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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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

Dementia is a Full-Time Job

If you feel like you’re drowning in paperwork, phone calls and all the other “stuff” that comes with taking care of someone with dementia, you’re not alone. It’s never ending.

The challenge is to keep all this “stuff” in perspective and not let it overshadow the person you’re doing it for.

For me, dealing with my dad’s finances and legal issues, educating myself about his condition, figuring out who all his doctors were, and updating family and friends about his situation . . . It was a full-time job.

At the same time, I was heartbreakingly aware that dementia had stripped away my dad’s independence and sense of purpose. He was hurting.

He needed to know he was still valuable and loved. As much as possible, I wanted that to be my priority.

Not that he made it easy! There were days I would have preferred to wait in line at the Social Security office or to balance his checkbook than to visit him and be pelted with his accusations and complaints.

But he was a good, generous, hard-working person all of his life. He deserved to be acknowledged, appreciated and loved – regardless of what dementia was making him say and do on any particular day.

Ultimately I knew that the paperwork could wait; my dad couldn’t.

So, I prayed for patience and strength. I prayed a lot! I had a few “nervous breakdowns” along the way, but I survived.

It’s been several months now since my dad died. I’m still not done with all the paperwork, but I know this too shall pass. In the meantime, I am grateful for the hours and days I was able to be with him.

 

 

My dad with me and our dog Trixi - 1965 or so.

My dad with me and our dog Trixi – 1965 or so.