Tuesday, 3 May 2016

From Person To Patient

There are times, with this disease, where I want to just scream, times when I want to just yell and stamp my feet in a child's temper tantrum. But I can't, not least because my legs no longer move. In reality those times of temper are often tempered by the realization that getting mad, shouting, crying, screaming, and whatever else I might do will help nothing, change nothing. It's simply an expulsion of precious energy for little or no good return, not even catharsis.

Last night, as I made my way to bed, I had one of those moments, a slice of time where I was plain and simply angry about my situation. Internally I demanded answers to stupid questions. "Why me? What did I ever do to deserve this? What did I do that was so wrong for God to punish me this way?" Of course I lack the energy to scream these pronouncements out loud, and the rending of cloth is far beyond my level of strength.

It's hard not to have these times with this disease, these moments when I am overwhelmed by what is gone from my life, what I have lost, that which I can no longer do. It's not hard at all, to roll into a self-pity party and let it wash over me like ocean waves. All I have to do is think about where I was a few years ago, and where I am now.

Usually these moments are triggered by an event. Yesterday it was a visit with the Home Care Nurse, and two discussions. The first was what I would do when Katherine goes out of town later this month on her visit to Hong Kong. Ultimately we decided I needed more home care, and arranged for someone to come in, make sure I was up, and make me some breakfast on those weekdays when I don't have exercises. So while Katherine is travelling, I will have a Home Care Aide in on Tuesday and Thursday mornings.

The other discussion was somewhat more challenging. We discussed the possibilities of me entering a long term care facility, or perhaps an assisted living facility. Lots of other people think this is a good idea; not me. While the option of going into a facility would likely be financially better for me, I would lose so much of what I love about my life. No parties, no winemaking, far less social life. I would move from being a person to a patient.

I'm told that there might be ways to make an assisted living facility work for me. I hate the idea; I want to die here in my apartment, here at home. The assisted living facility might actually improve my quality of life, but it would destroy my will to live. On the other hand, I would be a fool if I didn't investigate, if I didn't get all the information. Who knows? I might be wrong. But I don't like the idea. It's just another thing this disease will steal from me, my independent living.


  1. My dear one you are right much has been stolen from you. Too bad I am so old and really useless, unable to help. I feel guilty about not being able to help you.I love you so much but words just do not help.

    1. Mom, you have nothing to feel guilty about. You gave me life, supported me all the way, and now are here every day to talk to me. That's as good as it gets. You help me a great deal. I love you.

    2. Hi Richard, Thank you for sharing this. I am glad I found you. My sister has als & ms. She feels the same way as you. She wants to die at home. I think its a good thing. But know this:If you choose to die at home, I beg you to please consider your caregivers. Please remember that they love you & want to help you. If they tell you it's time for 24/7 care, please, please do so. Don't be miserly with what money you have. My sister has deep psychological issues which she kept to herself-she & my 82 yr old mom don't want to pay help.As a result, it's a critical situation. While you may feel you are a victim, the rest of your people feel the same but just a bit differently. I spend many days crying, heartbroken b/c we don't have what we used to. I am reduced to servitude & no regard for me at all. I wonder why I keep going back for more. Don't do this to your family. I guess you wouldn't though, based on your writing. You are a caring person. I wish you the best, whatever you decide that is. I support you. I wish I could do more for you but right now I am in my own hell with no way out until the end. Keep doing what you can. You matter to the people in your life, more than you may realize.

  2. You know what I am going to say; absolutely not. and should not even be a topic at hand. Your column yesterday about getting on the porch was the best. Because you were adding to what you had subtracted. Consider yourself an exception and keep doing what you're doing which is living in the here and now and going forward. Enjoy your porch, grilled salmon, and wine. And fresh air. And don't let eerie thoughts get in your head because you're nervous about Katherine being out for a while.

  3. Always remember to focus on the things you do have and the things that make you happy. Like me, you have an incredibly gifted mind and heart. Contary to popular belief there are plenty of people who don't have control over their eyes, body, or mind that still live very independent and fufilling lives. Always remember to never give up and never let a condition dictate your life.