Welcome to my world

Since I got up this morning, I have told husband about Kristen's meeting at 10 AM 5 times. This is maddening and sad, all at the same time.

How can I explain it? Ever see a 2-4 yr old ask his or her mommy the same question over and over? Only to have them then ask, "why?" when you answer? This is my day, all day, every day.

Since yesterday, I have questioned myself. Can I do this? Am I really that strong? What will I be like when this is all over? I have had the shakes lately. It's because of this sudden turn yesterday. Husband has slipped. We are now off to that place I don't like to visit. Welcome to my world. I get to travel alot. One minute, I'm in the here and now, the next, we go to that dark place. Jack told me yesterday, "I don't even like talking to him anymore, mom." I can't blame him, yet, when I look at husband, seeing the vacant stare, the fear in his eyes, I am so torn. Between my husband and child. How can you choose? My husband has no future. My child has a future. I wish I were two people. Then, I could nuture both of them. This is one of those days when I question myself.

Frustrated with Dr A. He is insisting on keeping husband on the Aricept. I don't agree, it is doing no good. Dr Q said it would do no good, as his disease is rapidly destroying everything in his brain. For some people, it is effective. Aricept slows the process of destruction. However, in husband's case, it won't. His form of Frontal Lobe Dementia is an inherited form and does it's job, fast and furious. I am thinking of just not giving it to him. Scared about just stopping it, scared about continuing on it.

Dr A did however, agree to stop the Baclofen. It too is doing no good. He did listen to me when I said husband needed a Mood Stabilizer. I pick that up today. Will see how that works. I did not tell husband it was a Mood Stabilizer. Told him it was a stronger drug than the Baclofen, that it would help with the legs. It's so easy to "lie" to him now. He will not know the difference. In fact, I know just what he'll say. "You know, that new medicine is really helping me walk". "Yep", I'll say.

Since husband was enrolled in Medicare, I made an appointment for him to be seen, once again, by Dr Q. Dr Q went to another medical practice, but, with the Medicare, we can now go anywhere. Dr Q listens to me, knows I 've done my research. Don't get me wrong, I really like Dr A, he just doesn't know me well enough to know I fight for husband and his care. I do not take no for an answer. I insisted they test husband for specifics at the beginning of this journey. Dr Q listened to me. He saw in me what the other Dr's didn't. And look where we ended up? The diagnosis that proved me right. Not saying I'm so this and so that, no. Just saying that you cannot live with someone and NOT know something is wrong. Very wrong. So, I started my research, watching for signs and symptoms. They came on gradually, ever so slightly. One day, I would question my sanity, thinking I was wrong, the next day, something crazy would happen with husband, and I would be looking that up. Bam, there it would be, staring back at me. Those were very dark days for me. Dark.

The New Mexico State Fair starts today. We will not be going. Husband cannot walk but a few feet without stumbling. Those days are gone. Not that I just love the fair, I don't, but husband does. I told him we cannot go, he looked like a little child, said, "OK", sighed and shuffled away.

My heart hurts today. It hurts for all that we had and all that we lost. No, it's not fair. No, it's not right. But it's all I got left.