In the past couple of days, he has seemingly forgotten how to dial a phone or operate any of the things in his room. He had a mostly clear morning on Monday, was tired from taking a shower and slept most of the day after it.
He was upset with me Monday night because he thought he was going somewhere with me, and I left without him. He sat with Joe in the living room for almost 2 hours and didn't say a word to him, but was angry when I got home that he didn't know where I was. (Every Monday after dinner I take the dog to training class.)
Today, he didn't know it was April. He didn't remember that he really enjoyed Jeff Dunham's special that was on TV last month. I mean REALLY enjoyed it too. Hadn't heard him laugh like that in a while.
He forgot to put his pajama pants on. He always has an excuse handy though. "I didn't feel like it" or "It was too hot" are common ones. Except he's a horrible liar. He's been cold since he got here, going out in the 70 degree sunny weather with a tshirt, long sleeve shirt or sweatshirt and a hoodie on top. Sometimes even a mid weight coat on top of that. When it's 60+ out. This is definitely not the same guy who took me ice skating on the golf course ponds or hiking in the dead of winter on Turkey Hill.
My husband is a saint. I know he's shown more patience with me than he rightly should, but I'm thankful for him, my rock. Joe I love you and I am going to make this up to you someday for letting me turn our house upside down and inside out for my grandfather.
Thursday will mark 5 weeks of this journey. The longest he stayed here before was 3.5 weeks, over the Christmas/New Years holidays.
He constantly tells people different stories. If we had lunch out and then went for a ride, he might tell someone we didn't do anything and he slept all day. The days run into each other for him, and it's probably my fault because I try not to force him to do anything. Katherine got a splinter in her finger while we were fishing Sunday, but to everyone else he told, she caught the hook in her hand. Apparently we also have x-ray fish that you can see through and you shouldn't eat them. In reality, they are called "Crappy" and it was most definitely NOT see-through. It was ugly though :)
I need to call the neuro's office AGAIN. This will be the third or fourth time in a 5 day period. They say they don't have anything from his primary yet, so they won't even schedule an appointment. The primary's office in MA insists the items were faxed (we thought they might have been mailed) last week.
He's yelling out now. This is going to be a bad night, I can tell already.
I have to get everyone up and ready for the dog's checkup at 9.
I'll be blunt - if I ever get diagnosed with this type of disease, I will kill myself.
I am not sure if he even is concerned that he's a burden anymore. He used to say it all the time. I haven't heard it in at least a week. I hope he just got tired of thinking it.
We are looking at walling in the office downstairs with a makeshift system of tall bookcases from Ikea and a curtain doorway. That way, nothing's permanent and can be used again later on.
I wonder if he has sleep apnea too. He makes some awful noises while he sleeps. I would imagine it's what it would sound like if you were dying in your sleep. I'm also afraid that one of these times it will come to that.
My biggest hope is that some sort of sleep aid and antidepressant can give us 'the old Dada' back for a little while longer.
I'm concerned my sister is not going to be able to handle this new Dada. She hasn't been in touch as much and I think this rapid change is going to be quite a shock. She's never spent a week with him under the same roof when he's been in this state. I have to admit though that a selfish part of me is hoping that she will be able to take care of him if only to see what my life has been like the past 6 years. It's never been quite THIS bad before, but I've been to hell and back with him and it looks like we're on a slippery slope back down right now.
It seems silly to even pray for anything. I feel like if nothing else I need to talk to my grandmother and ask her to bring him peace. He is so troubled now. Just peace, please? However it needs to come. I know she is somewhere watching over him and me and guiding us, but it's still a lonely road some days.
My friend Julie shared a poem with me the other day, and since I've been waxing poetic lately:
I had two mothers...
Two mothers I claim.
Two different people ..
Yet with the same name.
Two separate women ...
Diverse by design.
But I loved them both
Because they were both mine.
The first was the mother
who carried me here
Gave birth and nurtured and
launched my career.
She was the one whose features I bear.
Complete with the facial expression I wear.
She gave me some music which follows me yet.
Along with examples in the lafe that she set.
Then as I got older she some younger grew.
And we'd laugh as just mothers and daughter do.
As quickly she changed and turned to the other.
A stranger who dressed in the clothes of my mother.
Oh she looked the same at least at arms length
But she was the child now and I was her strength.
We'd come full circle we women three.
My mother the first, the second and me.
And if my own children should come to a day
When a new mother comes and the old goes away
I'd ask of them nothing that I didn't do
Love both of your mothers as both have loved you.
by Anonymous
