The warning long post- ongoing struggle with grief and exhaustion

[scaredwifetx]

I have tried posting this thread several times over the past couple of weeks but just could not muster the strength to do it. Everyone here has so many issues that burdening anyone with reading mine adds to more guilt

I have been struggling with so many feelings of grief, guilt, despair and anger. I am not even sure how to put this in words to everyone here. I can't share these struggles with anyone as I am expected to be strong and in control. These expectations are mainly mine. I have to keep myself so busy that it's exhausting and has messed with my health on occasions.

Steve has not left the house for two months, He refuses to talk about anything to do with his health and our conversations and life together are barely existing. I travel for work and am gone every other week and when I get home its so depressing to walk into the door and face the nightmare that ALS has put us into. We are very fortunate that Mike (Steve's brother) is living here to help as I am not sure I would survive.

I cannot understand Steve's choices to not want to know anything about what is happening or is going to happen. I know he can't bare to think about it and the few times he has, he gets very sad. One night had a panic attack worring about his breathing. I feel so guilty that I cannot help him but when you can't talk about anything it's hard to help.

I feel grief because I am watching his losses every day and know its only going to get worse. I also grieve the loss of our relationship. He has always been my guiding light.

I feel anger because no one should have to suffer with this horrid disease and it breaks my heart on a daily basis. I am not sure how I can make it to the end watching him suffer. We cannot live for the moment because he just sits on the couch, watches tv and does not talk.

It's over before it's over. He does not want to hang on and deal with the loss of everything and is terrified about not being able to breath. I do not want him to suffer and so want to figure out a way to let him go on his terms.

How do you all stay so strong? Writing this post as helped me to get it out. I cried all the way home from work today and was depressed all last week. I am on Zoloft 100mg so don't know if should try to get increase.

Thanks for letting me vent as I am starting to think I am going crazy which all started watching mom die in Feb. I hate this disease and just wish it could not torture us for so long.

I know I will wake up tomorrow, go to work and survive another day but dang it is taking so much. Sorry this post is so long anf I hope iy's not to big of a burden. I appreciate all the support given here/

 

[texastc]

I can't say anything except you are doing it...keep hanging on. Your every word rings exactly true. I was there...exactly. I wish I could tell you how I did it but I don't know, other than I just kept on...like you said...every day, another day. Tracy did talk about it...and that helped me...she helped me, get ready, for lack of any other terms. Glad you have his brother for sure. I had my dad...I couldn't have done it without his help. He came everyday...for hours. In the last half year, it was a two person job for sure...most tasks anyway. I cried til there were no more tears...that is healthy too. I know what you mean about having to be strong too...as did I. My own expectations...just like you. And I learned firsthand how ALS can affect parts of your life that you would have never dreamed of...It is really permeating...wreaks havoc throughout all aspects of your life. But then we can only imagine what its like on the other side...so I just kept the attitude of my side is nothing compared to what they are going thru...and used that to keep myself up...so to speak. I found that as long as I kept a good attitude...she did too, pretty well anyway. One thing I never realized til later...how tired she was. I had grown accustomed to the look...she was sooo tired at the end from the fight...really had no fight left. Re reading, I dont think that is pertinent here....but leaving it, cuz its true. The fight is extremely tiring...mentally and physically...and it takes such a toll, that I just tried to absorb whatever she threw my way...keeping spirits up as much as possible....while inside my heart broke repeatedly each day. I'm so sorry you are having to do this...you are right again, no one should have to do this. Wish I could help.

 

[texastc]

tracy always talked about big girl panties too...make sure you are keeping them out!!

 

[affected]

Oh Deb, I totally get it and you know that.

I could revisit all I felt reading your words.

The silence, the PALS distracting instead of connecting, the hopelessness.

It's why we truly have to take one day at a time at most, often just an hour at a time.
When I say that it is not a cliche, it is the truth.

While I was doing anticipatory planning on one hand, I had to distance myself and do that as a kind of 'job'. In truth I couldn't look at the whole big picture, the finer detail of each day was overwhelming.

You must rant here, it is actually a release, and can be the difference between getting through the next day or not.

Sending you so much love xxxx

 

[soonerwife]

I understand completely how alone you feel. I feel this way too. Part of it comes from it being so hard for my PALS to talk. The relationship we had before will never be the same and that's so hard.

My PALS doesn't want to read anything or talk about the disease either. I keep putting off the planning of the details of the healthcare proxy or whatever you call it. Partly because I hate to make him think about it and partly because I don't want to. Although I know it really needs to be done.

I'm so sorry you are facing the monster alone at home but you aren't completely alone. We are here, keep venting. You are helping us not feel alone.

One last thing, I noticed you were in Tulsa for work last week. If you come back to Tulsa, let me know. I work here, maybe we can meet for dinner?

 

[pittsburghgal]

Deb, I totally understand what you are going through and I wish I could hug you until you felt better. My husband also sits and watches TV all day. He will not talk to me about any end of life decisions.

I have been an emotional wreck these past few days. My parents live far away in another state and are 87 and 89. They do have a live in caregiver but I have not been able to see them in a long time because I am the sole caregiver for my PALS, Frank and he can't travel. I called my mother on Sun. and she was totally confused and slurring her words making it very difficult to understand her. This was a total change for her and I told the caregiver to call 911 and get her to the hospital. She has bilateral pneumonia and is very ill. The next morning I get a call from the caregiver staying with my father that he is going by ambulance to the hospital. He is in the ICU with pneumonia and hypotension. I have contacted my 2 brothers and they are on their way there but I am just torn apart because I can't be there and there is a good chance that one or both of them may die. I am frantically calling nursing homes trying to find one that will take my husband for a short stay but I am finding that they will not take a patient with a trach.

 

[vltsra]

Deb, you are not alone with these feelings. When I read your post I felt so sad. I think we are all going through something similar. My PALS is in the early stages, but he tells me how exhausted he is and does not want to do anything but sit in a chair in front of the television. I am filled with grief, anger, and horror at what this disease is doing to him. Some friends have told me that I am such a strong person. I'm trying, but I've had to be strong my whole life and wonder what will break me. The hardest thing is seeing him suffer; I've tried to raise his spirits but it is impossible. He will not talk about an antidepressant (I am on Zoloft too).

Pittsburghgal I hope you can get some help so you can see your mom and dad soon.

Don't know what I would do without this forum, really. No one understands except people who are going through this. Everyone else just expects us to be strong.

V

 

[njk0407]

I am quite new to this myself Deb, but I sincerely want to tell you that I am so sorry Nobody should have to go through this level of pain and anguish. My heart breaks for you, myself, and everyone else dealing with this. Unfortunately, I don't have any words of wisdom or advice as I'm trying to crawl out of this deep pit of despair that I find myself in. i just want you to know that I am so so sorry.

-Nikki

 

[Narrowminded]

Deb all I can say is the same that everyone else has expressed. I have yet to find a CALS who doesn't feel like they have to carry the world on their shoulders. I've often said to my daughter or others "I'm a survivor, that's what I do" While that statement is true of most of us here, we are all compromising our own health because of it. I learned over the past few months to let others know. Due to lack of sleep, I was truly at the breaking point. When I did, I now have cooked meals being delivered 2x a week. It has been a huge blessing. All that said I still struggle to feel like I deserve it, esp since I'm sleeping again now. I have to remember what I read one day and that is to not take someone elses blessing from them. By letting them into help, like cooking a meal, it also blesses them and I should not steal that from them. It really helps when you are someone like me or many of us to realize we don't always "have" to be strong. It's something many have repeated here that we do to ourselves mostly.

PghGal - Have you contacted Marie or Sandra at the ALSA? They may know of a place that can help. I sure wish I could do it for you. Praying it will all work out and for your parents as well.

Sue

 

[scaredwifetx]

Texastc. I am so thankful for your post. I felt much better reading it and it soothed me to know that I was understood plus I think you are one heck of a guy.

Tillie, I reread some of your book last night to help me fall asleep and I know all to well how much you went through and how much you are helping all of us. I don't think I could ever meet a person more giving than you.

Soonerwife, for some reason I feel really bad for you and know you had a very special relationship ith your husband. I thought of you when in Tulsa last week and really wanted to drive to my old town Cleveland and meet you. I will be back in Tulsa third week this month so hopefully we can have dinner. I was raised in Cleveland and hate knowing that someone I may know has to deal with this monster.

V- It makes me sad to know we have so much in common and PghGal I am so sorry for you. I lost my my mom in Feb and still feel guilty that I did not do enough, did not even know she has cancer and she lived with me. I can't even imagine how horrible this is for you and do hope you find some help so you can go be with your parents even if it is for a few days. Ask everyone you know for help, call the ALS association and use media. Something will come through for you.

I woke up today feeling better but that all ended by lunch. I had a bad fall at work, hit my head on my desk, passed out and then fell into a partition and desk. injured my already bad back, have a lump on my head, bruises all over my leg and hurt my tailbone. Would not let them take me to hospital because I do not want a workmans comp on my record. I am starting to wonder what curse has been put on me and I don't even believe in curses. My fellow employees are also wondering why so much is happening to me. They watched in horror as I fell. I got up from my desk to open the blinds to let some sunshine in, went to sit back down and my chair flew across the room as I started to fall I hit my head which knocked me out so I fell against the partition and another desk and then landed on the floor knocked out. One very embarrassing accident. Now I am at home and in a lot of pain and hoping I can walk tomorrow.

Another day in the life. I am really starting to wonder who the sick one really is here.

 

[soonerwife]

Oh my goodness scaredwifetx, that is horrible. Sounds like it was really a nasty fall. I'm so sorry you are having such a hard time.

Please let me know when you are in town. My PALS and I are going to Hawaii later in the month. Hopefully we can go to dinner before that.

I hope you feel better soon!

 

[scaredwifetx]

Also, Steve had his trial appointment today and his breathing dropped by 19% and is now down to 60%. He lost more weight and strength. Clinic is in two weeks and is the only way I can really find out what is going one. Hate is such a strong word and so deserving of this disease. I so wish I was rich so I could give all my money to research and will dance for hours once a cure is found.

 

[scaredwifetx]

i am so glad you get to go to a wonderful place together. Steve and I spent a week there and it was so special. i have tons of wonderful pics taken there that i will always cherish. We went in June as our Anniversary is the 23rd.

 

[Nuts]

Deb, you ask how we stay strong. I feel often that I'm faking it because that is the best I can do. It's not honest, but it keeps me from crawling into a closet and pulling a blanket over my head.

Your post is important, and as you can see, you are not alone. Please never appologize for venting here--it is cathartic and we do understand.

I have the opposite problem with getting out--my guy wants to get out of the house all the time. It's wearing me out, because I just don't have time or energy to do what I need to here when I'm on the road with him for hours every day. Sometimes I beg off, and then I feel guilty because I realize how desperate he is to live while he can. We are also teetering on the edge of a huge change. Loosing the use of his legs was a big change, but losing his arms is going to be much worse--for both of us, and it's coming more quickly than we expected. I keep asking myself what will "give" to make time for everything else I will need to do for him. Today he decided that it's time to let us help wash him in the shower. There goes the time that used to be spent changing the sheets, cleaning the room and preparing to dress him.

Please please be careful. That fall at work is frightening.

Pittsburghgal, I am so sorry about your parents. It's good that your brothers can step in, but it's awful to not be able to go when they need you. I was just able to spend a week in California with my mom who has Parkinson's, but have been unable to see my dad in Florida who has Alzheimer's. My husband wants me to go, but I think he's ready to make the trip with me (when we can squeeze it in). I do hope that you are able to go.

Becky

 

[affected]

Oh my, what this thread is showing so clearly is that everyone of us as CALS are facing so much and then more. I used to hate it when people would say - oh you are amazing and so strong, how do you do it all?

Like WTF? I'm bumbling my way through each day, going backwards all the time and I feel total wreck. I have no idea how I am doing any of it!

OK I was strong, but you all know that someone who has no clue saying this is more like a slap than a compliment.

Deb, tonight you had better go to the chapter where I broke my toe and lull yourself to sleep with that one. I'm hurting all over thinking of your fall and what that now adds on to your every day struggles.

You are all amazing - as CALS we are battling the worst monster, knowing it will win, and yet knowing that we still win every day that we give love and kindness to our PALS. It takes a huge amount of our energy, and it feels so many days like we can't do one more. Yet somehow, we do, and we are all warriors and every bit of venting is totally valid. Every time one of you vent, you actually empower every other one of us to get through the next hour or the next day.

We used to have a thread called pity party, and it was always cathartic. So vent away, you need the release, and you need to know that everything you feel is what every other CALS feels - it's the normal reaction to such an abnormal situation!