I’ve written here before about my use of caregivers to do the most basic tasks required in my life. The minute I wake up in the morning till the time I go to bed at night I am not alone. I require help for the most basic of tasks from getting up out of a chair to transferring into my wheelchair to using the toilet to dressing myself and beyond. This is a constant reminder of how disabled I really am. I’m not able to do the most basic tasks for myself even though I try I need these people around.
The routines of care begin first thing in the morning when we perform the daily task of wiping the spaces on my legs where sweat might collect in the night. This involves lifting my legs up and placing them on the arms of my sleep recliner spread eagle to give my caregiver open access to the cracks where sweat collects in the night. It’s rather like the position one takes in the gynecologists exam room meaning my caregivers must get up close and personal with my lady bits in order to get the job done. One of my caregivers is a young man will call him Jay. At first, it was awkward. I had to get used to having a young man looking at my private parts on the daily it actually touching me to clean me up. No matter how professional the relationship is between caregiver and patient it’s always gonna be some time before you feel comfortable doing some of the things it must be done in the task of daily living. This morning wiping is one of the first.
Even beyond the need for caregivers there’s the equipment involved in accomplishing daily life. In order to stand up I use something called a sit-to-stand lift. Think of this is a mini crane. I put my feet on a platform and the belt is wrapped around my chest. It’s pulled tighter and tighter to ensure that when I’m lifted I’m standing straight. As the belt is tightened my chest gets stuck under it requiring a caregiver to lift my breast one by one and put them on top of the belt so it can be pulled even tighter. Think of this device as a mini human crane designed to take the place of my legs for getting me from place to place. It’s a requirement I must endure but a process I resent. Once I’m in the belt and hoisted up on the lift I can be carried from place to place by my caregiver. It makes me feel like a package that needs to be delivered and not a human being. The lift carries me to various places sometimes to the toilet, other times to my wheelchair other times to my sleep recliner. If I need to go there, it’s my sit-to-stand lift that will get me there with a caregiver driving.
When my lift carries me to the toilet a whole new process of interaction between patient and caregiver begins. I need to be placed on the toilet in just the right spot in order for me to use my bidet in order to actually accomplish pooping. This is because my lower level parts don’t work properly and I can’t poop without the use of the water from the bidet pushing the poop out of my body. I know this is a level of detail that’s probably TMI for a lot of folks but it’s what I go through on the day-to-day basis. Once my caregiver gets me on the toilet in the right spot we have to do the process of lifting my butt out of the toilet where the lift plops me down and on top of the toilet seat which is done using a material called Dycem which is a heavy plastic film that grabs my skin and lets it be lifted effectively. The lift comes into play again when it comes time for wiping and getting off the toilet. I have to be hung for a short period of time while wiping commences to keep everything clean and hygienic. From there I’m taken to my wheelchair where I will spend most of my time in any normal day.
Once I get in my wheelchair I’m ready to do what I always do to get started and give a day and that is a sit at my computer and do the New York Times daily crossword puzzle. I also do the word games to challenge myself to keep my brain active. I do all of the crossword puzzles including the Mini and the Midi as well as the games that challenge your mind in other ways. For example I do the daily Wordle and challenge myself to get it right. These are the ways I try to keep my brain from dying and words flowing in my brain. It’s what I do when I’m not writing. I do this sitting at my computer with my legs elevated sitting on a pillow so that my legs don’t swell. It’s comfortable for the most part and I sit at my computer and play games or right until around 4:30 PM or 5 PM when I transfer again using my sit-to-stand lift to my recliner chair in my living room to watch television and relax for the evening.
My current lineup of caregivers includes many different personalities. Let’s talk about Jay for a minute. Jay has been working with me for several months now and it’s only recently that he’s actually started conversing with me. I’m not exaggerating when I say he barely spoke to me for the first several months that he worked here. We would perform all of these very personal functions in complete silence not even hello or how are you but complete silence. This was very strange and hard for me to get used to. I would do everything I can think of to draw him out and nothing worked. To make matters worse it’s just so happens that Jay is the son of the owner of the agency that provides my caregiving. So it was very awkward when I had to have a conversation with the owner about Jay’s performance in the way he completely ignored me beyond the tasks of daily living. But it was a conversation that had to be had so I did it. I have noticed recently that he has begun to change. He actually draws me out with questions about my life and shows some interest and learning who I am beyond his patient. This is a welcome change and one that was required that he was going to continue being one of my primary caregivers.
Then there’s my caregiver Venezuela. She’s the opposite of Jay. She’s engaging and personable a delight to be around in addition to doing a great job with the tasks of taking care of me. If I could have more like Venezuela I would take that in a minute. She takes care of me and she has respect for my home and these are things that are hard to find in any caregiving relationship. The respect for my home is a big deal to me. There’s minor cleaning involved with being my caregiver making sure that my house is kept in order with basic things like sweeping and mopping and doing dishes. They’re the tasks that I would do by myself if I could because I’m kind of a freak about keeping my house neat and tidy. When things are in order I can relax and I would do these things myself that I could. That’s what being the caregiver means doing the things I would do if I couldn’t. But some caregivers find these tasks to be an annoyance and refuse to do them. Those relationships don’t last long.
Finding the people that are willing to live in my world and make my world the way I would make it if I could do it myself is one of my biggest challenges. Right now I have a good lineup. It’s always up in the air how long these relationships last. There’s been an array of people in and out of here some better than others some I missed others I was happy to see go. It’s a unique relationship I don’t like anything I’ve ever been a part of in my life and I’ve lived a long life full of relationships with lots and lots of people. I think it takes a special kind of person to be a caregiver because you have to be willing to take on the tasks of making another’s life a life worth living. It means learning another person’s habits likes in dislikes and remembering those things day-to-day in order to keep a person happy who previously you had no relationship with but now is a fundamental part of your life.
I’ve written in these pages before about my caregiver Evona. Evona has become my dearest friend. Having her in my life has been a blessing beyond anything I would’ve hoped for. And yet the bottom line is she is one of my caregivers. Somebody who came in my life with the primary function of taking care of me and learning by likes and dislikes to help me live a daily life worth living. Not every caregiver relations turns into a friendship but I was lucky to have this one because this friendship is unlike any other I’ve ever had. It’s that special and I feel blessed that I’ve been able to have this person being placed in my life for a functional use that’s into something so far beyond that basic use. It’s a good example of how varied caregiving relationships can be. Sometimes if you find people who change your life and ways you never could’ve imagined. Other times to find people who barely speak to you but do a good job with the tasks day-to-day life.
It’s the weirdest experience I’ve ever had getting to know people and I’ve lived a long life of getting to know very many others in very many situations and none have come close to being like this. None of my skills from being in the corporate world as an advertising executive come into play here. I try to use my management skills and my communication skills but the truth is these relationships have forced me to build a whole new toolbox of skills for creating strong interpersonal relationships. In some cases I have been successful in others I have failed miserably no matter how hard I try. It’s a source of frustration that I don’t have level of control I wish I had over how these relationships unfold but it’s reality. And we all know in this MS life where you rely on others for your most basic functions control is elusive.
Source: bethybrightanddark.com