A Beautiful Legacy

Dementia is a journey of struggle and sadness, but it is rich with examples of beauty and kindness.

Rick’s wife had dementia. He made the decision to care for her at home even though he knew it would be difficult and that it would change his life dramatically. With the certainty of someone who has thought long and hard, Rick explained, “Love is a decision.”

Caring for a loved one with dementia is heartbreaking, exasperating, humbling . . . Many things no one ever wants to experience. Being the primary, hands-on caregiver is herculean.

For Rick, normal activities became creative challenges.

His wife was unsteady on her feet but refused to use a walker. She did well at the grocery store, because holding onto a shopping cart provided stability; she didn’t resist, because it was something she was used to. So Rick started taking her to the grocery store every day.

He said, “It gets expensive, maybe $20 a day in groceries just to get her out walking.” Even so, it was a solution to the problem of how keep her physically active.

Did Rick take on this challenge because he loved his wife? Because she would have done the same for him if the roles were reversed?

Rick said his decision went beyond the two of them. He said, “The way you care for your loved-one is a legacy you leave for your family.”

He recognized that even if they were not directly involved, his children and extended family would be observing and considering his choices. The compassion and patience he exhibited (or not) would become part of their family “culture.”

Obviously, we can’t make a big decision like this based on what others might think. Realistically, it’s not always feasible and/or safe to keep someone with dementia at home. But for Rick, it was an option, and he decided to adapt and sacrifice – for his wife’s sake and for what it meant to his family. How beautiful that, in a time of pain and sorrow, he thought beyond himself with so much love and generosity.

Rick spoke at an Alzheimer’s Education Conference in Sacramento last year. I don’t know, one year later, if his wife is still at home with him – or even if she’s still alive. But I loved hearing his story and was grateful to add it to my collection of the many unexpected blessings of dementia.

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Quick Tips for Talking to Someone with Dementia

I like lists. This one is about communicating with someone who has dementia. It was given to me at a support group at my dad’s first memory care community. I was new to the journey at the time and was overwhelmed, so I really appreciated its simplicity and brevity. I hope it helps you.

Ten “Nevers” for Caregivers

  • Never ARGUE . . . Instead, AGREE
  • Never REASON . . . Instead, DIVERT
  • Never SHAME . . . Instead, DISTRACT
  • Never LECTURE . . . Instead, REASSURE
  • Never say “REMEMBER” . . . Instead, REMINISCE
  • Never say “I TOLD YOU” . . . Instead, REPEAT
  • Never say “YOU CAN’T” . . . Instead say, “DO WHAT YOU CAN”
  • Never COMMAND or DEMAND . . . Instead, ASK or MODEL
  • Never CONDESCEND . . . Instead, ENCOURAGE and PRAISE
  • Never FORCE . . . Instead, REINFORCE

(The creator of the list was not credited on the handout I received from the staff at Emeritus at Austin Gardens; please let me know if you know who it is.)

People used to get "dressed up" when they traveled on an airplane. This was taken in 1967 when my mom and dad were on their way to Germany.

People used to get “dressed up” when they traveled on an airplane. This was taken in 1967 when my mom and dad were on their way to Germany.

How to Handle “I Want to go Home”

What do you do when your loved-one lives in a memory care community and constantly demands that you take him “home”?

Logically, you know it’s not your fault he has dementia, but you feel guilty anyway. Every plea of “Get me out of this place!” is a stab to your heart. I know. It’s sad, and it sucks, and you want to fix it.

Remember, the decision to place him in memory care wasn’t made lightly. Several people were involved in the process, and the consensus was that it was necessary for his safety and long-term care.

It comes down to this: Taking him “home” is not an option. If it were, he’d be there now.

Eventually, he may accept this new place as “home,” and his heart-wrenching requests will end on their own. On the other hand, he may never accept /understand it, and “Get me out of this place!” could be his standard greeting every time you talk with him from now on.

So, what do you do?

The best advice is to try to “redirect” him. Basically, you acknowledge and respect what he’s saying but distract him by changing his focus strategically and quickly. You know it’s coming, so be prepared with some ideas.

Another approach is to make up a story. One of the standbys for the “I want to go home” scenarios is that “There’s a gas leak in the neighborhood, and no one’s allowed back until it’s fixed.” The theory is that this story buys some time and puts off the discussion “until the gas leak is fixed.”

Honestly, this approach almost never worked with my dad. He’d either see right through it, OR it would make him even more determined to go home, because he’d be convinced he had to be the one to go and repair the leak.

Whatever you do, do not try to explain (for the 100th time) why he can’t go home – that the doctors said this, that or the other thing. Do not ask him what he wants to do there at home – and then try to convince him that he doesn’t need to worry about that because you’ve taken care of it.

I promise you, no matter what you say and no matter how logically you say it, you will not talk him out of wanting to go home. The best you can hope for is that you might be able to distract him from focusing on it.

When it comes down to it, you just have to be patient and understanding.

If you think about it, it’s perfectly reasonable for him to want to go home. In his mind, “home” is a place where he didn’t have dementia, where he had independence, and where he could manage life on his own terms. So, of course he wants to go home!

Unfortunately, you don’t have the power to give him what he wants. The best you can do is give him what he needs – which is to be well cared for and safe.

This dairy farm in Iowa was my dad's home until he enlisted in the Marines.

This dairy farm in Iowa was my dad’s home until he enlisted in the Marines.

Crying is Good For You

Dementia will bring you to tears.

The good news? Tears are good for you.

“Being strong” is part of your job description when you have a loved-one with dementia. But dementia is a long, hard journey, and tears come with the territory no matter how strong you are.

A while back, I stumbled across an article on the internet called “7Good Reasons to Cry Your Eyes Out” by Therese Borchard. It says tears “are like a natural therapy or massage session, but they cost a lot less!”

The writer explains that crying releases toxins from the body and also stimulates the production of endorphins, our natural “feel good” hormones. The article gives credence to the old adage that you’ll feel better after a good cry.

In another online article called “The Miracle of Tears,” writer Jerry Bergman reports that “Suppressing tears increases stress levels, and contributes to diseases aggravated by stress, such as high blood pressure, heart problems, and peptic ulcers.”

In other words, if you don’t let those emotional tears flow every now and then, you increase your risk for all sorts of health problems.

So, although I don’t recommend opening the floodgates in front of the person with dementia (He is confused and generally feeling bad enough already!), don’t hold back the tears forever.

If your loved-one lives in a memory care community, I guarantee you the staff there is used to tears and won’t be at all shocked if you “fall apart” in front of them. They may even shed a few tears right along with you.

Otherwise, find a friend or just a private place where you feel safe to let the tears flow. I can’t even begin to tell you how many times I collapsed sobbing in my car after visits with my dad.

During my “breakdowns,” I doubted I could survive another day of my dad’s dementia. But I did survive. And it turns out that allowing those moments of “weakness” actually helped give me strength to endure.

“What soap is for the body, tears are for the soul.” – Jewish Proverb

My dad went through some tough times in his life. He always did what needed to be done, made sure everyone else was taken care of . . . He was as strong as they get, but even he shed a tear or two in its time.

My dad went through some tough times in his life. He always did what needed to be done, made sure everyone else was taken care of . . . He was as strong as they get, but even he shed a tear or two in its time.

What Do You Say To Someone With Dementia?

When someone has dementia or any serious illness, there’s a tendency to avoid him – not because we don’t care but because we don’t know what to say. We’re afraid we might make it worse by saying or doing the wrong thing.

It’s true that it can be a guessing game anticipating how a person with dementia will respond to you or how he’ll interpret what you say. But don’t let fear stop you from sharing your concern and affection. If your effort isn’t well received, you can try something different next time.

I’ve seen this poem on several websites but haven’t been able to discover who wrote it; the credit always just says “Author unknown.”

A Poem

Do not ask me to remember.

Don’t try to make me understand.

Let me rest and know you’re with me.

Kiss my cheek and hold my hand.

I’m confused beyond your concept.

I am sad and sick and lost.

All I know is that I need you.

To be with me at all cost.

Do not lose your patience with me.

Do not scold or curse or cry.

I can’t help the way I’m acting.

Can’t be different ‘though I try.

Just remember that I need you,

That the best part of me is gone.

Please don’t fail to stand beside me,

Love me ’til my life is done.

– Author unknown

Beautiful, isn’t it!

But even with this in mind, the question remains: What do you say?

It’s awkward and uncomfortable. How do you get past that?

I used to spend a few minutes praying in my car before going in to visit my dad. I’d say something like:

“Lord, I don’t want to go in there. This is hard. I don’t know what to do or what to say. I need your help. Give me patience. Let your loving kindness and your words flow through me. Give me strength to do the right thing.”

For me, prayer is always a good place to start. I’m curious though; how do you get past that fear and awkwardness so you can “be there” for the people you care about? What helps and inspires you in those emotionally difficult situations?

My daughter and dad at Big Trees State Park

Help! He Repeats the Same Stories Over and Over Again!

If your loved-one’s dementia compels him to repeat statements or questions over and over again, you’re not alone. Unfortunately, all I can tell you is that you just have to listen. And then listen again and again – as if you’re hearing it for the first time.

Saying “You’ve already told me that!” doesn’t help.

You can try to redirect or change the subject, but for the most part, you just have to grin, bear it, and play along. It’s one of the rules in dementia-land.

It’s also one of the gifts.

My dad had a few stories he repeated. He told them in almost the exact same way every time; it was like listening to a recording.

His grandmother had 18 children. Only 12 of them survived to adulthood. Eleven of the twelve got married. Dad remembered the names of all those aunts and uncles, and to prove how good his memory was, he proceeded to recite them all.

Many days, I sat through this rather lengthy story two or three times in one hour. (I’m no saint. Notice I didn’t say I listened to the story every time!)

I tried to distract him and change the subject, but once he got started, there was no stopping him. For whatever reason, he needed to tell the story. The complete story. So I let him tell it – without interruption.

I learned to take a deep breath and put on my “Oh really? That’s fascinating” face until he was done.

Another of his oft-repeated stories involved listing the names and backstory of his entire high school graduating class which, mercifully, only comprised 17 people . . .

Deep breath. “Oh, really? That’s fascinating.”

But here’s the gift.

When my dad’s voice became so weak and unintelligible that no one else could understand him, I knew what he was saying. The rhythm and facial expressions that went with his stories were still there. Having heard them a hundred times already, I recognized enough to respond appropriately and to ask questions – even though I knew the answers.

A few days before Dad went on hospice, he was in the hospital, and I was sitting next to his bed talking with him. A nurse walked in and asked incredulously if I could actually understand what he was saying. I chuckled to myself, looked up at her and then began to tell her about Grandma’s 18 children . . .

As I told Dad’s story, his body relaxed and his face brightened with a smile. (He had a great smile!) If that isn’t a gift, I don’t know what is!

I like to think it gave my dad peace to know that his story – a story that had been so important to him – was being told . . . And, more importantly, that he had been heard and would not be forgotten.

I don’t know why his brain got stuck on certain, seemingly random memories/stories, but I thank God for the patience to listen to them over and over again and for the opportunity to repeat them when Dad couldn’t do it himself anymore.

Yes, the repetitive story syndrome will test your patience, but it’s a test worth enduring. It won’t last forever, and it may turn out to be one of the sweetest blessings of the journey.

One of Dad's aunts: When telling his

When telling his “aunt and uncles story,” my dad always made a point of saying that Aunt Nora was his father’s “little” sister. Then he waited for the obligatory chuckle when the fact was revealed that, although younger, Nora was actually bigger than her brother.

Give Yourself a Break

field of purple flowers

 

When I became responsible for my dad’s care, I felt like I was instantly expected to know what to do. People kept looking to me for answers, but I didn’t even understand the questions half the time.

Recently, I was reading Self-Compassion in the Realness of Life, a blog about dealing with the ups and downs of life. It’s written by Kim Fredrickson, a Licensed Marriage and Family Therapist. What she wrote was what I desperately needed to hear when I was drowning in the newness of my dad’s dementia.

Give Yourself Permission to…

~ Not know what you are doing

~ Learn how to navigate this new life change

~ Have mixed feelings, even about something positive

~ Be resentful, angry, hurt and sad about this life change

~ Take time to gather information, talk to others and seek help as you navigate through what is new and unexpected

Say Some Kind Words to Yourself…

~ I’m overwhelmed right now, and with good reason

~ I’ve never been through this before

~ I’ll figure out how to do this new ______ a piece at a time

~ I’m not supposed to know how to handle something I’ve never been through before…no one does

~ I’ll look for whatever little bits of encouragement and support I can see

~ I’ll ask God and others for help, and look for unexpected answers

On Fredrickson’s website, she writes: “Most of us are used to showing compassion to others. We often have trouble showing that same compassion to ourselves. We often say things to ourselves we would never say to a friend.” That sure rings true to me! How about you?

Let’s make a deal, ok? Let’s be kind to ourselves.

Please share this with anyone who’s going through a rough time and needs encouragement. Thank you.

To find out more about Kim Fredrickson’s blog or her upcoming book Give Yourself a Break: Turning Your Inner Critic into a Compassionate Friend, visit her website: http://www.kimfredrickson.com (The excerpt above is from her March 27, 2015 post.)