Outings

Murphy’s Law – Episode #1

Of all the times that things seem to go awry, it always seems they do at the least convenient times and especially when my husband James and I are out of town. Why should we be any different right?

One of Dad’s first significant Lewy Body Dementia events happened about a year or so after his diagnosis. James and I had planned a trip to Mexico a year earlier and I grew skeptical about going as the departure date grew closer. Dad had been on his own for a few days here and there when his girlfriend was out of town. However, I was always within daily earshot and a swift 3-hour drive to rescue him if necessary. Additionally as “Murphy” would have it, his girlfriend also had plans to be out of town that same week we were to be away. So it was with great reluctance that I let Dad talk me into leaving for our trip down south.

Laughing, “I’ll be just fine Jennifer. You and James get out of this wretched winter for a few days and we’ll talk to you when you get back.”

“Are you sure Dad? What if something happens?”

“Nothing is going to happen. I’m perfectly capable of taking care of myself for a few days. I have everything I need right here, I don’t even need to go out. Have a good time honey, can’t wait to hear all about it!”

The phone rang in our hotel room at about 7am. James and I just looked at one another as if to ask; “who the heck could be calling so early, did you call for room service?” I rolled over and picked up the phone;

“Hello?”

“Hi Jennifer it’s Liz. I’m so sorry to bother you on your first day of vacation!”

Liz was my mother’s younger sister who lived within an hour driving time to Dad’s. In addition to several other people, I had put Liz on alert in case anything came up while we were away.

“No problem, is everything ok?

“Your Dad is fine, but he’s in the hospital.”

“Really? What happened?!”

“Well, apparently he thought there were people coming into the condo through the fireplace and called 9-1-1 when they wouldn’t leave after he told them to. When the police arrived they could tell something just wasn’t right with him, so they took him to the emergency room to get checked out. The only person whose name he could remember was mine, so they called me.”

Holy crap I thought, of all times to have this happen and we’re thousands of miles away from home. How were we going to manage this?

“Liz, is he still there?”

“Yes, but they would like to discharge him if at all possible. I can take him with me, but I’ve got to work tomorrow so we’ll need some additional help.”

After a few (international) phone calls, I lined up several family members and friends to stay with Dad for the remainder of the week. Wow I thought, I should have listened to my intuition instead of being talked into leaving him home alone. Although he had managed previously, it seemed we had just crossed over into the next chapter of our life with LBD.

Mary

Several months after Dad had been at the Assisted Living Facility, he became friends with a resident named Mary.  Mary was in her early 80’s and just the nicest person ever.  As with many of the residents I was getting to know, I often wondered what events brought them to the Home.  But with Mary, I could see that she was struggling with a bit of dementia.

When I stopped in at the Home over the next few months, I would frequently find Dad and Mary sitting together.  They would enjoy watching television, participating in an activity or just sitting quietly waiting for the next meal to be served.  On the occasions where I would find Mary sitting by herself, she was quick to spot me and would always give a welcoming wave.

“How are you Mary?”

“I’m good, just waiting for lunch.  I think your father went down to his room.”

“Ok great, thanks!  We’re going to the grocery store, do you need anything?”

“No thanks, I think my son is coming later – I’m good.”

“Alright, if you change your mind just let us know.”

I wish I had known Mary years before.  She was so enjoyable and down to earth, I’m sure we would have become fast friends.  She always looked nice in her tailored slacks and attractive sweaters, while sporting her room key on an elastic wrist coil.  We would enjoy each other’s conversation, she was the kind of person that just made you feel good.  I could see why Dad enjoyed her company.

In getting to know Mary, I learned that her 98-yr old mother was still alive and in a nursing home up the road a bit.  Apparently the two did not get along much, but it seemed longevity was in the genetic cards for Mary.  As time passed however, we noticed that her speech and ability to create sentences became impaired.  She would smile and greet me warmly as usual, but then her mind couldn’t seem to bring out the words she wanted to use.  She would start out well, but then get stumped and look up as if trying to pull the words out of her head, except they just wouldn’t come.  Frustrated and aware of her ailment, she would shake her head and make a silly noise that resembled the sound of what a cartoon turkey gobble might sound like.  I felt badly and tried to sooth her resulting exasperation.

As her disease progressed Mary needed additional care and was moved to the nursing home where her mother was living.  I could see that Dad missed Mary, so I wasn’t surprised when he asked if we could go visit her.  It was a cold, damp winter day and after a 20-minute car ride we made our way across the icy parking lot into the home.  We signed the visitation book and walked down to the nursing desk to inquire about her location.  I could see Dad looking around and taking in the scene.  The nurse gave us the number and gestured in the direction of the room.  She also smiled and told us that Mary was sharing a room with her mother.  Egad I thought, after all the cruel things that life can put you through, why on earth would someone have to share a room with an individual they don’t particularly get along with at this stage of the game? 

We made our way down the corridor and entered the room.  It appeared as if both women were sleeping, however we were “greeted” by a grumpy voice that came out from underneath a blanket;

“Who are you looking for?”

Sheepishly I responded, “Hi, we’re looking for Mary?”

“She’s over there”, a spindly finger pointed across the bedroom.

As we walked toward the bed, a woman we barely recognized opened her eyes and gazed up at us.  She slowly sat up and reached for her glasses before asking who we were.  That’s when I saw the familiarity of Mary.  She appeared to have aged quite a bit over the last couple of months.  That jubilant personality was replaced with more of a vacant expression and she seemed frail in comparison to the last time we had seen her.

Dad stepped forward; “Hi Mary, how are you?  It’s John and Jennifer”

With a delicate voice, but detectable smile she responded, “Oh hi, I couldn’t tell who it was until I put my glasses on…”

“Are you doing alright?  We miss seeing you at the Home.”

“Oh yes, I’m doing fine.  I’m just so tired all the time.”

After a few minutes of exchanging pleasantries, the conversation trailed off and we knew that we had reached the end of our visit.  Dad and I walked back through the hallway and out into the parking lot.  As we climbed back into the car and fastened our seatbelts he seemed very pensive.  

I asked, “How do you think Mary looked?”

“Awful, what a shame.  I can see why she doesn’t get along with her mother, she seemed pretty ornery.”

Dad just sat there staring out through the windshield.  I could tell he was thinking about his own situation and I wondered if our trip to see Mary was not only to visit with her, but to see what was yet to come for him.  It was all very sad.

“Hey, want to stop for an ice cream on the way back?”

“Yes, that sounds great Jennifer!”

Halitosis

We were about a year into Dad’s move and life at the Home was going well. There were days in the beginning that we almost felt as if Dad didn’t belong there, that perhaps he could/should have been living in his own home, leading a fully independent life. Then something would happen that would snap us back to the reality of his LBD. This time it was halitosis.

It was Saturday and I had stopped by the Home to pick him up mid-morning to run our usual errands. The weather was beautiful and we had the whole day ahead of us. When I arrived at his room, he was just finishing up his post-breakfast, morning routine. I looked around his bathroom to see if he needed any toiletries while we were out. Everything seemed to be in order; toothpaste, shampoo, soap, razors – check. Even the prescription steroid cream that the staff applied to sooth his itchy skin spots that the daily memory patches left behind was neatly organized in his medicine cabinet. Ready to go, we started to head out the door. That’s when he told me that his mouth hurt. I asked;

“Did you burn your mouth on some soup or something?”

“No, I don’t think so…”

Hmm I thought, he probably just burned his mouth on something hot or perhaps abraded it on something dry and scratchy and forgot. As his dementia started to progress a bit, I was beginning to brush off some of the (erroneous) things that Dad had begun to point out or talk about and quickly dismissed the remark, thinking it would probably subside or be forgotten, as would often happen with such topics as the day went along.

Dad climbed into the car, put his seatbelt on and we were off. It wasn’t until several minutes later that I could smell this horrific odor. As I continued driving I noticed that the smell got worse, especially when Dad was talking. It was so atrocious, I had to immediately put the windows down to air out the car – I’m talking ‘knock you over with a feather’ potent. It couldn’t possibly be his breath I thought, Dad never had bad breath that I could remember. Whatever it was though, it was FOUL. We arrived at our first stop and I was now sure that the odor was his breath. I asked him to open his mouth and that’s when I could see the little white pustules on top of his tongue.

“What the heck is that?!” I exclaimed.

“Is what?” he asked, as I turned my nose in the opposite direction to lessen my exposure to the offensive smell.

“I think you have some kind of infection on your tongue or something, maybe we should have you gargle with some warm salt water when we get back.”

As soon as we got back to our house, I prepared some warm salt water and had Dad gargle. He indicated that his mouth felt better, so I asked the staff at the Home to continue the gargles for the next day or so. However by day-2, his mouth looked no better and I knew it was time to see the doctor.

“What do you think it is?”

“Looks (and smells) like a fungal infection to me”

“How the heck would Dad have ended up with an oral fungal infection?

“I have absolutely no idea.”

“Dad – any ideas?

“No honey, I don’t.”

It took a couple of prescriptions to clear it up. We finally went with a cocktail of Maalox, nystatin and sucralfate that I had remembered making up for some radiation cancer patients struggling with mouth ulcerations. That finally seemed to do the trick and brought relief to poor Dad’s oral discomfort within the first couple of treatments – hooray, no more halitosis!

It wasn’t until several weeks later on another one of our daily adventures, that Dad brought the subject of his oral fungal infection back up;

“I think I know what happened to that thing with my mouth.”

“Really – what?”

“I think I was brushing my teeth with that cream the staff puts on my itchy skin”

Holy crap I thought, I bet he’s absolutely right! Despite some of the LBD effects we were starting to see in Dad, he still had the wherewithal to figure out what happened and he was spot on. The toothpaste and steroid cream tubes were both kept in his bathroom medicine cabinet and were similar sizes. Between his impaired eye sight (macular degeneration) and the dementia, he had probably been grabbing the wrong tube and brushing his teeth with the steroid cream for some time – yuck! Needless to say, we started to keep the cream in the medication room from that point forward. This was just one of the first of many things to come that confirmed our decision to place Dad in Assisted Living. Regardless of how great his good days were, I would hate to imagine what other kinds of trouble he might get himself into in a private home.

Superman

The first time I noticed that something was amiss with Dad was about 12 years ago, right after I decided to move to New York State.  He was 75 then, still driving and working a part-time job at a local golf range.  I had started making frequent trips up to my new house prior to moving in and on this occasion, Dad decided to come with me to help out getting things ready.  I also had an appointment scheduled to see a customer, so he planned to paint one of the bedrooms while I was gone.

Dad was always busy doing all sorts of projects over the years.  He had tremendous focus and discipline and could build or fix just about anything.  As a kid I remember we always had the nicest lawn in the neighborhood.  Dad would spend hours fertilizing, weeding and meticulously cutting every blade of grass.  He would continuously work on manicuring the landscaping, which he had planted with a close landscaper, family friend back in the early 1960’s.  It wasn’t a particularly large property, but you could see the sense of pride that Dad had when neighbors or passerby’s commented on how lovely everything always looked.  So it wasn’t unusual to think that Dad would have the bedroom scrubbed down, caulked, primed and painted in the time it would take me to travel out to my appointment and back.

That morning I left the house early in the day after we had some breakfast together and got everything organized to paint.  Between the hour and a half drive each way and my customer appointment, I didn’t arrive back to the house until sometime in the late afternoon.  I was excited about seeing his progress and fully expected to see the room looking brilliant with the new color.  When I walked into the house I called out to him, but heard nothing.  Hmm I thought, maybe he’s upstairs?  I headed up the staircase and called out again – still nothing.  I peeked around the corner and arrived down in the bedroom.  What I saw surprised me, the walls had only received a white coat of primer.  Where was Dad?  After looking around further, I found him in the backyard wandering around picking up sticks.  He had started a small pile (there weren’t too many) and seemed somewhat vacant, for lack of a better description.  It was early spring and the weather was still a bit damp and chilly, but I thought maybe he was bored or simply getting tired. 

We continued on together that evening without anything else seeming out of the ordinary.  He never did fully explain what went on that day.  Maybe he was just having an off day or merely starting to show his age.  Or, perhaps we had just seen a glimpse of what was yet to come.  I suppose we will never know for sure, but I do wonder.  Back then and even today, I still think of Dad as that active, bright, magnificent guy who could do anything.  Maybe that’s why it’s so hard to accept his current situation and declining health.  He will always be my hero.

Birthday Celebration

There are many times in life that it’s important to stop, smell the roses and be thankful for the time we have together. Unfortunately, many of us probably don’t do that as often as we should. Dad’s 87th birthday recently passed. For many years, we have typically gone out for dinner. This year was no exception and he picked a local Irish pub for his celebratory meal. When I picked him up at the Home he was totally on his game. He was bright, cheerful and expecting my arrival (I had called him earlier in the day about our plans).

When we arrived at the restaurant he asked that I read the entire menu. After deliberating several choices, he selected the ¼ pound hamburger with French fries. Cooked to perfection, he devoured the burger, fries and a ginger ale. With some gentle persuading (it usually doesn’t take much), he raised his eyebrows and delightfully ordered the homemade bread pudding. If there is anything that LBD hasn’t affected, it’s his appetite for good food! The waitress kindly served the pudding with 2 forks. Having just eaten an entire plate of bangers and mash, I felt guilty about eating dessert. Then I thought to myself, “We may not have a birthday next year, this could be it.” With that thought it mind, both of us enjoyed splitting the yummy pudding.

We rolled out of the pub that evening like 2 pigs pleasantly stuffed and satisfied. In looking back on all the years we have spent time together celebrating birthdays or otherwise, I never thought about it being the last time we might do something together. The days are so hit or miss with LBD. You just never know how one day will be to the next. I guess that’s why we should make the extra effort with whatever time we do have left. It was a great birthday!