Diapers to Diapers

Way back in 1997, I was having lunch with a my girlfriend Chris when her five year old son William ran out of the bathroom at McDonalds with his pants around his ankles. At the top of his lungs he was screaming, “Mommy, wipe me.”

Chris was mortified; I was laughing. I soon got her laughing as I reminded her she would be exacting her revenge when she was in her senior years and William was caring for her. Only, she would be running from the ladies room at the Tampa Performing Arts Center, not McDonalds.

And so it is, the children care for the aging parents.

My mom, Thelma, was an active and vigorous woman who bowled, gardened, volunteered with the local rescue squad, and raised six children. She was widowed in her early 50’s and soon after, sold the family home and moved to St. Petersburg, Florida with a life-long friend. Mom continued to be active at her condo association by participating with the gardening committee. She made friends with many of the widows at the condo center and they spent time playing cards and taking day trips as well as European vacations.

In 2000, Mom met a lovely gentleman named Phil and they married in 2001. We had noticed mom’s forgetfulness and Phil covered for her on most occasions. There was a niggling suspicion she may have dementia or Alzheimer’s.

Mom had always had a morbid fear of being diagnosed with Alzheimer’s. She never discussed that fear with us, but she was very, very fearful. Phil passed away in January of 2005, and during his decline in health it became very apparent that Mom was most likely suffering from her most feared disease.

My sister Sue lives in Tampa: I had moved from there in 2002. So, Sue undertook the responsibility of an aging parent, as she was the only child in the area to care for mom. Sue maintains care of mom’s estate and all things mom, so the responsibility to help mom with health care, banking and finance settled in her lap.

Sue was off to the doctors to have mom evaluated for Alzheimer’s, and though there is no one determinant, the neurologists identified mom as an Alzheimer’s sufferer. Sue has a busy, crazy schedule every day and now she had to introduce mom to the schedule all the while trying to fit mom’s appointments and care into her already hectic days and nights.

In hindsight, those were the halcyon days of mom’s slow decline into the depths of Alzheimer’s. Mom was very sad living at Sue’s because she was far away from her friends at the condo complex. She missed Phil and she really disliked living in Sue’s big house. She felt as though she was in a hotel most times. No indictment of Sue, it was what it was. Mom hated running with Sue, the around town hither and thither, but it was what it was. Sue was mom’s full time care provider and during that period, mom needed little supervision, but she could not be left on her own. Sue made sure that mom had trips over to see her friends and had lunches out with the girls. Sue also made sure that mom made frequent phone calls t keep in touch.

Sue did manage to have mom participate in a senior center, in a neighboring town, two days a week for several hours. This was a twofold blessing. Mom was able to socialize and participate in group activities and Sue had needed respite from the 24/7 care mom required.

That summer, Sue was headed out of town for two weeks and needed to send mom to Maryland to stay with my baby sister Karen. Karen threw a family party with cousins and nieces and nephews and my dad’s one surviving sister, Aunt Edith so that mom could visit family. It was a wonderful gathering of family with raucous stories of times spent together over the years. Mom was engaged and really enjoyed herself.

As mom’s visit was drawing to a close, she began to ask Karen if she could stay here because family surrounded her. It was not an easy decision, but in the best interest of mom, Karen moved her into her home in Bowie.

Karen works full time so, provisions had to be made for mom. Mom goes to adult day care five days a week and Karen arranges her time to get mom to and from the doctor, dentist, hair stylist and all things necessary for mom’s care.

Mom’s condition continues to decline, medications are changed, but to no avail with the disease that ravages her.

In the beginning mom was participative in conversations over dinner and games of cards. As time has moved on, her ability to follow the fast moving card games we play defeats her. On many occasions, you could see the veil of darkness shadow her face as she tried to piece together the circumstances of the moment. You could tell that she was in an Alzheimer’s synapse; her brow would furrow and her eyes would flit back and forth as she tried to muddle through the fact that dinner was gone and she was now eating desert.

It was apparent that she knew she had missed some time. She was, at those moments, patently aware the she had Alzheimer’s and in some of those short glimpses I could see the dread and fear that she had worried about so many years earlier. It was heartbreaking.

We became the artful dodgers. By that I mean we would suddenly change the conversation to events in our childhood so that she could reminisce and participate in the conversations. Her short-term memory was short-circuiting, so we used long-term memories to keep her engaged.

As the years are passing, so is her connection to the day-to-day realities. She doesn’t know what day it is or what meal she is eating. She has the sleep syndrome that she doesn’t know if it is day or night. She will sleep until 4:pm and eat dinner at 6:pm to turn around at 8:pm and tell you how tired she is and needs to sleep. Maybe the sleep is a good thing. Maybe she has dreams free of her fear and dread of the disease.

She still has her sharp sense of humor and every now and then will let a zinger fly. But they too are few and far between.

In February of 2008, mom suffered a broken hip. We had to place her in a long term care facility to recover from the surgery and to rehab to the point she can move around Karen’s house. We did worry that she would not come home. Fears of pneumonia and staff infections did concern us, but she came through like a trooper.

Her mobility has declined to the point that she cannot walk the grocery store with Karen. A wheelchair helps in those instances. She is withered and stooped; her hair sometimes stands on end. She plays solitaire endlessly and she still reads, in fact she read me an interesting passage from her Reader’s Digest this evening. It breaks my heart.

Mom and I went through a pretty tumultuous time after my father passed away. We didn’t speak for almost three years. Remember the post about no random events? Well, one weekend during that period, Jim came to Maryland to visit me and in that time, mom’s mother had passed away. Mom and I were still incommunicado. Jim had such a wonderful relationship with his mom that he could not conceive that mom and I were not speaking, and I would miss granny’s funeral.

Jim put his foot down and literally dragged me to the funeral parlor. It was in that moment that mom and I spoke for the first time in years. It was a slow heal, but as time passed, we were finally able to resume our relationship.

While mom has been living with Karen, there have been times, much like this evening, when Karen needs a mom-sitter. Originally, mom could come stay at my home, but now, the stairs mom has to climb makes it impossible to stay at my house. So, I come to mom.

On one occasion when mom stayed with me, she had a diaper incident. She needed a shower and so, I hopped in the shower with her to get her ready for dinner out with my friends and me. It was role reversal. I was washing her hair and making devil horns like she used to do to us. I helped her shave her armpits and then I showered myself. I styled her hair and put some makeup on both of us and off we went for a night out. We had a good time. She was engaging, sometimes lost in the moment, but she really had a good time.

The next morning when she awoke, she poked her head out of the guestroom and I could tell that she was disoriented and I felt horrible. The room was partially furnished and I worried that she thought she was in a nursing home; her other fear of many years. I beat myself up that she might have been up all night clutching the covers and worrying that her children had institutionalized her. She did not recognize me and I could see a panic in her eyes. I hated myself at that moment that for not sleeping with her. Alzheimer’s patients become very disoriented when they are out of their normal surroundings, and in an effort to help Karen, I had tossed mom into a situation she never should have been thrust into. I moved her out of her normal surroundings. She was very belligerent that morning, not the belligerence many Alzheimer’s patients suffer. It was more striking out in fear and panic of a room unknown.

In an attempt to calm her, I joked with her and bounced on the bed and told her she had to go back to bed and wake up in a better mood. I let her sleep and several hours later went to wake her in a jocular manner. She woke up and was very aware that it was me in the room and the dark shadows of the earlier event were gone.

We had a good breakfast and I took her home to Karen’s. I filled Karen in on all the events so that should there be any questions from mom, Karen would be aware of my observations. I mentioned to Karen that I’d showered with mom and she had diaper rash. Karen looked at me and said something that shook me to my soul. She said I was a better daughter because I got IN the shower with mom. My response was, “How would you know mom had a good shower if you didn’t?”

No, that doesn’t make a better daughter. It is what I felt the situation demanded. I’d do it again and again. How many times did mom bathe me as a child, wipe my fanny, bandage my cuts, and cool my feverish brow?

Let me stop and say real quick: It was not always butterflies and roses with mom. To understand the full circle of mom, one has to understand Thelma. In some future blog I may share those interesting times and it will seem so incongruent with this post.

I was mom-sitting in the fall for Karen. Mom was in far better shape then she is now. When it was time for bed I helped her up the stairs, made sure she brushed her teeth, donned her PJs and got into bed. When she finished brushing her teeth, she turned to me and called me Karen and said I was a good daughter. The she blanched and said, “You’re not Karen!” I said, “No, mom, I’m not. Do you know my name?” She told me of course so I asked her my name and she answered with the childhood rhyme, “Puddin Tame, ask me again and I’ll tell you the same.”

Two words: pivotal moment.

Mom did not know my name. That didn’t hurt me but damn I was sad. It was another slip down a rung. I started helping her down the hall to her bedroom and she started ticking off our names, Tommy, Donna, Susan, Judi…she turned with a look in her eye that I think was very angry but also very triumphant and shook her finger at me. She said, “I know you, YOU’RE JUDI.” And for one brief moment, the tumultuous past swept between us and was just as quickly gone.

So, here I am mom-sitting again tonight. I brought her flowers from my garden because like me, mom loves to garden. We always had a yard full of flowers. All night she pointed out how beautiful they are and asked were they from my garden. With mom, it is 50 first dates.

When she first moved up here, I would answer her questions with a full protracted story only to have the question asked two minutes later. I eventually moved the answers to brief yeses and nos. She still asks a question time and time again, and I answer every time. Sometimes changing the answer a bit so that she gets a longer answer for the 15 times it is asked. I don’t mind answering her questions. Sometimes it is the full conversation of the night. Question and answer: question and answer. “Yes mom, that is a beautiful blue hydrangea. Yes mom, from my garden. Yes, my favorite colors too.”

I posted to FaceBook this evening that mom has not called me by my name all evening. She asked if I was her babysitter and I responded, “No, I’m your mommy-sitter.” So, she headed up to bed at 8 and I helped her with all the preparations necessary to tuck her in. I sat on the edge of the bed with her awhile and when I hugged her she called me by name and said I am a good daughter.

Regards,

The Widow Fike