In the final days....

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DreamsEnd

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This is so hard right now. Not sure if it's from medications or the disease but Jesse has become paranoid and delusional. He wouldn't let me give him a suppository yesterday because I "didn't do it right" and insisted I call Hospice nurse to do it although I had done it many times. When she was here he asked to speak to her privately and then told her I was filming him and he didn't like it. (I had taken two photos of a blistering rash on his forearms and sent them to her.) he later wanted to call her on speaker phone to tell her we were isolating him. He was in bed waiting for his bowels to move. He is completely incontinent and as much fluids as I put in his tube his urine is very cloudy and orange and concentrated. (Thank god for Condom Caths!) Mike/Atsugi had posted something about concentrated urine and CO2 levels but I can't find it.
He desperately needs his bipap but wants it off so he can talk/babble non stop. It's almost impossible to decipher his speech and he refuses Tobii. If I try to repeat back to him what he's asking for, he says back off and don't put words in my mouth. He's talking about Buffalos (?) and all kinds of weird things.
I cut back his morphine yesterday to see if that helped, and his sister told him I had cut back pain med. that made him furious.
His brother is here helping and I couldn't do it without him. He is amazing, gentle and kind and very helpful. Their sister desperately wants to help and she's been a blessing but she agitates him so I'm limiting her contact.
I love, love, love this guy and wonder what today will bring when he wakes up. At least he's been sleeping thru the night so I'm getting good rest.

Gotta go,
Sherry
 

cheerleader

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Sherry, so sorry. I'm sure you are telling yourself (over and over) that this is his disease talking and not him! Hoping for better hours today. Hugs. Donna
 

Barbie

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Oh Sherry, call the hospice nurse see if they can get some one out asap to help manage this situation. it sounds like something is not right. yes it may be t he end, and they can help make it more peaceful. thank goodness you are not alone
 

affected

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So sorry Sherry. I am glad you have his brother there helping you. You are doing a great job there no matter what delusional stuff is going on.
 

Barbie

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How are things today Sherry? Hugss
 

Jeffreyp

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sounds like he may be hallucinating---my dad was like this on morphine. he just could not tolerate that drug and once on something else he was back to normal.
 

Nuts

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Sherry, is this the sister who you've been supporting while she helps you? Argh. She should have known better!

It seems just yesterday that you told us about your husband's diagnosis. I'm so sorry this is so difficult right now. I'm thinking of you and wishing for some relief...
 

poppies

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Sherry I am so sorry, this must be such a confusing, heartbreaking time for you. I know I have struggled the most during the times that my PALS has been upset and angry and I cannot "connect" with my PALS. I hope the advice given above is right and the Hospice nurse can help you sort out his meds to stop the hallucinations. Thinking of you and sending you hugs. So glad you have your brother-in-law there.
 

DreamsEnd

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Thanks for your wonderful support. Hospice EX Director came out (nurse practioner - lots of ALS experience) and called an associate with PH.D. In geriactics to come consult. Prescribed two more drugs. Was very almost normal (for advanced ALS) now sleeping 24/7 but he had the most beautiful smile when we whew putting him to bed last night.
Yup, Nuts, same sister., she wants to help and I couldn't have survived without her help but it's also been trying. Brother is wonderful.
Donna, I was telling myself that, thanks. I don't know how you do it for extended periods.
It's confusing because each nurse has a different opinion as does our Doctor (Pallitive) neighbor. Just trusting my instincts. It appears increased morphine is helping.

Sherry
 

gooseberry

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affected

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Do trust your instincts Sherry - you know him better than anyone.

It's normal to titrate the morphine amount upwards slowly, again gut instinct is best now as it's all about comfort. That smile tells you that is being achieved.

sending you hugs
 

Green Queen

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Thinking of you Sherry. Hope today brings a smile to your face.
If you have a bad moment please think of us and know we are with you.
God bless, Janelle x
 

4tloml

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Thinking of you and hoping today brings a better day for you all.

One question...did they check him for a urinary tract infection? My mother hallucinates and gets very agitated every time she gets one--it's usually the first sign I notice. And you mentioned his urine being cloudy. Whether or not, just wishing you and Jesse comfort and calm today.
 

Nuts

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Checking for a UTI is a great idea, if it hasn't been done already. My mom has getting pretty delusional (not ALS--age and Parkinsons), and it turned out to be mostly the UTI.

Sherry, the smile sounds wonderful. I wish we could give you the same peace that it appears you've provided him.

Much love,
Becky
 

affected

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thinking of you Sherry, holding your hand xx
 
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