Up and down, round and round

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starente15

Senior member
Joined
Oct 27, 2014
Messages
809
Reason
Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
City
Northern
My dad is still hanging on. We started feeding him Ensure through the tube, an ounce every hour, he's getting more water than before and seems to have restabilized where he's at.

Yesterday my mother finally made a move to get help. My aunt and I need to leave the first week of November and it's been difficult for THREE of us to tend to his needs. She's decided he needs to go to a nursing home which is not what he wanted but has now agreed to.

He's so uncomfortable in the hospital bed and is developing bedsores. He finds it difficult to stay turned and I can tell he's just miserable. I hate watching this slow deterioration and suffering. :(
 
P.S. If anyone else has used a home, do you know if there are any specific questions that should be asked when choosing one? I'm doing a general search right now but want to make sure we think of everything. TIA!
 
I'm so sorry Star, what an awful difficult way for this to pan out. xxx
 
I would look at CalQualityCare and the Medicare ratings for a start. I also noticed a nice article about an SD PALS who got married at his nursing home, so that might be one to check out. The Trilogy and ALS will narrow the field, so when doing inquiries, I would lead w/ those so as not to waste anyone's time.

I feel obligated to say, not really for you as your family has chosen, but for anyone else who may come along, this is not the way it has to be. Converse early and often with your loved ones.

I'm truly sorry, though, Star.

--Laurie
 
Yeah, this disease really is unpredictable. Definitely not going how I thought it would. We started in home help tonight. Hopefully it goes well and we can get some rest.
 
Star, I've spent some time with my mom in nursing homes that had both short and long term residents. I can only suggest that you show up unannounced and ask to look around. Use your nose as well as your eyes and ears. Careing for so many needy people at the same time is a difficult task, even if they are fully staffed, but some manage a much happier feel and cleaner appearance than others. Those qualities may give a hint at the attitude of the caretakers.
 
My heart sank reading this. I'm so sorry Star.
 
Today took a new and different turn. He had been restless all day but around 4pm started trying to get out of bed, took off his depends and was banging his fists. This went on for several hours during which time he wrote "I want to go home" and "I want to go home to sleep". Around 9pm my brother and I were the only ones in the room with him and I noticed his breathing sounded different. He got down to 8 breaths per minute.

I feel the end is near but we also thought that three weeks ago. I hate to see him suffering like this. His trilogy mask created a large pressure sore on his nose which is just now healing since we got a better mask. He's always fidgeting in bed because he can't get comfortable. :(
 
hugs Star - it could be some reaction to meds making him confused, or his breathing could be worsening as you seem to be suspecting. Again I can only say how sorry I am that he is going through such a tortured end, and that you are so caught in the whole thing.

Just try to comfort him and be with him, even in this state somewhere inside he will know you are there with him through it all.
 
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