Category Archives: Memories

December 6, 2012 · 7:34 pm

Curse of the Christmas cards

Mom is debating whether or not to send out Christmas cards before she heads into surgery next week. Last year, with Dad being so ill and then dying right before Christmas, we understandably skipped the cards and celebrations. This year, Mom has a darn good reason to skip the cards again.

It’s a bit awkward to write Christmas cards when you are ill or are caring for a loved one who is ill. There are so many dark days and painful memories better left unmentioned in a card that is supposed to be full of happy greetings. My mom can’t exactly say, “Just wanted to get this Christmas card to you in case I die during surgery!”

xmas-cards

I remember coming across several unmailed Christmas cards that Dad meant to send to his family overseas. There were some from the year when he would have been in the early stages of dementia. Everything was addressed correctly, he just put them in his nightstand drawer and forgot to mail them. By the next year, he had moved into the mid-stages of Alzheimer’s. The addresses were a mess. He put his own address label in the “to” field. On one envelope he wrote the same address in the “to” and “from” fields.

It was yet another sad sign of my father’s mind crumbling away, even as the holiday cheer carried on all around him.

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December 5, 2012 · 8:29 pm

Online ways to help the fight against Alzheimer’s

I often felt that I did not do enough while Dad was alive to combat the Alzheimer’s that was robbing him of so much. But now that he is gone, I am trying to make amends by becoming involved in various causes to help promote research and treatment for Alzheimer’s. One thing I did recently was join the Alzheimer’s Prevention Registry. If you have a loved one who has been impacted by Alzheimer’s, it’s worth taking a few minutes to join the registry.

Dear Friends and Family,

Today I did something that may help save the lives of millions of people around the world. I took one minute of my time and joined the national Alzheimer’s Prevention Registry, which is working to end Alzheimer’s disease before we lose another generation.

We can meet this challenge – but only with volunteers like me and you.

I encourage you to join the Alzheimer’s Prevention Registry today! It’s a community of people interested in learning about the latest research to prevent this devastating disease and opportunities to help make an impact. The Registry will be used to inform people about opportunities to participate in prevention studies and treatment trials now and in the future. Every person who joins will help accelerate Alzheimer’s research and improve our chances of ending the disease once and for all.

Visit Alzheimer’s Prevention Initiative to join the Registry and make your mark in the fight against Alzheimer’s!

Every little step we take brings awareness. Knowledge is power.

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December 4, 2012 · 9:14 pm

Gifts for those with dementia

I was reading this blog post today about gift ideas for loved ones with dementia. The holiday season can be awkward when you are trying to accommodate those with Alzheimer’s and dementia. I think often, we as family members go to one extreme or another. We either bombard the poor souls or we pretend they don’t exist. As usual, the solution is somewhere in the middle.

First of all, there is no “one size fits all” solution. Each person with dementia will react to the holidays in a different way. For example, Dad was never sentimental about the holidays and his interest didn’t change once dementia took hold. I did buy him a personalized New York Times edition from his birthday and birth year once he was in about the mid-stages of Alzheimer’s. I wish I had bought it for him sooner. I believe he was able to look at the pictures but I believe his reading ability was limited by that point. It was a gift I had meant to buy years earlier, for Dad loved newspapers and history.

gift

So one has to try to relate to their family member with dementia as much as possible. I think generally speaking, low-key, small gatherings are best, because they don’t stress out a dementia sufferer with too many unfamiliar faces and too much commotion. But again, I heard a story recently about a woman who suffered from dementia and who had loved to cook the big holiday meal before dementia took over.

So what did the large, extended family do? They each made a dish from one of her recipes, and pretended that she made it herself. The little old lady took her place at the head of the table, wiped her brow and exclaimed how tired she was from all of that cooking before digging in. The new tradition went on until she passed away.

Sometimes gifts don’t come wrapped in paper and bows. They are recreating memories of a loved one and sharing in the joy of those happy times.

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December 3, 2012 · 8:41 pm

Another holiday season with illness

After enduring the ups and downs and final passing of my father just five days before Christmas last year, now I’m facing my mom facing another major surgery right around Christmas. As I’ve mentioned before, I’m not a sentimental holiday person, but you would have to be blind and deaf not to notice all of the holiday decorations and music around every corner.

Since I’ve been through this before, I know a bit of what to expect. And that’s the unexpected. You have to be flexible when you have an ill relative. This year, at least I don’t have the stress and guilt about missing time from my job. I no longer have one, for better or for worse. But as far as holiday celebrations go, I hope to make it back home for awhile before Mom needs her surgery. But I also know that I may get a call at any moment ushering me back to be with Mom. So Christmas will be celebrated ASAP.

When illness strikes and you are the primary caregiver, you must be willing to shift priorities. A holiday is just another day. One has to focus on the here and now, and what is best for their loved one who is ill.

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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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