When you are a strong, independent woman, like me, being disabled is a huge pain in the ass. It puts a real crimp in my ability to do whatever I want. Being on Medicaid really doesn't help as I have a little bit of money. Not enough to live in my own place and have helpers come to me. But enough to make living in a care facility a little bit nicer. In any case, I am not in charge of my money while I am getting great care from Medicaid.
It was very difficult to make the decision to move from living on my own to living in an institution. In the end, I was pushed into it because I did not own the house I was living in and my landlord ended my lease. I also contracted COVID-19 September of 2021 and went to the hospital. I never returned home because it was becoming more and more difficult to find helpers to take care of me in upcountry Maui.
Before that, I had to deal with transitioning from being able to transfer independently, to being Hoyered everywhere. My abilities changed so gradually that the only way I knew it was time to stop transferring was when I fell during a transfer and fractured my femur.
Even after that happened, it took me 11 days to realize I had actually fractured my leg as I was still transferring on it. My physical therapist at the time insisted I see a doctor. ‘OK, I thought, but I'm fine.’ Nope! I had ’a pretty severe fracture’ and ended up in a splint for three months. ‘So that's why it hurt when I transferred’, I thought. Yep, that's me being stubborn.
No matter what, I was going to make living by myself viable for as long as I possibly could. I think I knew that being institutionalized was an inevitability, but I also knew that that came with its own set of bad consequences. Living on my own had three distinct advantages. I had privacy, my cat and I could eat what I wanted. Moving into a home meant the loss of all three of those things.
Now that I have had to accept the thing I was dreading the most, it doesn't seem so bad. After a while, you figure out how to work with this new reality and there are hidden gems everywhere. Here's a secret you may not realize: long-term care facilities have good desserts! Mine does, anyway. I love that and most visitors want to bring me something fun to eat. That's great!
Now, I have all the time in the world to lay in bed and ponder the great mysteries of life, like why am I always missing one sock? I also have way too much time to stick my nose in other people’s business. I truly want my website to be a resource for people and a place to find little nuggets of truth about important topics. Like how I could help other people who are going through similar transitions in their life.
I was very well-equipped to deal with living alone. The only person I was endangering was myself and I was more than willing to take that risk. What I did not think of was how selfish I was being. At that point, I still felt like I had enough agency to make my own decisions and my family would just have to trust that I was OK on my own. But was I?
The most difficult aspect of taking yourself out of the game is just that. Being truthful, honest and brave enough with yourself that you can admit that you are not where you once were and it is time to say goodbye. That's what it feels like to you but you are not ’saying goodbye’, you are just playing a different way. Until you step into that new reality, it is unknown and scary. Once you are there, you find ways to navigate through and make it your own.
My choice was relatively simple and self-contained. I had been forced to stop driving when my license was revoked in 2004. That would have been grueling to voluntarily give up my independence while living in Los Angeles. I would have had to weigh my abilities against the safety of myself and others on the road. And yet, I found plenty of ways to get around just fine without the ability to drive.
When I was living in my ohana on Maui, my mother helped me pick out heating devices with safety features to prevent accidents— Wait a minute, I just realized I am writing this essay to convince someone else to do something I never did myself. I only stopped driving or living by myself when I had to. Do I really think someone will read this and exclaim Yes! You have opened my eyes and I see now how I have been rationalizing my way into a bad situation.
Probably not, but I beg you to think of your loved ones and how they are worrying about you. Keep ’Safety First’ as your motto always. As excruciating as it will be to stop before an accident, think how much time, effort and money you are saving. As horrible as it will feel in the beginning, if you listen really closely, you will be able to hear the collective sigh of relief the rest of your family lets out as you decide to be the wiser person.
None of this is easy or fun, but that's why getting old his reserved for people who have some experience in life. Of course, becoming disabled can happen anytime, anywhere–that's the fun of it! (insert sarcastic, rueful chuckle) The best you can do is smile through gritted teeth and keep telling yourself, ’this is all for my own good.’ Maybe someday you will even believe it.
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