Struggling

[Narrowminded]

Ok, well it’s 5 o’clock somewhere and I’m having a drink. Dad and Mom are back at the LTC facility via a ride from my SIL.

There is something I want to get off of my chest, but first a disclaimer. This disease is a monster no matter how you face it. Fast, slow or somewhere in between. Whether you are a PALS or a CALS or a family member it all s*cks. I am in no way trying to sound negative to those fighting now or who have fought and the battle is now over. This is my feeling personally. I’m also not trying to say that anyone is “lucky”. That is not my intent.

So I’ve spent a lot of time thinking about the moniker my Brian now has “The king of rebound”. The moniker fits, no doubt about that. However, I really don’t wish that moniker on anyone else. The roller coaster that creates is anything but kind. Do I get to have my husband for more time, yes I do. However the constant up and down is really doing a number on my psyche.

I hate to even come here and post when he’s bad because I feel like the “boy who cried wolf”. His signs are/were all definitely bad. They all pointed to things coming to an end. Once again, nope. That’s why I’ve constantly said I have no idea where this is leading. I firmly believe it will happen when it’s least expected and not when he’s showing signs.

We had his first pneumonia a year and a half in or so with the vent. They wanted to call for last rights. We had his 2nd pneumonia. Then his 3rd when he went septic. We had his week long Tachicardia w/o food only water with meds. We had several small boughts this spring/summer.

This is not what anyone needs to go through not PALS, not CALS and not family. Family has seen him in these various stages of “oh no”. They know what I’m telling them is truth, but even they are getting to the point of thinking “yeah ok, been there done that”

This is where I feel those who have gone down hill and slid right into home plate have had it better in one regards and their family has as well. They miss them like crazy, a feeling I have yet to experience. Their world is turned upside down, no doubt. But right now I feel like I’m on an amusement park ride. One that turns you upside down and then right side up and then all the way around.

I’ve braced myself, I’ve sat death watch. I’ve moved forward in my head as to what do I need to do, who do I need to contact, who can help me work through this. What can I do since this will be over? I can visit DD at college, I can try and get my company on better footing because I can be there and actually have part of brain while I am.

Then I’ve promised myself that this time I won’t go there, I won’t look forward. I won’t think about those things. Because when it all turns around again, I just get hurt all over again. I feel like I’m on that ride that just never ends.

Then oh, while you’re on that ride, make sure you take the ball, that is your folks and toss that in the air while you tumble relentlessly. Oh and don’t forget the ball that’s your daughter trying her darndest to get through a very demanding doctorate program all while tumbling herself and not only worrying about her dad, but also about you.

And your son and DIL who should have an awesome young married life before kids, juggling days off to come help you out because your on your little island paddling further and further out to sea.

I just don’t know how to cope with all of this anymore. One minute I feel like. “I’ve got this”. The next I’m hollaring at Brian because I’m trying to fix his computer and he’s looking at something else and opening it at the same time.

It’s all too much, it’s gone on for way too long.

All that said, I have absolutely no clue how I would feel right now if this had all gone quickly, if he had not chosen to vent and would have been 6 feet under right now. The grass is definitely always greener on the other side.

Ok, enough rambling. I just needed to get that all out there.

 

[diagnosed2016]

I think you are amazing. I’m sorry that you have to go through so much up and down. I’m a planner- I need to think ahead to get me through the present without panicking. I don’t think there’s anything wrong with it if it helps.

 

[ARCG]

I also think you are amazing and admire your honesty. You have been very helpful, not only to your pals, but to many people you have never even met. I hope you get some relief from the stress/anxiety after visiting the doctor.

 

[wishmobbing]

Sue, I feel you. I'm probably on the other side with a quickly progressing PALS. It's hard to watch but I wouldn't change it to a slow progression if I could. Which sounds hard. That's the essence of the beast. It's hard on people. If you wouldn't brace yourself against even the saddest hope it would have broken you a long time ago.
I'm sending you lots of strength!

 

[soonerwife]

Sue, honestly I can’t imagine how you have gone on this long. Hugs friend! I wish I had some comforting words!

 

[KateEmerson]

Sue,

I too wish I had some words or ideas that would help. I can only say that I totally understand the effect the " this is it" episodes and resulting roller coaster emotional rides do to your psyche, it is brutal. It becomes cumulative as we can't take the time or energy to process the deep emotions each of these create as we have to continue to function and stay strong and positive.

My heart is with you, Kate

 

[sassy]

I cried when I read your post. You are a wife, mom, and daughter trying to do the best for everyone. Wishing you strength and peace.

 

[Narrowminded]

Thank you everyone.

Went to the Dr. this morning. I’m starting on Lexapro. We will see how that works for the anxiety/ALS life.

As I was leaving, I was speaking with one of the gals in the office. She lost her Mom to ALS and turns out it was FALS. Bulbular start. I asked, and she has not been tested. She decided to just go with it and see what happens. It was good to talk with someone who gets it and that is what she said as well. We had a nice discussion.

DD was definitely happy I’m going on something.

So now the funny part. So I told her send it to Walmart where I usually get my med. Well as I was attempting to walk into walmart, my phone rang it was an auto call from Walgreens that there was an issue. Ok, so there was good to the mix up as Walmart was closed for a water main break, so I could not have gotten my med. Walgreens was right next door basically and my insurance cannot be used there. So drove over and spoke to the pharmacist who then transferred the script for me to Rite Aid. So I played follow the bouncing script. Rite Aid is back in the same plaza with Walmart.

Home now and chillaxin’ with my boy. Will start my med at bedtime.

Brian is status quo.

Hugs

 

[pittsburghgal]

Sue,

My Frank has also rebounded from what I thought was truly "the end" three times. I totally understand what you said in your post and I have had the same thoughts and feelings.

I hope the medication helps you. Sending you hugs.

Sharon

 

[Jrzygrl]

Sue,

I'm glad to hear you got some help from your doctor. And I'm sure the convo with the girl in the office did some good too. It is so nice to be able to talk to someone who truly "gets it". And here is where I'd like to thank you for being on this forum. Since I have joined, I have followed your and Brian's story. I can't tell you just how much I appreciate your sharing. The good, the bad and the ugly. I am sorry if I have caused any hurt with the "king of the rebound" title I gave Brian. Your willingness to share your experiences and emotions has been so helpful to me. I don't feel so alone in all of this.

My DH is limb onset. He currently has no breathing or swallowing issues. But he has lost complete use of his legs and arms, and now the hands are following, trunk and neck are so-so. He is frustrated in needing help with everything. We bicker way too much because we have both always been very independent. His strengths played to my weaknesses and vice versa. Now he seems to pick at the way I do just about everything, wanting me to do it his way. Adding to that frustration is the knowledge that this is probably going to be a long ride for us. He has stated more than a few times "I can't live like this". I actually saw him look disappointed last time we were at clinic when the RT told him his numbers were holding steady. He has been adamant that he will not get a feeding tube or be ventilated.

My ride has not been as wild, nor as long as yours. My comparison of choice these days is also an amusement park ride, but mine is a never-ending merry-go-round. Continual ups and downs. A good day followed by a bad one. Maybe a few OK ones, then a really horrible one. Over and over and over. And I look beyond our merry-go-round and see life going on without us. I can see it, just can't get to it. The ride just keeps going. On and on.

Fast or slow progression, neither is good. This disease just sucks.

Hang in there, my friend - I think of you quite often. Hugs.

 

[Narrowminded]

Jrzygrl - there was no hurt from “the king of rebound”. It’s truth.

I am so thankful my posting has been able to help you. It’s why I share what I do. If I can help just one person it’s worth it. Not to mention how it helps to get these things off your chest with those who understand.

I have often said that life is passing me by. Thinking that today was the end of July was crushing. It’s like we don’t get to experience the seasons anymore. We know it’s hot so that must be summer, or snowing so it’s winter, but we don’t really experience or enjoy the seasons. We hear about others vacations and dream of when we used to do that.

I find it interesting how different PALS take this dx. Some, like your husband saying he can’t live like this, then ones like Brian who are happy to just exist. And everything in between.

Try to have a good night everyone.

 

[affected]

This thread is going to help so many - until there is a cure.
But I'm glad it is helping you Sue, because your support is so important too.

I sometimes feel almost (but not truly) a little guilty for being grateful that my Chris was rapid progression. I would never wish this on anyone. I sometimes read one of your posts and still all this time later get little flashbacks of the day Chris showed me a photo of a vented PALS. She had been beautifully dressed, looked like for a wedding or other really important function. He said - see doesn't look so bad, I'm going to be the longest living PALS there has been. I was so far beyond horrified and trying not to show it. I was so relieved when it was confirmed to me that we simply do not offer this to PALS in Australia with our health system. I felt so guilty for my relief in one way, but I knew that I could not do years of being locked in my home caring for someone bed bound and being kept alive. Certainly a different matter if the person was able to be up and connected to life, but bed bound, no way.

You have my deepest respect, but also I am constantly so concerned for you, because you have been going above and beyond for so very long.

 

[Narrowminded]

Tillie I totally understand what you are saying about feeling “guilty” for fast progression, because sometimes I feel “jealous” of those who don’t vent and progress a bit quicker. I’m definitely not jealous and they definitely don’t have it easy, but you are right being stuck caring for someone for years is very demanding.

I think one of the biggest problems is there is no standard to this dx no matter what direction you chose. There are those who don’t make it out of the operating room trying to get trached and vented. There are those who only go a few months up to years upon years. You have no way of knowing which person your PALS will be. And until you are in it, you have absolutely no idea what you are about to face.

And the PALS who chose it have no way of knowing what they or their loved ones are going to go through because of that choice.

They say hind sight is 20/20 and boy they are not kidding when it come to this disease and venting. I know there are many PALS who are still up and productive while being vented and for them, that is awesome. Then there are those like Brian who at first did get up and go and do, but then just because stuck in his bed. It’s definitely not for the faint of heart.

I really feel for my kids. I have no way of knowing how it would have affected/changed them had we lost Brian 7 or 8 years ago. But I know what damage seeing their father like this has done. This disease is definitely no kind to anyone it touches.

 

[Narrowminded]

Slept horribly last night. Not sure why, ate some things I should not have, so its debatable if it was the med or the food. Tonight should be a better test.

Brian had been on room air for 36 hours and last night his SATS were dropping again and he could definitely feel it. This morning, he is still sleeping but his SATS are back up again. It’s weird as his body temp is all over the place. His forearms are burning up, his upper arms are cool as cucumbers. His head is somewhere in between. He’s a royal mess.

 

[ARCG]

Sue,
I also take lexipro and found it works better for me when I take it in the morning, as I thought it might be keeping me up at night.