December 2, 2012 · 7:42 pm

The little things that can make one’s day

So Mom would probably be mortified if she knew I was revealing this to the world, but it really is something that a lot of caregivers can relate to.

Today, all I wished for was poop.

Mom has a colostomy and after spending a week in the hospital, mainly on a liquid diet, her stoma had “gone asleep” in a manner of speaking. The medical staff warned us it might take a day or two to get things going, but after three days of solid food, Mom was barely outputting any stool. And that in turn was making Mom very sick. (Imagine how you feel when you are really constipated.) I feared another ER visit was in our near future.

But today, angels might as well have sounded from the heavens. Mom had stool in her colostomy bag! Yay for us! Our home care nurse was just as excited, and pointed out how when you are a caregiver, you have to enjoy the small victories in the face of illness.

That’s very true. I remember during Dad’s steady and steep decline into dementia, we would be happy if he was just able to eat, and didn’t have a fall in a day. It’s difficult to believe that one could take pleasure in the face of decline, but if you only focus on the negative, it will swallow your soul whole. I’m the ultimate pessimist, but even I recognize the joy of my mom being regular again. It keeps us out of the hospital, and out of the Grim Reaper’s grasp for a little while longer.

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December 1, 2012 · 8:43 pm

Living with lurking symptoms

Many of my posts lately on this blog have been about the similarities and differences between my parents’ healthcare experiences. Today, I’m noticing a similarity of sorts. Despite my dad suffering from a mental disease and my mom suffering from cancer, there’s the same black cloud when it comes to the appearance of dreaded symptoms.

Before Dad moved to the latter stages of Alzheimer’s, he would have good days and bad days. Sometimes, my mom would even tell me that it was a good week, or at least an uneventful one.

And that’s when you strive for when you are ill. Let’s keep things as boring as possible, right? Now Mom has a hernia and we have been told by the doctor that it could slip in and out at will, and Mom has no control over it. If it slips into the wrong place, it can make Mom sick and cause her severe pain.

So just like with Dad, there’s a black cloud hanging over the house, and I walk on eggshells, hoping and praying the hernia doesn’t act up so that Mom can avoid emergency surgery. With Dad, it was his mind that was totally unpredictable. The symptoms of ill health can rear their ugly head at any moment, and that’s a special kind of torture all of its own.

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November 30, 2012 · 8:19 pm

Dad vs. Mom in the hospital

It’s impossible for me not to compare my parents and their completely opposite experiences in the hospital. Of course, there are many reasons for the extreme contrasts. Dad had a mental illness, Alzheimer’s, which dominated any physical ailments that he suffered from. So for Dad, hospital experiences were muted. Sometimes, the physical symptoms could be treated with medications and procedures, but there was no cure for the disease that was robbing his mind. Luckily, he was not an aggressive dementia patient, but he was a shadow of his former self. The nurses and other caregivers that took care of Dad on his numerous hospital visits seemed to be able to see beyond the current shell of a man.

But unlike Mom, Dad never received the high fives and accolades that Mom has, as she recovers from surgeries and other medical setbacks. I thought about that again today, as Mom was wheeled out of the hospital by a nurse. She has developed a hernia from her surgical procedure back in July. She will need to have surgery in the next month, but for now, she can go home. People waved and cheered as she was rolled down the hallway, towards the front door to freedom.

While Dad was never violent, due to his dementia, he could not be a fully cooperative patient. Mom on the other hand is every nurse’s dream. Charming, funny, and always wearing makeup, she is the bright spot in what can be otherwise dreary days for healthcare workers. Mom may be battling physical ailments, but mentally, she can still delight others.

Just like Dad used to be able to do, before Alzheimer’s robbed him of his personality.

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November 29, 2012 · 7:48 pm

An anniversary not to be

This week my parents would have celebrated their 41st anniversary. Last year, Dad was in the hospital, barely hanging on to life, a hulking ventilator lurking in the corner of the room, breathing for him. The fact that it was their 40th anniversary was the only reason why I had wanted him to hang on for dear life. I knew it was important for Mom to mark that day with Dad still alive. The hospital staff had called us a few days before, asking for permission to “pull the plug.”

Dad was under conscious sedation, so I certainly don’t think he had any idea we were celebrating their 40th wedding anniversary. The hospital staff brought Mom a slice of cake from the cafeteria to mark the special day. Mom read aloud the message in the anniversary card she had bought for Dad. It had a picture of a wine bottle on it. The card’s message read:

“Being in love with you has a wonderful way of making a world that makes sense.”

Mom added: “Pat, today is our 40th anniversary. You have been a wonderful husband and companion to me and I treasure you.”

Mom had the card cremated with Dad, as her final message to her mate of 40 years.

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November 28, 2012 · 9:48 pm

Moan from the past

So Mom is back in the hospital and the small town hospital she is in has been eerily quiet. We were told there were only two patients that were inpatient last night, including my mom. Today, that number swelled to five. There was one patient in particular that made himself known, because he was in so much obvious pain.

He would moan, starting low and working his way up to a pitiful, alarming wail. It was very disturbing and continued for hours. I heard the nurse say they were giving him his pain medication, but the poor man didn’t seem to be able to find relief.

The moans reminded me of my dad, when he would have nightmares at home. I’ve written many times before about the vivid nightmares my father would have, and the moans he would make, the desperate calls for help that would escape his mouth sounded so much like the patient in the hospital.

So we went from eerily quiet to an eerie reminder of Dad in distress at the hospital today.

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November 27, 2012 · 10:09 pm

Dad lost at the post office

I was talking to one of the local shuttle drivers that used to take my dad on errands around town. This was as Dad was beginning to move into mid-stage Alzheimer’s, where he could no longer be trusted to complete even simple tasks independently. One of the chores my mom would send Dad out to do was to get the mail at the post office. The driver would drop Dad off and wait for him. This should have only taken a few minutes. Dad was in there about 10 minutes and the driver got worried, so he went inside to look for him.

He said Dad was wandering around, with a lost look on his face. He said, “I can’t find our box.” Surprisingly, he remembered what number the box was, just not where it was located. This was a task he had easily managed to do hundreds of times before.

The driver helped Dad get the mail but soon after, Mom would have to add one more chore to her growing list, as Dad lost the ability to complete even the most mundane of tasks successfully on his own.

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November 26, 2012 · 11:27 pm

Sometimes you know when something is wrong

So Mom is back in the hospital. After being discharged from the ER on Friday, she really hasn’t felt any better, despite the new medications she is on.

Today, she became violently ill in the doctor’s office. Finally, that was enough suffering for my mom to get admitted to the hospital.

And now we will ride another ride of tests, procedures and potential surgeries. We will be on hospital time once again, and that’s a time zone no one wants to find themselves in.

This time last year, I was standing by my dad’s bedside, holding his hand, telling him how much I loved him. One year later, I will do the same for my mom.

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November 25, 2012 · 8:07 pm

A golden opportunity tarnished

My parents saw quite a bit of the country (and world) when they were young, long before they married. Because they were older when they finally tied the knot, and I came along a few years later, they were quite content to settle down in suburbia. The wanderlust from their youth had vanished.

Carlsbad Caverns: Photo credit: NPS Photo by Peter Jones

But once they retired, and moved to their final home in New Mexico, they hoped to travel a bit. They were never going to be the jet-set type, but they wanted to at least travel to nearby attractions. They visited the Carlsbad Caverns and received a Golden Age Passport (now called Senior Pass.). This would have allowed them to visit other national parks around the country at heavily discounted rates.

Mom hoped to be able to use the pass for future trips. But dementia reared its ugly head and vacations became a distant dream. Those “golden years” where couples who have worked hard all of their lives are supposed to be able to enjoy carefree days were tarnished forever.

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November 24, 2012 · 8:20 pm

A Gathering I must attend

It’s strange the people who you cross paths with, often at the darkest moments in your life. I think these chance encounters are much more memorable than the casual, day-to-day encounters that vanish from our minds almost immediately.

Today, I met one of the owners of the local Irish pub. He was taking a cab because “his truck got drunk last night.” Ha, that’s the best excuse for admitting you are too drunk to drive that I’ve ever heard!

Image courtesy of Tourism Ireland

His Irish accent was apparent. He said he was from Dublin and had been in New Mexico for about 8 years. I offhandedly mentioned that the change in scenery must have been quite a shock. He agreed and talked about how he hadn’t been home in about four years and really wanted to get home next year for “The Gathering.”

I inquired further and learned that there is this whole movement in 2013 encouraging those who have immigrated from Ireland to return to their beloved homeland during the year. I wish Dad could have lived long enough (and in his right mind) to participate himself, but what a great way to honor his memory and his love of his birthplace than to travel to Belfast in 2013.

It just so happens that the last of Dad’s assets have been processed and the final check is more than enough to cover a trip to Ireland. Of course, there are sensible things to do like pay down credit card debt, and make sure Mom will have enough to live on. But I hope there will be enough left to finally visit the land that Dad loved so much, to participate in “The Gathering” with people like I met today.

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November 23, 2012 · 7:34 pm

Another Black Friday in the hospital

Another Black Friday, another parent in the hospital.

What a way to spend a holiday weekend.

The roller coaster of emotions is almost unbearable.

The good news is that we are going home. But what we don’t know is if the issue is truly resolved, and what tomorrow will bring.

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