Things are so weird. Not good. I want to be glass half full girl. I want to think things are going to be ok. I'm sitting here waiting for Ed to poop. This is our life. A 3 a.m. poop. Our life revolves around this now.
I'm supposed to be thinking about getting him on a bowel regimen program. This is where I'd be sticking something up his butt (my finger? A suppository?) at the same time each day so he'd just go and get it done. No more 3 a.m. worries.
Going to the bathroom now is about a 30 - 45 minute ordeal. We just don't have this thing down quite yet. The last time he went was Saturday and it was a MANUAL EXTRACTION. It was horrible and we both cried and I tried so hard to make it be like it was just another thing, no big deal.
Right now, at this very moment as he's going, it's a frustrating nightmare. Up, down, up down --- I don't want to stand next to him as he goes so I walk in to the other room but within minutes he needs me to do something. This is how my entire day is. Up, down, up, down...
OMG - so now it's 3:50 - we did the manual extraction again. Bowel regimen is looking better. The issue with this is you have to do it while lying in bed. I can't get him in to bed correctly. He's like a sack of potatoes I'm slinging around in this lift. Ugh.
Ok - let me back up. So you know he was in the VA so I could have a weekend off 2 weekends ago. This, for some reason, seemed to be the start of the next decline. Neither of us think it was the VA stay itself. The decline would have happened anyways. But it was the stress of going down there, of the lift system
I can't even write. I just cry. So is Ed. I'll just sum it up:
- Hospice
We started hospice Monday. Unclear how this helps us quite yet. It's only Wednesday. Well... now Thursday. So we'll see.
- Coughing
He can't get that junk out of his throat anymore. We use this thing nicknamed a "pickle" or an accapella. He breathes in to it then I do this "quad cough" thing - I press between his chest and his tummy to help him get the junk up. This can go on for the whole hour (on and off) before it comes up.
- Anxiety / panic attackes
Ed's anxiety is through the roof. He can't breathe, he can't move, he freaks himself out even though I'm right there. He wakes up in the middle of the night, feeling trapped as if he's in a coffin, getting no air.
- Passing out
I'm not sure where this comes from. The panic attacks? Lack of air? It's happened 4 times. It happened tonight. He'll call out my name, I go running to him. His eyes roll back in his head but eyes don't shut. His head falls to the side. His mouth goes slack.
The last time prior to this one, it lasted 30 seconds or so. I was slapping him across the face, screaming at him. He wouldn't wake up.
When he comes to, he doesn't remember it. He'll be very unfocused. The 3rd one happened on Monday afternoon and all day Tuesday he was so out of it. The nurse comes tomorrow and we'll discuss this with her.
- Unfocused
In general, Ed seems to be less focused. He told me yesterday, he's having a hard time listening to me with the tv on. Or, if two people are having a conversation around us, he can't stay focused. Sometimes when he looks at me, he looks right through me. I'm not sure if I'm making more out of this than I should. It's just different and it feels scary.
- Breathing decisions
So these passing out incidents lead us to the talk about breathing decisions. Ed's "DNR" or do not resuscitate. But that's for those big moments, right? Like end of life, no quality of life times. Not now. Right????
He isn't using the breathing equipment he's supposed to be using. He doesn't have to. I think it's silly not to but I don't tell him this. It's his decision. But... what happens if he passes out, stops breathing or is gasping for air. Do I just sit and watch that happen? What are his wishes in those smaller moments??
- Pain
When you read about ALS, everything tells you ALS isn't painful. This is WRONG. He is in more pain than ever. His knees hurt. His legs hurt. His feet hurt. His elbow hurts. His butt hurts.
He's on morphine as well as another opioid. Now the Ativan. Lately the pain bursts through the medication. Hospice will provide us a massage therapist. I've been stepping up the range of motion stuff.
This is getting hard. If I'm scared and sad, I can only imagine how he's feeling. And that's when I cry - when I see him hurting, scared, sad.
I know it doesn't seem to help sometimes, but please remember that we are all with you in thought and prayer, Lynn. Ed is such a lucky man to have you. You are stronger than you think! I pray that you both find some form of comfort and/or relief from the hospice care. Take all the help you can find, and NEVER feel like you have to do it all. Hugs, love, light and prayers heading your way. Please try and rest!
ReplyDeleteAll of the support we get - whether it's here or on FB or through emails and calls - we take all we can get!! I'm thinking about getting a calendar going for people to come visit. He can only handle about an hour but I really want him to know he's loved and supported... Colleen, even though we don't get together in "real" life - I always appreciate staying in touch and love the support you give me.
DeleteOmg i cried reading this. We are at the same point except my husband got a tracheostomy. Its so so difficult to watching him when he has so much pain. I try to do my best at 1 or 2 or 4 in the morning stumbling out of bed to help calm the pain in his feet or knees and now he's entire back. He asked to be lifted or pulled up as i fight to get out of this state of sleep. I muster all the strength i can get to lift him as my hands are weak because im still half asleep. He gets frustrated and starts screaming but nothing comes out because his voice was lost 2 years ago and that gets me frustrated because in his eyes i should know what he needs. All i want to do is run away and cry cry cry because it hurts to see him this way. But i cant run or cry i just have to breath in deeply and find a way to make him comfortable. Done i go back to bed and as im pulling the blanket over me he rings that darn bell, so i again get up to see what he needs and his foot got out of place and is hurting...it seems like it endless. He is at the point that even ringing the bell for my help is harder he hates the fact that he no longer can move his body at will so he has requested Hospice. I've always told him I would respect his decisions but the fact that he might not be here with us is so scary. Not to have him here and help me raise our little boys hurts but to watch him in zo much pain hurts me more. We have been together for 24 years there is nothing i wouldn't do for him to help him make life a little more comfortable and easy. I dont hate but i do hate ALS its a bastard and what it does to a family is heartbreaking. Thank you for posting this it helps to know im not the only one that goes through all this and makes feelings much easier to understand. Many blessings too you.
ReplyDeleteOh Marizol, I cannot even imagine doing this with kids. My guy and I have only been together 5 years total. I guess I'm envious you have 24 years together - so many memories to cherish! And yet -- when it comes down to it, none of that matters when we're facing this monster. We've been in hospice a week. They've been wonderful. It will help you so much. They will give him more drugs to make him feel better. It's scary to think about that but this past week, I've seen my husband more at peace than I have the the last year. Much love to you, your husband and your kids.
DeleteMy heart breaks reading my this... So much is just like our life... Such a scary time.... Sometimes I think it would be easier for God to take,him, but then I cannot imagine my life without him....and all of this ALS stuff.... It is so hard.... Stay a strong, we are all in this together.... Really helps to know others are going through the same stuff that I am dealing with...same questions....
ReplyDeleteI'm glad these posts help. I never know if I'm sharing too much information. And we know so many people have it worse than us. Overall though, it helps to know we're not alone and that others understand the path we walk. Much love to you and your husband.
DeleteI am so sad reading this. Please share this post with your Hospice staff. It will help them find more ways to help you. They can help in most ways people don't think. Take advantage of what they offer. They were so helpful to my sister and I when my mom was ill.
ReplyDeleteMy thoughts and prayers are with both of you.
Thank you for your suggestion and your support. That's a great idea. Blessings!!
DeleteI am a Hospice Chaplain. ALS is one of the saddest things I see - second is COPD. Don't forget you can call Hospice for nursing help or emotional/spiritual support 24/7. My prayers are with you and your husband.
ReplyDeleteI am a Hospice Chaplain. ALS is one of the saddest things I see - second is COPD. Don't forget you can call Hospice for nursing help or emotional/spiritual support 24/7. My prayers are with you and your husband.
ReplyDeleteThank you, April, for the reminder. We forget about that side of support sometimes and it's just as necessary.
DeleteMy heart is breaking for you and Ed. This journey is not an easy one, but you are doing an amazing job. Please reach out to friends and family for support, as well as to hospice. They can help manage the break through pain, as well as the anxiety. More meds to keep Ed comfortable is ok. And, they can help you, too. I know that Caregiving is emotionally and physically exhausting. You need to take care of yourself, too. Sending love and hugs.
ReplyDeleteThanks, Shaun. We are so happy with hospice so far. We feel like Ed has a lot of living left to do -- that's the weird limbo! With ALS - hospice isn't the death sentence. This past week has Ed more peaceful than he's been all year and that's been such a blessing.
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