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14 Things Alzheimer's Caregivers Want You to Know for National Family Caregivers Month

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November marks National Family Caregivers Month, a time when we recognize and celebrate those who take on the important responsibility of caring for a spouse, parent, child or other loved one. It’s an experience few can relate to unless they’ve done it themselves, and those who care for relatives with Alzheimer’s disease know firsthand the struggles and triumphs of caregiving.

We collaborated with the Alzheimer’s Prevention Initiative, led by Banner Alzheimer’s Institute, to ask our Facebook communities what they wish people knew about caring for a relative with Alzheimer’s disease. They revealed some of their biggest challenges as they navigate this often confusing time, as well as their advice for others who are just beginning the journey. Above all, caregiving is about support — both for their relatives and for themselves as caregivers.

Here’s what they told us:

1. “I cared for my daddy, and it’s a lot of patience, love and many old stories he could relate to… many pictures to look at together, music he can sing to, and the love given by many.”

2. “It is important to have a support system. Taking care of your own health is very important because being a caregiver to a love one can be emotional, physical and mentally draining… You will struggle with the truth, your faith, you will be angry, but it’s OK to feel this way, and for this reason it’s important to have your own support system!”

3. “It’s a 24-hour, day/night job. It’s a year-after-year commitment. The hardest job you’ll ever have. It can last for a decade, and… you will be changed forever!”

4. “After the initial shock of the diagnosis, you have to change roles of being the loving caring husband to being the caring loving husband. Your world is turned upside down but while you work on putting it back together, you have to comfort your spouse telling them that everything will be OK. Then you learn to live in the now and not dwell on the future. Your love for your spouse changes, it becomes stronger and more sensitive. All you took for granted has been erased.”

5.Remember all the times they read you the same story, sang the same song over and over just to see you smile… Do that for them. Never scold… Sit with them all night, hold their hand, climb in bed and hold them. Anything an every thing to bring a smile to their face, a light in their eyes, peace in their heart. Love them as they loved you.”

6. “Each person is different. Try what works and take time to listen to stories or music. Patience and love because some day you will miss them but will always be in your heart.”

7. “This disease is scary for them. They know something is not right, they feel it but cannot name it, so be kind, do not take what they say personally. This is one of the hardest things to accept and do.”

8.As a caregiver you need to enter their world. They say ‘green,’ you agree; they say it’s cold at 90 degrees out, agree. Don’t expect them to change. You need to change! When they tell you something, listen to their every word like it’s the first time you’ve heard it, even if it’s the hundredth time. Laugh and make them laugh! It’s their world we need to enter, not the other way around.”

9. “Be prepared for people to leave. Many won’t be able to accept the change of someone who was so vibrant and so interactive. The person with Alzheimer’s may not notice the change from their friends and family, but you sure will. It can be heartbreaking.”

10. “A lot of the time a caregiver may feel guilty for being snappy or in a bad mood because it is physically and mentally draining to care for someone with Alzheimer’s. Take time out for yourself, and you are not selfish if you do this because it’s OK to have a life outside of taking care of a loved one with this illness.”

11. “The primary piece of advice I give to caregivers is to look into nursing homes early. Don’t wait until you are desperate. Often there are waiting lists so it’s good to get on that list before you need it. This will improve you chances of getting the nursing home you want. It’s a hard step to take. It feels like a betrayal.”

12. “One of the hardest things for me is that I really can’t have a ‘bad’ day. My husband feels that negativity, and it makes for a much rougher day.”

13. “It’s an honor to care for my mother. It may be frustrating and heartbreaking at times. She took care of me, now it’s my time. Wouldn’t want it any other way.”

14. “One of the hardest things you’ll ever do. A lot of love and shared memories. Watching movies you’ve watched a dozen times. Physically and emotionally draining. You’re lucky if you have any help at all. The best part is helping someone who otherwise wouldn’t be able to help themselves. Also one of the most rewarding experiences one can have. The love you share is beyond words. At times it can be so lonely, but at the end of the day, I tried to be there every day for my father (1931-2013), and he was there for me.”

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Alzheimer's and the Long Goodbye

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In a fire, there are no goodbyes. The devastation is swift, crackling and cackling its way through a house before there is any time to reflect on what is being destroyed. Instead, there is only fear, and if you are lucky, survival.

So it was for my grandparents the night their house burned to the ground, leaving only a blackened, unrecognizable monument to the life they had once lived. They stood on the street, watching their memories go up in flames, knowing from then on life would never be the same.

It was all gone – the letters my uncle wrote home from college, the first tooth my father had lost. The train track my sisters and I had played with during our visits, souvenirs from travels to China and Stockholm, and mementos of service to their country had all but disappeared.

***

She was a grandmother like any other Catholic grandmother, pulling you aside to press clippings into your hand of stories she thought you would like, cut out of a magazine named after a saint. She stashed boxes of sugary cereal and Little Debbie treats in the pantry for your visits. 

And he was always like any other grandfather, telling stories of their adventures, falling asleep on the couch while watching football, oblivious to the noise and clatter that surrounded him, and tearing up as he hugged you at your graduation.

And so it went, birthday after Christmas after Easter after Fourth of July, until years later, a second fire struck, this one burning slower than the first.

***

In the beginning, the sparks were so small, my grandfather wondered if they were there at all. “What do I like to eat here?” my grandmother asked him, staring vacantly at the menu in one of their favorite restaurants. 

Next their daily talks began to disappear in puffs of smoke, their conversations vanishing and leaving her with only one line to offer at a time. 

“Why are you putting on your shoes?”

“What is this TV show about?” 

“I love you.”

Eventually the fire began to burn in full force, erasing memories that had long been stored in the attic of her mind. Names. Dates. Faces. One by one, they melted. 

Friends stopped by to see her. Family called to check in on her. “She looks great,” we said with a pat on my grandfather’s back. “She’s really not as bad as I thought she would be.” But then the door closed behind us, and he was left to hold up the weight of a home that was slowly falling down. 

***

There are two options when facing an Alzheimer’s diagnosis. The first is to move the love of your life into a home and let another shoulder the feeding, cleaning, and changing. The second is to care for them alone, hoping you will not be crushed in the process.  

Both options, of course, are unbearable. 

The second choice allows you to stay in your marriage as you have always been – together. The first takes the two of you apart, but gives you a chance to preserve the love that is left.

And so when the fire had taken most of my grandmother, she moved into a nursing home, leaving my grandfather to do things he had never done without her before. Take a trip. Go to the grocery store. Sing in the kitchen before 9 a.m., something she had expressly forbidden him to do. 

He didn’t want to do any of it.

*** 

Life is different now. Lonelier. He drives across town to see her, not every day, but most. She does not appear to know who he is, but smiles brightest when he enters the room. He goes to see her without knowing if she misses her husband or will even remember that he stopped by. He goes to see that she is well taken cared for, hair brushed and smiling. He goes because, despite of everything, she is still his wife and he is in love with her. He goes to hold her hand.

This fire is not swift. This time they are living in a perpetual farewell. 

***

Life becomes sweeter in the retelling.

Years after my grandparent’s house burned down, my uncle compiled a video of pictures he collected from friends and family – smiling in front of their wedding cake, their children playing in front of their first home, grandchildren dressing up in their old clothes. The pictures rolled by on the screen, their memories preserved by others.

***

There is an acute pain that comes from a life well lived, as without it, we would often be unaware of the great love we have experienced. But eventually, we all forget, and though our own loss and grief dies with us, the love lingers on.

My own children will never know their great-grandmother, a truth that makes me sad whenever I stop to think about it. They will see her pictures and hear her stories. Her blood and her love will pump through their veins, whether they recognize it or not. 

“I don’t want your Mama to die,” my oldest son whispered to his Papa, after learning his mother was very sick. And in these words of concern I realized there are pieces of her that will never fade away. 

***

When they returned to their house the next day, it appeared as if everything had been burned. It was only later, when the embers cooled and they were allowed to wade back through the house that the extent of the destruction could be confirmed. The structure had almost completely crumbled, and ashes were all that remained.

Sifting through the wreckage, they found one piece of paper that had been left mostly unharmed. Charred around the edges, their marriage license was still intact. 

***

I want to tell you more about the characters in this story. The fights over whose turn it was to do dishes at Thanksgiving, the time my uncles shot a potato gun into the backyard, the treats my aunts would bake for every holiday. 

But, there is no need. You already know this story. It is a story like every other.

In life and in fire we travel from the ashes of one loss to the dust of another. We go from pain to pain, learning our salvation – that through it all, love never ends.

Follow this journey on An Anchored Hope.

We want to hear your story. Become a Mighty contributor here.

 Front image by George Doyle, Top image by Valueline

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13 Things People Affected By Alzheimer's Want You to Learn on World Alzheimer's Day

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On World Alzheimer’s Day, patients, families and caregivers have the opportunity to share the ways Alzheimer’s disease has had an impact on them, and the work we still have yet to do in treating the illness and researching for a cure. With an estimated 5 million Americans or more living with Alzheimer’s, chances are you or someone you know is affected, yet many people don’t know what life with Alzheimer’s is truly like.

In honor of World Alzheimer’s Day, we collaborated with the Alzheimer’s Prevention Initiative, led by Banner Alzheimer’s Institute, to ask our Facebook communities what they hope people learn about the disease today. Their answers reveal how Alzheimer’s disease affects entire families, and above all, the importance of showing respect and love for the person behind the symptoms.

Here’s what they said:

1. “Alzheimer’s isn’t just being forgetful. It is a physical deterioration of nerves in the brain. The disease is painful for the patient and painful to watch loved ones go through. It affects so much more than just the patient’s memory.”

2. “Just because a [loved one] has it, it doesn’t mean [you] will lose their family member/friend altogether. It’s a struggle of course, but they’re still there.”

3. “It doesn’t only affect the elderly, and it’s not a black-and-white diagnosis. It comes in many forms.”

4. “Someone still lives inside the body of the mind that is overcome by Alzheimer’s. It may be a smile, a tear, a glare, a mumble, or a simple look… Don’t forget they are still there, and don’t let them alone thinking they don’t know or deserve your time.”

blurry hands holding with text that says someone still lives inside the body of the mind that is overcome by alzheimers

5. “They may not remember who you are or anything about their life, but they are still a person with real feelings and emotions.”

6. “As a clinician, it’s sad when family sometimes stop visiting because they feel there is nothing left of their loved one. It’s not true that there’s nothing left inside, we just need to find it.”

7. “Denial is the number one thing that can slow the process of a diagnosis. Don’t deny the signs.”

8.I want people to know how most of your friends seem to disappear! Maybe they feel uncomfortable and don’t know what to expect… He notices this and feels so bad for me because it affects my life, too. The spouse also [struggles with] this disease! Thank God for those special friends who have stuck with us!”

9. “I want people to understand how many different types of dementia [there are] and that not every case is the same.”

10. “When you lose a loved one to Alzheimer’s you mourn them twice: first when they are no longer the person you once knew and then when they actually pass away. It’s a brutal disease for everyone involved and it changes the way you view the world forever.”

11.Everyone asks the same question, ‘Does your dad still know who you are?’ I know the question comes from a place of love and curiosity, like it’s a gauge of some kind… I’d rather have people know what an amazing man my dad still is, so I focus on the good when I respond to the questions.”

12. “There is a lot of work to be done for those [who have] this terrible disease. At this point there is no cure, no hope, and very little resources and support for those living with Alzheimer’s and their caregivers. I hope in the very near future this changes.”

13.They don’t just fade away. They know something is wrong and [experience] shame they shouldn’t have to. Treat them with kindness and patience no matter what.”

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To My Grandfather Who Has Alzheimer's: I Will Not Let You Go

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I’ve never had a bad meal at your house. Ever. 

Until today.

You’ve never forgotten a character in the hundreds of stories you’ve recounted from your childhood at least a thousand times.

Until this year.

You were the one, just 10 years ago, who drove us all over the backwoods of Alabama and Georgia, introducing me to all your old friends, showing me family graves and letting me experience the wonder of your old stomping grounds through your eyes.

Banana pancakes and sausage are my favorite thing, but only when you cook them. “You know I stick strictly to a recipe” has always been your joke. And we all know it’s the furthest thing from the truth. I never knew about scratch cookin’ until you.

But this morning when I arrived to spend time with you and Nanny, you didn’t even remember you were supposed to cook us breakfast until she came downstairs half an hour later and mentioned it. I couldn’t find the nerve to tell you again.

Oh, the countless hours we’ve spent on the phone at night since I was a senior in high school. I wonder if my teachers ever figured out the night editor for the Birmingham News had written half my papers.

And when I was in college, you and Nanny would hop in the car and drive to Tennessee for the weekend. What a blast!

You — the great conversationalist — the greatest storyteller I have ever known. You, who never forgot a name, or a detail, or a story… it seems we’ll be the ones telling the stories from now on.

This morning, as we sat, mostly quiet, I thought back on all our heated discussions of theology. Everything I’ve ever learned about Calvinism and the restitution of all things came from you. You were the one person I could always talk to about the things no one is ever supposed to discuss: religion, politics and a myriad of current affairs. For years, you’ve been my teacher. My mentor. My friend.

Oh, how I wish we’d written that novel I’d always secretly wanted to co-author. And finished the family video project. And made that book of all your “isms”.

But we didn’t. And you are fading. And my heart breaks with every single visit. As I ease down that long dirt driveway, through the trees, bumping along, tears splash down on my  shirt and I feel like the Heavens should cry too, just to adequately set the scene.

The Vietnam war correspondent seems to be fighting a war of his own now. A war none of us truly understand, but we all see the effects of this miserable disease.

Alzheimer’s. I hate every syllable.

But you, ol’ bud, I will not let you go so easily. You didn’t let me go when I was a kid and took your pocket knife and cut up the interior of your Ford truck. You didn’t let me go when I was a pre-teen, playing in the old junk cars down by the barn and forgot and left the dog locked in there in the heat of the Alabama Summer. It’s a miracle the old dog made it.

But you didn’t let me go. And I won’t let you go either.

Even when it is frustrating as hell. Even when I sob my eyes out on the way home. Even when I am angry at the disease and want to avoid this foggy misrepresentation of such a sharp and brilliant man, I refuse. Because you have never walked out on me. Never been too busy for me. Always taught me with such patience and were willing to do anything I wanted to do, just to spend time with me.

So maybe it isn’t theological discussions any more. Maybe we don’t rant and rave about the plight of American politics. You just want me to find you pictures of blue jays and cats on the iPad. And that is perfectly fine with me.

Even if I have to write down your Facebook password a hundred times. Even if I have to make the long drive a million more times, just to turn your computer on (when you are convinced there’s something wrong with it). Even if I have to hear you tell me the same story three times in the same conversation. I’ll keep showing up. Keep cherishing the good times. And celebrating the moments when you surprise us all and show up fresh and sharp for a few brief moments.

For as long as that remains. I’m not letting go.

Maybe we’ll cook banana pancakes together next time.

 

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Remembering My Grandma, Even When She Doesn't Remember Me

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grandma eileen with a camera When I think of my Grandma Elaine, I will always remember the traditions we created. Every year, things were the same. I’d go up to her house in Maine for two weeks in the summer (sometimes with my friends). She’d come down to see my plays, even when I was in the ensemble. She was at most piano recitals and chorus concerts, even with the more than four-hour drive. Whenever I’d visit we’d sneak out to breakfast and catch up at a little diner attached to a department store in Brunswick, Maine. We used to get chocolate pancakes. I can still taste the hot cocoa.

After they closed, we would go to McDonald’s for breakfast because she loved the hot cakes. She used to talk to me about boys and how to go about my crushes. We used to get our nails done in the Tontine Mall. We would listen to Michael Buble and bond over her favorite songs. She talked to me about my future with no pressure.

She always cooked fudge, and I remember bringing some into my sixth grade English class when we were reading “Who Really Killed Cock Robin?” The fudge was a hit, but the book was disappointing (when you find out pesticides were the killer). She used to let me steer her car while she drove, as long as I didn’t tell my mother about it. I talked to her on the phone weekly, up until college, and even then I made sure I called. I always pictured her at my wedding and around when I had children.

Christmas was our most cherished tradition. My parents and I would drive to my grandparents’ house in Maine and would bunker down for a few days. Every year was the same: The day before Christmas Eve, we would eat at Richard’s German Pub with her cousins. On Christmas Eve, we would go to my great-grandmother’s church. After church everyone would try to convince me to open gifts early, and I would refuse. We would open one gift (always pajamas and slippers). Christmas morning we would open presents and she would make blueberry french toast, and we’d end the day with Gramp’s famous prime rib. In between our traditions, we would catch up on the past year and retell all our favorite stories while drinking eggnog. We loved our traditions and loved our memories together. We loved storytelling.

I think that’s why it was such a shock when I found out she had Alzheimer’s disease.

I haven’t seen her in almost a year now. At the time, I was about six months pregnant. She looked at pictures and ultrasounds with me. She even kissed my belly and was happy to see how big the baby was getting. I thought she was OK, a little bit off into her world but not as bad as I was expecting. The next day I saw her was a little harder. I painted her nails (like old times), and she wanted to pay me for being her nail technician, not realizing it was me. She had a moment of clarity as we left too, which made it difficult to leave. Now she’s unable to talk on the phone. So our phone calls and Skypes aren’t an option. She’s disoriented when anyone sees her. Aside from my mom, aunt and Gramps, no one really gets to see her anymore. This way, we can keep her comfortable.

I took everything pretty well and was able to separate emotions from everything. I’ve been able to be there as a support for my family. I’ve handled it better than I thought I would. Up until I went to call her to ask her about pregnancy and realized she wasn’t able to comprehend a phone call at the stage she’s in. Then there are the times when I want to share a story about my son or my growing career she believed in. I realize she won’t be the one answering the phone ever again. What really sucks about Alzheimer’s is, aside from few and far between moments of clarity, it’s irreversible.

Once, it was realistic to picture her at my wedding, at Jack’s birth and to think of Christmas in Maine every year. Now I don’t know if it’s realistic to even be able to talk to her one last time. I’ll probably never be able to call her again or gossip about boys and family members. I’ll never be able to hear stories from her or hear her sing along to songs she doesn’t know the lyrics to. I’ll never be able to cook fudge with her again or go to breakfast and talk. I’ll never go to Fat Boy’s Drive-In and get ice cream at the shop next door. I’ll never see another show with her or be able to perform for her again. She may never even be able to meet my son.

Alzheimer’s has taken my Gram away from me; however, she’s still here. That’s the hardest part of loving someone with this disease. I have to mourn her while she’s still living. People always talk about “not wanting to remember the person when they’re dying,” but never talk about not wanting to remember the person when they don’t remember themselves.

My Grandma Elaine is a very loved woman. She has always been strong for her children. She had a beautiful marriage with my Grandpa Ed and has seen such beautiful parts of the world with him. She has made so many people laugh. She gave back when she could and loved all of us the same. She was a wonderful woman. I regret not listening to her stories while I could and not always being there. I can’t make up for lost time anymore. All I can do now is help my family cope and help make her comfortable.

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