<<< One of my favorite pictures of us. At Disneyworld's 3D "Bugs Life" - 2014.
5:45 a.m. Think I've slept about 3 hours total. Probably 2 yesterday. I'm pretty sure Ed's slept even less.
So the latest development is Ed might have dementia.
The roller coaster of grief, sadness, frustration and what the fucks?? has been far too much. I feel like I just got off the worst ride of my life.
I sit here, across from Ed, watching him as I type this... he's full of nervous tics, he's hallucinating, and sometimes he's totally lucid.
The most heartbreaking of these hallucinations was around 3 a.m. He shrieked with fear, looked at me, breathing heavy and kept saying "oh my God, oh my God." He said he was walking and fell in to "this" -- he nodded toward his body. "This is the worst nightmare I ever could have walked in to" he said. It took him an hour to calm down. He kept asking why he couldn't lift his arms.
Earlier today, he thought a friend was on fire. He asked me if Mia - our dog - was ok. He heard she was in a fight on the playground. He heard someone screaming and had to go outside to check. He was screaming he had rats on his body. Several times throughout the day, he's thought ants or gnats were swarming on his face and in his mouth.
The hoyer lift was over his bed (which was true) and he felt oil dripping on him. I was holding the remote to the bed (true) and he thought the cord was falling water. He called out for my nephews because he new they were here in the house.
He's constantly mumbling, non-stop talking for lengths of time. He talks to various people - our aide, my dad. Right at this exact minute he's telling me about seafood selling for $2.49 a pound. About an hour ago, he was making these weird mouth moves. I asked him what he was doing. He said he was eating pecans. I went with it and asked him how they tasted. Not like they used to, was his reply.
Leading up to this possible dementia diagnoses has been weeks of changing meds, of thinking (once again) he has days to live, of spinning like a grief-stricken tazmanian devil trying to manage ever-changing nurses, aides, end-of-life "stuff" (paperwork, bank stuff, last minute laywer advice). The worst - the very very worst of this past week is seeing my husband so uncomfortable. My God, he's a rock. Even with hallucinations, he's sweet, kind, never complaining. Through these moments of thinking we're trapped in an elevator, he's worried I'm ok.
These past few days have created a screaming monster in me. Do you remember that scene in Term of Endearment? Where Shirley McLaine is pleading with the nurses to do something, do anything to help her daughter who is dying of cancer? This was me times 1000. The goal of hospice is to make the patient comfortable and this was not happening.
Everyone in hospice has been nice. They've been trying hard. But for god's sake -- Ed's been on so many different meds and has had three different nurses who've never seen him before proclaim he's got days to live while he hasn't had more than a couple hours sleep in the last few days. Where's this comfort care? Why isn't he sleeping peacefully? MAKE MY HUSBAND COMFORTABLE.
(He's now asking me about his boat. He hasn't had a boat in years...)
Today is Wednesday. On Monday, I was crying and screaming to anyone who would listen... the hospice social worker, the substitute nurse, the clinic manager, the VA nurse who has nothing to do with hospice but just happened to call to say hi...
By Tuesday I knew I couldn't do this anymore. It didn't seem like he was dying but what do I know? He's breathing like a champ. His blood pressure is awesome. He's pooping and peeing regularly.
(He is now asking me why he can't move his legs to get them out from under the covers. I told him he can't move. He said "that's stressful"...)
Yesterday I called the VA social worker to ask about nursing homes. Could I use one for respite so I could regroup, figure out a plan? Do I need to look at one for forever care????
(Ed's now crying and saying this isn't working. I said what? He says he's not talking to me, he's talking to the pastor)
So the social worker said she'd help find something and call me back. The substitute nurse was going to order new meds (yet again), stronger meds, to get him to relax and to sleep. In the meantime, I get a call from the head of the VA ALS hospice department saying he's gotten wind of all of this nonsense and needs to help us.
I thought I was going to fall apart right there. Finally. Finally someone took my hand and pulled me out of this tailspin and said we're going to figure this out.
Ed's going to the VA today, to their hospice center. A bed hasn't been available in over two years. The ALS doctor said he always asks to see if he can get his patients in to the center but there is never an opening when he requests one. Yesterday, there was an opening for Ed.
(Ed is now wondering who's changing his diaper... he's asking me who's next to him. He thinks the bed is flipping over. I got up and pretended to stop it from flipping. He was literally shaking. I told him the wheels were on the ground and the bed felt stable now. Yes, he agreed, it felt much better.)
The doctor then told me he thinks Ed has dementia. About half of all people with ALS have behavioral changes but those changes don't impact their ability to function. They might just not "be themselves." Of that 50% - 25% develop dementia. I'd always assumed dementia on-set was early with ALS. Not three years in and not overnight.
The doctor isn't sure it's dementia. It could be end of life hallucinations but, the doc said, that isn't really how people with ALS die. In his 20+ years of working with ALS, he doesn't typically see people go through this as they approach the end of life.
It's now 6:42. Ed wants to get out of bed right now and get to the hospital. I know he's worried about so many things but isn't able to specifically verbalize it. He wants to be on time so he's wigging out about leaving right now. He's worried about how he looks because he's in a diaper and wonders if I'll wheel him in to the hospital like that so he's asked me 50 times to take off his sheet to see how his legs look. He's wondered about which pants he'll wear to church. How will he smoke when he's in the hospital? I sit by his side virtually 24 hours a day and attend to his every need. Who will be there to change his channel? Itch his nose?
Ed sort of understands why we're going. He knows he's "not right" and wants to feel better. Yesterday, however, we were talking with my niece, who's in Russia. Ed told her he had some good news. He doesn't have ALS anymore and he's going to the hospital to talk to the doctor about it. I had to tell him that wasn't exactly right. He still has ALS. The look on his face was awful.
So..... balls are still up in the air. Nothing is certain other than the fact this sucks. But now I feel a sense of relief that Ed will be getting round-the-clock care. I can get some sleep, so can he.
As the thought of this possible diagnoses sets in, more roller coaster thoughts creep through me. I was (somewhat) read for Ed to die. Well, not really. I want him here forever. But not like he's been. I want him to be free of this wretched disease. If he has dementia, how long can he live? Will this life be worse or just different? I know I can't handle how it's been the last several days.
I'm sweeping those thoughts aside. One thing at a time. (Right now Ed thinks we're in the hospital and we need to go faster to get to the room... I'm going to pretend I'm pushing him in the room)
I can't cry in front of Ed. That makes things a million times worse. How can I hold in these tears any longer? I keep looking at him. If he's looking my way, I smile and say "hey baby...." If he's here with me he smiles too and calls me baby. If he's somewhere else, he looks past me.
It's now 7 a.m. Time for me to get ready. Ed's now talking to someone else.
This is by far the hardest, hardest thing I've ever done.