Between Yesterday And Tomorrow

My beautiful wife of 25 years, Kay, was diagnosed with Parkinson’s Disease in May, 2006. She was 52 years old at the time but she’d had symptoms for about 2 years before we got the diagnosis. The medication that was prescribed did improve her physical issues but I couldn’t help but notice that there were other concerns that were not improving….in fact, they were getting worse. She was having terrible nightmares with blood curdling screaming and kicking, she was calling our children by her siblings names, routine instructions were confusing to her and her vision was a constant problem…double vision, problems with depth perception and terrible night vision.

In May, 2008, after an exhaustive series of tests we learned that Kay had LBD. I’ll never forget the words told to me by the nurse practitioner when she was giving me the necessary counseling as to how I must proceed. She said, “Cleve, your wife is far more disabled than you know. You need to get your legal and financial affairs in order. You no longer have a partner, you have someone that you have to take care of.” Those words were like a punch in the stomach only so much worse! At the time I didn’t fully appreciate what she was telling me.

until about September, 2009 when she began to notice that she had startedKay declined rapidly from May, 2008 until June 1, 2009. On that day she started Namenda in addition to her other medications. I don’t know if it was the combination of medications or the Namenda alone but from that day she began to improve….not just a little but miraculously. She was alive again! Able to engage in meaningful conversation, plan and cook meals and function at a near “normal” state. These wonderful results were unblemished until about September, 2009 when she began seeing halucinations again. Since that time she’s experienced a gradual decline in both cognition and in her physical capabilities.

The biggest downside to this miraculous short term recovery is that Kay is now self-aware….she sees the decline and it terrifies her. Before Namenda she was rapidly declining but she didn’t know it so she was reasonably blissful. But now she’s tearful almost at any moment. we’ve talked about learning to accept this problem even though we didn’t want it or ask for it but she’s not ready to accept it yet. She is still in the anger, grief and denial phases. It’s hard on me because I feel like I have to accommodate her illness to the best of my ability and have to placate her because of her emotional fragility. I find that I’m “walking on egg shells” all the time trying not to cause her to feel hurt or sad. She wants to be engaged in life in a meaningful way but the ordinary things from our life pre-LBD are beyond her now…cooking, cleaning and taking walks by herself.

Recently I’ve floated the idea to her of “volunteering” at the Alzheimer’s daycare facility. There she could be engaged in some modest, yet meaningful activity assisting others who are futher affected by dementia than she presently is. She seemed to like the idea so I think I’ll follow up on it with the people in charge of the center.

Yesterday we were a relatively young couple with wonderful plans for our future and for our children’s future. Tomorrow Kay may not know who I am, who our kids are or who she is. But today she knows too much about her problems and it causes her great distress. In some ways tomorrow does’n’t sound too bad because maybe, once her memory is gone, she can find peace and happiness again.