My Dad

[LeslieR]

So... I have only posted once after my dad was diagnosed last year. Since that time he and my mom moved in with me. (last July) He has a feeding tube and has been hospitalized 3 times with a variety of issues. He is on a trilogy ventilator with a noninvasive mask.
He has lost all speech and has limited use of his hands. He jots things down in a shaky hand on a boogie board and sleeps alot. He takes ativan and morphine one or two times a day and more at night. He has no swallow and gets panicked if he has to cough (which he can barely do). He gets a hot flash with his episodes of air hunger.

He has chosen not to get a trach or invasive ventilation and he has been admitted to hospice. I can't help but wonder how much time he has left? There have been a few days where I thought he might be getting close to the end and then he perked up, again! It is such a horrible roller coaster and I feel guilty for whining because I cannot imagine what he is going through. And my poor mom! They have been married 55 years - almost 56.
I guess I am just rambling with no real purpose other than to share what we are going through.

Love to all-
Leslie

 

[Chincoteaguer]

Your posts makes me wonder how I will cope with what your going through when my wife progresses to the level of your dad. I try not to think of that time. Your post is helping me to prepare, however, and I thank you for sharing.

 

[wishmobbing]

Thank you for sharing, Leslie. Never feel guilty, here or in life. (Plus I wouldn't consider your post whining.) I wish you all good grip on the rollercoaster.

 

[Atsugi]

Hi Leslie,

I remember those days very well. In our case, I was thinking "oh, oh. I hope she makes it another six months through Christmas" but then it was all over in a couple of weeks. My PALS had no tubes of any kind. Then there are PALS who hang in there for a very long time.

I think it is best to plan for these things, to plan for what happens afterward, to plan for life without your PALS, and do whatever it takes to make a new life for the surviving family. But then, that's just me--I'm a planner and I take comfort in that.

Wishing you and your mom everything you need to get through this.

 

[lgelb]

Very sorry to hear of your dad's progression, Leslie. He and your mom are fortunate that you are there and have opened your home to them. Stop by any time with a comment, question or rant and let us know if we can help.

Best,
Laurie

 

[Narrowminded]

Leslie, big hugs. You are definitely not a whiner. Nothing about this disease is easy. You are hero! you are there for them each and everyday and what a blessing to them to have you. Please come here and rant whenever you like, we all get it and we all have your back.

Mike has some good practical advice.

Hugs,

Sue

 

[LeslieR]

Thank you everyone .
Last night he looked completely... defeated. I'm not sure if that is really the right word or not but he looked different. A little more pale and sad and worn out. I was getting him set for the night and everything wears him out and he gasps for air- even on the trilogy. He asked for morphine and Ativan and we gave it to him. We prayed together as we have been doing for a while and then he asked for his boogie board to write something to me- my mom had stepped out of the room. He wrote , "I'm ready" and looked at me with a different look in his eyes. I told him that I knew he was ready and I promised him I will take care of my Mom, forever. I told him I loved him and did good night. I cried half of the night - afraid he would be gone this morning.
I I thought I was ready ... but the truth is I never will be.
He is still here this morning and I was so relieved to tell him good morning.

 

[wishmobbing]

Ob Leslie, how hard this must be for you! And why should you be ready? It's just unfair you should lose him. But it's good to read your story. You're there for him now and you'll be there for your mom. Nothing would give me more solace.

 

[Jlynn]

Leslie, You can prepare for certain things but it's hard to prepare for the missing. Just love him while you can. I understand what you mean by there being a "different" look in his eyes. I saw that with my PALS, my brother, as well. I couldn't explain the difference but it was there. He didn't break eye contact or cry when he said he was ready.
What a wonderful daughter you are. They are both so lucky to have you. Hugs to you over the miles.

 

[Miav123]

Hi Leslie, I saw the same look in my dad's eyes the week before he passed. He told me he was tired and didn't know how much more he could take. He seemed to be at the same stage as your father. Ativan and morphine to calm him and help with air hunger. Over the course of two months, we went through a couple of times of thinking he'd be gone in the next few days and then he would somehow get better. You are doing the best you can...just be with him and your mom as much as you can. Big hug to you...I know how much the last days hurt.

 

[LeslieR]

The weekend was rough. Dad slept off and on in between choking episodes. He asked if I had made arrangements for a service... We had a steady stream of people stopping in to see him. Yesterday he wrote that he didn't think he would make it through the night. But he did.
I am actually terrified that he will have a sudden choking episode that kills him. He has no cough . He no longer tolerates breathing treatments or the cough assist. I am hoping he goes to sleep and drifts away quietly and that the end comes soon.

 

[Jlynn]

I'm hoping your Dads passing is peaceful and that he is comfortable. Tell him how much you love him. You can't say it enough. Thinking of you.

 

[Narrowminded]

Leslie sending huge hugs and prayers for peace and strength.


Hugs,

Sue

 

[wishmobbing]

Hoping for a soft end in his sleep, too.
Come here anytime to vent, this must be so hard.

 

[KarenNWendyn]

Sending you positive thoughts Leslie. Be sure to let your dad know it’s ok for him to let go.