Category Archives: Memories

January 7, 2013 · 7:19 pm

If we had kept Dad at home

The Alzheimer’s Prevention Initiative is seeking those willing to talk about why they signed up with the registry. As I indicated that I would be wiling to speak out for the cause, I started thinking about my reasons for being an Alzheimer’s awareness advocate. The obvious reason is because of my father’s battle with the disease.

But I also hope to encourage others to not make the same mistakes I made. #1: The rare visits. If I could go back in time, I would have visited more, both when Dad was still at home and when he moved into the nursing home. #2: Being uncomfortable around Dad’s unpredictable behavior. If I had it to do over again, I would tell my former self to get over it and embrace the now, instead of regretting that Alzheimer’s had stolen much of Dad’s former self.

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It got me to thinking about one aspect of Dad’s care that I never really thought about before too much. Wonder if Mom and I had somehow managed to keep Dad at home, instead of him being transferred to the nursing home for the last year of his life? I most likely would have had to quit my job, but hey, a year and a half later, I quit my job to take care of Mom. Maybe somehow with home health care, we could have managed Dad at home, even as his Alzheimer’s progressed.

This is one aspect of Dad’s care that I don’t regret. I think the stress of trying to care for Dad at home could have broken our family apart. And while I was not fond of the medications Dad received at the nursing home that turned him into a zombie, at home, he may have refused to take any medications, and who knows if those angry outbursts would have become more violent and dangerous?

I know there are many families who do keep their loved ones with Alzheimer’s at home and care for them until they pass away. I admire and respect that choice 100 percent. I think family caregivers need to receive more financial and community support. But on the other hand, I also respect the choice of placing your loved one in a good facility, where they can receive the supervised care they need.

One suggestion I would make

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January 4, 2013 · 6:56 pm

The Memories Project on its one year anniversary

I can’t believe that I have been blogging for The Memories Project for one whole year now. I stuck to my personal goal of a blog post each day for one year, and despite the many challenges of this year, I was successful! Certainly not all the posts are award-worthy, but just the act of writing every day was quite beneficial for me. It allowed me to express some of my grief, and also kept me disciplined as a writer.

I’ve learned a great deal about Alzheimer’s and dementia over the past year. I’ve read many articles about medical studies and new treatments which offer some hope. I’ve also read many heartbreaking personal stories, from caregivers and family members who have had Alzheimer’s touch their lives. There are so many brave souls out there, who behind closed doors, deal with the demons that dementia can unleash. For many, their struggles go on silently, with no outside help.

The last photo of Dad and I together, July 2011.

The last photo of Dad and I together, July 2011.

One of my reasons for beginning The Memories Project was to showcase both the horrific and the tender moments that Alzheimer’s can create. I wanted to be a voice for others who were too overwhelmed with caring for a loved one with dementia at the moment, by sharing my own story.

The biggest reward of doing the blog has been all of the wonderful fellow bloggers I have met online. I have smiled and shed tears after reading the posts from Alzheimer’s family caregivers. While every experience is unique, there are some common issues that many of us deal with.

Now that I have spent a year telling my father’s story through my memories of him, this year, I want to turn my spotlight on to others who are dealing with Alzheimer’s in their families. So The Memories Project will continue, as I turn my attention to Alzheimer’s advocacy.

Thanks to the loyal core of readers who have joined my on this blogging journey over the past year. I so appreciate your kind comments and support.

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January 3, 2013 · 7:17 pm

Grief doesn’t necessarily get easier

When you lose a family member, well-meaning people usually say that things will get easier as time goes on.

But I don’t think that’s entirely true for everyone. Certainly, time marches on. But how one reacts to a death of a loved one, how they process their grief, well, that’s really a very individual process. I’m sure there are plenty of statistics and surveys out there that say generally speaking, people’s grief lessens after x amount of time. I think most of us know that when it gets personal, stats go out the window.

Mom and Dad in Ruidoso.

Mom and Dad in Ruidoso.

I’ve been thinking a lot about Dad lately, and that is understandable. The one year anniversary of his death was December 20th. Then it was the holidays. Certainly I have not been sitting curled up in a ball crying my eyes out with grief, but the pain still ripples through my heart. The guilt over what I would have, should have done differently still is something I’m working through.

Mom also remains grief-stricken, so I have to deal with that as well. On New Year’s Eve, she found a copy of the message she wrote in the 40th anniversary card she gave to Dad, the one she had cremated with him. While everyone else was ringing in the new year, Mom was grieving.

Tonight, she broke down again, letting me know she tells Dad every day that she loves him. Her message is always the same. She misses Dad dearly, but the way he was before Alzheimer’s. She could not wish him back the way he became with dementia.

I agree.

So for some people, grieving the loss of a loved one does become easier. For others, it may change shape and form, but it is still a pain buried deep within the heart.

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January 2, 2013 · 6:13 pm

Dad trying to keep warm

It’s been a bit chilly here lately, and when I stop to rub my hands together to warm them, I can’t help but think of Dad. I can still see a crystal-clear image in my mind of Dad standing outside our apartment building, before or after a smoke, and the dramatic way he would rub his hands together. “It’s cooold,” he would exclaim, though southern California winters were as mild as they could be, especially compared to his childhood in Belfast.

mittens

When my parents moved to the mountains of New Mexico, Dad experienced bitterly cold winters for the first time since his young adult days in England and New York City. I don’t remember him ever wearing gloves, but he would wear a big bulky jacket that threatened to swallow him whole. And I can see him standing by the car, the last one he would ever drive, and rub his hands together, fast and hard, trying to keep them from going numb.

My hands are always the first thing to ache when I’m out in cold weather. Still, I rarely break out the gloves. I just instinctively rub them together, though the warmth it generates may be more nostalgic than anything else.

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January 1, 2013 · 5:31 pm

What the new year will bring

With a new year comes feelings of anticipation and trepidation for many of us. Especially as caregivers, sometimes the future can seem bleak, without a light at the end of the tunnel. While I’m all about planning ahead, sometimes we must live in the moment.

After all, none of us are guaranteed more than the very breath we are taking right now.

2013 new year sparkler

I am torn between trying to embrace each moment and each day with also trying to prepare for my future as Mom’s caregiver. I also want to continue the project I’ve started to honor my father, and all of those who have battled Alzheimer’s. These obligations must be balanced with my need to earn an income again as well.

It’s a tricky balance. The road map for caregivers is littered with unknown situations and destinations. The line between a loved one being able to live independently to needing assisted living can be murky.

A year is nothing more than a new set of numbers on the calendar. There’s nothing magical about a new year, but it is as good a time as any to refocus our minds and efforts on the important things in our lives.

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December 31, 2012 · 6:35 pm

Reflections on New Year’s Eve

Dad was not the type to celebrate on New Year’s Eve. In fact, he would usually sink into a brooding mood. He would sit quietly, sipping his spiked egg nog while the countdown to the ball dropping at Times Square would be blaring on the TV. I’m not sure what brought on those dark moods. Perhaps Dad was disappointed in where he was in life? Did he think about and miss friends and family members who had departed this world?

I will never know the answer, but I am the type to wax nostalgic about the past year. With the year I’ve had, it would certainly be easy to brood the night away.

bubbly

But instead, I am trying to focus on the lessons learned during this difficult year. I am also looking forward to another year, and what I hope are new career opportunities that I have just started to get off the ground.

It’s not easy for me to try to look on the bright side, as I’m the eternal pessimist. But one can only take so much bad news. I hope I’ve fufilled my quota for awhile.

2013 doesn’t necessarily suggest lucky times, if you are the superstitious type. I’m not asking for 2013 to be amazing. I will settle for quiet and uneventful. Here’s to 2013 being the most boring year ever!

I’m wishing everyone a happy and healthy new year.

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December 30, 2012 · 6:14 pm

Midnight munchies curbs Alzheimer’s wandering?

I found this article about the steps a dementia care center took to reduce the amount of middle of the night wandering by their dementia patients very interesting. The solution was simple and not nearly as expensive as medication. They simply offered the wandering residents snacks (a mix of naughty and healthy food) and the midnight snacks really seemed to curb their wandering tendencies.

I’ve written many times before about how Dad would wander at the nursing home. He was in a secure dementia care wing, so he couldn’t get outside, but he could still fall, which was the concern of the nursing home referred to in the article above.

When Dad wandered, sometimes he would have to be lured back to his room by a treat. One time it was a lollipop. Another time it was a piece of chocolate. The small bit of sweets seemed to calm Dad’s wandering spirit, at least for that night.

As the article mentions, the staff provided safe snacks for their diabetic dementia patients as well. I fully support care centers such as these that get creative in trying to accommodate their dementia residents. Offering snacks and the cleanup involved creates a bit more work than just handing out pills, but there are some centers that actually care about quality of life, versus just trying to make patients into “trouble free” zombies.

We need to encourage more of these proactive care centers in our communities.

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December 29, 2012 · 6:57 pm

Shopping trip blues

Today I had to go grocery shopping for the first time since I returned from being with Mom in New Mexico. It’s a chore I don’t enjoy, as it aggravates my vertigo which can send me into mini panic attacks. I can’t wait to exit back into the fresh air (though today it was quite chilly.)

I can’t pass the magazine aisle without thinking about Dad, and how that was his safe place, where he would kill an hour flipping through the news magazines while Mom and I did the family grocery shopping.

veggies

That was before the Alzheimer’s. Once his mind began to fail, Dad lost all of his safe places. Reading went from Dad’s most enjoyable hobby to a foreign concept. Soon he was left with nothing but the ability to walk, to wander aimlessly with no destination and no concept of home.

Thinking about mundane tasks from a dementia perspective makes one realize that they are indeed fortunate to be able to go grocery shopping and run other pesky errands with their mind fully intact. Sometimes we truly don’t appreciate all of the little things we do to keep ourselves alive.

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December 28, 2012 · 6:04 pm

A sub sandwich jackpot

Mom is still doing well and is able to get out on her own to be around people, which is important to her to stave off depression. She still misses Dad immensely, and being so ill over the past six months has made the loss of Dad even more difficult.

She recently went to Subway, one of her favorite fast food places. Every time she goes, she has to tell me the story of how Subway played a key role in her hitting a lottery jackpot.

sub_sandwich

It was my parents’ anniversary, and Dad was in the early stages of Alzheimer’s. He was becoming more of a homebody as the disease began to progress, as having to place orders and pay for items confused him and stressed him out. He didn’t want to go out that night, but Mom insisted. And the only way she was able to drag him out of his burgundy chair and away from a classic movie on TV was by suggesting they go to Subway. Dad loved their meatball subs.

He relented, and well, the rest is history. Mom nabbed a winning lottery ticket and Dad enjoyed his hot and tasty meatball sub sandwich. Not exactly a romantic anniversary dinner, but definitely a memorable one!

Usually Mom doesn’t order the meatball sub, as she prefers something lighter like tuna salad. But she must have been feeling extra nostalgic the other day, as she said she ordered the meatball sub for herself.

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December 27, 2012 · 7:00 pm

New Year’s TV traditions

I pulled out my DVD collection of the original “Twilight Zone” series and have spent the day watching many of my favorite episodes. When I was a kid, it was a holiday tradition in our household to watch the “Twilight Zone” marathon that ran on New Year’s Day on one of the local channels out in L.A. There was also one on July the 4th.

It was one show that my parents and I really enjoyed together. My dad of course was fond of all of the war-themed episodes. I loved the ones with children (“Living Doll” was one of my favorites) and Mom liked the nostalgic look back at a time when she was a young adult in the world. Mom and Dad also loved to see their favorite actors and actresses in so many of the episodes. All of that talk bored me as a kid, I just wanted to watch the show without all of the chatter!

They would do a countdown based upon a viewer survey of the favorite episodes. We would always try to guess what would be #1 but we would usually all be wrong.

To this day, the show remains my all-time favorite and I love the high-quality storylines and great acting. It also reminds me of the enjoyable holiday bonding time we spent together as a family.

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