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.

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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.

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

What’s the Difference between Assisted Living and a Nursing Home?

Basically, there are two different types of care-homes for seniors who are not able to live on their own anymore: “Skilled Nursing Facility” and “Residential Care Facility for the Elderly.”

It’s a little confusing though, because, in addition to these “official” names, there are many “common” names for each option. On top of that, people  tend to use the names interchangeably – confusing matters even more.

Skilled Nursing Facilities are for people who require 24-hour nursing or medical care and supervision. These days, they are primarily for rehabilitation: For example after a stroke or a broken hip.

Some of the more common names for Skilled Nursing Facilities are:

  • nursing homes
  • convalescent homes
  • rest homes

Although some people with dementia require 24-hour supervision, that need is not considered “medical,” so dementia alone does not qualify someone for nursing-home care.

Nursing homes aren’t usually equipped to handle dementia-specific issues like wandering.

A Residential Care Facility for the Elderly (RCFE) is the more common option for long-term care for someone with dementia. RCFEs are also called:

  • assisted living (usually the big, apartment-like setting)
  • board and care (a smaller setting or private home)
  • memory care (dementia-specific)

Although some RCFE communities have a nurse on staff, they are not a medical setting. They provide care and supervision. Their services include meals, socialization, and assistance with the “activities of daily living” (ADL): Dressing, personal hygiene and medication management.

Some assisted living communities specialize in dementia care. Some have a designated area for residents with dementia. Some are not set up for dementia at all.

As far as the cost goes, Medicare and other health insurance plans pay for some skilled nursing (all sorts of rules and restrictions, of course) but not for assisted living.

There are organizations that can help you sort through all the options and find the right placement for your loved-one. Their help is free; my understanding is that they get paid with a finder’s fee from the care-facilities. Senior Care Solutions is one I’ve worked with (and was very happy with) in the Sacramento area: www.seniorcs.com.

* Disclaimer: I live in California. The terminology may be different elsewhere. If so, please share; I’d love know how things work where you live.

My dad with his mom when she was in a nursing home after she'd had a stroke (sometime in the 1990s).

My dad with his mom when she was in a nursing home after she’d had a stroke (sometime in the 1990s).

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.

Why Should I Go to a Dementia Support Group?

After spending all day dealing head-on with dementia, the last thing I want to do is spend an evening sitting around and sharing my feelings about it with a bunch of strangers. I want to get away from dementia, not spend more time talking about it!

That was my thinking the first several months after entering the world of my dad’s dementia. But at some point, out of desperation or politeness – I’m not sure which – I finally accepted an invitation to a support group meeting, and I was pleasantly surprised. And now, even though it’s been several months since my dad died, I continue to attend the meetings.

Yes we share “feelings,” but it isn’t a pity party. The all-encompassing sadness of slowly losing a loved-one to dementia is well understood by everyone there; it isn’t necessary to explain or dwell on it. This allows us to move past “poor me” and onto “How do we get through this?”

There is comfort in knowing you’re not alone in the journey, but there are practical benefits to a support group as well. The other members have “Been there – Done that.” They have current, local referrals and information. There is always someone who has experienced something similar to your current situation and can offer advice or encouragement.

The support groups I’ve gone to are hosted at assisted living communities with dementia care; they are open to anyone who wants to come. The Alzheimer’s Association website (alz.org) can also help you find a group.

And you don’t have to be a family member to benefit from a support group; if you care about someone who is dealing with dementia, the insight and information you pick up will be a blessing.

 

Susan Plath McKee

                                              Susan Plath McKee

What’s the Difference between Alzheimer’s and Dementia?

What’s the difference between dementia and Alzheimer’s Disease? The two terms tend to be used interchangeably, but there is a difference. Here’s a quick clarification.

Dementia is an umbrella term that describes a set of symptoms.

Alzheimer’s is a disease and is the most common (but not the only) cause of that set of symptoms. Strokes, brain injuries, and other diseases can also be responsible.

Sometimes, dementia is the result of a vitamin deficiency, hormone imbalance, or medication interactions; in those cases, it may be reversible.

All dementias are not the same, because different diseases and conditions attack different parts of the brain.

In general, though, the symptoms that make up “dementia” are memory loss along with personality changes, problems with communication, or impaired reasoning. Occasional forgetfulness or grumpiness is not dementia. When a combination of these issues becomes severe enough to interfere with normal daily functioning, then we’re talking about dementia.

Short-term memory loss is sort of a hallmark of Alzheimer’s Disease, so that’s what most people think of when they hear “dementia,” but depending on the part of the brain being effected, dementia might manifest itself with things like a short attention span, poor judgment, angry outbursts, inappropriate sexual behavior, loss of peripheral or depth perception, inability to find the right words, not recognizing familiar objects, or asking repetitive questions. The important point is that it’s not just memory loss.

Whatever you call it, and whatever the cause, dementia is a sad, difficult experience for everyone involved. Knowing some of the basics of what it is – and what it isn’t – allows us to be more helpful and compassionate to those afflicted with dementia and to those who are caring for them.

Please spread the word.