Have you ever been enjoying a meal, watching a good show, you go to have your last bite and it’s gone?! Somehow, inadvertantly you ate it without realzing it? I had that expeience last week and I was a bit dismayed about my level of sadness about the event. It was like a moment in time had passed, I forgot to make a point to enjoy that last bite, and now I’d never get it back. I feel like that’s the way life’s been going for us lately… so consumed by the ever changing world of pops and the level of attention he requires, that I just don’t have anything left in me to pay attention to even the last bite of a good meal. I’ve somehow self inflicted a world of parallasis to projects knowing that my attention will be needed any minute and indifference to everyday tasks as pops slowly progresses toward the second to final stage of dementia.
If it were just dementia maybe it’d seem more managable, but he’s got the trifecta of troubles; Congestive Heart Failure, COPD and Dementia. Giving him breathing treatments, getting him to stand on a scale so we can weigh him everyday to make sure he’s not retaining water in his lungs from the CHF and trying to find foods he’ll eat just to maintain his weight has become our main focus.
He is now at 96 lbs and we try to give him anything we think he might eat, of course sneaking in supplimental drinks into his shakes every chance we get. Food has become a lot more of a challenge, we aren’t sure if it’s the texture of the food, how much chewing is involved, or sweet vs savory. It’s probably all of it, according to the internet and maybe even the plate we put it on.
Last night we made homemade burritos, one of pops favorites and we thought the tortilla would be too tough to chew so we added his favorite sauce ontop of the meat with cheese and tomatoes. He took one bite and set it on the floor. We then went for cream of wheat and he ended up taking one bite and then smearing it all over his hands and face. Next we tried Raisin Bran, because he kept saying he was hungry but one bite and then he spit in the bowel. We gave him a half of a banana and when we got back to him he’d thrown it across the room. The day before he’d eaten all of a brownie and ice cream so we figured that would be a fail safe…. nope, no luck, and he’s still saying he’s hungry! Finally, I used the rest of a strawberry banana shake with ensure in it and gave that to him. He probably had half of a glass and didn’t want any more. That is not like him at all, so times are a changing. Even Pops water needs to be altered since he has a hard time swollowing, and it goes down the wrong pipe. When he swollows down the wrong pipe it causes him to cough and can result in pnumonia.
We use Thick it and it has really increases the amount of water he’ll drink, so he’s staying hydrated.
Don’t get me wrong, I’m honored to care for my dad and will be grateful to be there for him till the days end, but sometimes it is really draining. Physically, mentally and emotionally spent, but still grateful! Pops and I are so blessed to have Mitch carry the weight of these trying times, it would be too much for one person for sure. We are a team and even as I re-read this I know I wouldn’t want it any other way!
He wasn’t sleeping well at night, waking all hours of the night and getting wrapped up in projects, click here to see his oxygen hose art.
Being the fact that he, at times, is up all night which in turn makes his days long and rough, the doctor prescribed a different kind of sleeping pill…..BAD news. The side effects made him so weak and off balance that he fell twice in one day, we took him to urgent care thinking he’d broken a rib. Forturnately it wasn’t broken but certainly bruised. We had days of him bouncing off the walls just miserable,… come to find out, it was probably the pain he was feeling and couldn’t express it. When the doctors asked if he was in pain he said no… but guess what, he was and thats what was causing him to be so loud and anxious. We’ve learned that people with dimentia can’t express things like before and we have to learn how to listen differently! Here’s a video of how he was right after getting home from urgent care, it’s just heart breaking.
Now, when he wakes up at 2 in the morning and he’s hungry I make him breakfast and get him ready for the day. I would rather wake up 20 times a night than to drug him up, make him weak and worry about him falling more than I already do.
Just as we’ve gotten used to pee puddles on the floor at night, we’ve entered into the next phase….that’s right people, its now about the poo, the caca, the crapper doo, the doody magoo! A few nights ago we were concerned because he hadn’t had a bowel movement for a few days so when he finally went, we were all so happy.
Later that night I woke to the too familiar motion sensor, bleep, bleep, bleep I look up and see on the screen him standing in the middle of the room relieving himself. I tell myself I don’t need to hurry out to him as he’s already peed, 2 minutes later I hear another bleep, bleep, bleep and see him sitting on the end table, with his pants down. I manage to drag myself from bed and go to help him get back to his. Of course first I turn on the lights to clean up the puddle in the middle of the floor. Right when I turn on the lights pops is like, whoa, there’s a puddle there, what’s that from? I blame it on the rain, clean up the mess and think its all good to go, until I go to stand him up. There, in a soft serve massive pile ON THE END TABLE is his latest bowel movement. Now that’s not the worst part, the worst part is that he’s already forgotten what happend and ends up getting his hands in it, and then touching everything around him, his face, his clothes, me. Oh boy, after an hour, getting him showered and everything wiped down he was ready to eat and start the day, never mind that it was 3 a.m. by this time. I make him oatmeal, put on a movie and go back to bed for a couple hours thinking it was a fluke. I’m sad to say it wasn’t. Since then we’ve had a few more incidents of incontinence and we know that this too is part of the disease.
What hasn’t and never will change is love, his need for love, our love for him and his love for us. For that we are grateful.
Goin' Road Trippin' 