Jul 12, 2015

I Don't Want to Leave Her Alone in Memory Care, I want to help keep her active

The decision to place a loved one in memory care is always difficult, and often fraught with peril.

I don't want to leave her in memory care alone, Forget Me Not
By Carole Larkin
Alzheimer's Reading Room


I was asked by another geriatric care manager in Dallas to consult on one of her current cases.

A man has very recently placed his wife in a local memory care community, but she gets agitated and causes enough trouble at the community that the community was calling him to calm her down, and wanting him to get a prescription for a “sedative” to give her.

My colleague, the other care manager, and I spoke about allowing the woman to get “acclimated” to the community as her new home by not taking her out of there for awhile.

The other care manager wrote him an email to that effect. He answered her in the email below. She sent it on to me. Here is his email and my response to it. Her comments to me are in italics.

What are your thoughts??

The man who placed his wife in memory care writes in his email: (name changed for privacy purposes).

What are our goals now?

As I read your email, our goal is now to help Ann adjust to her environment. And I agree with that goal. However, in my mind, that is not our number one goal. We both know that Ann has lost her ability to do most things. She cannot play bingo or dominoes. She has lost her ability to sketch or read or even watch and follow a TV show.

The only thing Ann can still do to some extent is to converse with people, laugh with them and enjoy their company. She has always been a happy person and she still is, again to some extent.

Because this is really just about the only thing she can still do, my number one goal is to help her do this very thing for as long as she is able to do it. And, as you well know, this is definitely an activity and if she can still do it, let's capitalize on it for as long as we can. That, is the real reason I take her out every evening. 

Am I being selfish? I don't think so when you consider the alternative.

After their dinner time, the 5th floor basically shuts down. There is nothing, NOTHING going on.

I can't imagine what she would be doing from 6 o'clock until bedtime at 9 or 9:30, every evening, night after night. There are 10, maybe 15 people on the 5th floor and she sees them everyday all day. 

There is no conversation with them anymore at that time of the evening. There is no activities at that time of the evening either. At least when I take her out, we go to a different place every evening.

We talk and we laugh. That is what Lou Ann does best. 

Sometimes we meet with the golfing group and here again; she laughs and talks with them. Some activity is better than no activity.

And then to suggest that I not take her out of the building anymore  is not helping me accomplish my number one goal which again is to keep her mind as active as long as I can.

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By not taking her out of the building anymore means no more soccer games or gymnastic meets with grandchildren. Activity! No more going to Mass on Sundays at church where she may not remember people’s names but she still recognizes them and she talks and laughs with them. Activity!

By not taking her out of the building means no more beauty shop visits with her hairdresser who she has been going to for years. Or manicures and pedicures with her manicurist. These things are her very life, what's left of it. I cannot take those things away from her now.

Yes, I will admit that by taking her out like I do set her up for being agitated and frustrated and mad when I am not there. But that doesn't last all day. 

When she gets really agitated, the aids call me and Ann and I talk for about a minute or two and then she calms down. I have asked the nurses and the aids how she does after our phone conversation and they all say it calms her down. She is fine after those conversations.

Dr. T has prescribed Lexapro, one pill in the morning to help with her anxiety. And now Dr. T has written a prescription for Trazadone at 50 mg one every night. With those two prescriptions I think we can control Ann’s anxiety attacks during the day. I am wondering if she even needs both of them. 

I'm tempted to try the Lexapro by itself and see what that does. If needed, we can then add the Trazadone. I don't want to over medicate her. As Ann progresses down the continuing path of Alzheimer's and when she gets to the point of not recognizing me anymore, that will be the time for me to come visit twice a week. Not now.

You clearly have the best of intentions for the best life you can give your wife, and I applaud your efforts greatly. You clearly love your wife very much, bless your heart.

I think the problem is that you don’t realize that your mindset and the way that you view the whole dementia situation is inadvertently harming your wife’s self esteem, ego and whole life.

 If you look at what you are saying in the message, it is clear that you see your wife through the concept of loss (what she CAN’T DO) rather than look at her though the concept of what remains, (what she CAN DO).

I think you will find  that there are many, many things she can do if they are simplified enough.

Giving people with dementia the opportunity to do something and succeed in it does far more to give them pleasure and raise their own self esteem as they are succeeding at something rather than failing with it. After all, we all want to be successful at life, be engaged and have purpose and meaning to our day whether we have dementia or not. If we don't, then why get out of bed in the morning?

Try to understand that your wife can do many things in life, if they are just simplified enough to fit her current thought processes. That means changing a multi-step task or activity to a single step at a time task or activity, and judging the outcome of the task or activity not on the same basis as one would judge it if the person had no disease process going on in her brain. Let me give you some examples from your message.

You state that your wife can’t play bingo or dominoes. Okay, could she do a simplified version of dominoes like matching dominoes of the same color and not scoring the game?  (http://tinyurl.com/ouls7zy)

Could she match pictures of art work?

If she used to sketch, that tells me that she’s artistic in nature. (http://tinyurl.com/nrelktr).

Could she do watercolors with no regard to how “good or bad” the final result is, in our normal judgment of art? Just celebrating that she’s expressing herself by doing art (http://amzn.to/1JdcB6u).

If she can’t read books can she look at beautiful pictures of nature or children and talk about what she sees in the pictures with you or other people? (http://keepinmindinc.com/memory-magz/).

What else could you think of that she likes and used to do to simplify so that she could do something enjoyable, and do it successfully? You see, it’s all in how you look at things that can make the difference in her day and in her life.

Did you know that people, by the time they are appropriate for memory care, have a great deal of trouble following conversations (much like following TV shows)? They do. It takes a lot of effort for them and can be literally exhausting to “act up” to the level of normal people in regular or normal conversations?

Why do they try and “act up”? Well, it’s absolutely routine for people, whether they have a cognitive disease or not, to hide what we think are our flaws or deficiencies. We all do it, all the time. She’s no different.

If she doesn't understand the conversation, she’ll follow other peoples lead. If their laughing, she’ll laugh. If they appear to be listening, she’ll appear to be listening. She just wants to be “normal”, to fit in with regular people. Wouldn't you?

The difference is that it takes her so much more mental effort just to appear normal, than it does us.

Why subject her to that? What if she didn’t have to “act up”,  like she doesn’t with the people of her same cognitive level? Would that be easier on her?  That is essentially the purpose of placing her in a community with her peers. She is not as stressed as after awhile she knows that she will not be called upon to “perform”.

At some point, maybe even now, going out to soccer games and gymnastic meets with crowds of people there will over stimulate her senses because there will be more visual and auditory stimulation than her brain can process at one time and she will get anxious and agitated because she is overwhelmed.

Why would you want to do that to her?

A set routine will calm her, because she will feel in control of her world. She may not understand what is going on in the world, but she will understand that lunch comes next in her day. That’s another purpose of the memory care community, to stimulate her as much as she can tolerate given that disease will continue to progress.

You seem to be doing everything you can to keep her in our world.

A world that is increasingly ununderstandable, confusing, frustrating and effortful for her to operate in. Not because you want those results for her, surely, but because you might not understand the true nature of the disease she has.

With more knowledge and understanding of what the disease does to her, I feel sure your attitude will change.

The purpose of her going to memory care is to provide her a sanctuary so that she is not challenged by things she can no longer do. The point is that she feels comfortable in her own skin, whatever her skin is at that moment.

I hope you will receive this as constructive, and information based on experience.  It’s really meant to be helpful for you. My point here is you might have more to learn, so that you can show her love in a way that supports her through her journey.

I understand how you might be feeling. My own mother lived with dementia and in assisted living. So I know that the natural inclination is to try and stay involved. But sometimes, its best to listen to and understand the paid professionals that involved in the caring.

Carole Larkin MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementia care. She is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementia issues. Carole can consults with families via telephone nationwide on problems related to dementia. Her company, ThirdAge Services LLC, is located in Dallas, TX.

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