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brain mets or????


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I have a question and it may sound a bit strange...

for the past couple of weeks it seems like when my husband is sleeping his eyes are partially open...

it seems to happen more and more... and a lot of times he will be sitting there and then just kind of "blank out" and I dont know if he is sleeping or what is going on...he is usually sitting up when this happens...recently that is the only way he is comfortable and almost never lies down....

is he slowly losing conscienceness and should I expect these times to get longer and longer?

today he said he felt really "loopy'..I am sure this is partially from his drugs...but he also said he was seeing double a few times....

i am not sure whether or not to contribute a lot of this to possible brain mets or to "end of life" happenings (esp the whole "eyes open" stuff)...

can anyone here shed any light on this? He has been getting weaker over the past couple of weeks... we had a major incident with reactions to certain drugs about 10 days ago... the nurse on friday said that he was better than he was then but was "declining" and that he is "fair to poor"...when we had the incident with the drugs and he wasnt doing too well she said "1-2 weeks" ...but I am thinking that was somewhat based on his condition the night after th "drug" incident...

just really wondering what might these periods of sleep/unconsciousness are...wondering if this is a precursor to him slipping into a coma or something...

has anyone else experienced this??

in all honesty, it is a little freaky to see him "sleeping" with his eyes open...I have had to go check his breathing status a few times b/c of how he looks when this is happening...

any help would be greatly appreciated....needing to gain some perspective of what to expect and what is coming.....

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Snoopy, I have no idea what this could mean, but it certainly sounds like it would be unnerving, to say the least. Perhaps you should call your doctor so that you will have a better idea of what is going on.

I'll keep you and your husband in my prayers.

Susan

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First suggestion would be, Call the doctor and let them know of these changes. Anytime you have changes that lead to concern, always call your doctor. Does your husband have brain mets. You don't have his profile filled out and without more information, it's hard for us to offer good suggestions or advice. It's hard to remember everybodies posts, so it's very helpful to all of us if you fill out the PORFILE area.

This disease is not a good one to second guess. Everyone handles treatments SOOOO DIFFERENTLY. As crazy as it sounds very few of us have the same sypmtoms, sorta, kinda, but not the same! :roll::?

As to what to look for, again, everyone is so different, this could just be something he is going through because of drugs and it may change and you may never see him act this way again. :shock::?:wink: The eyes open issue could very well be drug related or..... who knows??

My mom use to get that blank look and she never had any treatments, but every now and then she would just sit with that sad lonely blanked out look on her face. She did that for about a months.

My mom did go into a coma the last 24 hours of her life. My sister went into a coma for the last 5 days of her life. My dad, went into a coma one day and came out of it and 6 days later he passed away watching the LUCY SHOW. My sister even woke up in the middle of her coma three days into it and asked for a cigarette :shock: (the nurse gave her one) and then she went back into her coma and passed three days later.

Has or is your husband doing any chemo or radiation treatments? Sadly enough not everything has a black and white answer to it. That's the frustrating part of this journey. Hang in there, and when in doubt, CALL YOUR DOCTOR!

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Of course a call to the Dr is something you are entitled to make.

The eyes open things could be that his muscles are REALLY relaxed. I don't know if that is a med he is on...

But I saw a similar thing in the hospital with mom, and the nurse said if your REALLY relaxed muscle wise (mom was sedated) that does happen.

I'm sorry for the changes...they are jarring for us, because there is no playbook that preps us for these odd things.

Hoping for peace and comfort for you.

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That's scary to see... Harry does the same thing... I just figured it was the medication..(?)

Harry has also started breathing thru his mouth when he sleeps, so between the "eyes half open", and the "mouth half open", it's a bit spooky! I usually go and kneel down by the chair to make sure he's breathing.

Maybe it's just your hubby's medication... I sure hope so anyway. Best to call the doctor and ask though, I'm sure.

Know you're in my thoughts,

Nova

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thank you all for your replies...

we are on hospice so going to the Dr to see what it is probably isnt an option and not really necessary...i was just trying to get an idea of what is going on

we had a REALLY rough night last night...no sleep...

he was having SOB and a lot of plegm he cant seem to get out...he was also antsy b/c of this and kept getting up..unfortunately he is soooo weak now that if he gets up I have to too! so I got no sleep as he was up every 20 min or so to get food or switch where he was sitting etc etc...

on top of all of this he fell TWICE yesterday....once right in front of me b/c he keeps trying to move too fast... he went face first into the carpet and has a "strawberry' around his eye...

he also has an extremely large bruise on his leg but that was either from somethig else of the first time he fellb/c it was already there.... it is getting larger and larger...kind of worried about it..and his legs and feet are so swollen from edema it is almost hard to look at...he doesnt keep them up like he should...then he tries to walk around the house when he shouldnt and gets extremely SOB even with O2 set at 5! He knows he is doing this and making it harder on himself but he does it anyway...and he is making it doubly hard on me! trying to follow him around and anticipate his every move etc etc...

he can sit/eat etc etc whenever he wants but I cant b/c I an "babysitting' him....so I have NO sleep whatsoever....and I can only hope that tonight will be better...

I really couldnt get breathing under control and it is tough....

had to call hospice this morning about all of this...a bit frustrated b/c it took over 30min for someone to call back... then she called the Dr and then called back to increase some meds and frequencies.. the MS Contin and the Valium....she also said that she would send someone over but didnt know when they could get here... it has been over 4 hours on that....is this pretty typical for hospice??

what if this had been a bigger emergency??

on top of all of this...I think he is losing some short term memory..I will give him his meds and then within 10 min he has asked for meds being insistant that he needs them! Also today a few times his arm or leg would start shaking and he told me it wasnt him doing it! So that isnt good either.....

i gave him his increased dosage of meds about an hour ago and he is sleeping for the first time...thank heaven!!! I really need to sleep but cant...I am just trying to take advantage of the quietness...and trying to get a few things done around here...

my daughter had a clinic for her synchro group and so she is busy and now at a friends house...

i am just waiting mainly for Hospice to call...

this is all getting tough...really tough....and I am pretty sure it is gonna get a lot worse!

Any helpful thoughts or ideas would be great right now

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Hi Cindy,

I'm sorry to hear about how rough things are getting. I can relate to some of what you're talking about, although to a lesser degree -- the constant vigilance and fear of something happening (like a fall).

No great words of wisdom except to stay strong and accept help wherever you can. And to know that what you're doing right now will be one of the most important things you do in your life.

Just this morning Bill looked at me and said, "I really don't know how you're coping with all this." I replied, "I really don't know how you're coping with all this either." Simple truths -- but it's agony on both sides (although I know his is much worse, even if he disagrees with me). I'm sure your hubby appreciates all you're doing for him even if he's unable to express it.

One practical thing. You may already be doing this. About his memory and the meds. For MY memory and because we keep getting new and different meds, I keep a chart of when each med is taken and how much is needed each day. If you can show that to him, it might ease his mind to know he hasn't missed one.

Take care -- I'll be thinking of you,

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