Old 10-22-2015, 03:48 PM #1 (permalink)
starente15's Avatar
Senior Member
 
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
starente15 starente15 is offline
Senior Member
starente15's Avatar
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
Default Up and down, round and round

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.
starente15 is offline  
Old 10-22-2015, 04:04 PM #2 (permalink)
starente15's Avatar
Senior Member
 
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
starente15 starente15 is offline
Senior Member
starente15's Avatar
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
Default Re: Up and down, round and round

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!
starente15 is offline  
Old 10-22-2015, 04:04 PM #3 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,878
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,878
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Up and down, round and round

I'm so sorry Star, what an awful difficult way for this to pan out. xxx
affected is offline  
Old 10-22-2015, 04:20 PM #4 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,133
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,133
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Up and down, round and round

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
lgelb is offline  
Old 10-22-2015, 09:57 PM #5 (permalink)
starente15's Avatar
Senior Member
 
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
starente15 starente15 is offline
Senior Member
starente15's Avatar
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
Default Re: Up and down, round and round

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.
starente15 is offline  
Old 10-23-2015, 06:17 AM #6 (permalink)
Nuts's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,403
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Nuts Nuts is offline
Extremely Helpful Member

Nuts's Avatar
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,403
Nuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud ofNuts has much to be proud of
Default Re: Up and down, round and round

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.
Nuts is offline  
Old 10-23-2015, 06:32 PM #7 (permalink)
Member
 
Join Date: 2015
City: Mission Viejo
State: CA
Country: US
Diagnosed: 10/2014
Interest: I lost a loved one to ALS/MND.
Posts: 118
FamilialALS? is on a distinguished road
FamilialALS? FamilialALS? is offline
Member
Join Date: 2015
City: Mission Viejo
State: CA
Country: US
Diagnosed: 10/2014
Interest: I lost a loved one to ALS/MND.
Posts: 118
FamilialALS? is on a distinguished road
Default Re: Up and down, round and round

My heart sank reading this. I'm so sorry Star.
FamilialALS? is offline  
Old 10-23-2015, 08:51 PM #8 (permalink)
starente15's Avatar
Senior Member
 
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
starente15 starente15 is offline
Senior Member
starente15's Avatar
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
Default Re: Up and down, round and round

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.
starente15 is offline  
Old 10-24-2015, 12:24 AM #9 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,878
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,878
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Up and down, round and round

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.
affected is offline  
Closed Thread

Tags
bed, dad, feeding, nursing home, wanted


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Back on the diagnostic merry-go-round Suzannah General Discussion About PLS 11 08-18-2015 07:26 PM
On the diagnostic merry-go-round MommaTeresa Do I Have ALS? Is This ALS? 35 03-12-2015 09:40 PM
Caregiver guilt round 2 pastor Current Caregivers (CALS) 25 10-05-2014 10:45 PM
Sleep Study...Round 3 Uptown People With ALS - "PALS" 6 05-16-2013 10:16 PM
A short rant then off the merry-go-round fitzroy Rants & Raves 4 04-12-2012 08:53 PM
Sleeping round the clock Pepper Current Caregivers (CALS) 9 12-30-2010 02:38 PM
Granulation round peg stoma Tich1 General Discussion About ALS/MND 27 04-21-2010 02:31 PM
Another Round, Please Zaphoon Do I Have ALS? Is This ALS? 17 12-03-2008 11:08 PM


All times are GMT -5. The time now is 06:44 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016