Jim rode last week from our home in Virginia to visit his family in Connecticut. He was excited (when he remembered he was going) and went willingly. My parents were already heading to Boston to take in some Red Sox games, so they offered to drop him off on the way and then pick him up on the way back. This gave me a week “off” and since Frances was heading to camp, it would also give me some one on one time with Brad. I envisioned getting the house clean, taking him to movies and the beach and being able to relax together.
Then a very dear friend (since 4th grade) asked if she could come visit. Perfect! Then another very dear friend won VIP tickets to a concert in Vegas and asked if I would like to be her date! I discussed this opportunity with some local friends who agreed to watch Brad and started making plans. I would get to do what everyone has been telling me over and over to do: take care of myself. I would see some old friends who refresh my spirit, I would get to bond with my son and I would even have some time for reading a good book and getting caught up on house stuff. Oh how life teases us.
This is where you insert a record playing in the background screeching to an ear splitting halt.
Jim had difficulty on the way while riding in the car at one point getting aggressive with my parents. Then he had several severe psychotic breaks during his first full day away, culminating with police, an ambulance ride to the ER and now a stay in a locked psychiatric unit. In Connecticut. While I am in Virginia. And he is confused. And scared. And alone. And a lost soul. I can only understand about every 3 words he says on the phone. He has had a couple of episodes since he was admitted but over all I believe he is doing much better.
How awful this disease can be. If there is anyone in this world who is NOT mean, angry or violent, it is Jim. Sometimes during the course of our marriage I have been miffed at him for his lack of aggressiveness. In a world around us urging us to show more and more belligerence he has been steadfast with his passiveness. Jim’s soul is as sweet and demur as it gets, yet he has now attacked others, become violent, paranoid, angry, torn a turn signal off a steering shaft and is now saddled with a “one on one” (a person who stays with him 24/7 to ensure he doesn’t hurt anyone). He hallucinated and said things completely untrue. He is another being in the body of the man I have known more than any other for the past 19 years. I am heartbroken just picturing him there, while I am here. Carrying on. Doing mundane things. Living life.
Dinner needs to be fixed. Jim is in the hospital. Laundry needs to be put away. Jim is in the hospital. Brad has track practice. Jim is alone and scared. The dog needs to be fed and walked. Jim needs help. Throughout my entire day, I am in a constant state of back and forth, reminding me my life may seem quiet and simple on the surface as I move from task to task, but the reality is Jim needs me. He is alone and scared and needs me to find an answer. An answer that eludes me no matter how many phone calls I make or how many conversations I have. The task at hand permeates into every cell of my being and each cell chooses to fight back; either struggling to believe there is help and an answer if I can only find it or shutting down and withdrawing. I am not sure yet which cells will win. There is a civil war currently taking place within me.
Now I sit making phone calls. Trying to find a place for him. There isn’t one. I can’t afford to place him in a memory care unit. Do I bring him back to our home? And risk a recurrence in front of the kids? I question each decision I am trying to make. Do I try to bring him home and let him get acclimated and see if he settles down? For how long will this last? If he gets out of control again, then what? I will say, “I should have known.” How would I live with myself if someone else got hurt or he got hurt? Yet, if he remains his usual self, I have taken him out of his home for no reason. I didn’t try hard enough. I didn’t make the right decision. I didn’t do the right thing.
What is the right thing when there are no guarantees or crystal balls? What is the right thing when you know the eventual answer, just not the timing?
My heart and my whole body are heavy. Thinking right now at all is a burden. I am so tired mentally. I constantly feel as if I could lay down and slide into a deep sleep. I have a streaming thought non-stop: Jim is in the hospital, Jim is in the hospital, Jim needs help, Jim is in the hospital, I have to figure out what to do. It doesn’t pause. I go about life with Brad as best I can, but I have that ticker tape on repeat in my mind.There is no simple answer for getting him home. We can’t fly him back. The doctor is strongly against us driving him back. (But that is, at this point, our only choice) Insurance will not cover a medical transport. What are our options? When I do eventually return him to Virginia, I have no place to put him. I am still searching. Of course the first question asked when I inquire about assisted living is how I am going to pay. Then if I have qualified for Medicaid. (I haven’t applied yet, that is obviously on my to-do list) $6,000 a month for private pay until we get approved. Or I can take my chances and have him home with me and the kids. I can try to get in-home care, which I will again have to try to figure out how to cover. And still worry about the recurrence of his agitation.
There is no specific answer for our situation. I know others have gone through this, but unlike most medical situations, almost every single turn with Alzheimer’s Disease is arduous, overwhelming and with no specific plan. We are all on our own. There is no place to turn to for help. No one that will call around to find a bed for him. No one to help with the Medicaid paperwork. No one to tell me exactly what we should do at this very moment. He is to be released to my care and I am to bring him home, to wait to find out if the other shoe will fall. To possibly become an instantaneous news reel about the pitfalls of our system. To be spoken of in what if’s and should have’s. If he wasn’t diagnosed with Younger Onset Alzheimer’s Disease and he became violent like this, would I get help? What happens when someone shouldn’t be around their children for safety reasons? Is the only option jail?
Fortunately for me, I do have a wonderful support group of friends and now readers of this blog. I have people who may not be able to make decisions for me, but they let me know I am not alone. I have help with the kids, I have shoulders to cry on and people who would literally drop everything to help us. How lucky am I? I am so burdened with my responsibility yet I am touched and humbled and amazed at the outpouring of love for our family. It is a feeling of unbelievable gratitude and disbelief. Thank you one and all, from the very depths of my love and sincerity.
In the meantime, Jim sits, alone, passing his time coloring and staring into space. Wondering where he is and where his family is.