Becoming Dependent

For most of my adult life I’ve valued being independent. Resiliency is a part of feeling independent. My slogan might have been "Whatever life throws at me, I can handle and I don’t need help.” A somewhat too exaggerated view because I did have co-dependencies, I’ve enjoyed my marriage and children. Now, because of Parkinson’s and old age, I’ve lost or am losing my abilities to take care of myself. Of the Activities of Daily Living (ADLs) I am only able to feed myself and I’m pretty sloppy and have to have food items cut up for me. ADLs are activities related to personal care. They include bathing or showering, dressing, getting in and out of bed or a chair, walking, using the toilet, and eating.¹

Transition between spouse/caregiver and caregiver/spouse

There is a huge difference between knowing I would likely experience the loss of certain abilities and experiencing the actual loss of certain abilities. One element that seems to have escaped my thought process is that some of the losses have to get done to live. If I can no longer perform these activities, someone else has to do them for me. Two or three examples. In the sprawling US, one has to drive because public transportation is not efficient and driving is so convenient and taken for granted. When Parkinson’s related neuropathy made me stop driving, my spouse/caregiver took over and has become my on-call taxi driver. When my fine motor skills deteriorated due to Parkinson’s, my spouse/caregiver has had to step in and get me dressed. When my balance got bad and I became a major fall risk, my caregiver/spouse helped me to transition from walking sticks to a tall walker to, eventually, full time in a wheelchair. Because of balance deficits and loss of fine motor skills, my caregiver/spouse now has to assist me in transitions and push me around in that wheelchair. Yesterday, we ordered a motorized or power chair.

Different Parkinson's points of view

Expand these examples to the changes in the ability to accomplish the ADLs. Judy, my spouse, and I regard this transfer differently. She says we’ve known these times were coming, in intellectual terms, since the day I was diagnosed eleven years ago and it could have been either one of us or even both of us. In addition, she reminds me of our vows sixty two years ago and those words “for better or for worse." My views have been of guilt. Guilt for having to have her do all of these things for me and guilt for being unable to do the things we hoped to do (our bucket list) and regret about my lost independence. One of our positions is not healthy and the other position may cause burnout.

Maintaining independence

We are not the only couple or individual who find or will find themselves in our position. We actively work at doing our absolute best to minimize the affects on our relationship and have been way before my physical condition reached this place. We talk with each other about everything before it becomes an issue. We recognize that maintaining our independence by doing as much as we can for ourselves for as long as we can is important to both of us. Judy has time for her photography and gardening and I have time for my writing and hobbies like ancestry research. If its not, it should be a concept called my time together and her time together as we spend all our time together. My responsibilities include not giving up and, at the same time, acknowledging I can’t do everything for myself. I do PT twice a week, have a speech and cognition therapist, and a big deal for an independent guy, I have a mental therapist. I fully admit I can no longer be that... I’ll do it myself guy. I don’t think I was ever that guy. I need help.