The Missing Wallet

My wife was diagnosed with Alzheimer’s disease 5 years ago. The progression has been quite slow, and she is still capable of doing many things – she likes to read, set the table, watch nature shows on TV with me and attend social gatherings where she ‘makes the rounds’ talking to people quite appropriately.

I have been sleeping in the guestroom for a couple of years because Jane goes to bed at 9 and I stay up until after midnight. This is my time to listen to music, write in my journal or just ‘be’. Before I get into bed, I put my wallet and car keys on the top of the dresser. In the morning, I put everything back in my pockets and make the bed as best I can before starting my day.

Lately Jane has been preparing the guest room for guests – friends who are not really coming. She straightens the bed, dusts the dresser, and tidies things up, as she has always done. The difference is that there are no friends who are coming to stay with us.

Initially I corrected her each time she did this. I would say, “We don’t have any friends coming, dear. You don’t need to do this.” All this did was get her upset and angry at me, which made me upset at her! After she did this many times, I gave up and let her go ahead and clean the guestroom. It wasn’t hurting anyone and she seemed to enjoy it.

But the last time she did this, she took my wallet off of the dresser in the guest room. I couldn’t find my wallet anywhere! It was nowhere to be found. I asked her what she did with it and of course, she didn’t remember. I searched for my wallet for 2 days, panicking more and more each day because my wallet had my driver’s license, insurance cards and credit cards in it.

On the 3rd day, I found it! It was wrapped in Jane’s scarf that was lying on her dresser. Phew, what a relief! What possessed me to look under her scarf? Why didn’t I look there before? I will never know. But as I thought about it, I think Jane wrapped it in the scarf to keep it safe. After finding it, I said to Jane “Look, Jane, I found my wallet. Do you remember putting it here?” And once again, she denied that she put it there. Lessons learned: Don’t leave my things lying around. Don’t expect Jane to remember. After all, she has Alzheimer’s disease.

– Anonymous

Moving Sharon – Part I

By Jon Lucas

As 2012 was coming to an end, so was my stamina. At this point I had been Sharon’s 24/7 caregiver for over 2 years. And things were just getting worse. I was burning out. I could feel it. I was starting to dread the start of every day. Signs of depression were beginning to show in me. Fortunately, I recognized it.

One day in January, 2013 I went out to lunch with Mandy while a caregiver was with Sharon at home. During our conversation over lunch, Mandy told me she missed me. This struck a chord in me. It made me realize that Mandy and Laura really didn’t have access to me anymore. Not only did they no longer have a mother to share their lives, they really didn’t have me around either. I just hadn’t realized it.

There was a convergence of several factors that January that drove me to the hardest decision of my life. I had made a lot of difficult decisions in my life but none of them came close to this one. I was becoming depressed. I was burning out. I was already making plans to put Sharon in a facility for a couple of weeks in March. I was sleep deprived. I was tired of being the poop coach and of cleaning up her bodily messes. Moments of any joy were fleeting. On January 27, 2013, after days of agonizing over the idea of it, I made the decision. I was going to place her in a dementia care facility permanently.

Fortunately, I had already done my homework regarding evaluating dementia care facilities ahead of time. This is something I can’t stress enough to other caregivers/decision makers: Go check out facilities before you need to, even if you think you will never place your loved one. When the time finally comes that you need to place the person, that is not the time to start looking. I had two friends in my support group that had to place their wives in facilities on an emergency basis. Both had to make spur of the moment choices without having had the chance to shop around.

The first thing I did was call family members to tell them: our daughters, Sharon’s sisters and parents. Each and every one of them supported my decision. That was a huge relief for me. I had seen situations where not everyone was on board with the decision, usually family members that had not been exposed to the daily tortures of the disease; and those were unpleasant situations for those decision-making caregivers.

January 27 was a Sunday and the staff in charge of placement for dementia care residences were not available on Sundays. Monday morning I called my first choice of facilities, Cedar Creek in Los Gatos, California. They had openings and they could send out someone the next day to evaluate Sharon to make sure she was a fit for their community. Tuesday morning the director of the facility came to our house and chatted with Sharon and me for a while. Sharon had no clue what was going on and I wasn’t about to tell her. By this time, she wasn’t really sure who I was, she didn’t know any of her family or that she even had a family. She thought “home” was some place other than the place that was our real home for over 20 years. Telling her I was moving her out wouldn’t have done her any good and she would have forgotten I told her a few minutes later anyway.

Continue to Part II of Jon’s story. 

Moving Sharon – Part II

By Jon Lucas

After the director finished her evaluation I followed her out to her car without Sharon, and asked her what she thought. She said Sharon would fit in fine at their care facility and she asked me when I would like to move her in. I said, “How about tomorrow?” She told me that was fine. We arranged for me to drop off Sharon the next morning at 10 am.

Wow, this was really happening! I spent the remainder of the day sneaking around behind Sharon’s back, packing up the suggested supplies and clothing for her without her seeing me doing it. I also began figuring out my plan for the next morning. One of the things I was dreading was removing her diamond engagement ring and her wedding band. These needed to come off before moving her into Cedar Creek for obvious reasons. Not only was it going to be strangely symbolic, but I knew from past experiences that they didn’t come off easily.

On Wednesday morning I started the day by getting Sharon showered and into clean clothes. She was a total bitch to me during the process which reinforced to me that I was doing the right thing. I prepared her breakfast and got her to eat it. At that point I had some time to kill before taking her to Cedar Creek. I invited her to join me on the couch and I played a concert DVD of her favorite artist, Jason Mraz, on the television. We watched the entire DVD for about an hour. One of his most popular songs is called Lucky and it had been a favorite of hers. The song is about being in love with your best friend. The lyrics include the refrain:

I’m lucky I’m in love with my best friend
Lucky to have been where I have been
Lucky to be coming home again.

Sharon started crying during this song as we sat together on the couch holding hands. I wept with her. I don’t know if she sensed something was happening or if the song lyrics just made her cry. What irony in that final line!

After the DVD ended, about 20 minutes were left before I would load her into the car. So I walked her around the house, showing her the collections of her once favorite things that she had in display cases. I got a few of them out and let her hold them. We talked about how cute or how pretty they were. Then, as time to leave was drawing near, I took her upstairs to coach her through one final bathroom session. As I was helping her wash her hands I soaped up her ring finger real good and told her I was going to remove her rings so I could get them cleaned up for her. But they were stuck on that finger behind her first knuckle real well!

“Ouch! You are hurting me!” she said.

“I’m sorry. I just need to give them a quick pull to get them off,” I hoped out loud.

“No! It hurts! Stop it!” she screamed. Now she was starting to cry. I was determined to get them off. I gave them another good tug while twisting them and they cleared the knuckle. She was very upset. My loving morning with her ended with me stripping off her wedding rings, hurting her and making her cry. The symbolism struck me again and I felt awful. But the deed was done. Minutes later she had forgotten the entire incident and was a happy girl again. Now it was time.

Continue to Part III of Jon’s story.

Moving Sharon – Part III

By Jon Lucas

“I need to run an errand and would like you to come along with me, okay?” I asked.

“Okay. Where are we going?”

“I just need to drop some papers off someplace.” Not a total lie.

“Okay.”

So I helped her into the car in which I had already preloaded her clothes and supplies in the trunk and drove her to Cedar Creek 15 minutes away from our house.

As I pulled into the parking lot she said, “Where are we? Is there something wrong with me?” I have no idea where that came from. There is not much in the parking lot to suggest what the place is and their signage is almost unnoticeable. She might have seen it.

“No, I just need to drop off some papers here. Come on in with me.”

I grabbed a folder of papers from the backseat and escorted her through the front gate into a lovely courtyard filled with flowering plant and shade trees. Then I took her through the entrance door to the building’s lobby at 10AM, our scheduled arrival time.

They were ready for her. Several cheery staff members greeted her by name with big smiles on their faces. One of them took her by the hand and started to lead her off to their activity room. Sharon turned around to look at me for some reassurance.

“It’s okay. Go with them and I will join you in a few minutes,” I lied. I watched the staff lead her down the hallway to the activity room. When I was younger I had to take my dog in to have it euthanized. Back then, you didn’t go in with your dog to comfort it while it was being put down. You just handed it over to the vet and they led it down a hallway with its tail wagging. I never forgot that awful feeling of sending an innocent happy animal off to die. This felt oddly similar and the scene still haunts me.

Once she was out of sight, I went back out to the car to get her belongings. I spent the next hour behind a closed door, signing papers to place my wife, my high school sweetheart and my soul mate in a dementia care facility where most of the other residents were 20 to 30 years older than her. Then it was time for me to leave. As I walked out I glanced back down the hall and saw her engaged in some exercise activity which involved waving a pool noodle around in the air.

I walked out the front gate to the parking lot. As the gate swung shut a wave of emotion came over me like I had never experienced in my life! So many emotions hit me all at once with a tremendous intensity: sadness, guilt, joy, grief and a sense of FREEDOM. All of a sudden, all that weight that I had unknowingly been carrying around with me for the last 3 years was lifted. I felt lighter than air. Then it hit me: I was alone. Absolutely and completely alone. I was alone, but I was also free to do whatever I wanted for the first time in 3 years.