Pity Party coming on!

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Santa joe

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I don't want to ruin the upbeat momentum of this party, but I feel a bad pity party coming on for me. Today is a year ago my PALS went on a vent. I knew this was going to be a difficult journey but I had no idea the hell this last year would be. For those who haven't read my blog, my husband is the love of my life. I don't want him to die but I do want this to be over. Do y'all understand what I'm saying? I can't believe I'm thinking that much more less typing it. Am I a bad person? I watch him lie in this bed, unable to do anything except watch TV. My heart breaks for him. This is not living. He is existing. Why should I feel sorry for myself - look at what he is going through. When he was first vented, I thought my sole purpose in life was to keep him alive. I no longer feel that way. The good Lord knows when that day will come. I read on a post where a vent patient can live up to 20 years. I cannot emotionally or physically do this for that long. I felt like throwing up when I read that.

I'm still looking for some help here. It's not that easy. Like I said before - finding someone vent trained or willing to be can be a challenge. My sister (who lives 2 doors down) said she is willing to try. I know she is scared to death. I get it. Such a big responsibility to ask of someone. She's been here when I've had to bag him. I think she feels sorry for me. I hope it works out. Maybe I can get away for a couple of hours once a week. I know how important that is for us CALS.

Even though I don't personally know y'all, I feel a bond with each and everyone of my CALS. We are all in this together. This forum has been my lifeline. Love to everyone!
 

Rhonda J

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Please don't feel sad or like you are a bad person... you are a wonderful, strong person....it takes a lot to deal with what we are dealing with. I feel sad too for my PALS..he isn't on a vent yet but that is where we are headed because he wants a full code if anything happens. I don't want to go through that, I don't want to be married to a machine. The quality of his (and mine) life will not be tolerable. I, on the other hand.. have a DNR.. do NOT want ANY medical intervention, but he has hope that they will find a cure, but I cant make him understand that even if they do, it is not going to reverse the damage done.I feel like it is selfish for him to ask that of me...
I don't want my PALS to die, either, but I want to be free... even though the only time I get is to go to Walmart or my Dr. I do get to get out of the house for 3 hours on Thursday nights... I bowl. but it isn't like "a break"...I worry so much when I am gone. My daughter is here with him those nights. I live on the edge of "what if" and "when".
Tonight has been pretty eventful.. He has severe diarrhea. 3 showers in the last 4 hours. get him cleaned up and changed and it happens again. He will not wear Depends. Running down his legs, up his back...everywhere. .I just wanted to run away or grab someone and scream until they feel MY pain. My heart hurts. I feel I am not giving him the best I can. I didn't sign up for this.. HE didn't either. I try to keep my wits about me. but not working so well.
 

Barbie

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Aww honey, I do know how you feel. I am sending you a cyber hug, because that is all I can do. I have said the same thing many times, thought it and written it. hate myself for it, but I know it is true. I just wish I could have back my old husband and my old life. Ha, me and very single person on this forum, right?!

The vent...wow. I would not make that choice. but for you guys, it was the right thing at the time. I know the care is overwhelming and more than you probably imagined. when I read what you said and what others have said about vent care, I am stronger in my conviction that it can not happen to us. You have to be exhausted and the task of finding real permanent help probably feels more than you can face. I assume you have to hire an RN or an LPN? have you thought of hiring two for shorter shifts, training them both at the same time so if one doesn't work out you still have some help. chances are you will have turnover, but probably not both would quit at the same time. I think you hate to burden your sister, but she has offered and you need to take her up on it. of course she is scared--but she loves you both and is willing to learn. That is the perfect person for you.

For your sake and your husbands, I hope this doesn't go on for 20 years. There is always the option of taking out the trache, but he has to be ready for that and really want that.

I love you sweet sister...you are such a strong woman and a hero. I am so sorry for all of us and our pals, none of us deserved this.

Carole King, You've got a friend - YouTube
 

affected

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wow ladies, there must be something in the air!

Never would any of us 'compare' one of our situations to another I know, because we are all going through our own little hell.

But any CALS who looks after a vent dependant PALS just blows my mind as to how you do it.

I hear you loud and clear santa joe. I couldn't agree more - I don't 'want him to die' either, but I struggle every single day with understanding that this situation is only going to get worse, and worse, and worse.

If he was happy things may be slightly different in how I see things in my home.

But I have to hear him often say things like: he hates himself, he may as well be dead, he is revolting, he is useless, I don't want to do anything for him, he is just an object to me, he has no say in anything and his feelings are ignored, and it's ok I don't have to worry as he won't be here long anyway.

Some days I suddenly look at him and it's like an extra light comes on and I really 'see' him, and I just want to weep it is so unbelievable that my amazing man has been physically reduced to where he is in such a short time without warning and certainly without our permission.

Get your sister helping! Who knows how well she will cope, but give her the chance and she just may find herself becoming quite comfortable with giving you a break.

Can I ask, does your husband say that he wishes to continue living this way? I guess that is the cruncher in the end.

Huge hugs across to you, we do understand completely.

@Barbie and Rhonda such beautiful replies you gave, we all want our husbands back, but at least we have our sisterhood here to help us bear our burdens.

I reckon we could rewrite that great old song "Poor poor pitiful me", I found myself singing that along through the house at one point today, with lots of feeling in it, quite cathartic!
 

Ronnie& sissy

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Wish I could hug all of you! I mean no disrespect when I say this, but this scares the hell out of me! Even though my husband has elected not to have a vent, and he says no peg, it almost seems that I have my head up my ...! I guess I just block things out when it comes to thinking about what is in store for us. And I guess to an extent that's ok, but reading you all's post, it really makes me step back and say" oh sh.." ,!
Just yesterday, when I was getting him up from a nap, it was the first time he said" I'm getting so much worse, don't think it's gonna be long now". And I didn't have the heart to tell him that we have a long way to go yet. I know every pals is different, but compared to where all of your PALS is at, and where he is at, it just seems like we haven't even scratched the surface of this monster yet.
Anyway, sorry bout that, kinda got sucked in my head for a min..... Before I get off here, I do want to say;
I think you ladies are the most beautiful souls I have ever meet, you are all strong, caring, loving people. God put us all in our PALS lives for a reason, not only to share a beautiful life and love one another, but I feel he put us here because he knew we would be strong enough to take care of them! I will pray for you all and your families that he may give us all guidence, and knowledge, and the courage to continue our journey.
I can't thank you all enough for the words you type,sharing your story is guiding me through mine, and that is golden!

Love, sissy
 

ottawa girl

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Sissy,

Just so you know - from this PALS' perspective - each time I mourn another loss ( almost daily now) I think to myself - " oh, maybe I won't last as long as I'd hoped".

Every once in awhile, I speak that thought out loud - it's just a momentary feeling... It's hard holding in those emotions and fears ... Then the next minute when I'm enjoying myself - relishing a sunset, a hug, a visit with friends, praying - my life returns. As does hope and inner calm. Thanks to God, my family and heaven sent attendants.

Then I think - maybe I do have a while yet!
 

Barbie

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Elaine, I think that is how my husband feels too. he loves life now--I guess because he makes the best of what he has and lives in the moment. He did not always feel this way--early years were terrible and depressing. now he says he is going to live a very long time and whether it is true or not, that is how he feels. I am glad he is not afraid. I wish he had learned this in the beginning of his illness!

Rhonda, I think you need to tell your husband how you feel about a vent. I did that actually, I told him that I don't think that is a good way to live and I am not capable of 24/7/365 care. If he were to choose a vent, I would not stay to care for him. He doesn't believe that he will ever need one--but I did put my feelings & thoughts out there.

Sissy thank you for your beautiful words this morning!
 

zoohouse

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So we went to our first ALS meeting that occurs monthly. There were about 15 PALS and at least 1 family meeting. Interestingly there were only 4 PALS in wheelchairs, the rest were mobile, but one was on a ventilator. Apparently he had caught a cold and was unable to clear the mucous, and one night it got so bad an ambulance was called and he went to hospital. They told him the only way they could help him is if he was trached so he had to decide right then and there. They had the tracheostomy and then we was put on a ventilator to assist his breathing. He obviously had a talking device in his tracheostomy tube as he was speaking loud and clear, and I couldn't tell that the ventilator was actually giving him breaths he had it timed so well. After the meeting I spoke with them and found that although he could not move his head he still was able to control his mouth and tongue so speech was possible. His care other than the trache was no different than my husbands, and they went out daily with his portable ventilator attached to his wheelchair. He still was put on the toilet using a sling, and took showers, and was still able to taste and smell.
I guess I am saying this as my husband initially said that he would have invasive ventilation when the time came, until he heard that he would be bedridden and using diapers, then said that he would use NIV instead. Now I wonder.
 

affected

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@sissy scares the hell out of me every single day too! We learn somehow to not bow to fear, but that doesn't mean it's not the scariest thing out.

@zoohouse, it's the order of progression really isn't it. If a PALS has already lost use of their body and the breathing is last affected, then the vent option is different than when the breathing is affected much earlier than other parts of the body.
 

Santa joe

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Thank you all from the bottom of my heart for being here for me. I know that I have many friends on this forum - thanks Barbie for the Carole King link. I cried. When my PALS decided he wanted to be vented, I admit I had reservations. When he said "I just want a few more years and do you think I'm being selfish" I couldn't say anything negative. He was once so positive. Such a sweet, happy and loving man so full of life - remember he played Santa. I look at this man in the bed and long for my husband back. That will never be. We are all strong caring CALS. I say everyday "Lord give me strength."

My intent was not to scare anyone - sweet sissy - I just want my CALS to understand what is required of a vent patient. The vent care is no problem, the bagging is scary, the suctioning, oral care and changing the inner cannula I can do in my sleep. I want everyone to be aware of the time and energy it takes. It is a personal choice just be sure you have plenty of support. His sister was living with us and I was paying her. Nothing was asked of her but to help me out. Long story short - she was taking his Lortab. When she abruptly left after being confronted, I was stranded. I had a plan but no back-up plan. Lesson learned......

The good news is my sister came over today for an 1 1/2 for me to go out. Boy did I need that........I sat in the car and ate a candy bar. Did you know it can take you up to 15 minutes to eat a candy bar. Our sons and their families came over and I enjoyed my grandkids so much. Poor Joe. He can't handle much company anymore. Had to give him Ativan. He pretty much slept the whole time.

Love and hugs to all who came to rescue me out of the black hole I was headed to. I knew I could count on my sisters. I am forever grateful to this thread and for all of my new friends.
 

zoohouse

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Ah yes the chocolate bar in the car. I am getting a cold and feel like I have been put through the wringer, backwards, but still had to do the shower day. Then my sister from out of town came to visit with her little grand daughter and it was a blast. She is 20 months old and a going concern. She was so interested in the buttons on Hubbies ventilator, and kept trying to change the channels for cartoons. When she was told by her grandma not to touch, she began a baby lecture, hands flying, serious face gibberish going a mile a minute. We just howled with laughter. It was so nice to have a young life in the room, and Tim loved it so much. When they were leaving and my sister held her over Tim for a kiss she spotted his hand control and grabbed it, driving it straight at me before she lost her grip. Everyone was very impressed with my athletic prowess and jumping up on the couch and getting out of the way. Again we all laughed. One of the other weird things was hearing my baby sister being called grandma. My initial thought was, no grandma is down still at home but of course that is great grandma. Anyway it was a delightful day inspire of a head full of mucous.
 

affected

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My intent was not to scare anyone - sweet sissy - I just want my CALS to understand what is required of a vent patient. The vent care is no problem, the bagging is scary, the suctioning, oral care and changing the inner cannula I can do in my sleep. I want everyone to be aware of the time and energy it takes.

Even without the vent here I am so with you this. I can do every bit of my husbands care too, individually... But the time and energy to do everything is something else. Something has to give and if it is our own personal care and mental health, well we find ourselves there sometimes don't we?

So finally, since I didn't do one on new years eve, I'm making a new years resolution for myself - I'm going to take in all the help offered to me from services and friends, and I'm going to ensure that I get everything done by having many hands. My PALS will get used to it, even if he really wants me doing everything, he will either learn to put up with it, or will find that we have more quality time together.

We are starting a couple of little projects. Of course he can't 'do' any of it, except think and plan it out with me and make selections. I mean for him to find that if I can work and garden and be a person, and lots of help can get everything done, then I will have the time and energy to enjoy to do project stuff with him, rather than have just become his 'carer'.

Of course, he has ftd, so I might be just dreaming, but hey a girl can dream can't she, even for one evening?
 

barneyswife

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Dreams are superior to the nightmares we are constantly living in!
I am amazed and very relieved when I read how well you all have been listening to all of the voices, questions, concerns, love and terror that have been playing pin ball in my brain. It is a comfort in a weird way to know we all have them and by sharing them it helps to know we are not "ALONE!"
We are truly sisters and I love you all.
 

rosec

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I have bad thoughts very often. I am only human, right? We have been dealing with ALS for more than four years now. For more than three years, I have seldom had an uninterrupted night of sleep. But I still have my sanity, and I have to thank you guys for that, because I know I am not the only one in this boat.
 

Barbie

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This morning over coffee my husband told me he had a weird dream. he said "there was a big rollie pollie..." I repeated it back to him and he started shaking his head in exasperation. he said it again and I repeated it back--and he grimaced at me. then my son rolled his eyes at me and said, " geez mom, a big pot of boiling oil!"


LMAO! it was a dream so why not a big rollie pollie!

(you guys know what rollie pollies are, right?)
 
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