Pages

Saturday, April 12, 2014

FYI, readers and friends

I know it has been a while since I have written and tonight's post, "Tom's Crash Course in Shower 101", follows about three weeks of not much. Part of the reason is that I don't wish to cover the same stuff over and over and prefer to only post when I have something fresh and inspiring. Unfortunately, there is more to it than that.

Life has been extremely busy outside of the caregiving schedule. Kelly is graduating high school in two months and all of the events that go with graduation are going on: shopping for prom dresses and accessories, checking out colleges, trading in my old car to get Kelly a more reliable car to take with her, ceremonies, planning, etc. Additionally, Allison is having trouble focusing at school and once again has to pass a standardized test in order to be promoted to the next grade. Mike works long hours and often is not home until after 7:30 PM. On nights when I have to watch Dad and Mike works late there is additional pressure for me to pick up Allison from our house and have her do her work at Dad's while I am on duty. The problem with that arrangement is Allison's ADHD. Putting her in a new environment when her meds are wearing off is counter productive. Add to that my Dad's need to question her about who she is, how old, what grade and what she want's to be when she grows up is an unavoidable distraction.  This part of the situation is unfair to Allison and needs to stop.

Finally, like it or not, Dad's condition is worsening. Where before he was having a hard time speaking without repeating himself, he is now having a hard time completing whole sentences. I fear there is a storm ahead and the time to bring in professional help is near.

I understood when I began this blog that the only positive result would be to inspire and comfort other caregivers going through the same struggles my family is enduring. I would be a hypocrite if I did not admit to becoming depressed lately. Overwhelmed by the pressures and expectations of every aspect of my life and the feeling of not being able to accomplish anything to my own satisfaction, my melancholy must have become obvious. Mike has noticed the change in my disposition.
"You've gone to a very dark place, baby", he told me. His concern played across his face. It must be true.
"I know", I said, "Something's gotta give".

To be continued....




Tom's Crash Course in Shower 101

Up until now I have been the only one who has consistently been able to get Dad to take a shower on a weekly basis. I know all his tricks and have committed to one shower a week but sometimes it's still a struggle. He is still gleefully defiant when I tell him he needs to take a shower, smiling and saying "NO!!" to my face, thinking he can get me to back down.
A couple of weeks ago Hillary was still there when I arrived for my shower night visit. There have been problems with the toilet in one of the bathrooms backing up and, with it being a bathroom Dad tends to use frequently, it needed to be dealt with right away. Dad was standing in the door of the bathroom talking to Hillary as I walked in.
"Oh good! You're already up", I said. "Guess what day it is! Shower day!"
"I'll do it later", he replied.
"No you won't", I said, "You'll take one now".
We both made our way from the door through the kitchen and started to cross the living room when I realized he was making a B-line for his recliner. I jumped in front of him and spun his chair around backward to cut him off from his goal.
"Dad, you're not sitting down now, you're taking a shower"
"NO!" he said with a smile, daring me to contradict him.
"Yes, Dad, you are taking a shower", I insisted.
"NO!"  he said with a smile of delighted resistance.
I knew this argument could continue indefinitely if I didn't change my approach.
"Dad, you have to take a shower", I said lowering my voice and holding him by the shoulders. "You haven't showered in a week."
"I beg your pardon, yes, I have!" he replied, clearly insulted.
"No, you have not", I shot back, "Do you know how I know?" I poked him in the chest with one finger, "I picked out that shirt and that t-shirt for you last week."
He finally gave in.  I have noticed that he is particularly resistant when other people are around. That is why I prefer to have Mike and the kids hide if they accompany me on shower night.

Dad is having a harder and harder time getting around. On shower nights I usually will observe any cuts, scratches or edema in is legs, feet and ankles and if anything looks worrisome I will take pictures and send them to my siblings. His ankles and feet have been swelling a lot lately and since I am the only one up until now who sees him mostly undressed on a weekly basis, I am most likely to notice a problem and alert the others.


That said, Dad has been picking at the same series of scabs on his shin for months now and they are not going away. Actually, they appear to be getting worse. On the last two shower nights I have noticed, aside from the usual edema, purple feet and worsening scratches on his legs he also had large white patches on the soles of his feet. I sent pictures to my siblings and asked their opinions. We unanimously agreed that we needed to step up his hygiene quite a bit. I suggested that each of us commit to one shower a week effective immediately. Everyone agreed and my brother, Tom, committed to Monday nights specifically.
I knew that he would need a lot of information to be successful so Monday morning I sent him several long texts with instructions and additional tips to increase his odds of success:
  • Make sure he is standing and away from his chair before announcing it's shower night.
  • Have his "uniform" on the bed before he undresses so he knows you know what he needs. The uniform includes clean briefs, undershirt, socks, hanky, overshirt and jeans.
  • Check the pockets of his dirty clothes for wallet, pens, hankies, glasses and toothpicks.
  • Have the small standing towel rack positioned by the shower with two large towels. 
  • Put a hand towel on the floor of the shower to prevent slipping. 
  • Make sure soap-on-a-rope, wash cloth and scrub brush are sitting on his shower chair and shampoo is beside it.
  • Pre-warm the water for him once he has undressed.
  • Don't leave him to do his thing until he has given you everything but his briefs (he may keep his briefs and his dignity but everything else is going in the wash). Put them in the washer but do not start the wash until he finishes showering.
  • Leave the room for a moment when he is walking in to the bathroom but come back after a few seconds and check that he is really getting in. He has tried to fake us out before by just wetting his hair.
  • Once he is in, check on him every so often to make sure he is really washing. 
  • After he is out, you can start in the washer. 
  • Wash briefs and towels separately with plenty of bleach.  (Truthfully, I did not expect Tom to do the wash at all. I figured his hands would be too full just trying to get Dad to cooperate.)
 I sent these instructions over a series of several texts and was concerned that I was annoying Tom because his answers were so short: "okay" and "thanks". To my surprise my cell phone rang early that evening. It was Tom.
"Are you stuck?" I asked, thinking Dad had already managed to stonewall him. 
"No, I'm goin' in!" he said jokingly like a man entering a warzone. "Any last things I should know?"
Pleasantly surprised I said, "Take the dirties out of the room as soon as they are off. If you don't, he might try to put them back on when leave the room."
"Okay. Where should his uniform be?"
"On the bed so he can see it but far enough away that he can't reach it", I instructed. 
"Okay, good", he said. 
I was glad to hear him so enthusiastic and wondered if Dad would give him a hard time or if it would be easier for Tom, being a guy.  I waited for word...and it wasn't long before I got a text.
"He's in the shower!" it read. 
"Wow! That's great, Tom!" I responded, genuinely impressed. His response was priceless.
"I feel like I just negotiated a major peace treaty! Thank you times a thousand!!"
"It does feel good, doesn't it? :)", I responded. 
"How about the clothes?", he asked, "What should I do with them?"
"Throw them in the shower with him!" I joked.
"Lol!"
"Just wash the briefs and towels separately from the rest", I said, impressed that he would take on the laundry as well. "Thanks for following through!"
"Thank you! Love you, li'l sis."
"Love you, too, bro!"

To be continued.... 

Sunday, March 9, 2014

Walk like a duck...

Dad has become much more resistant to physical activity lately. Between visitors he spends much of his time sitting in his recliner and watching TV. No matter who is visiting, getting him out of his chair is a battle. Sometimes the only exercise he gets is letting Buddy out and answering natures call. His lack of exercise is causing loss of muscle conditioning.

Because of this, pie-for-shower night is becoming more of a challenge with each week that passes. He knows he needs to shower but just the exertion of getting out of his chair is so much that he starts arguing with me from the minute I say "Guess what night it is". The past three weeks have been progressively more difficult. Last week was so hard, in fact, I almost had to throw in the towel. I was particularly exhausted, having just completed a week of school projects with Allison and a larger than usual work load at the office and was in no mood to deal with his resistance to basic hygiene.

"Come on, Dad. It's not that hard and you get a pie if you do it", I pleaded.
"I'll do it in the morning", he dodged.
"No you won't, you haven't showered in a week".
"I beg your pardon, I shower every morning", he said angrily.
"No, you don't and I can prove it", I shot back.
"How?"
"You are wearing the outfit I chose for you last Saturday", I replied, "Please don't make this hard for me".
The argument went on and on until he was almost ready to throw me out...except he realized that would require him to get up. Eventually he realized I was just slightly more stubborn than he and gave in. After that I knew I would have to change my approach.

Yesterday I went in with a plan...
Arriving with my frozen pie, I set it on the kitchen table and yelled, "Dad, come in here!! You've got to see this!!"
"What?" he yelled back.
"Hurry, Dad this is so cool!!"
"Okay, okay...just a second... gimme a sec..." he said slowly hoisting himself out of his chair and shuffling into the kitchen.
"Come on! It's really cool..." I said as he entered the kitchen, "Actually it's frozen", I said pointing to the pie, "but I will put it in the oven as soon as you get in the shower". It's a good thing for me he has a certain respect for a well executed practical joke because that could have gone over very badly. As it was, he fussed a bit about being tricked into getting up but it was the easiest shower he has had in a while.

After he was dressed and made his way out of the bedroom I noticed him start to lose his balance a few times. Although his loss of muscular coordination is threatening to be dangerous, he refuses to use his walker. Paula wants us all to take him for a short walk around the yard each visit whenever possible. This will be difficult for all of us, particularly when he objects so much to even getting up. Since the time Dad fell backward when he and I started to descend the stairs of his back porch a couple of months ago I have been reluctant to take a walk with him unless Mike is there. Unfortunately, for his health and partial independence we must press him to walk... so it means I can't take him to the back yard but must instead walk him around his large, circular driveway.

After we ate dinner I said, "Dad, let's take a walk before we dig into the pie".
"Why?" he demanded, as usual.
"Because you are losing muscle strength sitting in that chair all day. You need to move your legs."
He let out an exasperated sigh, muttered something and then grudgingly complied.
It was cold out for our part of Texas and I put a large puffy coat on him before we went out and, grabbing his walker as a precaution, followed him. I knew he wouldn't want to use it but under the circumstances it was a necessary safeguard.

He shuffled slowly along, every step a major effort. I kicked a few fallen sticks out of his path and watched him for any moments of imbalance. He punctuated each minute with "God it's cold out!!"
Sometimes I got a little bit ahead of him and would stop and let him catch up. It reminded me of something Dad had told me about a long time ago, so I decided to try to jog his memory.

"Dad, do you remember when you told me about the two ducks that kept waddling across your yard in the middle of the day to swim in the neighbor's pool?"
"No, did they really?" he asked.
"Yeah, you said the female was probably carrying eggs because she was getting bigger with each walk. You said the male was so patient, waiting for her to catch up when she fell behind, standing by her when she would sit down to rest a minute".
Dad laughed. "Carrying eggs?"
"Yes, and you said you could imagine her complaining as she waddled along 'My feet hurt! You did this to me! And I'm FAT!'"
He laughed again, "Yes, that sounds about right". I doubt he missed the point but am sure he decided to ignore that he was the fat, pregnant duck in this scenario.
The story took just long enough to get us to the front door. We went in to enjoy our pie.

I know there will be more walks like this and I will probably tell him more stories to get him through it, pausing occasionally to let him catch up. I guess I will need to learn to be as patient as a duck.

To be continued....

Monday, February 17, 2014

Mike, my Valentine: a detour through the relationship that keeps me sane

In honor of Valentine's day it is important to recognize and appreciate the relationships that help us endure the burden of caregiving. For this reason I am going to stray from the topic of Alzheimer's and talk about my husband Mike, the love of my life and the man who has stayed by my side through the hardest of times and will drop everything at a moment's notice to offer his assistance and support.

I don't know how many other people do this but I buy cards for special occasions way in advance so I always have something appropriate on hand in case I don't have time to go to the store or in the event the right moment just comes up. This has been a habit for decades, really since my early twenties. I have birthday, romance, get well soon, hang-in-there, anniversary, and even various comical holiday cards stashed away and ready for anything. There is only one card I can remember giving unexpectedly that really sticks in my mind as a life story. It was a card I gave my husband when we were first dating. In fact I gave it so unexpectedly, I didn't even fill it out.

Mike and I figured out within weeks after we began dating that we were a great match. Both of us had been burned in the past and, although I think we both knew we were falling in love early on, neither of us wanted to be the first to say it so we danced around it for a while. We had been dating about three months when he gave me a card. Before I opened it he prefaced it by saying, "I think you are going to understand this...most people wouldn't, but I think you will".
I opened the card. On the front were two little Play-doh aliens and one of them was saying, "Zeelple florb eep kligoo!" I opened the card and on the inside was a single question, "Narboza?"
I looked up at his hopeful face and could hardly contain my excitement when I said, "Wait right here....", got up, left the room and a bewildered Mike to go get something.
I came back and handed him a card and told him, "I bought this for you three weeks ago but wasn't sure if you would get it".
He opened the envelope, obviously puzzled until he pulled out the card.
"Oh my god!" he exclaimed.
On the front of the card were two little Play-Doh aliens and one was saying "Zeeple florb eep kligoo!"....the only difference between his card and mine was that mine had a boarder. I guess they made two versions but used same picture and same message.

If there was any doubt before then, it disappeared at that moment. This was it. As the years have gone by we have discovered all kinds of things about each other completely by accident that have just underlined this initial discovery. Most of the time it was just little things such as discovering that our views on religion, politics and family, while not always identical are completely compatible.

We dated for a year and in 2000 on Thanksgiving he proposed to me in front of both of our families with my daughter on his knee holding a ring and saying, "Mike wants to know if he can be my Daddy". I couldn't imagine a better proposal. We married five months later. I remember walking down the isle beside my dad and seeing Mike standing at the front waiting for me. "There's my friend!" I thought. That is what he has always been first and foremost...my best friend.

Mike and I have known each other since childhood. We grew up in the same neighborhood and knew many of the same people. Both of our fathers are doctors so we had a wide variety of medical contacts making health care very convenient. When Allison was born, Mike sat at my head talking me through the c-section while our mothers stood in the doorway right outside the delivery room.  I will never forget how surreal it was after knowing him most of my life to hear his voice saying, "Okay, there she is", and looking at me, "Do you here that? That's our baby...and our moms are hugging each other in the hall".


Once, still fairly early in our marriage I had been stuck home one day with a virus and I noticed on the cable guide channel that later in the day an awesome movie marathon would be playing.  Anticipating the marathon I popped in a tape of another great movie, Midnight in the Garden of Good and Evil, to pass the time until it began. The marathon started, I switched to cable and the tape automatically ejected. I fell asleep on the couch when the marathon was over and woke up to a kiss from Mike, having just arrived home from a long day at work. He saw the cover of the tape on the coffee table and said, "You watched Midnight in the Garden of Good and Evil today? What a great movie...." then he saw the tape jutting out of the VCR, pulled it out and changed his tone, "This tape is only half played?! What made you stop the movie?" Mike asked in feigned horror.
"I was just waiting for another movie to start", I began, but he interrupted.
"You stopped Midnight in the Garden of Good and Evil, a Clint Eastwood directed movie to watch something else??? What could possibly have trumped THIS movie??" he demanded.
"Godfather marathon", I said frankly.
"....oh....good...you know the rules", he replied with a sigh of relief. This was one of those "I knew there was a reason I married you" moments, and we had a good laugh.

Neither of us are particularly closed minded on world issues and when we do disagree we are willing to hear each other out. We are both adventurous eaters enjoying a wide variety of flavors and experiences. I introduced Mike to sushi and he quickly became a connoisseur, seeking out new sushi places to sample. Mike introduced me and our girls to Pho, something I had never tried before but now I can't get enough. The little surprises continue.


I love when we find little ways to relate to each other that just come to us out of the clear blue and seem so obvious once discovered that we wonder why it took us so long to see the correlation.

Mike worked retail for the first ten years of our marriage and during holidays his hours could be oppressive. Our first Christmas season together I told him if they didn't let him off work I would have to picket his store. He thought I was joking. Kelly and I made posters, went to the mall and stood outside his store. The posters read "All work and no play makes Mike a tired boy!" and "Daddy come home!" his co-workers and customers notice before he did along with other people in the mall. When Mike finally saw us he came out and hugged us. "You guys are crazy!" he laughed, enjoying our little joke. He told us later that his regional manager heard about it, called him and said "I wish someone loved me that much".  It became our annual joke. We always made sure to show up when he least expected it. It was a tradition that we loved to plan and have really missed now that he has better hours and works wholesale.
                                 

We have so much fun together...but marriage is not all fun and romance. The tough times are what tempered our relationship, making it stronger with each hurdle and closer with each heartbreak.

Some of our toughest times were caused by the recession. I would be hired for a job only to get laid off within a few months. I remember after my third job loss coming home, completely dejected. Mike hugged me and asked if I needed anything. Yes, a relaxing bath would be good. He drew the bath for me, put a towel in the drier so it would be warm when I was ready to get out,  and let me soak for a few minutes...then he came in and sat down. I finally broke down and started to cry. Mike held my hand for a minute but decided that wasn't quite enough...he climbed into the tub fully clothed and held me while I laughed and sobbed at the same time. With one unexpected gesture the disappointment turned into a wonderful evening I will never forget. He has a way of taking me by surprise at just the right time.

Mike is a born comedian, constantly making people laugh and causing people to ask me, "Is he like this at home?" In fact, people asked it so often when he was working retail that he frequently called me in the middle of the day and said, "Honey, you're on speaker, answer the question.." which was my cue to say, "Yes! He's like that at home!" (I would hear his customer's laughing in the background.) "Thank you, baby!" he would say giggling at our little on running joke.

We have  so many memories: our honeymoon in Jamaica, trips to Florida, stay-cations when we needed a break but were too poor to travel, holidays, children, buying our house, fixing our credit, school projects, achievement awards, employment rejections, cars, household repairs, losing my mom, losing Jenny, his mother's illness and, of course, my father's illness. Through it all we have had so many moments when we connect and know everything will be alright. We are a team. Mike calls these moments "Narbozas"...the ultimate answer to everything, our private term for our connection.
                         
Recently he asked me, "How many Narbozas do you think we've had?"
"Oh, I don't know", I replied, "Too many to count. Narboza has become our 'I love you'"
"It has", he agreed.  "Narboza."
"Narboza", I replied.

Happy Valentine's Day (a little belated)!

To be continued...