Category Archives: dementia

The Most Difficult Dementialand Post I Have Written to Date (aka What Dementia has in Common with Depression)

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This was not the post I intended to publish this morning. In fact, I have a post written on police officers and how they work to help those with dementia…but that has to wait until next week.

My heart is somewhere else right now.

Wednesday there was a suicide on the college campus where I work as a professor. Her name was Katie, and I didn’t know her. In fact, this was her first semester here. Her peers and professors tell me she was well-liked and bright with a smile that lit up a room. She had plenty of friends and a supportive family. Yet, she struggled with depression and anxiety.

The more I hear about Katie, the more I relate to her. I even lived on the same residence hall floor where Katie lived and died. I’ve never been in a position where I considered taking my own life, but I was once a college student with clinical depression. I felt like a failure because, despite knowing I was loved and feeling like I had a bright future, I couldn’t find a way to get rid of a plague that kept me from being me. I lost a drastic amount of weight. I was exhausted but only slept a couple of hours a night. I just wanted to feel normal. I knew there was nothing in my life horrible enough to warrant how I felt, but I still couldn’t make myself feel better no matter what I tried.

This continued for three months before I marched myself to the student health center and said I thought I had depression. The nurse treated me with strikingly little compassion. Little did I know it was the beginning of a journey (still on-going) of working with health care providers with various levels of knowledge and kindness. I got through it, though, and very slowly things got better…until they got worse a couple of years later. I survived that, too, and I’ve survived a few more major depressive episodes since. I have no doubt it’ll happen again, and I’ll endure that as well.

Fifteen years later, I’ve finally come up with a way to describe depression…or at least my experiences with depression. It’s like getting a phone call with tragic news (like the death of someone you love or finding out a family member has cancer). Your stomach turns. A weight settles on your shoulders. You don’t know how you will cope with whatever news you’ve just been given. You don’t know what to do next. That’s what I feel like when I’m depressed–except there’s no tragic news. I walk around carrying that feelings for days or weeks at a time. It still happens, but it’s less scary than it was that first time. It’s less scary because I know that I won’t always feel that way. It can and will get better.

I’ve come to terms with taking anti-depressants for the rest of my life. They don’t cure depression, but I don’t know where I’d be without them. (And, yes, I am prepared for the onslaught of emails and comments I may receive about how I should stop taking anti-depressants and—insert your genius solution here—turn to God and more specifically YOUR church, eat more good fats, find a good chiropractor, etc.) I don’t think everyone should be on an anti-depressant. I think there are many people who will need them at certain points in their life but then be able to stop taking them. And then there are people like me…who may have to take them their entire life. Ten years ago my goal was to wean myself off anti-depressants. Now my goal is to be happy.

One of the most difficult aspects of being a person with depression is listening to other people make comments that imply you just aren’t trying hard enough to be happy, that you’re making a decision to be miserable, or that you just have a bad attitude. I have been told that I have no reason to be depressed and that there are lots of people worse off than me. People have said that I just need to think more positively. When I have been at my lowest, I have been told to cheer up. (Gosh! If only I had thought of that! How helpful!) It’s similar to telling someone with no legs to go run a 5k. Depression is an illness, not a choice.

A few years ago, I overheard a conversation at a nursing home that helped me relate to people with dementia on the basis of my own depression. A nurse asked a resident if she had eaten her evening snack yet. The resident said she didn’t remember. The nurse told the resident that she wasn’t supposed to give her more than one snack, so she’d have to think really hard to remember if she’d eaten her snack. The resident, understandably, got angry.

“Don’t you think I’d remember if I could?” she asked. “Do you think I’m just not trying?”

Not all people with dementia have that much insight, but she had a point. And I made a connection.

There are people who think having depression means you’re just not trying hard enough to be happy. There are also people who think having dementia means you’re just not trying hard enough to remember.

Physical illness and injuries are easier to understand–not just for those around us but for us. I’ve had kidney stones and knee surgery. I never felt betrayed by my kidneys or my left knee. I have felt betrayed by my brain when I’ve struggled with depression. While my kidneys and my knees are part of me, my brain is…me. I feel like my battle with depression is a battle against myself. And it’s hard to wrap my mind around that. How do you separate your illness from yourself when your illness is at the core of who you are (your thoughts, your emotion, your cognition)?

Someone with Alzheimer’s once told me that she felt like her brain was cheating on her. It was a traitor. She told me that she was trying so desperately hard to do everyday things–things that came easily to her in the past–and her brain just wasn’t on board. When she was trying harder than she ever had in her life, people around her were doubting she was trying at all. Her awareness of this made me particularly sad, but I am sure many people with dementia have similar feelings whether or not they are able to express them.

A few years ago, I had a college student who had been in Iraq. He came home with a brain injury that caused dementia-like symptoms as well as anxiety and depression. I tried my best to accommodate his desire to continue as a college student and finish his degree. One day in my office he made a comment about being jealous of veterans who came home with more “visible” injuries, like amputations. He told me that they were always being thanked for their service and called heroes. He felt he was just perceived as a slacker who had given up on life–when he was trying harder than he had ever tried before. For days, I thought about how ridiculous it seemed that a person would be jealous of someone who lost a limb at war, but I really did get it.

Physical injuries and illnesses are somehow more legitimate and heroic than health issues that we cannot see with our eyes. I’ve seen this phenomenon when people with dementia are humiliated for not remembering loved ones (“You know who that is, Grandma!”). We do a better job of being understanding when someone can’t walk than when they can’t remember. We can see their legs wasting away, but we can’t see that their brain showing signs of decay and shrinkage…even when that’s exactly what may be happening.

This post is a bit of a “coming out” for me. I’ve come a long way from being that depressed college student living on the 5th floor of Bender Hall. I still have depression. I’m not cured, and I’ve accepted that I never will be.

I hesitated to publish a post where talked about my own struggles with depression. In fact, I even sent a text to two friends last night who I knew would encourage me to go ahead and hit “publish” because I knew I needed the push.

I am ashamed to admit that I hesitated to publish this because of the stigma that surrounds mental health issues like depression. However, that’s not fair of me. It’s not fair of me to be “in the closet” about my depression when I continually applaud people with Alzheimer’s and other dementias for speaking out in a world that still stigmatizes dementia.

I can’t encourage people to speak out about dementia if I’m unwilling to speak out about depression.

Let’s get over the stigma.

Looking for a Sign in Dementialand (Or When You Just Gotta Make the Call)

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After one of my friends excitedly told me she was pregnant, she launched into a long monologue about whether or not it was the right time to have a baby. She explained that she and her husband had been talking for years about when the right time to have a child might be. First, she was in a grad school. Then, he got a promotion and had to do a lot of traveling for work. Just when they thought the timing might be right, her mom was diagnosed with cancer.

She told me, “We came to the conclusion that maybe there is no exact right time to do it. Maybe you just have to make a decision.”

Those words stuck with me. When I think about my life, there have not been definitive signs telling me when it’s time to make a life decision or major change. If I would’ve waited for those signs, I’d still be sitting there–in the same life stage I was in many years ago. At some point, you just have to make a decision and move forward.

I remember having to make a series of career decisions in the couple of years after finishing graduate school. I went on a job interview at the university where I currently work as a faculty member. I wanted a sign that I should take the job if I was offered it.

I’m not sure what I would’ve considered a sign. Perhaps a carrier pigeon that would drop me a note telling me I should work at the university. Maybe a fortune cookie at dinner that said, “Take the freaking job, Elaine.” I would’ve settled for a well-done piece of toast with burn marks in the shape of the Northern Iowa mascot (which is an adorable Panther named TC who I’ve become quite close with over the past nine years, by the way). I got nothing. No signs. No signals. In the end, I just had to make a decision.

Maybe it’s getting engaged. Maybe it’s having a baby. Perhaps it’s going back to school or changing jobs. It could be something less monumental but potentially life-changing, like starting a fitness program or registering for your first 5k. You can always find a reason to not do it. There’s always something that makes the timing not exactly right. Sometimes you need to do it anyway. God, the Universe, or whatever power you believe in will not present you with the perfect time and circumstances to do anything. If we wait for perfect, we’ll always stand still.

In the past week, I’ve been asked the same question three times. The question is: How do you know when it’s time for your loved one to move to a nursing home?

A typical response to this question is, “You’ll know when the time is right.” I’m not sure why everyone says this, except that perhaps it’s comforting to think that God or the universe will put a billboard in your life to signal that you should consider a nursing home for someone you care about. As comforting as this might be, it doesn’t always happen.

A woman approached me at an event last week and asked if there was any “test” a doctor or psychologist could give her mom that would give her a definitive answer as to whether or not she should live in a nursing home. After talking to this woman a bit, I realized that she knew the best choice for her mom at this point was probably a nursing home. She had information that could never be assessed by a test, and she had more knowledge of her mom than any doctor or psychologist could ever have. And, yet, she wanted a checked box that signaled that it was time for mom to move to a nursing home.

I can’t check a box that indicates it’s time for nursing home care. First of all, I don’t know your mom, your dad, your grandparents, your sibling, or your partner. You are the person who has the information to make this decision. You may like the idea of a “professional” giving you a definitive answer, but it doesn’t work that way. I get really annoyed with people who answer questions with questions, but if you ask me if your loved one should live in a nursing home, I’m likely to ask what you think. Then I generally just repeat this back to you. Sometimes I rephrase it, and sometimes I don’t even go to the trouble. Later on you thank me for my brilliant advice when I never gave you any advice. You had the answer all along.

Second, decisions about nursing homes are about more than the person who needs care. People with dementia do not exist in isolation. You must consider the health, social support, and knowledge of family members and friends who provide care at home. We hate to make decisions based on finances, but money impacts the choice to consider nursing home care. You even have to consider issues like the layout of one’s home (e.g., Is it accessible?). I can ask you a series of questions about your loved one’s health in order to assess whether or not a nursing home might be the right choice, but that’s not the whole picture. Life ain’t that simple. Sorry, folks.

When I worked with individuals in hospice care, I had a few conversations about the choices they had to make throughout their illnesses in regards to stopping life-saving treatment (particularly chemo). One woman told me that she was looking for a sign that it was time to give up on chemo. If she had some sign, she could tell her family that the time had come to stop. However, that sign never came. She had to make a decision, and it was more difficult to tell her family because it was her choice. There was no real signal that the timing was right to forget chemo and call hospice. She just had to make a decision. It was her life, her choice.

It’s a little different with dementia. Obviously, as dementia progresses it becomes more unlikely that people can make their own choices about care. Family members and friends step in. Sometimes people with dementia and their loved ones are proactive enough to have discussions years before these difficult choices must be made. Often they are not.

We often anticipate that these decisions will be made based solely on the health of the person with dementia, but they are not. I know a man who cared for his wife with Alzheimer’s in their home until he fell and broke his hip while cleaning out the gutters. It was at this point that she moved to a nursing home. He felt guilty that this decision was made based on him and not her, but that’s how things often work. Another woman who had Alzheimer’s received in-home care for several hours a day for a few years. When her money ran out, she went on state aid and moved to a nursing home. Her family felt awful that they didn’t have enough money to pitch in and keep her at home. Love doesn’t pay the bills. (If it did, the world would be a different place.)

Quite often, a person with dementia lands in a nursing home as a result of a crisis. Maybe they fall and injure themselves. Perhaps they end up wandering around town, confused and scared, and their family realizes they can’t provide supervision at home anymore. Unfortunately, nursing home admissions in crisis are not ideal. They are stressful for the person with dementia, as well as for the family. Also, when we must admit someone to a nursing home on very short notice, we seldom get that person into our first choice of nursing home. I encourage families to make a decision before a crisis happens.

There is no pre-determined right time to get married, have a baby, go back to school, or change jobs. You don’t have a prescribed timeline for your life. There is not an exact right time to choose a nursing home for a loved one. Sometimes there’s just a difficult decision.

A carrier pigeon isn’t going to drop you a note, and sometimes fortune cookies just aren’t that helpful. And, as a professional in the field, I’ll certainly chat with you about it, but I can’t make the decisions for you. In the end, you just have to make the call.

And not look back.

Aggressive Behavior in Dementialand

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My cell phone rings in the morning as I’m blowdrying my hair before work. I look at the number, and I’m not sure who’s calling. I’m tempted to assume it’s a wrong number and not answer. I’m running late. I figure if it’s someone I know, they can leave a voicemail. However, something tells me to answer.

It’s a friend of a friend that I’ve met with before. I’ll call her Laura. Her and her husband, Al, are in their early 70’s. He has Alzheimer’s. He was diagnosed about five years ago. The last time I talked to Laura, Al was able to work at a part-time job and drive.

When I answer the phone, Laura tells me that she doesn’t know what to do. Al has been declining quickly. He needs help using the restroom. He forgets to eat. The other day he didn’t even know how to open a door.

But that’s not why Laura called. She called because he didn’t sleep last night. He wandered around the house, disorientated and muttering to himself. At about 3 am, she tried to get him to come to bed. It was dark and he didn’t recognize her. He pushed her down on the couch and started to put pressure on her neck, as if he were trying to choke her. Laura mentions several times that he didn’t leave any marks on her neck. I’m not sure if she’s trying to reassure me or herself.

Then he shuffled off and went out onto the deck. Laura spent the next couple of hours watching him from the window. She was worried he’d wander off and get lost, but she was also scared to try to convince him to come inside.

“I don’t know what to think,” Laura tells me. “He’s a gentle guy and we’ve always had a great marriage. He’s never been abusive.”

I explain that this has nothing to do with whether or not he’s a kind and gentle person. It has nothing to do with their marriage. It has everything to do with Alzheimer’s.

I tell her that he’s scared. The rest of the world may perceive Al as being in his own home–a familiar environment in which he has resided for decades–with his wife of almost 50 years. However, Al’s behavior tells me that he wasn’t in a familiar environment with a familiar person. He was in a scary place where he was approached by someone he didn’t recognize.

The term aggression in relation to people with dementia makes me uncomfortable. When we say someone is aggressive, we generally mean that they are unprovoked (rather than defending themselves) and intending to use force to hurt someone. However, I would argue that aggression among those with dementia is almost always a result of fear.

The way that someone with dementia perceives the world around them often results in a feeling of being threatened. What does anyone do when they are threatened? They lash out. It’s a natural reaction. When people with dementia show aggressive behaviors, these behaviors often make sense if we consider how they might be perceiving the world around them.

I ask Laura a few more questions. I learn that Al used to be a hunter, and Laura came home recently to find that he pulled out a few guns and put them on the kitchen table. He explained to her that someone had been messing around in the garage, so he had to be prepared. It scared Laura enough that she asked her son to come and get Al’s guns.

“I’m pretty sure that no one was in the garage,” she tells me. “But I guess you never know.”

On another day, he was convinced that “the militia” was after him. He had a bunch of knives out on the counter. He had also kicked the dog a few times, which was something the “old Al” would never have done. It horrified Laura.

Laura keeps telling me that she doesn’t think Al would ever hurt her. (She’s more worried about the dog, she says.) I have to think that if she really believed this she would not have called me before 7 am. She’s scared.

I tell her that she needs to get Al a medical check up. I am particularly concerned that he may have a urinary tract infection, which is often linked to aggressive behavior in those with dementia. She agrees he needs to go to the doctor, but she has no idea how to get him in the car. She doesn’t think he’ll go willingly.

Then I ask her if she’s checking into long term care options. There is a pause. The kind of pause where you wonder if the call has been dropped. Or if someone has hung up on you.

Finally, Laura tells me that she can’t do it. She can’t even think about Al living in a nursing home. He’s been a good husband and she will take care of him at home. She says he deserves that, and she promised their kids that he’d stay at home. She insists she’s doing okay. I point out that she wouldn’t have called me if she was doing okay. Dementia caregivers don’t call me to say they are doing fine.

I tell Laura that Alzheimer’s is a cruel beast, and sometimes it forces us to make choices that we don’t want to make. Most people are not really excited about the idea of someone that they love going to a nursing home or memory care community, but sometimes it’s the decision we have to make. I’m concerned that he needs a level of care that can no longer be provided in home. And I’m concerned about her well-being and safety.

I tell her that she can’t continue to live like this. She’s not sleeping. She’s not eating. She says she’s sick to her stomach all the time. She’s particularly worried about him hurting the dog. She can’t have people over to the house because it seems to agitate him. And she can no longer leave the house because she’s not comfortable leaving him alone.

“I can handle him at home,” she says. “I mean, how long can this go on?” I have no idea if this is a question she wants me to answer or a rhetorical question. I answer anyway. I tell her it could actually go on for quite some time.

I give her some advice on community resources. I tell her not to be afraid to call the police if she has concerns about her safety or Al’s safety. We talk about support groups, but she doesn’t seem interested. I suggest she start checking into nursing homes and memory care communities. Although she earlier said she couldn’t do it, she says she’ll consider it. She might be appeasing me.

Then I hang up my phone and get back to drying my hair. I head to work and get on with my day. I’m not sure if what I said to Laura was even close to helpful. Yet I’m not sure what I could have said differently.

That evening I get a call from Laura. She tells me Al is in the psych ward. She is upset because she thinks they gave him too many sedatives when he arrived. In her words, he’s a zombie. She’s also frustrated because they used restraints when she didn’t feel it was necessary. A social worker told her that there’s no way she can take Al home. They need to talk about other options.

Yet, she also tells me she’s feeling relieved that he’s out of the house, and she’s excited to get a decent night’s sleep. In the next breath, she says she’s feeling guilty for feeling relieved.

I hang up the phone as my husband is getting home from the gym. I pour a glass of Riesling. We sit on the couch together and watch some mindless TV with our dogs. We both vent about work. We talk about the weekend plans we have with friends.

My mind drifts, and I wonder if there could ever be a day when my husband sees me as a stranger. Despite my experience with dementia, I can’t fathom it. I can’t wrap my mind around that possibility. It’s not something that could happen to us. Not now, not in five decades, not ever.

I can’t stop thinking about how cruel it is that fifty beautiful years of marriage must end this way for Al and Laura. I want Laura to have peace, but I can’t tell her how to get there. I can explain dementia, but I can’t help her make sense of it. Sometimes there isn’t a silver lining, and sometimes you come up empty in a search for meaning.

The 2041 Words That Helped Me Understand Dementialand

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I’ve written this blog since January. This is my 73rd blog post, which blows my mind. I’ve received positive feedback…and I’ve gotten some negative feedback at times as well.

I’ve written a few posts that make me really proud. I’ve written some that I would say are just okay. There are a couple that I’m not sure are all that great, and I’m fine with that. All in all, I have to say that the joy for me in writing this blog has come from the connections that it has helped me make rather than the quality of the work.

I wouldn’t necessarily call myself a private person, but I’ve struggled at times to put my experiences and perspectives in writing, not knowing what type of response I might receive. I’ve written about a few regrets I have, and I regularly visit my many weaknesses and vulnerabilities. Sometimes I open up a bit and wonder if I shouldn’t have. In the end, I’m usually glad I did.

All of that pales in comparison to some of the blogs I read that are written by people with dementia. I am particularly impressed with the raw honesty of a blog by a woman in her 40’s with younger-onset Alzheimer’s disease named Melanie. It’s insightful, courageous, and amazingly real. Her work is far more more compelling than anything I’ve ever written or will ever write.

There is one particular post that I have read about 15 times. It has helped me understand dementia in a way that I did not understand it before. It also continues to break my heart.

A link to the post is included, and I have pasted the entire post below.

Thank you, Melanie. You are making a difference.

https://mwagner21.wordpress.com/2015/07/15/remember-me/

.. Remember Me .. 

JULY 15, 2015 

I knew it was coming, but the knowing didn’t make it any easier.  New doctors 😦

After a horrible ordeal at my recent new neurologist’s appointment, I didn’t talk for quite awhile to my husband or daughter who took me to the appointment. I truly was just tired of it all.. the questions, tests, blood work, etc. On top of that, this highly recommended and well qualified neurologist was completely rude, interrupted each of us as we tried explaining me .. yep, feels like just yesterday, or should say 6 years of frustration with doctors with their questions, disbelief, egos bigger than the room their in, and then the overwhelming ending statement “well, there’s not anything more we can do” ..

yes I know I’m dying.. yes I know there’s no cure, no medicines for the disease, only endless pills for the symptoms and then more pills to counter those pills’ side effects … an unending cycle I want out of so bad. But can’t a doctor just give me a little bit of hope.

Finally after a bit, we took my daughter to dinner for her birthday and I was able to process everything and speak a little of how I felt. I looked at my husband and said “I just don’t want to talk to anyone anymore” .. I asked if he understood what I meant by that and he said “yes”. I thank God everyday for my husband and his “knowing” and comfort and peace he gives me. I don’t want to talk about what’s wrong with me over and over with more and more doctors or about all my medications and prognosis. I just want to be left alone.

So the medications I’ve been on since diagnosed, that again, do not do anything for the disease itself, only the symptoms of the disease… are no longer working. They were hoping they would at least help me focus a bit more, which it did for a few years, then they hoped the other med would slow down my progression.. after being tested 3x a year to follow my progression, the med has not helped .. not even a little.

In this disease, you either plateau – stay even for a bit or even longer or you just decline rapidly – all at once, or in the beginning and then later .. I’m back to that steady decline. My earlier hospitalization this year, really hurt me mentally. People think going into the hospital is a short ordeal, and then you go back home and you heal and get better. With this disease, it doesn’t always work that way for us. Sometimes we never recover from the mental and physical breakdowns. In my case, as I have fought back hard all these years from over a 100 admissions, this last one, I haven’t been able to get my footing back, my fight.

I have literally gone back to where I was the year I was diagnosed in every aspect. I look back now at the past few years and yes, I do appreciate the health, the strength and drive I was blessed to have, but now I’m truly scared. In the beginning after you battle the depression, anxiety, fear, hopelessness… you eventually come to terms with it and move on – fight back as much and as often as you can. The promise of meds to help, good doctors, progress – oh progress – I wish for that, but it’s not to be anymore.

My tests have shown a sudden fall in everything, too fast for me to even grab a hold of one aspect of it to try and stop it, or push through to make it at least bearable. My anger is back, frustration is growing, my words (though you may seem they are good as I write this) are not there when I go to talk or to express what I need or even when I need help. Their random, they don’t make sense most of the time and most conversations are filled with so much bitterness and anger.. I’m losing control and can’t seem to stop this spiraling. This isn’t me. I just want to be “me” again!! I truly hate this disease and what it does to all of us with it. I hate what it does to our caregivers, their pain, frustration and helplessness. The tears – never ending.

I want to apologize to anyone who reads this, if I’ve ever commented or posted anything to offend anyone or anger some. I truly don’t mean to. As I try and write what I feel, or truly try and comfort or encourage others – my words are just not coming out right anymore. From this point on, I may continue my blog, but I may have to face the fact of just shutting out my other social media outlets. My brain just can’t seem to grasp all the “clutter”, chaos, information… you may think those words are harsh, but to someone with this disease, that’s what it feels like to us. Too much stimulation, too much to try and comprehend and then try and process. What used to be so easy, is now so hard to just grasp other people’s words, appreciate their beautiful photos – because you’re trying to remember who they even are, to read a wonderful quote or prayer and not be able to process the meaning anymore.. this world sucks. I wish I had a different word for it, but I can’t think of any right now and may never again.

My reading and writing have also both deteriorated so bad. I thank God for my continued use of a keyboard, for “auto correct”, though it can’t correct any feelings that just aren’t coming across exactly the way I want them to. I wish there was an easier way to express how all this feels. To be able to help someone out there to understand, to be able to encourage others with this disease with problem solving ideas like I used to be able to do, or just give information to help ease some of the anxiety that caregivers feel. I’m lost. I’ve come so far to only recede back to where I was years ago.

This is what dementia looks like. We may all have different forms of it, classifications, stages and progression, but the symptoms are all the same, they just happen at different times and degrees.

Well, it’s after 4am and I have yet to sleep tonight. None of my meds help with my sleep anymore. Insomnia is now more common than a night of sleep. I have a fellow friend with the disease who also shares this same nightmare, of sleepless nights, unable to “shut off our brains”, though their not working quite the same, their still running “non-stop”.

As far as my new doctors, I understand their evaluations of me. I’m thankful that their no longer going to put me through rigorous testing anymore and constant hospital admission. I still have to do my progression testing every three months, but those have a new meaning to me: embarrassing. Questions I cannot remember the answers to; the year, the president or even things he wants me to remember and repeat later on, or the “where am I” or where do I live… frustrated, anger, embarrassed, helpless.

Those feelings are why I haven’t written in awhile. I don’t know what to say or how to say how I feel other than those words.

My husband and I have now settled where it’s warmer year-round for me, to help me, as I can’t take the cold anymore. We’ve prepared for the worse that is approaching much quicker than any of us would like. Last year, they gave me a projected date “maybe 2 years Mrs. Wagner” .. that’s what I remember them saying. I always brushed it off, as they truly don’t know, it could be 10 years. I can fight this, overcome it, keep praying, believing in a miracle.. I never gave in to a “final date”.. just kept on going.

The past month has changed all that. At first I noticed it, then my husband did. Little things just like 6 years ago, now much bigger things are happening. I’m blessed my husband can be with me every single day and night, so I’m not alone, and he’s there to help, to make sure nothing happens to me and I’m safe. But it’s getting harder as I reach for something and I drop it every time now; I open the refrigerator door and forget to close it; I start my morning routine (because I have to have a routine now due to this disease, anything out of sync will absolutely sink me, and that’s no exaggeration) and then I’ll miss a step – leave the water running in the sink, try and start a cup of coffee (and we have an easy Keurig for me to use) but forget how to even push the button or close the lid and I just stop and stare at it, hoping something would “click” and I can figure it out, but it doesn’t, so I just sit on the couch as usual and hope I can just process how to lay down, pull up a blanket or even answer my phone, which is becoming more and more difficult. Then the randomness pops up here and there: I can use my laptop once it’s been opened for me, “surf” through my emails, but can’t really understand most of what I read, so I leave them for my husband. Again, so thankful for him and all that he does for me, for us, our home, our family.

I’m not sure when I’ll be able to write again as these moments are fleeting now, of comprehension, awareness and focus.

It will be sad to leave my family and friends on facebook, etc, but I’ve gotten to that point in this disease where I don’t feel like I’m a benefit to anyone anymore, nor any good “news” on my end. I wish everyone much love and prayers and all of you will always be in my heart and mind, even if I’m losing touch with faces or names, I remember feelings, warmth, love and encouragement. I know I am supported more than I deserve and I am so grateful to each of you. Someone will keep anyone posted that would like to know or if ever close by, to visit, though I’ll apologize now if I’m not “quite there” anymore. My 45 years have been filled with all of you – great and true friends, warm and loving family – God has surely blessed me and I thank Him everyday for each gift He has given me. Till He is ready for me to come home, I’ll never give up, I just have to fight a little differently now.

The following song sums it up in a bittersweet way ❤

“Remember Me” lyrics below by Chris Mann – who wrote this song as an anthem for Alzheimer’s:

“I need someone to hold, to hold on for me ~ To what i can’t seem to hold  on to ~ The life we used to live, is slipping through my fingertips ~ Like a thread that’s unraveling ~ I suppose that nothing lasts forever, and everything is lost in its time. ~ When I can’t find the words that I’m trying to speak ~ When I don’t know the face in the mirror I see ~ When I feel I’m forgotten and lost in this world ~ Won’t you please remember me ~ Remember me ~ I know there’ll come a day, when i have gone away ~ And the memory of me will fade ~ But darling think of me, and who I use to be ~ And I’ll be right there with you again ~ I hope I’m one thing worth not forgetting ~ Tell me that you’ll never let me go ~ When I can’t find the words that I’m trying to speak ~ When I don’t know the face in the mirror I see ~ When I feel I’m forgotten and lost in this world ~ Won’t you please remember me ~ 

Remember me…

The Prime Time in Dementialand (and Why You Don’t Want to Listen to Me Lecture at 2pm)

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When I was a teenager, my mom bought me a nightshirt that said “Perky Morning People Should be Shot” across the front. Looking back, that statement was a bit harsh, but I often threw a fit (aimed at my mother) about having to get up early in the morning. And I wore that nightshirt until I was about 25…until it was virtually transparent.

Despite my allegiance to that nightshirt, I can’t say I’m not a morning person. I don’t enjoy having to get up at 5 am, but I’m most productive in the mid-morning (from 8 to 11ish). If I have important work to do, I try to structure my day to get it done in that time frame. When possible, this is when I teach my college courses. I also attempt to schedule important meetings around this time. (And, in case you were wondering, my blog posts are on scheduled released. I’ve talked to a few people recently who were impressed that I was up at the crack of dawn doing my blog. Nope. I’ve usually fast asleep when my blog posts are released.)

I’m also can’t say I’m not a night person. I’m definitely not an owl who stays up ridiculously late, but in many ways I feel my best at night. I do my best writing in the later evening (from 9 to 11ish). I feel most creative in this time frame. I’m usually happiest at night as well. If you want something from me and want to make sure I’m in a good mood when you ask, try 9 pm.

What I am not is an afternoon person. For as long as I can remember, I’ve disliked afternoons. My complaints about the evils of afternoons are many…For instance, I struggle to concentrate and lack motivation. I don’t have much patience in the afternoon. I am much more likely to be annoyed by something inconsequential in the afternoon than at any other time. I also have more anxiety in the afternoon than in the morning or evening–although I’ve never figured out why.

I’ve tried various strategies to change this, including going to bed earlier and changing what and when I eat. To be honest, I’ve tried consuming large and potentially hazardous amounts of caffeine. (In fact, I’ve tried everything short of illegal drugs to increase my energy in the afternoon.) Those things do make a small difference, but I’ve come to the conclusion that I’m just never going to be at my best in the afternoon. Trust me…you don’t want to have to listen to me lecture at 2 pm. I’ll get through it if I have to, but I’m not as “on” as I am at 9 am.

A couple of years ago I was making plans to work with a colleague on a project that involved a lot of tedious data and a few statistical methods that we had both learned in grad school but rarely used. I asked what time we should get together.

“Let’s do late morning,” she said, “That’s my prime time.” I wasn’t sure what she meant by prime time, so I asked. She explained to me that her prime time was the time of day when she felt sharpest, and she tried to schedule her most taxing tasks in her prime time. I’m not sure why, but it had never occurred to me until this moment that I could (and should) try to schedule my day around my “best” times when I could. (I’m fortunate to have a job with some flexibility that allows me to do this, and I know not everyone is as lucky.)

If you think about your day, there are probably a couple of “pockets” of time when you feel best. Maybe you’re happiest and most productive in the early morning. Maybe you don’t really wake up until noon. Perhaps you’re the type of person who thrives late at night after most of the world has gone to bed.

A few websites suggest that you can start a spreadsheet to track your energy and mood throughout the day in order to figure out when you’re at your best. However, I would argue that if you have to collect data to figure this out you probably don’t need to worry about it much. Without a chart, I can tell you that I’m pretty lackluster in the afternoon.

No one is at their best all the time.

That includes people with dementia. Individuals who have dementia may see the patterns they have experienced their whole lives exemplified. Or the patterns may change. Either way, the patterns become more important. And structuring one’s day around these patterns, and a person’s “prime time” becomes more key to quality of life.

Recently I talked to a woman, Heidi, whose husband has Alzheimer’s. She told me that they took a trip to Hawaii, which had always been a special place for them as a couple. I asked how it had gone.

“Not good,” she said. “Not good at all.”

Heidi told me that her first mistake was booking a flight that left at 6 am. Her husband had never been a morning person, and he struggled even more with mornings after his diagnosis. Getting out of bed before the sun came up seemed to increase his confusion. He kept forgetting where they were going and didn’t believe Heidi when she repeatedly told him about the trip. He even asked a flight attendant where the plane was going and doubted her answer. The combination of traveling and being up early made for an awful experience–for them both.

Heidi’s husband also struggled with the tours and planned events on their vacation. He was used to “downtime” at certain points during the day. One day they were on a bus tour (at a time when he would typically be sitting on the couch watching TV) when he become confused and panicked. They had to get off the bus and call a cab to get back to the hotel.

Heidi realized that maybe the trip itself had just been too much for him, but she also realized that she could have been more sensitive to his prime time when she planned. She assumed he’d be able to adjust. He would have been able to adjust a few years back, but she had to admit that his prime time had become important to the success of their activities.

And what about those with dementia who must adjust to life at a nursing home?

You won’t hear me knocking nursing homes as a whole. I know that there are great nursing homes, and there are not-so-great nursing homes–to put it nicely. Some of the kindest people I’ve ever met work in nursing homes. But there are a lot of downfalls to institutional living…

Although we are trending (too slowly) toward more individualized care, life at most nursing homes is quite scheduled. Meals are offered at certain times. You are expected to get up and go to bed at certain times. Activities are on the calendar. These events are often not dictated by an individual’s preferences but by the convenience of the facility. And this is not a criticism of facilities…they are usually understaffed and attempt to plan in the most efficient way for all. Unfortunately, it’s sometimes about the greater good rather than the well-being of one individual.

However, attempting to adjust to this schedule can be hard for people with dementia. In fact, it would be difficult for anyone. I know plenty of people of all ages who enjoy sleeping in…but how does that work with the schedule at a nursing home? And what about night owls? How can you stay up and watch TV when your roommate goes to bed at 7 pm? As a professed afternoon-hater, I worry that all the best activities might happen in the afternoon when I would prefer them in the morning. Individuals with dementia may struggle to make these adjustments–even more than the rest of us.

To function in the “normal” world, we are forced to play by the rules. I sometimes have important meetings at 2 pm. When I have to do reports at work, I may only have an afternoon time slot to get them done. That’s the way life is, and I adjust. After all, I’d like to keep my job.

However, adjustments may be more difficult for those with dementia. Someone who struggles with having a conversation may do well when they have visitors during their prime time but find conversation more taxing at a different time of day. If Grandma wants to go grocery shopping but sometimes finds it overwhelming, it may be useful to make sure she goes during her prime time. And if Mom typically takes a nap in the afternoon, it might not be best to plan the family Christmas celebration at 3 pm.

It sounds simple, and it is–really. If you are a professional or family caregiver, help people with dementia create schedules that work with (not against) their prime time. Be conscious of times when people may not be at their best. Consider the individual’s priorities and assist them in managing their time in a way that uses their best moments to maximize those priorities.

And do the same for yourself.

The Miracle and/or Science of Music in Dementialand

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After returning from a vacation that involved my husband and me driving halfway across the country (literally–from Iowa to South Carolina) and back again, I am more amazed than ever at the miracle of GPS (aka Global Positioning System). I know GPS is nothing new, but as it becomes more advanced–for instance, telling us when we will encounter traffic–I realize I am increasingly dependent on it. And it blows my mind.

Several people, including one who is in our university’s Geography department, have explained to me exactly how GPS works and why it has become more accurate in recent years. Their explanations have been quite user-friendly, but I still cannot wrap my brain around GPS. Since I can’t make myself truly understand the science behind GPS, I just call it a miracle and live in awe. For the record, I am the same way about 3-D printing. I recently read that someone was able to use a 3-D printer to produce a violin. Call it science. Call it a miracle. Either way, it’s pretty awesome.

There’s something in Dementialand that can be called a miracle–or explained by science. Take your pick. But, no matter your explanation, it’s amazing. And, compared to medications and other therapies, it’s dirt cheap and has zero side effects.

It’s music.

I was reminded of this when I was on vacation in South Carolina. A wonderful family friend was telling me about her mom, who is in her 80’s and has Alzheimer’s. She said that the only thing that brings her mom comfort…is music. She may not remember the names of her family members or recall going on vacations. She isn’t able to talk about her time with her husband, who has passed away, or reminisce about when her children were young. And, yet, she remembers the words to songs…and that seems to bring her some sense of peace.

It’s certainly not the first time I’ve heard this. In fact, I was volunteering for a hospice years ago when the daughter of a woman with Frontotemporal Dementia told me she wanted to show me a miracle. I wasn’t sure what to expect as I walked into her mom’s bedroom. There was her mom, curled up in a ball, in bed. She hadn’t been able to speak in months, and her current state prompted her kids to continually ask, “Mom, are you in there?”

There was an old-school cassette tape player in the room. Her daughter put in a tape that they had recorded of their church congregation singing hymns. As soon as the tape started, her mom’s lips started moving to the words. If sounds came out, they were only whispers, but the family took this as proof that, as they put it, she was still “in there.”

“See? Have you ever seen a miracle like this before?” the daughter asked me over the music. “It’s a miracle from the heavens.”

I didn’t say it wasn’t a miracle. However, I did give her a brief scientific explanation of why this happens. (And, it does happen frequently among people with dementia.) I explained that language is stored in a different area of the brain than rhythm. In many dementias, language may be lost to the disease while rhythm is protected. Words that are associated with rhythm (e.g., song lyrics, prayers) remain although other verbal skills are gone.

Someone who can’t talk can sing. I’ve witnessed a person with end-stage Alzheimer’s singing New York, New York when he had not talked in months. He sounded just like Frank Sinatra. Someone who can’t walk can dance. I’ve seen CNAs “dance” someone from the bed to the toilet when they are unsteady on their feet. The best CNAs understand how rhythm can help with movement for people with dementia, and they use that to their advantage. And it’s all because of the way dementia impacts the brain.

As I explained this to the woman whose mother had Frontotemporal Dementia, she gave me a blank look. After I was done talking, she stared at me for a few seconds.

Finally, she said glumly, “So I guess it’s not a miracle after all.”

I had just explained away a moment of joy. Without meaning to, I had stolen her miracle. It occurred to me later that what I perceived as science was perceived as a miracle by her and her family. However, I was as amazed at the science as they were at the miracle. I certainly was not intending to imply that what we were seeing was any less amazing because it could be explained scientifically.

Although I was raised Catholic, I’ve struggled to figure out where I belong in terms of religion, faith, and spirituality. I know I’m not unique in this, and perhaps the term “struggled” isn’t really accurate. I just figure it’s part of the journey. It’s never really bothered me that my views about religion and life are evolving. We are all dynamic in terms of our perspectives on life, whether we are religious or not.

I’m the daughter of chemical engineer. Although chemistry isn’t my thing, I did inherit a nerdy love of the scientific method. Science–and how we can apply it to human life–fascinates me. For example, I wasn’t too committed to learning the parts of the brain when I was an undergraduate. However, as I started spending time with people who had dementia, I realized that I could translate certain behaviors to deficits in certain parts of the brain. For me, science was suddenly about people, not about cells on a slide.

I don’t like to think of miracles and science as competing theories. Something can be rooted in science but also be appreciated as a miracle. When we were in South Carolina, we walked down to the beach after dinner to see the most wondrous double rainbow over the ocean. Although I somewhat understand the science of rainbows, I did ask my good friend Siri (aka–my IPhone), “Siri, what makes a double rainbow?” Siri was able to kindly send me to a couple of websites where I learned a bit about “secondary” rainbows and why there is sometimes a larger, fainter rainbow over the primary rainbow. There is a scientific explanation of a double rainbow over the ocean. Yet, does that mean it’s not a miracle? Does that mean we should look at it with any less awe and wonder?

I can explain why music is such a valuable tool for people with dementia by showing you a picture of the brain. I can tell you why people with Alzheimer’s can sing but not talk by discussing the functions of various parts of the brain. However, I am not going to argue if you say it’s a miracle that a woman who is non-verbal is singing a hymn.

Music can have a pretty incredible impact on all of us–not just those who have dementia. A few months ago, I was in my office when Free Bird by Lynyrd Skynyrd came on my Pandora station. In high school, I spent quite a bit of time riding around town with my friends Dan and Tom in a turquiose pickup truck owned by Dan (or maybe by Dan’s parents). I am almost sure we had some interesting conversations, but I cannot be absolutely certain because I don’t remember a single one of them. I have no idea what we talked about, really. What I do remember are the songs we listened to. Or maybe I should say the song. I think we just listened to Free Bird repeatedly. Maybe once in a while we listened to Tuesday’s Gone with the Wind as well. There’s something about riding around in a pickup while listening to Lynyrd Skynyrd.

I have also found that music connects people. My favorite song to lip sync to as a kid was Islands in the Stream by Kenny Rogers and Dolly Parton. I sang the Dolly part, obviously. Sometimes I sang the Kenny part as well, but sometimes I pretended like my current crush was singing the Kenny part. (Once in a while it was a celebrity crush like Kirk Cameron, but usually it was someone in my class at school.) There’s also a remake of Islands of the Stream by Reba McEntire and Barry Manilow. I don’t know what they were thinking. It doesn’t touch the original.

By coincidence, I recently discovered that my friend Dana has the same slight obsession with this song. When we figured this out, we instantly became kin. Music can bring people closer together. And it doesn’t hurt that we also both have puggles (a beagle/pug mix) and love wine. Lifelong friendships have been built on less.

I put the power of music (especially for those with dementia) in the same category as GPS and 3D printing. It doesn’t matter if you consider it science, a miracle, or both. It’s pretty awesome, and we need to use it to our advantage.

And if you have even a passing interest in music or dementia, do yourself a favor and watch the documentary “Alive Inside.” It’s available on Netflix.

Mean Listening Face in Dementialand (or the Importance of Non-Verbal Communication)

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I was diagnosed by my husband as having an affliction called Mean Listening Face about four years ago.

A college student that I had in class previously was at our house for pizza. She was telling me about how she had recently applied for a few positions at non-profit agencies. She looked at me and stopped in the middle of a sentence.

“Oh, is that not a good place to work?” she asked me. I had no idea why she was asking me this.

My husband jumped in and said matter-of-factly, “Elaine isn’t intending to give you that look of disapproval. She just has Mean Listening Face.”

This was the first I had heard of my Mean Listening Face. I didn’t argue with my husband, and there was no further discussion of this affliction between the two of us.

A few days later, I was out to lunch with a friend. I decided to ask her if I had Mean Listening Face. I anticipated that she would ask me what the heck I was talking about and then tell me that my husband was crazy.

Instead, she said, “Yeah, I totally see where he’s coming from. I don’t know if you’d make a good counselor.” I went from being annoyed that my husband was overanalyzing my behavior to wondering why no one had told me this sooner. Seriously, friends…you should’ve done an intervention long before this.

I went home and looked in the mirror. I tried to pretend that someone was telling me something important and personal. Sure enough, I got these lines on my forehead and my eyes got intensely squinty. Yep. I had Mean Listening Face.

I realized that when I concentrated on what someone was saying…when I really wanted them to know that I cared…when I was processing what they were saying with all of my attention…I looked annoyed. I looked angry. I looked like I was trying to shoot bolts of fire out of my eyeballs. It’s a great face for playing cards when I don’t want anyone to know what I’m holding, but not a great face for empathetic listening.

You might think this is a small thing, but it’s really not. College students come to my office and need assistance. They may be struggling with college life or feeling like they don’t belong. They might not know what major to choose or what direction they want to go in life. I’ve even had students who are dealing with depression or anxiety. And what do I do? I give them Mean Listening Face.

And then there’s the work I do with dementia caregivers. In my conversations with them, it occurred to me that I might be giving off Mean Listening Face when they were depending on me to reassure them. Most of all, my husband’s diagnosis of my Mean Listening Face made me realize that perhaps I wasn’t giving off the vibe I intended to when I spent time with individuals with dementia. As dementia progresses, the words themselves become less important. The non-verbal cues become more important. In time, they become everything.

It’s about body language. It’s about facial expression. It’s about tone of voice. Dementia can destroy a person’s capacity to understand language. However, the ability to decipher the non-verbal aspects of communication remain much longer.

And the non-verbals are pretty important for those of us who don’t live in Dementialand. I have to admit that I get annoyed with college students who sit in class and roll their eyes at me. (I have actually dropped my attendance policy because I prefer students who roll their eyes at me just not come to class.) Then there are those who sit in the front row and make eye contact. When a student asks for a letter of recommendation, I have to wonder if their non-verbal communication with me is just as important (if not more important) than their verbal communication.

I had a series of several doctor appointments and an ER visit last spring that ended in a diagnosis of a separated rib. (Apparently you can have a separated rib even if you have no idea that you’ve had a traumatic event that may have caused a separated rib.) This was after misdiagnoses of a hernia, a kidney stone, and a urinary tract infection. Visiting several doctors in a span of a few weeks made me realize the importance of non-verbal communication in the medical industry. One doctor who saw me made me feel like everything I said was important to him. He made me feel like he genuinely was concerned about my level of pain. After leaving the office, I realized that he hadn’t said anything different than the other doctors I visited. It was how he said it.

While receiving the “right” non-verbals can make your day, receiving the “wrong” non-verbals really put you in a foul mood. I recently sat on an airplane next to a person who made it his goal to take up as much of my personal space as humanly possible. Without exchanging a word, we engaged in a battle. It was a battle of non-verbals. A battle of physical space. A battle over tray tables, carry-on space, and arm rests. A battle that I lost and let ruin my afternoon. I’m getting angry again as I think about it. Yet, not a single word exchanged during the two hour flight.

I’ve heard that 70% of communication is non-verbal. My theory is that this percentage increases as dementia progresses. When someone approaches end-stage dementia, how we say something is more crucial that what we say. And showing people that what they say is still valued–by eye contact, posture, facial expression, and touch–may be more important than our verbal response. People read physical cues long after they become unable to decipher words and sentences.

Last year I was visiting an adult day center and talking to a guy with vascular dementia, Bob. Bob is one of my favorite people. He is what I like to call “pleasantly confused.” He cannot tell you what year it is or where he is. In fact, he once asked me if I had come to see him so I could “shave his sheep.” (His family later told me that he had not been a farmer and had never owned any sheep.) Everything he says, however, is delivered with a huge grin. He has a laugh that lights up the room–even if the people in the room have no idea what is so funny.

Bob was telling me a story about a dog he had that ran away and came back home with a litter of kittens and a baby skunk. I have no idea if this story was true, partially true, or not true at all, but it was a really good story. And I had no interest in figuring out if it was true. It didn’t matter. It was the funniest story I had heard in a long time. However, I had to be back at the office for a meeting, so I took a quick glance over Bob’s shoulder at the clock.

“You’re in a hurry,” he said, stopping the story. “You’ve got things to do. You’d better go.”

My heart sank. I was upset at myself for giving Bob the impression that I was in a hurry and spending time with him was not a priority. Furthermore, it blew my mind that a guy who seemed so out-of-touch with reality noticed my split-second sneak peak at the clock. I was busted. On that day, I failed with my non-verbals, and I ruined a great story.

I’m working on my Mean Listening Face. It’s a conscious effort. When interacting with someone with dementia, I sometimes silently tell myself to relax my eyes and stop clenching my jaw. Actually, I do this when I’m talking to people who don’t have dementia as well. I’m hoping this will also help to prevent wrinkles as I age, but that’d just be icing on the cake. If you think you might also have Mean Listening Face, let me know. Perhaps we can start a support group.

Outside of Dementialand, words can connect us efficiently. Yet, the deepest and most intimate connections are based beyond words. No place is this more true than in Dementialand…where words often fail us. If we want to connect heart-to-heart with people as they move toward the end of their dementia journeys, we must sometimes forget words and speak a different language.

Friends Who Make Like Trees in Dementialand

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In one of my college courses, I often found myself sitting directly behind an African-American woman who wore her hair in cornrows. I was fascinated by her cornrows and found them gorgeous. As a white girl who couldn’t even braid, I was amazed at how tiny and detailed the braids were, and one day I decided to tell her that.

I started with something like this: “I hope this doesn’t seem weird, but I have been sitting behind you for this whole semester and I just have to tell you how much I like your hair.”

She thanked me, and we talked about how long it took to do the braids. I’m not sure I’d say we were friends after this conversation, but we were at least “friendly.”

I didn’t think too much of our interaction until a few months later when I attended a panel discussion on campus. The panel discussion was on ethnic diversity. I remember sitting in the front row and looking at a long table of experts on ethnicity, discrimination, and social relationships.

The people on the panel talked extensively about things you should not say to individuals who are ethnic minorities. In the midst of this discussion, an African-American woman said that you should never ever–under any circumstances–say anything about a black woman’s hair (which, of course, I had recently done).

I also remember someone saying that you should never ask a question based on a racial stereotype. They gave two examples, which I clearly remember. First, you should not ask an Asian person if they play the piano. Second, you should not ask an African-American man if he plays sports. In addition to breaking the “rule” about talking about a black woman’s hair, I had also recently asked if an African-American man if he played basketball. To be fair, he was a college student who was about 6 foot 8 and was wearing basketball shorts around campus–but I had broken that “rule” as well. (And, yes, he was a college basketball player.)

I am sure that there were many useful points made at the panel discussion on diversity, but my 19-year-old brain wasn’t able to process all of them. Instead, I was stuck on how some things I had said could have been perceived as offensive. And it bothered me. A lot. I even asked my roommate, Erin, if she thought I was racist. (If I never thanked you at the time, Erin, I’d like to thank you now–more than a decade and a half later–for assuring me I was not a racist.)

I left the panel discussion afraid to talk to people who were different from me. I worried that I would say the wrong thing, even if I was well-meaning. Obviously, that wasn’t the purpose of the panel discussion, but it was the impact it had on me at that point in time. I thought maybe it was better to not interact with someone than to say the wrong thing to them.

In a way, I had felt like that before in a very different situation. I had a friend in middle school whose mother passed away from cancer. I didn’t know what to say to her, so I avoided her. I didn’t go to her mom’s funeral. I saw her in the hallways at school and walked the other way. I saw her as different than me…I had a mom and now she didn’t. I had no idea how to relate to her. I didn’t want to make the situation worse.

We don’t know what to say to people who are different from us in some way, so we don’t say anything at all. We think it’s better to say nothing than to say the wrong thing. We feel more comfortable abandoning people than risking a situation where we might flounder or say something stupid.

I lost one of the best friends I’ve ever had, Sandi, to cancer almost a year ago. I remember sitting at her kitchen table last summer as she told me that she would see people she knew in the grocery store and they’d escape to another aisle so they didn’t have to chat with her. It made me angry. Yet, I don’t want to think that all of those “avoiders” were terrible people. I think that many of them avoided her because of their own fears and insecurities. I have to wonder if they just didn’t know what to say–so they didn’t want to have to say anything. It still bothers me that people were uncomfortable seeing Sandi after her diagnosis, especially because she was the type of person who was really good at making everyone around her feel comfortable and at ease.

It bothers me that we run away from people who need support because we worry we are going to say the wrong thing or because of our own issues. When I talk to people who have been diagnosed with Alzheimer’s or a related dementia, they often tell me that friends just disappear. It makes me sad. However, I’m an optimist at heart, and I can’t think that all of these people who disappear are awful human beings. Most of the avoidance of those who have dementia is based on fear. Fear of awkwardness. Fear of not knowing what to say. Fear of doing the wrong thing. Fear of the same thing happening to us. Sometimes being there for someone takes us out of our comfort zone. We need to do it anyway.

And I can apply those same thoughts to situations where people have other serious illnesses, are caregivers, and have lost a loved one. (I notice when someone has lost a loved one support peaks at the time of death and the funeral….and then abruptly decreases as life returns to “normal” and there is no socially mandated way to support someone.) We feel inadequate to help people, so we don’t even try.

On a personal note, I have a family member with a serious mental illness. At times, I’ve felt avoided by people I thought were friends. Looking back, I’m sure they were uncomfortable and didn’t know how to support me, so they just thought it was better to make themselves scarce. The people who reached out to me when things were rough weren’t always the people I expected, but I will never forget who they were. They didn’t know the perfect thing to say or do, but they reached out anyway.

It is not okay to avoid people who are struggling because we are afraid. Sometimes it’s gonna be awkward. Sometimes we won’t know what to say. Sometimes we will say something that doesn’t come out right. And sometimes we will have a major foot-in-the-mouth situation. (I’ve had many….) But it’s okay.

I’ve seen some articles online with titles like “10 Things Not to Say to Someone with Cancer” or “What You Should Never Say to Someone with Alzheimer’s.” I appreciate the notion, but I also wonder if articles like this increase our anxiety about interacting with someone who has a serious illness. Instead of focusing on making a positive difference (what we should say and do), we become more censored, more hesitant–because we don’t want to say the wrong thing. Sometimes I feel like telling us what not to say to someone makes us feel like the distance between us and them is much larger than it really is.

Here are my rules for supporting someone with dementia and their family (and you can apply these rules to others who might be struggling as well):

1. You will say the wrong thing. Just accept that at some point you will say something stupid.

2. There is no right thing to say anyway. No matter what you say, the person will still have dementia. What you say or do can’t fix that. (You aren’t that powerful.)

3. After you’ve accepted that you will say the wrong thing and you can’t cure illnesses, keep showing up–literally and figuratively.

Last week, I had breakfast with a woman whose husband has Alzheimer’s. She told me that she really only had one friend these days. All of her other friends had (as she said) “made like trees and left.” However, she managed to not be bitter. She explained that she knew it was hard for them to spend time with her and her husband. She realizes she and her husband are a scary reminder of what could be in her friends’ futures.

“They don’t know how to act,” she told me. “The life I’m living right now is terrifying to them. I get it and I’m okay with it.”

Maybe she was okay with it, but her justification of their absence made me feel like crying.

Setting Yourself Up for Success in Dementialand

dementia

In 2006, my husband Bill and I adopted a dog. Although Bill had dogs as kid, Gus-Gus (a kind of ugly but endearing rat terrier mix) was my first dog. He was no longer a puppy when I started thinking about signing up for obedience classes. I asked the teacher, Connie, if she thought it was “too late.” I had no idea how this dog training thing worked.

She told me, “Oh, we’re not really training the dog anyway, so it doesn’t matter how old he is. We’re training YOU.”

After starting the classes, I understood what she meant. Whenever I would complain about something Gus-Gus was doing “wrong,” she would point out how I wasn’t setting him up for success. According to Connie, Gus-Gus never messed up, but Elaine did. When he wasn’t well-behaved, I was failing to set him up for success.

A woman in the class had a goldendoodle who had freaked out at the farmer’s market and knocked over a whole table of vegetables. The women came to class the next week complaining that her dog was “wild.” Connie told her that she had failed to set the dog up for success. You don’t take an anxious, reactive, food-motivated goldendoodle to the farmer’s market and expect good results. You’re not placing him in an environment where he’s likely to succeed.

Although Gus-Gus has many great qualities as a dog, he does have a flaw. He doesn’t do well with children. He’s never bitten a kid or anything like that, but he’s obviously uncomfortable around them. If there are kids playing in front of our house, he barks at them. We once noticed he was doing this very low-grade growl while a diaper commercial was on TV. Since we don’t have kids, this is an issue we’ve been able to work around.

When we were house hunting this spring, there was a place I liked quite a bit. Amazing wood floors. Nice touches in the bathroom. Perfect layout for us. And then we looked out the back door. About five feet beyond our property line was an impressive park, complete with slides and monkey bars. This may have been perfect for another family, but I knew that this wasn’t the house for us. Putting Gus-Gus in this environment would not be setting him up for success. We crossed it off the list. (Yes, we took our dogs’ needs very much into account while house shopping. Feel free to judge.)

You probably think that I am going to make a leap from talking about dogs to people with dementia, and you might be prepared to call me out on this comparison. However, I’m going to outdo myself here and compare dogs to all of us, not just those with dementia. And, I’m going to start with college students.

I am a college professor, and I’ve started telling students to set themselves up for success. I don’t tell them I stole the phrase from the lady who taught the obedience class. Now, college students differ in some ways from dogs. One way they differ is that dogs must rely on others to set them up for success. College students should take responsibility for setting themselves up for success.

I was working with a student in setting up her schedule for the upcoming semester. In her program of study, she would need to take four business classes total. She had made it clear to me that she was concerned that these classes would be pretty rough for her. I looked at the draft of her schedule and realized she had three business classes listed.

“Why do you want to take three business classes at once when you could spread them out?” I asked her.

“I hate them and I want to get as many of them out of the way as possible,” she told me. We talked about the pros and cons of doing this. In the end, she decided to take three of the business classes in the same semester. I wasn’t sure it was the right call, but I encouraged her to make her own decision.

She came to my office hours after classes started. She was getting Ds in all three of her business classes. I asked her why she thought she wasn’t doing well.

“I just really suck at this business stuff,” she told me.

“Maybe you don’t suck that bad at the business stuff,” I responded. (Yeah, I know that I have a way with words.) “Maybe you failed to set yourself up for success by taking three at once.”

Here’s the issue with not setting yourself up for success…You lose confidence. If she had taken one business class at a time and done okay it, she might have realized that she wasn’t all that bad at business courses. Instead, she had decided she was worse than she thought.

Among my college students, I see students with 3.9 GPAs and students with 1.8 GPAs. I find that the 3.9 students aren’t always smarter. Sometimes they are just better at putting the odds in their favor and giving themselves every advantage to succeed.

I know someone who is not a morning person but signed up for a 5:00 am fitness class. When she didn’t go regularly, she told me that she just wasn’t able to commit to an exercise program. I’m not so sure that’s really the problem. Maybe she just didn’t set herself up for success. Can she find a class over the lunch hour? Or after work?

If I think about my “wins” in life, I can’t say I owe a lot to being hard-working, bright, or even motivated. I owe a lot to having an ability to set myself up for success. I wrote my dissertation in a timely fashion. It’s not because I’m incredibly smart or diligent. I think it’s mostly due to the fact that I had the forethought to cancel cable for the months I was finishing it. I set myself up for success on that one. (To be fair, I could also give you at least 77 examples of times I didn’t set myself up for success…like the time I had too much Riesling the night before a 20-mile marathon training run and had to bail at mile three….)

Now the jump to Dementialand….

As I mentioned, dogs need someone to set them up for success. College students–including those working on their dissertations–need to take responsibility for doing it themselves. Sometimes people with dementia can set themselves up for success, and sometimes they need a little guidance.

I met with a woman this week whose husband has Alzheimer’s and is struggling in public settings. He gets frustrated that others are being loud to the point that he’s gone over to diners at restaurants and suggested that they keep it down—even when they’re not really being loud. She tells him that he needs to calm down. Then, not surprisingly, he gets annoyed with her.

It’s not a great dining experience for either of him. Yet, they keep going out to eat and the pattern keeps repeating itself. She said they’ve had to ask for their food to-go several times because he has what she calls a meltdown. And then she confessed that she feels like having a meltdown because it’s such a disaster.

I explained to her a bit about how the dementia brain struggles to process lots of stimuli at once. In short, there is just too much going on for her husband to negotiate. His brain gets tired of working that hard, and he gets frustrated. He’s being put in an environment that is not a fit for him. In other words, he’s not being set up for success. What could be done differently to set him up for success? Could they eat out at an “off” time when the restaurant isn’t busy? Could they ask to be seated in a quieter area of the restaurant? Could they get take-out and go to a park?

I have seen plenty of examples of how people with dementia are capable of more than we think…if they are set up for success. I know a guy with dementia who was able to keep his job for several years after diagnosis because his employer was willing to set him up for success by modifying his work environment and job duties. A friend of mine with early onset Alzheimer’s started becoming anxious at the grocery store. It was “too much, too many choices, too many people.” She set herself up for success by shopping for food basics at the gas station/convenience store. It was smaller and less overwhelming. Her kids were able to go to the “big” grocery store when she needed specialty items.

A woman I know has learned that her husband with dementia can still brush his teeth–but only if she sets him up for success by leaving his toothbrush out for him. She also knows that he enjoys running errands with her, but if she asks him to go on a day when he’s tired, she’s not setting him up for success.

I have to admit that when I first meet someone with dementia, I take a mental snapshot of where they are at on their journey and what they may (or may not) be capable of doing. However, they are often able to exceed what I perceive as their limitations. I find that those who are able to surpass what I thought they were capable of are those who are able to set themselves up for success and have loved ones who support and participate in this effort. I should know not to make judgments about people’s abilities. I miss the mark a lot.

Yet, the more I think about it, that’s true of life in general…whether you live in Dementialand or not.

As for Gus-Gus, we still work on setting him up for success, even though he’s almost 10 years old now. That means if you bring your kids over, he’ll just hang out in the basement.

A Confused and Frightened Traveler in Dementialand

dementia

Last week, I was flying home from the Alzheimer’s Association International Conference in Washington, DC, when I did something that doesn’t make me proud. Actually, it’s more what I didn’t do than what I did do that has been bothering me.

I had spent the previous evening with my wonderful friend Dana, her boyfriend Brian, and their adorable (I do mean, adorable) dog Peanut. I think my Uber–a new experience–got me back to the hotel a little before 2 am. As I got up the next morning and packed up my suitcase, I found myself dragging a bit. Okay, maybe a lot. 

Then I got in a filthy cab with a driver who kept offering me gum. He told me no fewer than four times how much he enjoys Trident Peach Mango gum. He really, really wanted to share that gum. I was convinced the gum was actually laced with a sedative. I should’ve gone with an Uber again.

I had been told by several people that it would be more than adequate if I arrived an hour in advance of my flight out of Washington Reagan Airport. However, the security screening lines were ridiculous, and I got a little nervous. There were four lines from which to choose. I chose one of the center ones. As stated in the law of travel, the line you choose will be the slowest-moving line…and so it was.

I had been standing in this line for about 15 minutes when I noticed a tiny older African-American woman with a large suitcase on rollers standing outside the security screening area. Although she had on nice clothing, she had misbuttoned her shirt and it was half tucked into her long skirt. She looked confused, almost terrified. It seemed that she knew she needed to go through security, but she couldn’t figure out how to get in the line. She was pacing back and forth, muttering to herself, trying to interpret all of the lines and figure out where she needed to be.

I knew right away that she had a problem. If I were a betting person, I’d bet she had dementia. However, she could’ve had a mental illness, like schizophrenia. Maybe she took a medication that morning and had a bad reaction. I’ll never know. What I do know is that she seemed frightened. And hundreds, if not thousands, of individuals rushed around her. No one stopped.

It surprised me that she had gotten to the airport security area. I don’t know if she had checked in with the airline. I would hope that they would have realized something was wrong. I wondered how she got to the airport. It didn’t seem possible that she could have safely driven there. Had a family member dropped her off? Had she taken a cab? It amazed me that anyone would have dropped her off and assumed she could navigate the airport on her own.

As I watched everyone–business people, tourists, airport employees–pass her, I noticed that they looked at her, saw her distress, and then looked away. As much as I hate to admit it, it’s what I do when I see a homeless person. If you look away quickly enough, you can pretend you never noticed them. And if you didn’t notice them, you don’t feel obligated to help.

Why didn’t anyone help? I don’t think everyone who passed without helping her is a bad person. I’m sure some of those individuals were uncaring, but certainly not all of them. I think they didn’t quite know what to do. They weren’t sure what was wrong with her, and it made them uncomfortable. And, of course, some were in a hurry. After all, it was an airport. Some people turn into crazy self-absorbed beasts when they travel.

Looking back, I have to wonder if some of the people who saw her but didn’t help were also traveling home from the Alzheimer’s conference. I mean, there were 4,000 of us (Alzheimer’s researchers and practitioners) in DC. How’s that for irony?

Why didn’t I help? By the time I saw this woman, I had already been in line for 15 minutes. I watched her stare at the lines, not knowing what to do, for at least another 15 or 20 minutes. To help her, I would have had to get out of line. I wasn’t sure if I might be in jeopardy of missing my flight. If I missed the flight, I wasn’t sure how the university would feel about paying to re-book me. (Actually, I’m pretty sure I knew how they would feel, which is why I stayed in line.) I was sure that in time someone who had a few extra minutes would stop to help her. I hate to think of it this way, but I didn’t help because I thought someone else would help–someone who had more time. Are these good excuses? Absolutely not.

I work to promote the idea of dementia-friendly communities. I do community education on how we make can make life safer and more rewarding for people with dementia. And, yet, I saw someone with dementia who was struggling, and I didn’t do anything.

To be fair, I asked a TSA agent who was patrolling the lines if he might be able to go see if she needed help. He said that he wasn’t able to leave his post. When I finally got to the front of the line, I presented my boarding pass and ID to a different agent. I pointed out the woman and asked if there might be something that could be done. The agent barely looked up. She told me that the woman needed to get in line to go through security rather than just “pacing around.” (Well, obviously. Thanks, lady.)

I took my laptop out of my bag and removed my shoes. I kept looking back at this woman. She seemed to be getting more anxious and agitated. I made one more attempt to get her help. I told the agent who was shuffling travelers through the checkpoint that there was a confused and distressed woman who might need help. He herded me through without acknowledging he had heard me. I said it again.

He responded, “Ma’am, keep moving.” So I did…because I wasn’t sure what would happen if I didn’t. Even as a grown-up, I tend to be pretty obedient to authority. I looked back after going through the checkpoint to see the woman still pacing around and muttering to herself. I sat there, putting on my shoes, and watching her. I think she might have been crying by then but I was too far away to tell for sure.

If I had it to do over again, I would’ve gotten myself out of line to help her. I’m not sure exactly how I would’ve helped her and I might have missed my flight, but I would’ve figured it out. Sometimes you just do what you gotta do and worry about the details as you go. Do the right thing and deal with any consequences later. 

I was telling a friend this story a few days ago. She reminded me that I cannot help everyone with dementia, and it’s not my personal responsibility to do so. She said that there are certain situations that are out of my control and I need to stop beating myself up over this. She was trying to make me feel better.

I appreciated her consoling me…but it doesn’t change the fact that I was traveling home from a conference on dementia when I failed to help someone with dementia.

She’s right that I can’t help everyone with dementia, but I could have helped that woman.