Wednesday, January 26, 2011

Sharing News.

I have only one parent left, and no grandparents. Obviously, that one parent is no longer with me mentally. When something big or exciting or hard happens in my life, I no longer have a parent to share it with, although I have a few wonderful friends who are always happy to share with me. It does, however, make me sad not to have a parent to share these moments with. The first time I was married, my mother was already gone, but my Father was still in his right mind, and even agreed to wear a tuxedo, in which he looked great, as all men do. He was intensely interested in certain aspects of the event, and was definitely happy for me.
I recently became engaged to my boyfriend, an incredibly special man. I'm very excited about it and immediately wished my mother was still alive so I could tell her. I then thought of telling my Father, and whether he would even understand. But in the end, I decided I needed to tell him, knowing, of course, that it was very unlikely that he would comprehend. My boyfriend, who has met my Dad, told me that he considered visiting my Dad and asking him to marry me, but decided in the end not to do it. It would have been a sweet gesture, and was a nice thought.
I took Dad to the doctor the other day, and as we were sitting in the exam room, I decided just to tell him, so I did. In the simplest terms, I told him I had a wonderful boyfriend and that he had recently proposed, and that we would be getting married. I told Dad how very happy I was. He listened to me, watching my face, and when I was done, he nodded and said something about how nice that was. I don't really think he knew what he was saying, or whether he was responding to my happy face and voice. I'm glad I told him and had a little moment with him, but I still feel a little sad that he won't really know what I was talking about or what's going on with me.

Sunday, January 23, 2011


Without question, one of the very hardest things about this entire journey has been having to make decisions FOR someone else. I know that most, if not all, of you, know what I'm talking about. I never wanted to be responsible for another whole body not my own. I hardly want to make medical decisions for myself, let alone someone else.
One of the most agonizing things has always been this responsibility for someone else's welfare, not unlike child-rearing, I suppose. Having to make business decisions is quite hard enough. Did I make the right investment? Have I saved enough money or moved it into the right place? Did I sell the house at the right time, or should I have held on to it? It's not easy. But trying to decide what meds to give my Dad, what surgeries he should have, or not. Just, what is best for his well-being. Even though it's not always at the front of my mind, at the moment, it always seems to be at the back of it.
I don't know if I'm making the right choices for my Dad, I suspect I never will. What makes it more difficult is the knowledge that almost certainly, if he was in his right mind, he would be refusing all of these treatments and prescriptions and surgeries. He's a Christian Scientist, so all things medical have always been anathema to him. He would never admit to pain or illness, would never choose the things I'm choosing for him. Until now, in his adult life, he'd been lucky enough to enjoy great health- to never have to make these choices for himself. Unfortunately, that luck seems to have run out. His health is getting poorer and poorer, and the tough decisions just keep coming.
And I suspect that this will eternally be one of the hardest things I'll ever do.

Friday, January 21, 2011

Immune System

I can only guess that Dad's immune system is breaking down or is compromised now. I don't know if this is a result of the dementia, I'm afraid I don't know much about the more mundane physical effects of Parkinson's/Lewy-Body. Something is inhibiting Dad's immune system from fighting off things like infections and viruses, hence the boils and the gastro-virus. And now we've got this hernia surgery coming up.
After seeing how much the boil surgery took out of him, I'm a little concerned about what the hernia surgery will do. I believe it's an out-patient procedure, so hopefully, he won't have to spend time in the hospital. But all surgeries bring pain and discomfort and possible infection. With his immune system apparently compromised, will he be able to deal with those things as well as he used to be able to?
It's all terribly ironic anyway, since my father was a devout Christian Scientist for years! Were he in his right mind, having all this happening to him, it is almost certain that he would refuse to have any sort of treatment at all. This leads to a whole new set of troubles for me... TBC

Tuesday, January 18, 2011

New Illness

Sorry to all my readers, I've been out of town. Unfortunately, just like last time I was out of town, my Dad had another illness;thankfully one that was not too serious. He has some sort of gastro virus and sounds uncomfortable, but not like last time. I feel fear, though, every time I see the phone number of his caregiver pop up on my phone. Especially while I'm on vacation!
And I feel more and more fear each time Dad is ill, which has happened with disturbing regularity lately. The man who never had a cold seems always to be ill now. It makes me sad.

Saturday, January 8, 2011

Living Wills 2

Families so often chose to keep their loved one alive longer simply for themselves, which I found so hard. Many chose according to their religious or moral beliefs, which I can respect, even though I disagreed with them. What struck me, however, was how often the patient hadn't expressed to their family what their wishes would be, not even verbally, let alone by writing them down. The end result of that was that family members are put in a terrible position, forced to make horrible choices they would never have chosen to make.
It's such a mistake, and I see it often. We fear death in our culture, or find it too uncomfortable or impolite to talk about. But it's so very important to share with others what we want done if we're no longer in a position to decide it ourselves. I counsel everyone who comes to me for advice about a family member with dementia or illness to make sure you find out what they want, and better yet, have them write it down.
We don't want to think it will happen to us, so we don't decide what we want and we don't talk about it. I have a living will expressing very clearly that I want as many measures to be taken as possible at first, but if it looks like there's no way I'm coming back, then give my organs to someone who can use them!

Another aspect of the program was simple information on what it means to have the kind of technology we now have and the fact that we have machines that will essentially live our bodies for us. Your family member could potentially live forever, hooked up to machines, and is that what you really want! At what point do we decide to let nature take it's course?
We're living longer than we ever have in the past, and medical science continues to advance. I strongly believe it is worthwhile to take some time out to reflect on that, and then decide what you would like to happen to your body in the worst case scenario. And after you have done THAT, please tell it to someone you trust and write it down for the world to see. Because if you don't, you may be leaving your loved ones to make horrible, impossible choices on your behalf-choices you may never have wanted.

Tuesday, January 4, 2011

Living Wills.

I was watching a Frontline special on ICU's, and people becoming ill or injured, to the point where their loved ones have to decide what type of care they need and how much. It featured a couple of families of different types, all with ill family members who were either not able to decide about their care, or needed assistance to decide.

For years now, ever since we had to slog our way through our father's completely disorganized affairs and decide what kind of decisions and care he would want, I've been campaigning to everyone I meet practically, to talk to loved ones now! Find out what type of arrangements they want. Find out whether they want to be kept alive by machines far after the natural ability of their body to live. Families don't talk about this, and then the worst happens and you're left trying to decide what would be best for someone not yourself. And let me tell you, that kind of decision is incredibly hard.

During the special, a group of sisters was forced to decide whether to remove their mother, who suffered from dementia, from a breathing machine. As often happens in end stage dementia, their mother had essentially forgotten how to swallow, and aspirated on her own fluid. They had to decide whether to remove her from the machine knowing that chances were good it would happen again and they would be faced with the same decision.

I found myself yelling at the television at these poor families, disliking the choices some of they were making for their family members. TBC