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What if Memory Care Isn’t the Right Choice for People with Dementia?

By Christy Turner September 12, 2017 Caregiving

At a certain point in the disease process, people living with dementia need to move into memory care. This common assumption just isn’t true – at least, not for everyone. As with most anything in life, financial resources create choices. The second, and perhaps most important, part to consider is willingness.

What Are You Hoping for?

One of the first questions I ask my client families is, “What are you hoping for?” Do you want to keep your mom at home with you until she needs help transferring and you know your back can no longer take it? Do you have a picture in your mind of your husband with you until his last breath?

Families almost always tell me they want to keep their loved one at home until they “have to go to memory care.” Typically, they say this because they’re unaware there’s any choice in the matter. Even without abundant financial resources, it’s important to remember that memory care didn’t always exist.

Point A is where you are now, and Point B is where you’re headed. My job is to help you navigate from A to B, with B being a destination you desire. If memory care isn’t it, it doesn’t have to be.

My job remains to sherpa you through the unfamiliar terrain no matter if Point B is memory care or home. Still not sure? Check out the sections below to help you get clear(er).

When Memory Care Is a Good Option

Sometimes, no one’s willing to step up. You can’t force others to become willing – even if you think they should be. Instead, thank your lucky stars if everyone involved is willing to be honest that this isn’t a commitment they can make.

Often, no one’s able to step up. For a variety of reasons, from financial to health to geography, sometimes it just isn’t possible.

The complexity is sometimes beyond the family’s ability to manage. The number one risk factor for developing Alzheimer’s disease is age. Typically, people who live into their 80s and 90s also have other health issues. Any of these alone can be challenging, but it can feel too complex when they’re all added together.

The primary care physician’s office can offer guidance and support in managing chronic conditions, but they can’t be there 24/7 in the way family care partners need to be. So, it really comes down to how much complexity you feel you can reasonably manage on a daily basis.

Social Needs Are Beyond a Family’s Ability to Meet

Some people do really well with 1:1 care, and others thrive in a social environment. My grandma Anna had Alzheimer’s disease. She cried when she was discharged from rehab. She begged my near-agoraphobic grandpa not to make her leave. She loved being around others and thought the whole experience was fun.

When Memory Care Isn’t the Answer

Nowhere is it written that memory care is a have to. If you have the desire to avoid memory care, and the heart to learn the skills you need to be a primary care partner, go for it! Don’t get bullied into doing something you don’t want to do.

If you need things done your way, you’re right to avoid memory care. No one will ever be able to replicate you. This isn’t to say you won’t find genuinely caring staff in memory care, but you know yourself. If you genuinely feel you’re the right choice, don’t be dissuaded.

Second-Rate Care Is Unacceptable

I’m in no way implying that every memory care out there is second-rate. However, if you’ve taken a look around and second-rate accurately describes the available care in your area, don’t bother.

You’ll be on edge the entire time your loved one is there, and the likelihood of you moving them home with you is almost 100%. Better to just skip the placement step, saving worry, confusion and money.

You’re Willing to Make a Commitment

People move through the disease process backward through time, roughly opposite of children’s developmental stages. Supporting them through this process requires at least a basic understanding of the disease and a bottomless reservoir of patience. Time off comes only through respite care you arrange. If none of that scares you off, proceed.

You’re Confident You Can Provide Better Quality of Life at Home

Better care at home sounds like a no-brainer, but isn’t always the case. Remember that quality of life is highly subjective and is defined by your person’s preferences.

Check out my presentation at the Alzheimer’s Association’s McGinty Conference last November on 9 Ways To Optimize Quality of Life (for both your loved one and you) for ideas and a fuller discussion.

Engagement throughout the day is a major factor in quality of life. Because engagement is a key way to reduce or eliminate dementia-related “behaviors” (aka “communication you don’t enjoy”), it can lead to your overall success with being able to avoid memory care.

Need ideas on how to keep your person engaged during the day? Sign up for the free email class. You’ll gain valuable insight plus ideas you can start using right away.

No matter what you choose, support is key. One way to get that is to continue the conversation here on Sixty & Me.

Have you had success with avoiding memory care? Did you decide memory care was the right choice? Please join the discussion below!

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The Author

Christy Turner is the founder of DementiaSherpa.com and has enjoyed the privilege of working with 1,123 people living with dementia and their families.

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