The last two weeks have brought drastic change in Mama, it’s almost hard to believe.
I keep seeing that first MRI of Mama’s brain the doctor showed us back when they felt sure she had Alzheimers back in about 2009. The doctor explained the white we saw on the screen, the white matter, that was overtaking her brain slowly then. I keep hearing his comment that based on where the white matter was, he could not believe she wasn’t falling, but she had not and has not to this day.
After that appointment, we met with Hospice and Mitch and I attended a Hospice class on Alzheimers grasping for any information we could find. We learned more about white matter and being the visual learner I am, it was so helpful to understand that as the white matter spreads over our brain, it’s short circuiting the parts it hits, like a fuse going out, sparks flying, connections breaking. All of this causes memory loss, words to come out that don’t make sense, seeing things that aren’t there, falling, and so on. It just depends on what part of the brain it is hitting at that time. It also causes a person to only hear bits and pieces of what we’re saying like every fourth or fifth word. This was so helpful to understand why Mama was not comprehending anything. For example, we would say “Mama, go put on your pajamas and get ready for bed” and she would hear, “Blah, blah, blah, blah, your, blah, blah, blah, blah, bed”. Now more than ever, we talk to her, about her situation, we can say anything, and she just stares and smiles. One word communications are so important.
But understanding the white matter helped me and every time Mom has done something new in this dreaded process, I’ve seen the white matter slowly oozing into another section of her brain and shorting out yet another circuit. Right now, it’s flowing more freely.
Since that time a few years ago, we’ve watched the disease spread somewhat slowly based on what we hear others day. Many of you have shared with us that it lasted 15, even 20, years with their loved ones; others have said 3 or 4 years. We don’t know how to measure it at this point but while we thought the last 18 months or so had been rather fast-changing, they’ve been nothing compared to the last two weeks.
Mama’s never been a wanderer other than she loves to walk around the yard everywhere picking up sticks or walk down the road to take the trash can EVERY doggone Tuesday evening. How she remembers that, we don’t know, but she does without one word of reminder. Sort like her hair appointment she remembers every week but that’s another story! Anyway, Mama may walk but she always stays within the boundaries of the yard and of course someone is watching her at all times. Until now, one of the things Daddy’s been able to do is work on his tractor around the yard or fields next to the house while Mama would sit on the deck and watch him and he could watch her. Daddy loves that escape for them both. But this week, Daddy was mowing with the tractor and had turned to back up and there stood Mama just standing him. After catching his breath from the scare, he turned off the tractor and asked her what she was doing and she said she just saw him and wanted to be with him. Daddy’s heart sank I’m sure but he told her to go back to the deck and he’d put the tractor away which he did…. another respite for him now gone. What if he’d not seen her.
Mama doesn’t recognize Mitch anymore. She thinks he is Evan or Tyler, one of Mitch’s sons, and she asks him continuously about his girlfriends and Mitch just replies (although he likes to imply he had more girlfriends than he actually had:) She’s calling Daddy Tracey frequently now and she doesn’t know the grandchildren really at all. This week, I was sitting in the den and Daddy and Mama came in from being gone and she whispered to Daddy, “Who’s that sitting in there?” pointing at me. Once he told her it was me, she came straight to me, hugged me and said, “Tracey, I love you. I sure wish I saw you more” which she says a lot even if I’m there every day. And now, she’ll look at me and say, “Tracey’s coming to get me” or “Tracey should have been here by now.”
She’s getting a little quieter now too, moving slower, much more feeble suddenly. She used to could put on her pajamas at bedtime but now she comes back having changed clothes to another oddly matched outfit for the day.
And this week, she came in and asked Daddy if she could sit on the deck a while and talk to “those women” out there. Daddy hesitatingly asked, “What women?” and she just said there were some women on the deck and she was going to sit out there and talk to them a while. Daddy told her okay and he edged to the door to watch her and make sure no one had actually pulled up in the driveway or that he didn’t see the women too which is sort of sadly funny. But they hadn’t and he didn’t:) and she was out there alone but in her mind she was with these women.
I cried that night in the car leaving Mama and Daddy’s, trying to grasp it all, and as crazy as it sounds, I thought, “Lord, may they at least be friendly!” and then I had a peace come over me that at least in her mind, she was not alone. I tried then to think about her sitting out there with her best friend, Betty, who passed away tragically 25 years ago, and whom she’s missed terribly ever since, with Aunt Lucille, her favorite Aunt who passed away not so long ago (and to this day, she begs me to take her to see Aunt Lucille and I just tell her we’ll go tomorrow). And I hope her Mama is out there too. I hope women she’s loved and lost are there, even if just in her mind, and they’re having a good conversation. At least she’ll be happy if only in her own world.
I don’t know what lies ahead but it is what it is…one day at a time.