding himself, etc?

It's my personal belief that when a PALS feels they are going to go soon, they are usually right. A more medically astute person can give a better answer.

When I was an active caregiver, I planned everything as much as possible, then just made it up hour by hour as reality pushed us around. I guess that's the only advice that pops up right now.

 

[affected]

So sorry it's like this!

The fatigue is part of ALS, regardless of the breathing numbers. But the memory issues are quite strange. FTD isn't usually about memory so much as cognition - using the executive functions, but obviously there is really something going on with his brain.

Having said that, I do believe PALS know when the end is near, FTD or no. Even with the behavioural FTD which had morphed into language FTD, my Chris was very aware of approaching the end.

I remember so clearly him saying to me (using a communication chart) - I can see death. He was gone within weeks.

The constant tiredness, lowering appetite and brain issues certainly sounds like a change may be happening. We just never really know with this monster however, which is one of the many worst things about it.

I can confidently say I knew Chris was actively dying 4 days before he died, but I also know he could have just had a couple of bad days and gone on for weeks more.

What kind of help are you concerned he may need that you may not be aware of?

 

[sunandsea]

Thanks for the responses, Mike and Tillie, and sharing your experience once again. (And thanks for moving this to a new thread, Mike.) My husband, H (his nickname), is not walking - his als was limb onset and he has no movement in his legs. He does have upper body strength and can assist with transfers but not do them independently. He is still eating independently but is starting to have some difficulties with swallowing. He has lost interest in almost everything and doesn't independently move through the house or outside - his pwc frightens him and he asks to have someone else control it when we use it. A year ago, he was using a motorized scooter that he loved and he would travel through the neighborhood independently or use it to go to the store, visit friends, or come to see me at work.

Tillie - it does seem that the memory issues are not the norm - I have looked at other postings and don't see this described.
My fear is that he will be in pain and I won't know it. He never complains - about anything - and occasionally I'll see the pain in his face from cramps or pain in his trunk/chest. I don't know that hospice services can offer anything yet and I hope I'll know when they can. Without a peg ( he doesn't want one), I worry about when he is unable to drink or get the nourishment he needs - or the air. He doesn't ask for much so it's hard to know what he needs much of the time. Communication is a problem and we are getting a dynavox to help with that. I'm just not sure he will use it.

I may not be making sense but the changes in his understanding and his awareness are unsettling. I know this disease doesn't follow a certain path but it's as if we are dealing with two different diseases here.

 

[Nikki J]

My mother had memory issues as her very first symptom- before noticeable executive function decline and long before any ALS symptoms. It may not be usual but it happens. In her case there were definitely 2 diseases - dementia/ FTD and ALS I am sorry

 

[lgelb]

Hi, Sun,
I agree that memory loss to the extent of not recognizing you is unusual, though not unknown. As you say, it has progressed rapidly and indeed there could be 2 diseases at play and/or suboptimal support from the Trilogy. I would certainly ask that his Trilogy data card be checked (you're welcome to send me a pic of the data on screen when he's using it, too, or a data download) and buy a finger oximeter if you don't have one, as high CO2/low O2 aren't ruled out by a stable FVC. Next clinic I would ask for a CO2 reading as well.

I'm sorry that this is what you're dealing with.

Best,
Laurie

 

[affected]

Sun I do agree with Nikki that the memory is sometimes seen in FTD, I just meant it is not the most usual presentation.

The fact that being on his bipap makes no difference one way or the other points me to his brain being the issue.

I would be surprised if he uses the dynavox as they are a lot of work to learn and very slow at first. It's sure worth a try!

Thank you for answering that your concern is that he doesn't tell you about any needs. I know my Chris would constantly say he was 'fine' and that was really difficult when he was anything but! Does he accept pain relief if you offer it to him?

I would start interviewing hospice services in your area as I believe there can be a lot of variation there. Find out what they can offer and how, and which is the best service for your PALS needs there so that when you feel it is time you don't have to start the searching but can simply instigate things.

 

[Dave K]

It is hard to predict what is ever going to happen next. When my wife started experiencing cognitive issues, it was almost like every other muscle group that became affected--just a little bit at first, then very gradually occurring with greater frequency and severity. Sometimes she still seems like the sharpest person in the room, but those times have gradually become fewer and farther between. I have given up on trying to predict what the next day/week/month will bring.

 

[lgelb]

I would only differ, Tillie, in that on/off BiPAP can "look the same" cognitively if he is in respiratory insufficiency chronically.

 

[affected]

Good point Laurie. I did not take into account that if the bipap is not making up for the CO2 retention and all that goes with ALS breathing issues, then being on it or not won't affect cognition.

 

[Narrowminded]

Sun I'm sending hugs, as I don't have an experience on this front and have no advice to offer.

Hugs,

sue

 

[KateEmerson]

My first thought when I read your description of symptoms....exhaustion, confusion, losing weight from not eating enough, was what I observed in my husband before the doctors discovered his co2 was over 100 with a low o2. He was lying down and/or sleeping literally 23 hours a day, his memory was horrific. I was later told he was in " carbon dioxide narcosis( same effect as being on a lot of opiates). I searched symptoms for high co2 after reading your post and they all list fatigue and confusion as symptoms. Did they do a blood gas to see what his co2 was? When this was happening with my husband I told friends that I felt like I was watching him die, I am so glad we went when we did before it was too late.

 

[gooseberry]

Steve lost word recall, then why am I in this room , then where did I put my keys,book,you name it. This progressed to short magazine and online articles because he couldnt remember what he read....to not knowing what to do to operare his tablet or the tv. The dementia and meanness came on slowly at first but was viciously quick for us the last 3 months.

 

[sunandsea]

Thanks, all, for the responses. We've had some good days since I wrote - good in terms of memory and energy. His appetite has picked up and fortunately he's not in the same place he was a few days ago. He is losing trunk support and his upper body strength was much weaker today but he was awake to deal with it. I'm still not sure what was going on before. We have an oximeter and I'm monitoring O2. I realize it's CO2 that is the concern and they didn't do a blood gas reading to see what that was - they have in the past and it's been fine. He has an appt early next month and they will check it then.
Laurie, I would like to send a pic of the trilogy screen if you don't mind. Can I pm it to you? Thank you!

 

[lgelb]

Sun, PM'ing an image doesn't work. I'll PM my e-mail.