Sometimes I read Sharon’s blog. I can completely empathize with her negative feelings toward her husband’s walker. It’s weird how these inanimate objects become so laden with symbolism and emotion.
For me, it’s my mom’s oxygen concentrator. It is on day and night, 24/7/365. The sound of it is so—heavy. Resigned. It sounds like ‘giving up.’ It could be that I know that’s how my mom’s emphasema FEELS to her. Breathing is so hard. Her chest feels so heavy. She is resigned to this daily struggle. She feels like giving up.
It’s a constant reminder. My life is not my own. My home is a quasi-medical facility. I have to make sure the electricity stays on. In my new housing development, sometimes the electricity has service interruptions with all the construction. When that happens, the machine makes this unbearably loud squealing noise. When that happens, the chaos and confusion for my mom becomes unbearable for me. In her dementia-esque, paranoid schizophrenic-ish mind, my father or some terrible force for evil has purposefully turned off the oxygen. Worse, she tries to tell me how to get it back on, and she makes no sense what-so-ever.
I also HATE her walker. Something that works so well for her, is amazingly grabby and pokey for me. Folding that thing up and putting it in my car should be easy. I have an SUV. I have done triathlons and marathons. It’s lightweight. Somehow it always gets stuck in the door, or the trunk and getting it out somehow pokes me painfully.
Her cane is always underfoot when she’s sitting with us in the family room. I know it’s there, but somehow I always trip over it.
My mom’s brother once said she thinks she’s Elizabeth Taylor. Meaning, she thinks the world is interested to hear every terrible detail of her tragic life. This is especially true of her medical equipment. She wants anyone in a service role to bring her a wheelchair, despite the fact that it’s not their job, and the wheelchairs and oxygen tanks are usually just there for emergencies. She does not connect that—we should independently bring everything she needs, and that we are not paying for the use of that emergency equipment.
She can walk fine. It’s a SHOW for those who will watch and get sucked in to her drama. She wants her wheelchair, her walker, and her cane, despite only being able to use ONE of these tools at any one time.
Many of her doctor’s offices are not ADA modified to accommodate these devices. Guess who is left holding the bag as she STROLLS unassisted with the nurse, as though she was perfectly healthy and ambulatory. I am like a bag lady with coats, purses, her walker, cane, and wheelchair—AND my baby’s car seat and baby and diaper bag.
I hate that she acts so helpless at times and then as soon as she has to, she becomes amazingly functional and ambulatory. Could she just be functional in the first place? Could she just pick whether she was an invalid or if she can walk? Either one would be fine, it’s the CONVENIENT switching between the two for attention-getting purposes that sucks for me.
The other annoying thing is her oxygen tanks. Again, these are enormously helpful to her, and should be so straight-forward. Turn the key to the left to start the flow, to the right to shut it off, yes? Aaahhh, but, on the wrong setting, it runs out FAST. Missing the washer, it sounds like it’s going to explode. It says the tank is FULL and it just came from the vendor, but—NO—it’s NOT—it’s EMPTY. Many times I was very happy that we were within 1 mile of the oxygen vendor for quick help and refills. I’m sure the nurses and on-lookers were horrified as my mom waited patiently for me to get help.
Another thing I thought of when I read Sharon’s blog—is—wow. You get to care for your husband. I thought how different I would feel if I had a loving, healthy relationship BEFORE the caregiving years. I recognize, it would be equally difficult for different reasons, and very sad. But it would be authentic, deserved grief.
I have always had this inverse-parentified caretaker role with my mom. I have not experienced her as a healthy, vibrant, happy person. This phase just sucks worse than the past and intensifies why I have a hard time with the whole situation.
Good, bad or ugly, I feel like she put herself in this state and in this situation with bad choice after bad choice. Bad habit after bad habit. Bad decision after bad decision. Prior to this, I thought our bad decisions primarily affected one’s self. Now I know, they affect everyone around us. It sucks that people around us have consequences from our bad decisions.
So—I feel like my caregiving experience is tainted by this ambivalent, negativity and my negative experiences and feelings from before this phase started. In some weird way, I am jealous of people like Sharon—who can just remember the love, and grieve that their beloved is changing and leaving them. How much my conscience would be soothed to know that I felt love and did everything I could for my loved one.
Her dementia-ish thinking is worsening. Today she said that my father would get fired if he tried to come here because Barack Obama would fire him. (He is a high-level government official, but has nothing directly to do with any president…besides, everyone he works with thinks he is wonderful and doesn’t know about his family life) The conversation was completely inane and non-sensical. So—in addition to not wanting to talk to her, it’s getting worse to even try.
Sometimes it’s just too heavy. No, I don’t want to lift your walker. No, I don’t want to help you wash your parts. No, I don’t want to buy your Depends. No, I don’t’ want to help with your oxygen tank. No, I don’t want to get your meds. No, I don’t want to clean the barf off of your floor. No, I don’t want to bring your meal. No, I don’t want to reminisce about the good old days. No, I don’t want your “help.” No, I can’t be more enthusiastic. Of course, I do do those things. But the difference between my feelings and the smile on my face hurts me. Thank God again for Denise and caregiving.com where I can be TRUE and real without hurting anyone with my negative feelings.
But sometimes, all I do is SIT on my BEEP and daydream about my former life in between.
I did hear today that someone of note said, history sends in the best man when times are at their worst. So—maybe—despite how despicable I feel, I am the best person to handle these worst of times.
