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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
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.
 
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.
 
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.
 
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
 
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
 
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.

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

You are doing a brilliant job supporting both your dad and mum.
 
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
 
Yes, we have hospice thankfully.
 
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.
 
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