How do I tell a story without being gross, or making you want to run for the bathroom? I am not sure, but I will do my best to say each phrase delicately.
Al is my brother, in case you new blogger followers do not realize it. Al has Parkinson’s and is mildly mentally challenged. He is also a heart patient. I have been caring for him for almost five years.
In the second year of caring for him, he was diagnosed with Parkinson’s. He has gone through many changes in these two years, the latest being urinating in his undies. Here lies the issue of yesterday and today.
I go to a local pharmacy that takes Medicare, and we purchase a gadget called a Texas Catheter. It is very similar to a regular catheter, except it has a condom like look and feel that attaches to the outer part of a man’s private area, instead of a tubing being ran inside. There is a bag that attaches to the leg and a tubing attached to that to let the drippings flow from Al to the bag.
Now, I am sure that most of us are grown ups here and have seen the male specimen. We know that it can do tricks, by hanging low or hanging high. I say this with much blushing!!!
Now picture this, 2012, as Ma would say on The Golden Girls. Bathroom, Al sitting down on the shower chair, sister, me, sitting down across from him on another chair. Cuts open the cover for the bag and the cover for the attachments. I look at poor Al’s eyes and tell him I am soooooooooo sorry, that I have to be with him in such a delicate situation like this, and I will hurry as fast as I can, and if I hurt him, please say ouch!
I put my surgeon’s gloves on and I look at Al’s body part, and ask myself how am I going to get this tight-fitting rubber piece over something that is looking down at the floor and not standing at attention.
I think, tick tick tick tick, and I tell Al, well bud, here goes nothing, but I did not mean actually nothing, because by the tenth time of trying to get this stupid thing on, and it flipping back at me and reminding me it was not going to listen, I had probably made a naked spot on his skin where once there was hair.
The sweat was pouring off my brow and I could feel Alvin holding his breath. It was like doing a delicate operation with no knife. FINALLY, I get the little gadget in place. I attach it to the bag on the leg, and I have him stand up so I can see how it fits when he moves and then sits. We go through these motions a couple of times.
I am disappointed that the tubing is not very long, not giving Al much space, but it was all in place, so I quit. I wet a wash rag and wiped Al’s arms and back down where he had sweated from fear of losing his man hood, then peeled off my gloves, tossing them in the trash, and go to my own bathroom and cool myself off with a shower.
Now all this happened yesterday, before he fell in the early evening, so when he gets up from his nap, he tells me it rolled off. I said what rolled off, and he points to his umm, his personal area, and says, that! I thought, oh my gosh, it was so darn tight, that his whole thing fell off. I was castrating the poor guy and didn’t even know it! He says that he placed the bag in the trash. I said alright, I will call the pharmacy and tell them this is a disaster for the two of us, and ask if they have any suggestions.
After the fall and checking him out, I go to start supper and guess what is lying in the kitchen sink, THE BAG. Oh how sick! It has been in my sink, quick, get the bleach and a new pair of rubber gloves!!!
I take care of all that and the area is now all sterilized, ready for supper preparation, but I have now lost a bit of my appetite. I go to the computer for a bit, so I can forget the memory of my poor sink, and then later go back to do my duties. I did a load of laundry after supper, and discovered that each pair of undies and shorts were at different levels of wetness, so when the timing was right, I had to tell Al that he would have to wear the depend briefs from now on, and he didn’t say too much.
This morning, I called the Pharmacy and explained the issues, and she said she had longer tubing, that would help Al to move better, therefore the little attachment would stay in place.
To bribe Al to get him out of the house, because I had told him prior, that we would not be going anywhere today, and it is hard to change what was once said, so I knew that Arby’s was having a deal today on their new sandwiches, Turkey sandwiches. A great deal, free! Also, Dairy Queen was having a buy one blizzard get another for ninety-nine cents, so I ask him if he wanted to do these two things, plus ran back over to the Pharmacy. He jumped at the opportunity for blizzards, well not jumped, but did say yes.
We go and get the sandwiches, then go to the Dairy Queen and got the blizzards and then went to the park and ate in the shade on a bench. He is a slow eater compared to me, so after I was done I snapped these photos. After Al was all done, we went to the Pharmacy and picked up the longer tubing, and then I remembered that he needed a new electric razor, so I also stopped at the drugstore and bought one for him.
We go back home and we head to the bathroom. I am explaining to him that this will work much better with this new longer tubing, and since I had one day’s practice with the attachment going on correctly, this would be a breeze today.
Soft tears started flowing from his eyes, and he told me he felt like a little kid. I said that I understood, which I really did, but this old disease was trying to pull one over on us and we had to stay ahead of it.
He took his clothing off, while I put my doctor gloves on and I once again asked myself how was I going to get this on something that was not looking up.
It was no easier for him or me than it was yesterday. He was crying, and I was sweating tears. After several attempts and no progress in works, and no extra hands to help me, and having pulled the last hair I could get by with without being hit, I gave up. I told Al this is the pits, we can not make it work, and I am not going to have you suffer for this, when the bag of briefs was setting right beside us. He shook his head, and he, himself, yanked that nasty rubbery piece off of himself, and he threw it in the trash. I put all the clean items back in the bag that it came from at the store, so now I have all these little gadgets lying here that can’t be taken back. Texas Catheters anyone?? LOL
Decisions are hard to make
When it is not at all about you
You want to do the best you can
In everything you do.
With Parkinson’s there is no day
That everything is the same
You set you mind to be alert
To watch for changing ways.
Yesterday was neither good nor bad for most of the day, until early evening approached. It was hot and humid as normal, and Al had taken a nap, and I seem to always be running on low energy, so I decided to take a nap also on the couch.
I heard a soft voice speaking, but somewhere in my sleeping mind, it didn’t sound familiar, until I heard it once again, a bit louder, and when I opened my eyes I saw no one standing over me, but as I looked more beyond me, I saw where the voice was coming from.
It was Al, and he had fallen against a cabinet. His side of his stomach had scraped the corner of the cabinet, and he ended up with a nice rosy scrape. I helped him up, which wasn’t easy, as he was sitting in a leap frog position, and I had no base with which to start the process of rising up. With much determination on mine and much encouragement to him, the two of us got him standing, leaning on his walker. I checked him over with a jeweler’s stone glass and saw nothing else, so helped him get to the couch.
I decided right then and there, I have had enough of going it alone. A shower girl is not enough, the lack of volunteering from others is never here, and I am just tired and pooped out.
It isn’t that Al is difficult at all to care for, it is the constant little things. You know what it like on pay day? You have to get the pay check, then go to the bank, next pay any bills that may need to be mailed out, get groceries, and on top of that do the normal routines of any other day. By the time you get home and you sit down, you are all pooped out.
This is how I feel each day of the week, except it is 24/7, with maybe a four hour break once a week. Don’t think I am not grateful for that four hours, because I am, but it is not enough.
I placed an ad in the newspaper today, requesting help for a companion/assistant for four hours Monday through Saturday. It will not be a hard job for anyone, unless they plan to come here and watch television.
I want this person to be at Al’s side for anything he needs help with or seems to be struggling with. Maybe it will also be added showers to the week. Maybe it will be cutting up Al’s meals, maybe this person will even have to help feed him, wash him up after a meal, maybe it will be spent just chatting with him the entire time plus a meal, I don’t know.
All I know is I need more help, and I am going to get it! So, I come to you, to gather us all in a circle, holding hearts and hands and pray the same prayer, that I can locate this person that will take part of their day out to share part of their day with us. If we join in union, there is more strength, and I believe I can make this happen.
I want to do what is best for him
I want to do what is best for me
I make not this decision out of idol time
I made this decision with us both in mind.
Please hear this prayer I cast up to you
Oh Lord, I am on bended knee
I need you God, oh can you see
That I need help for this family..
- Friday Morning Prayer (journeywithd.com)
- The Praying Man (tithebarn.wordpress.com)
- Talk to Jesus (agirlikeme.com)
- The Gift of Prayer (theworldneedsgod.wordpress.com)