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poppy62

Distinguished member
Joined
Jul 3, 2012
Messages
132
Reason
Lost a loved one
Diagnosis
05/2012
Country
uk
State
mid glamorgan
City
caerphilly
After several nasty choking episodes this last week, hubby is scared worse than ever to try and eat and drink.
This is the second day of very poor intake, his wee is darker, output is lot less.
His eyes are starting to look sunken.
His feet look a bit fatter.
I'm scared some serious dehydration is looming.
He desperately wants to drink but can't overcome his fear of choking enough to at least try often. Now he can't have a peg, gone too far, and he won't have a tube. He is still refusing treatment and is adamant he is not leaving the house.
He is extremely tired, very uncomfortable physically, and is sleeping a fair bit off and on. In the bed, in the chair or on the couch. His mobility is declining now day by day.
He won't try taking any meds, he is scared of side effects. He is refusing everything I suggest and attacking me verbally for trying to help him be comfy, says I have no idea, and he's right, I don't but I see an awful lot and I'm here 24/7 and I'm trying. His stock answer now is I can't swallow - how would you like to choke? like it's my fault..
This situation is tearing me apart. I need to help him but don't know how. Our mnd nurse is on sick for the forseeable future.
It's a toss up who to ring, hospice or gp? or both?
but what can they do to help? He is lost in the depths of it, I feel I have lost him already...

Are there any cals out there who had pals like mine? How can I help him?
 
Call them both. It cant hurt. I'm sorry your going through this. Its hard when they lash out...but we cant blame them. It does make it so much harder on us though. I wish I could help.
 
Call hospice! I'm so very sorry. Does he realize what is going to happen very shortly if he cannot get anything down? He will need medication to make him comfortable. It can be given by shot or intravenously. He can also be hydrated intravenously, but I don't know for how long.

Be strong.
 
Oh Mair,
Call them both... I'd venture an ambulance if things get too much worse! My thoughts are with you!
 
Call them both and explain the situation.
I'm so sorry that the two of you are struggling so.
 
I wish I could offer you practical advice - I have none.

But I will pray for you Poppy.
 
Thank you all. What a learning curve I am on...
I called the hospice nurse, she has been great. Hubby got a throat infection!
Question...
Can minor infections cause personality changes?
He really has been diffficult to be around this week.
It's a good job I love him to bits...
But part of me feels cheated too because he was a perfect gentleman with her,
promised to try what she suggested, even sat and almost had half a cup of tea with her...
and she said his swallow, although weak, is still there...

and I am left wondering whats going on?
 
Poppy,

From my experience in the nursing homes, when an elderly person has a urinary tract infection they have a personality change...get more confused. So it is possible his throat infection may be causing some change. Is he on an antibiotic now?
 
Hi Mair,
Glad the nurse came out! Keep us posted when you can! Thinking of you!

Jen
 
Hi CindyRN, yes got antibiotics, hope they kick in soon.
but he's not so much confused, more like Jekyll and Hyde!
 
Funny you say Jekyl and Hyde. My sis has had ALS for 12 years. I care for her in my home. Final stage now. She can be a jerk sometimes. And once hospice nurse gets here an angel. They say those closest get the worse treatment when the real decline starts. Maybe he realized with the swallowing episode exactly what he is in for. Maybe he is upset about earlier choices and now ALS is making choices for him. Maybe he really wishes he could have had that peg tube and is angry with himself. Do you use thickit in your fluids for him? We use thicket when my sis lets us and puree to stage one baby food consistency for eating by mouth and sometimes all she does is get it in and dribble it out but she also has a peg tube. I wish more PALS could see the havoc this disease causes and what it is like at latter stages with no peg.
 
Poppy it's just awful and so frustrating when your body betrays you as it does in ALS. I don't think it uncommon for us PALS to sometimes show our frustration to our CALS. Not fair I know, but who has to love us anyway even when we're at our grumpiest? Don't tolerate abusive behavior, be sure to call him out on it so that he knows how his behavior is effecting you. Do check with your medical support team to make sure there are no underlying medical issues that could be causing the problem.
I believe some of the other CALS have had issues as well.
Hang in there.
 
Thanks Deb, he was a gentleman in all respects before all this. I try to understand but cant imagine what it must be like to not be in control of your body. I looked after elderly with dementia and understand that uti's can affect behaviour but wasn't aware that hubby was brewing a throat infection this week. If indeed that is what made him more difficult, I will be more alert in future. Antibiotics are on the menu and by tonight, he has got some of his appetite back already, still cant drink a great deal but he has eaten more this evening and not worried about choking either!
What I was most miffed about was how he could be a perfect gentleman when the hospice nurses were here. So he is in control of his behaviour? I did ask him today should I don a uniform to get some respect instead of being treated like a glorified housekeeper? Anyway, after the week we have had, today has turned out a better day..thank goodness..we have a long way to go... :)
 
oh bother, gone to moderation..
 
So glad you now have some help through your hospice nurse. You're doing a great job. It must be so difficult and frustrating. Yasmin.
 
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