Caregiver Stories: Love is Action

Connecting family caregivers by sharing stories.

If you’re a family caregiver and interested in participating in a free, virtual support group, we’re kicking off our program this month.

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Thanks for tuning in. This week’s submission comes from J.S. Fischer, who runs her own blog titled ‘Early Onset Alzheimer’s’.

Love is Action

Thinking back, I can’t remember how many weddings I’ve attended. The last one, just a few days ago, was for my granddaughter, Whitney. During the ceremony, the minister said something that resonated with me. He read the standard verses from 1 Corinthians 13:4-8 that I had heard at numerous weddings. After he read the verses, he pointed out that love is described as actions, not emotions.

After the promises and commitment to a life together, I watched my beautiful granddaughter dance with her handsome groom. My eyes blurred with tears at how quickly the years have gone by. I thought of her first “wedding dance” when she was curled in her Grandpa Jim’s arm as she danced between us at her Uncle Bob and Aunt Stacey’s wedding.

The minister’s words about love being actions made me realize a truth. No matter how much someone professes their love, if their actions don’t reinforce their words, they undermine them. Too often emotions stand in the way of logic, self-respect, and in extreme cases—personal safety.

Thinking of love as action is an excellent way to begin a marriage and when the time or circumstances warrant, it is the only way to end a lifetime commitment. Love as action is the best way to describe the love of a caregiver for a spouse or other family member who has dementia.

Love is patient. A caregiver has to be patient and allow her loved one to do as much as he can for as long as he can. Yes, it might be easier and faster to do it yourself, but allow extra time for your loved one to perform daily tasks. As the disease progresses, it takes time and patience to provide the level of care that a person with dementia requires.

Love is kind. As a person loses his skills, it is important to appreciate what remains instead of complaining about what a person cannot do. To belittle a person who has dementia when they make a mistake would make as much sense as kicking someone’s broken leg because they couldn’t walk on it. Being kind will help you sleep better at night.

It is not easily angered. When a caregiver actively cultivates patience and kindness, it would follow that he would be less likely to become angry with his loved one. You may have to constantly remind yourself that it is the disease that is responsible for behavior problems.

It always protects. One of the main jobs of a caregiver is to protect your loved one. You are responsible for your loved ones safety and physical well-being. You may even be responsible for your loved one’s financial stability. A caregiver finds the strength to stand up against anyone who tries to take advantage or abuse her loved one in any way.

Love always hopes. When we can no longer hope for our loved one to regain his health, we can hope that he will have a good day. We can hope for a cure, so that a disease that stripped away our loved one’s talents, his quality of life, or her memories won’t strike others down.

Love perseveres. Dementia is not a sprint; it’s a marathon. A caregiver must have perseverance to provide loving care for years and years.

Love never fails. Unconditional love is about the only way to describe caregiver love. We all expect the love we give to be reciprocated, but when dementia is involved that may not be the case. When it comes to dementia, a parent or a spouse may become like a child. Instead of fading away, your love may become stronger as it evolves into a different kind of love—one that is action combined with the emotional memory you hold in your heart.

Thanks for reading. Please share this newsletter to help raise awareness. If you’re interested in sharing your own story, feel free to submit your post at this link.

Caregiver Stories: A Walk Down the Aisle

Connecting caregivers by sharing stories.

Thanks for tuning in. If you’re a caregiver and interested in participating in a free online support group, we’re kicking off our program in early August. You can visit our website, www.junecaregiver.com or sign up here—

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We had several great submissions last week. This one comes from Chloe Misner—

A Walk Down the Aisle

The fact that my dad even knows who Matt is feels quite incredible. My dad was diagnosed with early-onset Alzheimer’s disease 11 years ago, and my husband Matt came into our lives just three years ago.

What makes my heart soar is how they’ve become best buddies. My dad still lives at home with my mom, his soulmate turned full-time caregiver. While he cannot be left alone, dress himself, buckle his seatbelt, or even open the door, when Matt is around, his former self shines through. The two are downright squirrely together! 

When Matt and I got engaged, we decided to have a small ceremony, because we were worried about how my dad would handle a large crowd. While wedding planning, Matt’s only requests included a canoe full of beer and a food truck parked in the driveway. 

The only “must” on my list was for my dad to walk me down the aisle, and that I would wear red Converse chucks since my dad also rocked a pair when he married my mom 33 years earlier. We invited 80 guests to the ceremony. Locked arm-in-arm with my dad – with the biggest smile I’ve ever had in my life – I remember hearing my cue: “A Thousand Years” by The Piano Guys. This was it. The big moment. The chapel doors opened, and I locked eyes with the most handsome groom I’ve ever seen in my life. But then I felt my dad start to tense up. 

Even though there was a sea of familiar faces smiling brightly at us, my dad didn’t recognize a single face. “Dad,” I said with my biggest, reassuring smile, “do you see Matt down there?” I pointed down the aisle. “Today’s my wedding day; you just need to walk me down this aisle, and give me away to Matt. We’ve got this.”

Ever so slowly he began to shuffle down the aisle on our way to my groom. At this point, everyone was crying and smiling. The song may have repeated, but I can’t be sure. When we got to the front of the church, I gave my dad a huge hug; we had made it!  

With lots of happy tears in her eyes, my mom joined us to help my dad to his seat. Slowly, with a wink, I said: “Do you see mom? You’re going to go sit next to her while I marry this kid.” Choking back tears, my dad said, “I love you. I just love you so much!”

The day was about as close to perfect as they come. 

Alzheimer’s disease has taught me so much about living life to the fullest and cherishing the time I have with my family. Matt is such a special part of our family now, and I know my dad would have chosen no one else to be by our side as we battle this terrible disease.

Recently, my dad asked if I was “still hanging out with that astronaut guy.” I replied, “Dad, do you mean Matt? He’s a pilot, but yes, he’s my husband, so he’s stuck with me!” My dad comes to hang out with Matt and I every Thursday, even sleeping over, to give my mom a much-needed break.

The memories I made on that milestone that was our wedding day continue to fuel my fight to find a cure … but our “Thursdate” adventures are pretty darn special too.

Thanks for reading. Please share this newsletter to help raise awareness. If you’re interested in sharing your own story, feel free to submit your post at this link.

Caregiver Stores: Don't stop asking

Connecting caregivers by sharing stories.

Thanks for tuning in. If you’re a caregiver and interested in participating in a free online support group, we’re kicking off our program in early August. You can visit our website, www.junecaregiver.com or sign up here—

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We had several great submissions last week. This one comes from Kathy Ritchie whose mother was diagnosed with frontotemporal dementia in 2010.

Don’t Stop Asking About Mom

I have a message for my mother’s friends, family and acquaintances: She’s still alive.

My mother’s heart still beats. Though she might not be able to talk to you, walk with you, or share a laugh with you, she’s still here. She’s still alive.

If you spend any amount of time with her, you’ll quickly realize she’s here and like most living, breathing human beings, she craves touch. Hold her hand. I do. Yes, it’s hard, especially when she yells out; I hate watching my mother’s face contort in such a way that it looks like she’s in pain. I know she can’t be, but maybe, she knows. Maybe she knows she’s trapped inside a body that won’t follow her commands.

It’s a muggy Sunday afternoon when I visit my mom. It’s just after noon and she’s eating her lunch. The caregiver asks if I want to spoon-feed her the rest of her liquified meal. Next time someone talks to you about the preservation of human life, try thinking about the thing that really matters at the end of the day: DIGNITY.

Midway through her meal of watery green goop and off-white, milky muck, she chokes and coughs. Brownish goo comes flying out of her mouth and splatters all over my green shirt. I start to feel angry. Not at her, rather at those who have forgotten her. Her family and friends.

My mother did so much for so many people. When the church would call, she would pray, she would volunteer to give communion to the sick, she would give herself. When her family called with a crisis, she would pray, she would provide the means for them to literally have a better life… but now, she’s alone. No one asks for her, really. On her birthday, there were no calls, no e-mails. Nothing. It was another day for the rest of the world.

After lunch, I take her back to her room. Eventually, Mom is sound asleep. Good. I think she’d be yelling if she where awake. She inhabits a place somewhere between life and death. It’s a grotesque place.

I wonder if there is a heaven or a hell. I wonder what God will decide. I wonder if he stopped asking about my mom, too.


Thanks for reading. Please share this newsletter to help raise awareness. If you’re interested in sharing your own story, feel free to submit your post at this link.

Caregiver stories: One Day at a Time

Connecting caregivers by sharing stories.

Thanks for tuning in. As a caregiver, I hope that you find some solace in these stories. There are many of us out there. It’s important to be reminded that you are not alone. If you know of other caregivers, please share this letter with them so that they can read and share their own stories too.

You can also submit your own caregiver story at this link.

We’ll continue to highlight a new story each week.

We had several great submissions last week. This one comes from Janice Cagel—

“One Day at a Time”

It’s been nearly three years since my sister-in-law Angela called to inform me that my youngest brother Richard was heading to the Mayo Clinic to get a second opinion to confirm his Alzheimer’s disease diagnosis. I remember it vividly; the news stunned my family. We had no family history and no connection to Alzheimer’s. ‘How could this be?’ I thought. ‘He’s only 53!’ A few days later, the phone call came from Rich, confirming the diagnosis. He explained that he had cried it all out and was going to take a positive approach with his journey. He was optimistic and shared that he was overwhelmed by the outpouring of love and prayers from family and lifelong friends. It was official: Rich was going to take it one day at a time.

Alzheimer’s has surrounded me for nearly three decades. As a human resources director for Brookdale Senior Living, I am all too familiar with the disease from the training we’ve provided our associates over the years. I’ve seen many residents face the illness and have watched as the faces of their family members become unfamiliar. The idea that my own family is going to realize this is heartbreaking.

Ironically, during the timing of this news, I had been asked by my executive director to lead the charge in working closely with the local Alzheimer’s Association chapter to organize a team for the upcoming Walk to End Alzheimer’s. More passionate than ever, I jumped at the chance. My community involvement through the years had been extensive, and fundraising for various charities had always been something that came easy to me. Networking and raising awareness for a cause that I believed in was a no-brainer, especially when it involved a family member.

Our committee came together and we planned our first fundraiser: “Brews & BBQ.” The committee members were my Brookdale family. The event was held at a local beer pub where my daughter worked on weekends. We asked a friend who had a barbecue business to cater the food, and discovered he, too, had ties to the disease.

When we asked for silent auction items, no one said “no” to our requests. We were stunned to find that so many of these small business owners had a connection to Alzheimer’s as well. The event had a great turnout and we raised nearly $4,000!

We ended up having one of the largest teams at the Walk to End Alzheimer’s, raising nearly $5,000, and we were recognized as one of the top teams. The results fueled our committee to raise even more money this year. Our second annual Brews & BBQ moved to the barbecue owner’s venue, and live music was provided by friends who were musicians; we raised $7,000! Our Brookdale community associates held monthly fundraising luncheons, bringing our total to $10,000 – and halfway to my personal goal.

This past June, my brother, who lives in Colorado Springs, came to visit my family for three weeks. At first glance, you wouldn’t really notice any changes. He was in good spirits, conversational and enjoyed one of our luncheons where we had raised over $400. He was proud to see my involvement with our local Alzheimer’s chapter, just as I was proud to help lead the charge in his honor.

But the signs are there. Rich is learning to navigate the daily tasks we all take for granted. He asks for help when he needs it, like making change at a convenience store or packing his suitcase. Rich is enjoying a visit from his daughter who recently moved to Germany, and her son (his first grandchild) who was born last December. This past year he’s traveled to Mexico, Washington, D.C. and to visit his oldest son who’s in the Navy and stationed in Japan. Our dad, who talks to my brother daily, notices the slight changes with every phone call. But, again, Richie is determined to live his life and take it one day at a time.

Like my brother, I don’t quit. I’m determined and will continue to raise awareness and funds for the Alzheimer’s Association so others can live their lives to the fullest, too. I quickly learned that once you’ve been personally impacted by this disease, a team effort best enables us to pursue the fight against Alzheimer’s. We are taking it one day at a time…and we are all in it to end it.

Thanks for reading. In August, we’re starting a free, online, caregiver support group, with support from medical programs in Chicago. If you’re interested in participating, you can sign up here.

Caregiver stories: week 6

Connecting caregivers by sharing stories.

Thanks for tuning in. As a caregiver, I hope that you find some solace in these stories. There are many of us out there. It’s important to be reminded that you are not alone. If you know of other caregivers, please share this letter with them so that they can read and share their own stories too.

This week’s story comes from Meghan Higgins, who writes a blog about her experiences taking care of her mother. You can find more of her posts here.

Something Good

In my last post, I touched on how hard things were in the last few months. I had said that things “had been worse” but, in hindsight, the last few months were the hardest months yet.

For many weeks, I had minimal sleep due to the screaming and aggression from my mum, which would begin in the early hours of the morning. Almost every interaction she had toward me was negative. Most of the time, she wasn’t lucid enough to acknowledge my presence or anything that I said to her, and spent a lot of time in another world, appearing to react to hallucinations. It was both disturbing and hugely painful.

It was a scary time, and it got to the point where I had to have a lock on my door to feel safe.

I’m so relieved to say that, for now, we are on the other side of this. After meeting with my mum’s doctor, she was given new medication that has calmed her down and seemingly limited her hallucinations. It didn’t have an immediate affect on her mood but, one morning, completely unexpectedly, I came downstairs to hear my mum calling me by my childhood nickname. She looked at me, she spoke to me and she smiled. I was cautious of this being a one-off, as I know how cruel this disease is. But, though she isn’t always as lucid as she was that day, my mum is back to smiling a lot more. She is back to talking with us; to looking at us.

She is, however, experiencing more physical symptoms, which many people are unaware that Alzheimer’s can cause. These are gutting in themselves, and it’s very difficult to see my mum with afflictions associated with the very old.

That being said, I’m taking the good for now.

I, for one, had all but given up hope with being able to interact with my mum. I had expected to be forgotten altogether in the coming weeks/months. I still might be. But this time I’m holding onto the good, because I didn’t know it was possible for there to be any good. I’m enjoying the whisper of my mum that is left, and the love she still has left to give.

We hope you enjoyed this story. As always, you can also submit your own caregiver story at this link. We’ll continue to highlight new submissions from next week.

If you’re interested in a pilot program for online caregiver support groups, submit your email and the subsequent form at this link.

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