Old 10-01-2015, 09:03 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 Just checking in

Hi everyone. We continue to ride the roller coaster that this monster keeps us on. Yesterday I thought it might have been my dads last day as he slept through most of it and wasn't eating. Today he was alert, eating well and spent several hours off the trilogy. Only around 8pm did he start getting agitated and distressed.

As I sat with him waiting for my mother to come back with morphine, he said, "it's hard" which just broke my heart. I tried to encourage him to take more medication if he needs it just so he can enjoy watching tv and eating more comfortably. He's fighting it but today he did start asking for more.

There's been stress in the house with both me and my aunt here. I knew it would happen because we're all tired, stressed and afraid. Everyone wants to do something to fix things but it's not possible. I've wanted to leave several times but I know it's because it's just too hard for me to be here and watch this unfold. I stay because I want to be here to help him and spend time especially while he knows I'm here.

On a lighter note, I've mastered the power chair, zip around and help him drive it which is funny because he hates how I drive a car.
starente15 is offline  
Old 10-01-2015, 09:21 PM #2 (permalink)
scaredwifetx's Avatar
Very Helpful Member
 
Join Date: 2015
City: Dallas
State: tx
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,547
scaredwifetx has disabled reputation
scaredwifetx scaredwifetx is offline
Very Helpful Member

scaredwifetx's Avatar
Join Date: 2015
City: Dallas
State: tx
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,547
scaredwifetx has disabled reputation
Default Re: Just checking in

Hello, Your father is blessed that you are there to spend time with him. it might be stressful but what you are doing for him now is so important to him and to you for the future. We all want to fix it. I spend each waking moment trying to figure it all out and I am afraid even in my sleep. He will know you are there until the end and you staying is true courage. I like the driving the power chair idea. My husband also hates my driving so think it would be fun for him to watch me drive. Take care and keep the courage. You will be glad you did.
scaredwifetx is offline  
Old 10-01-2015, 09:27 PM #3 (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: Just checking in

Thank you. As much as I'd like to run, I know I never would. Somehow I will power through as he has done so courageously. I feel like we're trapped in a nightmare and I've felt guilty just eating and breathing in front of him because it's so hard for him. It's so unfair and I just want to scream every day. I just don't understand.
starente15 is offline  
Old 10-01-2015, 11:39 PM #4 (permalink)
Green Queen's Avatar
Very Helpful Member
 
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Green Queen Green Queen is offline
Very Helpful Member
Green Queen's Avatar
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Default Re: Just checking in

Oh Star, sending you a big hug.
Our dads are our first true love, the one man we can always truly rely on.
I don't know at all how hard this is for you, to be able to do things...but not being able to 'do' anything.
Your love shines through in every post. Your dad must be extremely proud of you, supporting him and your mum.
Take care, thinking of you, Janelle xxx
Green Queen is offline  
Old 10-02-2015, 04:18 PM #5 (permalink)
gooseberry's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,450
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
gooseberry gooseberry is offline
Extremely Helpful Member
gooseberry's Avatar
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,450
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
Default Re: Just checking in

I read your post and it hit me hard. For a dad to admit that to his child would be so hard for him. He truly must need and want your comfort. Big hugs to you. And hug your mom and aunt. Steph
gooseberry is offline  
Old 10-02-2015, 05:10 PM #6 (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: Just checking in

Thanks everyone.

I can take 12 weeks of unpaid family leave and will start week 4 next Monday. I was debating taking another 4 then going home and saving the last 4 if he stays the way he is right now. It's so hard to know what to do. Once the 12 weeks is used I will be unable to take more unpaid leave for a full year and only have a few vacation days left. As I was debating this in my mind today, the aide told me she could tell that I'm his rock and he's turning to me.

starente15 is offline  
Old 10-02-2015, 06:26 PM #7 (permalink)
Senior Member
 
Join Date: 2013
City: Small town
State: Midwest
Country: US
Diagnosed: 08/2012
Interest: I lost a loved one to ALS/MND.
Posts: 977
cheerleader is on a distinguished road
cheerleader cheerleader is offline
Senior Member
Join Date: 2013
City: Small town
State: Midwest
Country: US
Diagnosed: 08/2012
Interest: I lost a loved one to ALS/MND.
Posts: 977
cheerleader is on a distinguished road
Default Re: Just checking in

Oh Star, such a predicament. We always wish for that crystal ball to guide us. Whatever you decide to do, it will be the right decision, and you can rest assured that you did the best anyone could for their dad. ALS is such a strange disease- I thought my hubby would have at least another year or two - but he, too, was finding life too hard and in some ways, know he was ready to be done, and was gone in just a few days after aspirating on a pill. The last day he told the hospital doctor that I was his rock! So from one rock to another, we can count that the highest compliment someone you love can bestow on you. It has given me some peace of mind, despite the outcome. I wish for you the same peace in your heart. You are a loving child of a father who obviously is so grateful for your strength and caring. Hugs. Donna
cheerleader is offline  
Old 10-02-2015, 08:31 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: Just checking in

Thank you so much Donna. Tonight we saw a new change. He told me to check on my mother in the bathroom. She said she was fine and asked him why he thought she wasn't and he said he heard her calling. Shortly after that he told me to unplug his power chair which wasn't plugged in and asked my sister in law if she wanted to plug anything in. Does anyone know if this is a sign of the end coming? agitation started yesterday as well. So sad.
starente15 is offline  
Old 10-03-2015, 10:50 AM #9 (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: Just checking in

Star it is all just so unfair I agree. It is good that you can take some leave time. Down the road when all is said and done you can be at peace knowing you were there to support your family through it all. My sister is coming from out of state tomorrow to spend a week or so with my mom. She will be using up her vacation time. Then she has to figure out if or when she will go back. She is completely stressed out about possibly not being around when mom passes. It is so tough to guage these things. You are doing an exceptional job of keeping everyone taken care of and your father can have comfort knowing you will continue to help your mom along after he is gone- I cannot imagine a greater gift you can give your dad.
FamilialALS? is offline  
Old 10-03-2015, 03:02 PM #10 (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: 10,884
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 online now
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: 10,884
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: Just checking in

Star it could be CO2 and/or it could be the meds.

You are doing a brilliant job supporting both your dad and mum.
affected is online now  
Old 10-04-2015, 03:07 PM #11 (permalink)
Member
 
Join Date: 2014
City: Cottonwood
State: AZ
Country: US
Diagnosed: 01/2014
Interest: I lost a loved one to ALS/MND.
Posts: 445
DreamsEnd is on a very distinguished road
DreamsEnd DreamsEnd is offline
Member
Join Date: 2014
City: Cottonwood
State: AZ
Country: US
Diagnosed: 01/2014
Interest: I lost a loved one to ALS/MND.
Posts: 445
DreamsEnd is on a very distinguished road
Default Re: Just checking in

Star, I'm no expert by far but the booklet given to met by hospice on end of life says:
1-2 weeks: disorientation; talking with the unseen; confusion; picking at clothes.
Physical:
Decreased blood pressure; pulse increase or decrease; skin color changes: pale, bluish; increased perspiration; respiration irregularities; congestion; sleeping but responding; complaints of body tired/heavy; not eating, taking little fluids; body temp: hot, cold. (Note my pals has done some of this for months..)
Is your dad receiving hospice care? The nurses can be wonderful and supportive and help guide family thru stress.

Sherry
DreamsEnd is offline  
Old 10-04-2015, 05:18 PM #12 (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: Just checking in

Yes, we have hospice thankfully.
starente15 is offline  
Old 10-04-2015, 09:18 PM #13 (permalink)
Member
 
Join Date: 2015
City: San Diego
State: CA
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 236
fionae is on a very distinguished road
fionae fionae is offline
Member
Join Date: 2015
City: San Diego
State: CA
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 236
fionae is on a very distinguished road
Default Re: Just checking in

Dear Star,

What a tremendous blessing you are to your Father, and to all of your family.

You and your Father have been especially in my mind, and in my heart. It is so very painful, and hard, to lose a parent under any circumstances. I feel I may have an idea, but can truly only imagine how unbearable this is for you.

I am so sorry for what you and your dear Father are going through.

Sincerely,
Laura.
fionae is offline  
Closed Thread

Tags
back, chair, eating, heart, hours, morphine, power, power chair, 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
Just checking in... Snowman78 Current Caregivers (CALS) 4 01-22-2015 06:00 PM
Caregiver checking in NolaJen General Discussion About ALS/MND 9 01-01-2015 04:09 PM
Checking on NeedCourage TGB1 General Discussion About ALS/MND 2 05-23-2014 07:04 PM
Checking in! tag0620 General Discussion About ALS/MND 3 03-04-2013 07:40 PM
Checking in..... Empire Welcome New Members - Say Hello 2 12-06-2012 08:28 PM
** Just Checking In ** codya13105 Do I Have ALS? Is This ALS? 10 11-22-2009 12:39 PM
Just Checking In! Gracie General Discussion About PLS 11 07-26-2008 06:54 AM
Checking in to say hi :) NvrGiveUp Current Caregivers (CALS) 16 11-23-2007 12:33 AM
just checking in! gilly General Discussion About ALS/MND 1 08-21-2007 08:25 PM
Checking in and also something to try(?) NvrGiveUp Current Caregivers (CALS) 16 08-05-2007 07:27 AM


All times are GMT -5. The time now is 08:04 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