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.