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ctollar

Distinguished member
Joined
May 17, 2017
Messages
100
Reason
Lost a loved one
Diagnosis
03/2017
Country
US
State
FL
City
North Port
I have been pondering telling my PAL's story since he passed. I know that when he was sick I spent many many hours researching this site to gain any information I could to help him. Towards then end I researched what to look for when my PALS begin his last journey. What I am asking ,before I share, is there anyone who would like an honest non-filtered timeline of what transpired. I know every case is different and was hoping to give some sort of insight to others on what I personally experienced from his onset till his death. I do not want to offend anyone but I took solace in the information I learned through my research of this forum. Please let me know if this is something you would like me to share. Thank you
 
C if this is a step you feel you need to take, then definitely share. The title pretty much says what it is, so people can choose or not to read. I for one would read it as every journey is unique.

Hugs,

Sue
 
Hi Ctollar,

Thank you for sharing your post. If you don't mind, I would love to hear more from you. I'm also very new to this community and would like to get as much information as possible as a care givier.

Thank you in advance.
 
I personally would love to hear your story. So please share if you want.
 
Sharing might help you process this strange journey.
 
If it helps to tell it then you should. I would love to hear your story.
 
Absolutely! Share your and your PALS journey. It’s good getting as much information as possible no matter how difficult it is to read. I know every journey is different, but they all end the same.

As a wife there is a sort of peace knowing in what might happen. What the PALS or us go through.

It’s just a dreadful disease .
 
i try and share what is happening with me in the hope that others can benefit from it. i believe that what you have to say will be very helpful to so many of us. so, if you are able to bare it, please do share.
 
I am going to have to reply in sections as I do not think I can get it all out at once. So where does one start when telling a story. I guess the diagnosis would be the best place to start but it isn't where his story started. April 10, 2015 was just a normal Friday. I was looking forward to coming home from my job, eating pizza, and generally relaxing. My usual routine was to talk with my dad every day when I got home. That day when I called he sounded extremely funny. I had to ask him if he had been drinking. He assured me that he had not at all. However, as a precaution we took him to the ER thinking he may have had a stroke. SInce it was a Friday they ended up admitting hime until Monday. Fast foward 7 months. He had been fine for 7 months. Again, on the phone with him and I see a distinct slur in his voice. This time he admits that is has been happening when he is tired. As the months pass along his speech slowly deteriates.
 
I notice that he is beginning to lose weight as well and he assures me that he is dieting and the speech is an after effect from the stroke. Even his primary thought this was the case. My only issue is if it was a stroke shouldn't he be able to have rehab. Instead, he was just getting worse.

FInally Dec 2016 rolls around. I had been after my dad for months to get a second opinion from a neuro and he finally agreed but wanted to wait till the new year as he just had gotten better insurace. We make the appointment for Feb 27. We all go in thinking that he is having mini strokes and a change of diet would do the trick. We get to the appointment and after about a 10 exam the doctor says I think you have ALS. She insisted we get a second opinion but at that moment my whole world closed in on me.

I don't know if you have ever felt like you were going to pass out but at that moment I saw my vision going. My dad was extremely stoic about the whole thing, thinkiing that it was a misdiagnosis. We were referred to another doctor in Sarasota but the wait was extremely long to get into him.

April 2017 we were able to see the doc and he confirmed what we were most afraid of. ALS. He told my dad he needed a peg placed and wrote scripts for bipap, suction machine and cough assist. At this point my dad was in complete denial about the diagnosis and said that there was no way he was going to get a feeding tube no matter what. So we continue this dance for the next month or so, me asking him what he ate, him lying to me about his weight until I finally called him out on how much he lost. He admitted that he had lost 20 lbs in a month and could no longer swallow.

Off we went to meet with the suregon. By this time we were worried that it was too late for the surgery due to his weakened state. We were able to schedule the surgery but he was frightened and insisted I stay in the room with him up until they took him back for the procedure. He was in and out of surgery relatively quickly. We received minimal information about the care of the peg tube and we were sent on our way.

The first night was difficult as he was in a lot of pain so I spent the night on the couch at his house. I will admitt we fumbled through the first few feeds and found that bolous feeds only made him feel overly full and gravity bags worked much better for him.

Several days after surgery dad was complaining that the incision site hurt. Turns out he developed an infection at the incision site. He had a fever, puss coming out of the wound, so I went round and round with the doctor (sending pictures to his nurse as I didn't want to risk him being exposed to anything with an infection rolling around in him.) Antibiotics were prescribed and we were on our way. Still things didn't seem real. Almost like the disease hadn't fully registered with us, even though I knew deep down things were going to change and soon.
 
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I found it very therapeutic to put Chris's story into order - it really helped stop it having the power to just go around and around and around constantly in my head.

I hope telling this here does that for you, while helping others as well xxx

I sure can identify with that feeling when those three awful letters were spoken!
 
Take your time. We're here, when you need us.

Angie
 
Thank you all for being so very patient with me. This has been very difficult and I am trying to finish my story for you. Anyway, after the infection cleared up, the tube somehow became dislodged from where it was suppose to be so we had to go back to the hospital to have it replaced. At this point my poor dad was so weak from all the poking and prodding that his ALS went into hyper drive. One day over the summer he just couldn't use his right hand at all. We went through the summer with family visiting and helping him sort through his things (which he loved going down memory lane with us).

Then Irma hit. That was the beginning of the end for us and him. He insisted on staying at his house for the hurricane and for the next few days. He didn't have electricity. We finally convinced him to come at stay at my house and by the time he got to my house he could barely walk and was scooting around in a wheelchair. This is when we had to start basically helping to lift him up for the bathroom and showers and stuff like that.

We move through September and in the beginning of October he just couldn't get up and around anymore by himself and it was recommended that we seek out hospice to help with pain. By the way, at this time he was developing a lot of mucus in the back of his throat that was causing him lots of panic because he couldn't breathe when this happened. There were able to help with morhpine but alas that constipated him terribly. It seems like he would go to the bathroom every 4-5 days and each time he went it set him back and pushed forward the progression of the disease.

By the time December came he could no longer stand or move his right arm at all. One Saturday two weeks before he passed I was there with him and he was almost unresponsive. He could not tell who was there or what was going on around him. I had called the hospice nurse out to check on him and she told the doctor on the phone my sister and I were overreacting to his situation. It is amazing how many people are not aware of what ALS looks like. The next day he texted me and asked what the he%% happened to him. We call it the lost day. Fast forward a week and he begins to start sleeping all the time and refusing feeds. After a bit the feeds start coming back out the tube and we knew at that time he was
beginning to shut down. We opted for a catheter as he developed a bed sore on his testicales. and he was in and out of it for the next two weeks. He passed on Dec 27 at 1:40.
 
Thank you for telling his story, ctollar. A rough ride and a quick one at that.
His story is already part of your story, a story that goes on. If you'd like to keep the narrative going, please do.
Your father liked to go down memory lane. I hope that writing down how he went, will help to bring you back to who he was.
 
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