WALLY IN NURSING HOME

Wally was declared an emergency last week and moved by ambulance to a long-term care facility -- Extendicare Oshawa -- where he will receive 24/7 nursing care. His weight has dropped to 101 lbs. The care he was receiving at the assisted living home was not adequate for his needs. His teeth have fallen out so he needs a special diet, and the state of his tailbone ulcer has reached such severity that he requires specialized wound care and constant rotating in bed to keep weight off the wound.
     However, he almost gave a nurse a heart attack yesterday when on his own he got out of bed and hobbled over to the "parking spot on the wall" where his walker and wheelchair were placed. His undaunting spirit carries on.
     Our daughter Trish helped me to tell him on Friday because he has feared moving to a nursing home and she worked out with him what to pack. While I had to go ahead and sign the papers, she waited with him for the ambulance. She said he waved good-bye to all his friends and staff at Kingsway as the paramedics wheeled him out on the stretcher.
     Trish and I are relieved because we are impressed with the specialized care provided at Extendicare Oshawa. He's also under the care of a doctor assigned to his case so his meds and wound care can be adjusted immediately if required.
     For me, the last two months have been a nightmare of constant worry and advocating for corrective care on his part. Our family doctor, who saw Wally's backside "wound", and Durham's Community Access Care forced the health ministry to move him ahead on the waiting list. We have been very fortunate to have such a caring family doctor, Dr. Stacey Ross, as well as determined neurologist, Dr. John Adams, of the Canada's highly respected movement disorder clinic in Stouffville, Ontario.
     On Saturday morning, I awoke so stiff I could barely walk and then I found it difficult to stay awake. My next-door neighbor drove me to Oshawa so I could visit with Wally for a few hours in the afternoon, and I promised to have dinner with him today. It will take him about a week to adjust to his new environment and for Extendicare to get his schedules and services working. He will receive special massage therapy together with personalized activities assigned along with his diet and wound care.
     It will be some time before I go back to journaling about Wally's battle with Parkinson's on this blog or leading my Facebook group forward. I am exhausted from worry, lack of sleep and advocate intervention. Now that I can let go, my body is letting me know just how tired it really is. It's unfortunately true: In our health system, if you're asleep at the wheel, nothing gets done.
     Thank you all for your loving support and prayers,
     Bonnie

EGO AND ID

One morning when you wake up and look at your partner, you finally realize the person sleeping beside you is not the person you married. What you took for granted no longer exists. Our family doctor explained it to me this way. The ID has gone. Only the EGO remains.

Yes, it is part of Parkinson's dementia. While Wally can still calculate a mortgage in his head, he seems to have lost his empathy. An example comes to mind.

When we were checking out nursing homes in preparation for his inevitable incapacity, we were touring the lounge and a couple were playing cards in a corner of the room. Wally immediately brightened and ambled over to watch. As he watched he could see the woman could make better plays and he wanted to interfere "to teach" her. What he missed was that the woman was clearly an Alzheimer's patient. Her husband had elected to move into the nursing home with her, and this was just a social activity they could share. It didn't matter who won or lost, but Wally, obsessed with winning, couldn't stay quiet. He felt compelled to tell her what would be a better play. The woman became agitated and I could see the husband growing angrier with Wally for his interference. I jabbed him in the elbow and tried to steer him away from the couple and the table, but he refused to move. I thanked the man for letting us visit, and stood in front of Wally like a windstorm so he couldn't push the walker forward more toward them.

"The floor nurse would like us to visit the dining room before we leave," I told him to distract him.

"She can wait."

"Maybe she can, but we can't. We have to be back home in time for your four o'clock pills."

I never know when he's going to become stubborn and difficult, but this time he reluctantly turned around. Once we were in the hallway and out of earshot, I explained to him about the woman's condition and why her husband was annoyed with Wally's interference.

"But I just wanted to show them some simple moves they can play."

He couldn't see that what he wanted to do wasn't the right thing to do under the circumstances. The checks and balances that the ID provides no longer work. Only the EGO functions. We've all had to learn how to negotiate with him differently as a result.

Sometimes I feel as if I am talking to a three-year-old who doesn't understand the consequences of his actions. He lives in the moment. For example, carrying toothpicks in his hands when he is walking is an issue. He doesn't understand that, if he falls, this small object can become a sharp weapon. I have to say, "Give me the toothpicks to carry for you and you can have them back when you are seated at the table."

If I just command him to give me the toothpicks, he resists and grabs the toothpicks with fingers that become as rigid as steel. Often I can't open his hand, so rather than struggle with him, I've had to learn not to think of him as an adult but to treat him with the same reasoning I would use with a child in that moment.

Michael Fox is right. In circumstances like these, the caregiver has to be fluid, not rigid, or you are faced with a no-win power play.