Be there for Pete, and never let him know how his disease scares me.

I’m in a crummy mood. My eyes hurt from crying, I have a headache, and I’m annoyed every time my desk phone dares to ring. (Did I mention I answer the emergency calls for a HOSPICE for a living?? Patients need me happy and helpful, I need out of this funk NOW.)
TWO seperate people felt compelled to lecture me today on the likelihood of Pete committing suicide to escape his Alzheimer’s. One of them was my aunt, and the other was a co-worker. And they were both shocked that I took offense. Am I wrong in this? Should I have assumed they were trying to comfort me by telling me if he kills himself, at least he won’t get worse, or were they just completely insensitive and cruel? I can’t decide, but I’m furious about it.

Well the weekend is over, I’m back at work. I left Pete around 230 this afternoon. And let me say..it went MUCH better than I thought. The 1st day was a little tough, as I wrote about. But after that, everything was much better. We hung out, talked, watched some movies, played with the dogs, basically just had a good time. :)
He talked quite a bit about his worries about the drug study he’s on, (he and his wife believe he’s on the placebo.) how much he hates Alzheimer’s, (he gets frustrated when he has to search for the words he needs) and Disney. (Pete LOVES everything Disney!) After ReeseCake left on Saturday evening, he kept looking for her, forgetting she was gone, and then remembering again, feeling embarrassed that he had forgotten. He asked a few times a day whether he had taken his pills (always after he had taken them), and Sunday afternoon he started wondering out loud when Sherry was coming home.
He told me why he’s uncomfortable with Andy (Andrew talks too much and spends too much time on the computer..note my complete lack of surprise. haha)
So- other than being EXHAUSTED, (I work nights, so my sleeping patterns were all wonky staying with Pete, going to bed at 9pm and getting up at 7.) I’m very pleased with how things went. I left him a note when I left, reminding him when Sherry would be home, that Rob would be coming to sit with him, and my mother’s (his sister’s) phone number in case he needed anything or had questions. (she could get to him a lot faster from New Tampa than I could from Polk County!) And I called him when I got to work. He was in a good mood, everything was fine. He even talked on the phone with jackie this morning (another of his sisters..) and really enjoyed it.

Success!!

Spending the weekend with Pete while Sherry takes some well-deserved vacation time with her sisters. He was a little down today, scared me a little. I learned that he hopes to die of a heart attack before this disease completely robs him of himself and his family. That hit me hard. It’s gut-wrenching to hear him talk about how Alzheimer’s is affecting him. He knows exactly how different he is now. He’s aware of every memory he can’t recall, every second he has to search for his words, every change in dynamic now that someone has to come stay with him, he can’t be alone. And if it’s this hard on ME, I want to cry thinking of how he feels.

HOWEVER—he did perk up when Reese came over. He played with her, teased her. He agreed (cheerfully!) to go shopping with us. He laughed at a Disney special we watched from his DVR, remembered to take his meds, talked some about family.. It was NOT a bad day.

He can be responsible for carrying his money, but he needs help with the figuring when the check comes. (How much to tip and so forth.) He takes the dogs out, feeds them (Except morgan, who recently had surgery and has new food restrictions and food-prep steps he’s unfamiliar with.) Pete is mostly still Pete, and I’m thankful for this time with him. But it was a punch in the gut to see the change in him up close and personal.

Hanging in. We could use any prayers people can spare for our family. Thanks. :)

My 1st overnight visit with Pete is scheduled for December 5th and 6th. I will admit to being a little nervous. I have no idea how he will react to waking up to find Sherry gone.
However, I’m also excited. This should be a wonderful break for Sherry, going on a weekend getaway with her sister. She definitely deserves some time to herself. I just hope Pete can handle her being away for 2 days.

My mom visited with him this week. She called me after to say that Pete couldn’t remember what to feed the dogs at lunch time. Thats a little scary. Pete has always doted on those dogs; they have a very complex and exact feeding schedule. Whenever they would go away for vacation, Pete and Sherry would leave whichever of us kids they had hired to dog-sit a long and detailed instruction list for the dog care. Now I’m worried about how Pete feels being unable to remember how it goes.

He got a bit emotional with kelly last time we were all over there, telling her he was afraid that his study wouldn’t come through with the meds in time for him to use them. (He is on a study. He and his wife feel that he is getting the placebo now, he had such a decline. But in 6 months, the study puts EVERYONE on the test medication, regardless of what test group they’re in.)

This is just a very emotional process for everyone involved. And I’m grateful that my family has a wonderful habit of banding together to face troubles instead of turning on each other.

My uncle Pete is amazing. He is such a strong person. When I thought I couldn’t quit drinking, he was my example. Also a young alcoholic, when he decided it was time to stop, he did. Cold turkey. Just made up his mind that it was over. And never touched another drop.
When Gran died, and we were all turned in on ourselves, hurting but unable to reach out for comfort, he turned around and embraced Andy and me. He knew we couldn’t make that 1st move, even though we needed it so badly. I will never forget that hug.
He was always the family champ at any game we played. It would almost come to blows over who got to be on Pete’s team! Haha.
And even though he has no kids of his own, he and his wife always make it a point to make holidays and birthdays special for all of us nieces and nephews. Gifts, outings, parties, trips to Disney.
We’re losing Pete.
He was diagnosed years ago with early onset Alzheimer’s. He can’t drive anymore. He can’t be left alone more than a couple hours. And until last Saturday, his wife, Sherry, has been unwilling to really accept help. She is completely burnt out, she snaps at him for forgetting why he came into a room, or for not remembering how to play a new video game (they have always been big on video games. We played Wii bowling Saturday. haha) She tells all of us (just loud enough for Pete to hear) about all the things she wishes she could do, but can’t because of Pete. Please understand that I am not judging Sherry. I’m not there every day, so I have no real experience of how difficult it must be for her to lose her intelligent, independent husband. However, working for hospice, I have learned to recognize caregiver stress.
So, when we were at her place on Saturday, playing games and fooling around (all of the nieces and nephews they’ve so thoroughly spoiled..), I asked her how often she has time just for herself. Alone, to do whatever she wants to do. The answer, apparently, is NEVER. So I offered to hang out with Pete on weekends. At their place, just to give her some time away. (Although I have to admit, I was also being selfish. I would kill for time alone with Pete. Just to hear what he has to say, to let him know I love him..)

I just hope I can be a help, and a comfort to him. I hope he never sees how terrified I am of Alzheimer’s, and never feels like there’s noone he can turn to.