Tag Archives: Alzheimer’s

December 16, 2012 · 7:20 pm

Connection between loneliness and Alzheimer’s?

I read an interesting study today that suggested there may be a connection between loneliness and Alzheimer’s. What was most interesting was that it was those who felt lonely versus those who lived alone but didn’t express feelings of loneliness that had a higher incidence of Alzheimer’s.

It was a surprising result to the researchers. I’ve read numerous studies about social isolation leading to everything from dementia to depression. I wonder if these studies have some inbuilt bias towards extroverted people. There are some people who need constant company or they feel lonely; others can interact socially with people once or twice a week and be perfectly happy.

I’m not sure if Dad felt lonely before Alzheimer’s set in. Dad certainly had a passion for “alone time” activities like reading. He also had a solitary job as a security guard for many years. So like me, he was comfortable being alone and entertaining himself. Did he yearn for more socializing? That I will never know.

But what is clear to me is that once Alzheimer’s took hold of my father, he was whisked away into an isolating world, where we really could no longer connect with him in a meaningful way. And I saw that same isolation play out on the faces of every patient in the dementia ward of the residential facility where my dad spent the last year of his life. I remember so many residents reaching out, touching my arm, trying to communicate with me, hoping to make some kind of human connection. I often felt like I let them down when they shuffled away after an awkward, confusing exchange.

I hope there are more studies investigating social isolation and dementia, and I hope they take into account that both introverts and extroverts exist, and that the definition of loneliness is different for every human being.

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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 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 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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October 19, 2012 · 6:29 pm

The way he was before

Mom talks about Dad a lot, both before he had Alzheimer’s and when he was suffering from the terrible disease. But her favorite phrase to use when she talks about how much she misses him is, “The way he was before.”

Mom follows it up by saying she could never wish Dad back with dementia. She says it would be too cruel and too selfish.

I agree. It’s always difficult to let go of a loved one, but sometimes death is a release, and should be embraced instead of feared.

No doubt everyone who has ever had a loved one with Alzheimer’s has longed for a return to the way their loved one was before. It’s almost like a new way of indicating time: B.A. and W.A. Before Alzheimer’s and With Alzheimer’s.

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October 10, 2012 · 7:11 pm

The attack of the swollen arms

There are a lot of things you wish you hadn’t seen when a loved one spends time in the hospital. One image that I will never be able to erase is the sight of Dad’s swollen arms.

They were swollen because of excessive fluid. A simple enough medical phenomenon, but still disturbing for the average person to witness. It was even more grotesque because the rest of Dad’s body was so emaciated. His arms looked like they belonged to a linebacker, not a 79-year-old man with Alzheimer’s who weighed 116 pounds.

I remember holding Dad’s fat hands and stroking those swollen arms while Dad was under sedation and on a ventilator. While I had seen Dad’s personality transform into someone I didn’t know due to Alzheimer’s, I was now forced to witness the physical transformation taking place within Dad. It was a sobering moment.

When you walk along someone battling Alzheimer’s, you will witness such high and lows of life. The experience makes one appreciate the dull moments of one’s life even more.

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October 9, 2012 · 7:48 pm

Driving into the ditch

I’ve passed the ditch Dad drove into almost every day since I’ve been staying with Mom in Ruidoso. It’s not very deep, but enough to give one a bit of a scare.

It was the beginning of the end for Dad behind the wheel. Families dealing with dementia often have a big struggle over getting their afflicted loved one to “hand over the keys.” In America especially, the car is such a symbol of independence. For those with Alzheimer’s, having to give up such a huge part of their independence is soul-crushing. While mental and physical faculties are usually quickly fading during the mid-stages of Alzheimer’s, people are usually still self-aware enough at this point to grasp the loss, and what the disease has claimed from them. It’s a heartbreaking moment.

For Dad, that shallow ditch was the beginning of the end of his driving career. Always a slow, careful driver, the big boat of a car he drove gently went off the road and settled into the lower ground. Mom and Dad were physically fine, but mentally and emotionally, they were wrecked.

The car set next to their condo for many months, until someone mentioned how long it had been sitting there. It went to the junkyard. Now the only memories of the car is a set of car keys and some old oil and brake fluid sitting in the storage closet outside.

The ditch represented more than just a minor car accident involving a man struggling in the mid-stages of dementia. My parents’ independence also took a hit, and sank along with the spinning wheels into the ground. They would manage, thanks to the small but very efficient public transit system in their small town, but that unplanned meeting with the ditch transformed their lives forever.

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October 1, 2012 · 9:10 pm

What would Dad think?

Mom has posed the question to me lately: If Dad were still alive and didn’t have Alzheimer’s, what would he think about her being diagnosed with colon cancer? I’m sure he would be surprised, considering he was the almost lifelong smoker and Mom lived a pretty squeaky clean life. I also don’t think Dad would have been able to accept the caregiver role. Let’s face it, sometimes stereotypes are correct, and women generally are better and more natural in the caregiving role. That doesn’t mean that there are not wonderful male caregivers and females who would run from the caregiving role. I myself would never have imagined myself in a caregiving role. Maybe for animals, but definitely not for people. But here I am, and doing a decent job. (Mom and I are reaching the point where we are getting on each other’s nerves, but that’s understandable after a month.)

My parents long ago, before disease caught up to them.

I’m sure Dad would be concerned and worried and would faithfully drive Mom to whatever appointments she had to go to. He would go out and get takeout food for Mom. But I can’t imagine Dad jumping in and helping with Mom’s colostomy bag. No way! And that’s not necessarily a criticism, but just the way that I see my parent’s relationship playing out if things had ended up differently.

I think Dad would have been scared to death of losing his rock. My mom pretty much managed my dad’s entire life so I think he would have done everything he could to keep her around. He would have been lost without her. Mom is more capable of managing on her own, but there’s a part of her that is still lost without Dad.

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September 20, 2012 · 7:26 pm

9 months since Dad died

It’s hard to believe that it has been nine months since my dad died. So much has happened this summer, and so many of the events have reminded me of Dad.

I never would have thought that I would be taking care of Mom now, who is facing serious illness herself. I had hoped for a respite from illness, for both myself and especially for my mother. Alas, that was not really meant to be.

One of my favorite photos.

Even though I have been so busy tending to Mom these past few months, I have been keeping up with all of the Alzheimer’s events taking place this month in honor of World Alzheimer’s Month. Now that I’m spending so much time with Mom in my parents’ home, memories of Dad are everywhere. Mom still misses my dad dearly and talks about him every day.

So even though Alzheimer’s disease separated Dad from us over the last year of his life, he is still in our hearts and memories every day.

I’m keeping all of those who have dealt with Alzheimer’s in their family in my thoughts.

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