Tag Archives: caregivers

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 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 18, 2012 · 7:18 pm

Fleeting moments of connection

I read a moving blog post today about someone with Alzheimer’s who pleasantly surprised their family caregiver with a rare moment of lucidity. They were able to express their love verbally before Alzheimer’s moved back in and took the light out of their eyes, returning them to a glassy, blank stare.

For most of us, these lucid moments are few and far between.

This made me think about the last lucid interactions I had with my father. He was at the point where he was barely able to verbally communicate. He would sometimes be able to utter a few words that made sense, but most of the time, he carried that sad, faraway look in his eyes. But I remember that moment so clearly in the hospital room, when Dad’s eyes lit up with recognition while I was holding his hand.

“Oh, there you are,” he said, as if startled by this temporary retreat into reality.

“At first I couldn’t see you but now I can,” Dad said with a wan smile.

I knew that was the moment to say what was burning in my heart. “I love you Dad,” I said, slowly, clearly.

“I know you do,” Dad said. Then he began to drift away from me, back into the isolating world of Alzheimer’s.

But it is the moment of love that I remember the most.

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December 15, 2012 · 8:33 pm

The caregiver’s curse

Mom is recovering in an amazing fashion from her major surgery that was just performed yesterday. The surgeon came to check on her today and sketch out a plan for the next few days.

Mom took the opportunity to tell the doctor about how she had cared for Dad at home for 2-3 years until his dementia became too much for her to handle at home. She had been healthy for 74 years, and then all hell broke loose.

The surgeon nodded sympathetically. “I have heard so many stories just like yours. There’s a certain level of adrenaline that kicks in to handle crisis situations, and surprisingly, that level can stay quite high for long periods of time. Then once the loved one dies, the caregiver completely loses that adrenaline boost, and that’s when sickness can kick in.”

It seems particularly cruel that the reward for doing something so selfless and loving as caring for a loved one with a disease can end up causing you to get sick, but that is reality.

Even doctors are admitting that caregiving can be hazardous to your health, but what real alternatives are there? Residential facilities are extremely expensive in the U.S. and out of the financial reach of many families.

I’m an only child. My father passed away a year ago. My mother is now sick. I quit my job to take care of her. Sure, I could put her in a facility and her life savings would be gone in a few months. Home nursing options are limited to a couple of visits per week in the small, rural town Mom lives in. I live in a big, expensive city. There are no easy options here.

We must do better for our elderly, and their families. We need more support, emotionally, physically and yes, financially.

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October 26, 2012 · 8:02 pm

“Your mother is driving me crazy”

If you have been following my blog over the past few months (which I greatly appreciate by the way) you know I have been serving as a caregiver for my mother, who was diagnosed with colon cancer. She has made great strides in her recovery. Tomorrow, I’m going home for hopefully a three-week respite until the week of Thanksgiving. I know there are caregivers that never get a respite for years while caring for family members, so I am indeed grateful.

That said, Mom and I are like oil and water. Mom is an extrovert to the extreme; I’m an introvert to the extreme. We were never meant to live together for an extended period of time as adults. I’m a very independent person that, at 38 years old, balks at the idea of my mother telling me what and when to eat, what to wear and how to act. Mom was used to having my Dad to cater to for 40 years, and he was extremely dependent upon her. The man could not have made a cup of coffee for himself. Their relationship was a sign of the times, where the man worked outside of the home, and the woman was the queen of all things domestic.

I know it has been hard for Mom to adjust to losing a great deal of the personal control she had over her domestic life. However, as caregivers know, that doesn’t mean you allow yourself to be bullied. Setting boundaries is a very important step for caregivers, and I have stuck to mine, even if Mom has been displeased with having to deal with her adult daughter versus the little girl that she forever sees in her mind.

So bottom line, neither Mom or I are saints. We get on each other’s nerves, and that’s just the way it is. But through the most difficult of times, I have thought about one of the last sane things Dad said to me, as I was departing from a brief holiday visit a few years ago. I couldn’t wait to get away, back to my life. I told Dad to take care. Dad said, “Your mother is driving me crazy.”

Now, I’m not blaming Dad’s dementia on Mom’s control freak ways. As I said, Dad was very dependent upon Mom, long before the Alzheimer’s set in. But living with my mom these past two months does give me a better appreciation of what Dad experienced. I think Dad was much better at tuning out and letting things just roll of of him than I am.

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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 12, 2012 · 8:19 pm

The surprise at being called a caregiver

When Mom took care of Dad at home those first few years he had dementia, I don’t think Mom considered herself a caregiver. She was simply being the dutiful, loyal wife, taking care of her husband of almost 40 years. It was automatic, no title necessary.

I feel the same way now. I’m just a daughter taking care of her mother in need. I guess since I quit my job to take care of Mom, if someone asked me what I do for a living, I might say “family caregiver” since I’m living off of Mom for now. 🙂

So today it was odd when I received a discount for being a caregiver. It’s nice to know that caregivers are recognized in this local community (even if was just a dollar or two of savings.)

So yeah, I guess I am a caregiver. It still sounds odd, but I guess I will grow into the title.

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September 7, 2012 · 8:48 pm

Weekend of the unknown

It’s my first weekend as a full-time caregiver. Yikes!

To be fair, Mom is doing pretty darn well on her first full day back at home. She mostly made her meals for herself today, and is getting around the condo just fine.

On the other hand, her INR levels spiked to a somewhat disturbing level today (fun with Coumadin & blood clots) and we had another colostomy bag leakage. So yes, ups and downs, but I’m used to that by now.

But now, I get a taste of what Mom went through as caregiver to Dad for those last few years of his life. Even though my mom has lost a bit of her mental sharpness, it is so much easier to be a caregiver for someone who can and wants to follow instructions. I can only begin to imagine what Mom had to endure with Dad, who was non-compliant due to his dementia.

That’s not to say that Mom’s motor-mouth and other quirks don’t drive me a little crazy. They do. But then they always have. And that’s the key. Mom’s been through a lot physically, but she’s still Mom emotionally and mentally. With Dad, we lost him mentally more than physically at first. I think as a society we are more equipped to deal with the crumbling of the physical body versus the disintegration of the mind as we grow older.

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