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

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.

Critical Nitwits in Dementialand

I was speaking at a support group when an older woman told me that her husband, who had Alzheimer’s, needed 24/7 care. She said she was able to be home most of the time, but she was continuing to work about ten hours a week at a liquor store. She explained that her job paid little more than minimum wage. She paid more for her husband’s care than she made at the liquor store. A lot more.

Then she listed off the reasons that she kept the job. First, she enjoyed it. She liked the social aspect of talking to people about booze. Second, she wasn’t sure if she could get the job back if she quit, and she didn’t know what the future held. Third, she needed to get out of the house sometimes or she would lose her mind. Fourth…I stopped her before the got to the fourth reason. I don’t know how many reasons were on the list.

“You can stop justifying this to me,” I told her.

“So you understand?” she asked.

I did understand, but that didn’t really matter. What did matter was that she understood. She understood her reasons for continuing to work, and they made sense to her. That’s what mattered. She may have been looking for some support for her decision to keep working, and I get that. However, the way she justified her decision to me indicated that she felt the need to justify it to others in her life as well. It bothered me that she felt the need to defend her choice to continue working.

Caregivers have to make a lot of rough decisions. Sometimes those decisions are supported by others. Sometimes they are not.

I don’t understand how you can put Dad in a nursing home.

I don’t get why you are touring assisted livings. Grandma is fine at home.

It doesn’t make sense that you took her off that drug.

Mom is a safe driver. You broke her heart when you took her keys away.

Most people with dementia have one or two primary care partners. I often work with these primary care partners, who feel that their decisions are criticized by those a bit more removed from the situation. And these care partners spend a lot of time explaining and justifying their decisions.

I used to try to help these care partners come up with ways to effectively communicate their reasoning. To some extent, I still do this. However, I’ve shifted my focus to helping care partners cope with those in their life who might be judgmental of their decision-making.

If you are a care partner who is questioned about your decisions, explain concisely why you did what you chose to do. And then…stop explaining it. Just stop. If they don’t get it after one explanation, they won’t get it after 27 explanations. Just move on with the knowledge that you are doing the best that you can. And that’s all you can do.

We make the best decisions we can with the knowledge we have at the time. Sometimes we make bad decisions in caregiving, as we are prone to doing in other areas of life as well. Maybe your family and friends are eager to point out when you’ve made a bad decision. Some people are like that. You can’t change them.

Often it’s a relative who shows up in town for a weekend and has “all the answers.” (Yeah, that’s sarcasm. In fact, I speak fluent sarcasm.) Sometimes it’s a friend whose well-intentioned advice isn’t that helpful. I see caregivers who spend a lot of time and energy explaining their decisions to these people, and caregivers don’t have excess time and energy. So you know what? Stop explaining yourself. Stop justifying your decisions. Just stop.

There are two types of people. The first type of person understands you and supports you. There is no reason you need to explain or defend yourself to them. They understand that maybe your decision is different than the one they would have made, but they are a different person than you are. They understand that you have to do what works in your situation. They get it. If you are lucky, you have many people like this in your life. If you don’t, you need to find more…immediately.

Then there’s the second type of person. Perhaps you have a few of these people in your life. (Well, if you are lucky, it’s only a few.) They look for fault in the people around them. They forget that different things work for different people. They expect that everyone is like them and should make the same decisions they would make in similar circumstances. They listen with the goal of finding fault in what they hear rather than finding understanding or common ground. If you have many people like this in your life, you may need to reassess your social circle…immediately.

There’s no reason to justify your decisions to the first type of person, and it’s futile to explain them to the second type of person. Save your breath.

We can’t always eliminate the second type of person from our lives–although when it’s reasonable, it’s worth considering. What we can do is stop trying to win their approval…because we never will. You set yourself up for failure when your confidence about your caregiving decisions is dependent on critical nitwits. You have to find a way to care less about they think. You’ve got to tune them out.

The best way to do this is to fill your life with as many supportive people as possible. You need to find people whose supportive voices drown out the unsupportive voices. Maybe you find these people at a support group. Maybe you find them online. Maybe they’re at your church. But you find them.

If my husband had Alzheimer’s and needed 24/7 care, would I work ten hours a week at a liquor store even if the job actually cost me more money than it paid?

Maybe. I’m honestly not sure. But it doesn’t matter.

It doesn’t matter because the woman at the support group is not me. We are different people. What works for one caregiver may not work for someone else.

She didn’t have to explain to me why she kept her job. It doesn’t matter if I get it. It matters that she gets it.

Aggressive Behavior in Dementialand

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

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.

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 .. 

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)

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

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)

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

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.

Conferencing in Dementialand (or What You Learn by Observing Minglers)

I’ve spent the last few days at the Alzheimer’s Association International Conference in Washington, DC. You may have seen some news articles discussing the research that was presented at the conference. Although the conference had some research on psychosocial therapies and technologies to help people with dementia, it’s not surprising that perhaps that biggest headline to come out of the conference pertains to a drug that could possibly slow the progress of Alzheimer’s in the early stages of the disease—if it pans out. And I’m cautiously optimistic that it will have a significant benefit for some individuals with the disease. If you think I’m tempering my enthusiasm, you’re right. I often do this in response to the media overstating the effectiveness of a potential treatment that may be years away from being available anyway.

Sometimes I hear individuals with Alzheimer’s and care partners make comments about how slow progress is in the area of Alzheimer’s research. And I can’t blame them. We’ve been slow to go to battle against dementia in general. Funding has been limited. We’ve traditionally viewed Alzheimer’s as an “old person’s disease” and we’ve thought of better ways to spend our money than on our aging population. Furthermore, protocols to ensure the safety of any drugs and therapies are stringent to make sure treatments are safe for humans before they are used. And, sure, this means longer time periods before we can try therapies with individuals who could benefit from them.

A man with Alzheimer’s told me recently that he’s given up hoping that there will be an effective way to slow or stop the disease in time to help him. Now he just hopes that there will be something to help his children. I wanted to tell him that I thought something would be available in time to make a significant difference in the course of his disease, but I couldn’t. With reasonable confidence, I did tell him that I thought we would have more treatment options for his children if they were to be diagnosed.

Here’s why I could look him in the eye and tell him that…

My dementia-related research publications are in the area of professional and family caregiver knowledge, education, and intervention. In sum, it’s psychosocial. When I talk about my own research, I’m not talking about drug trials, PET scans, and biomarkers. I’m not talking about genes or neurodegeneration.

However, this week I was in a world where neuroscience nuances were hot topics of conversation. I’ve been told I have a very distinct “concentration face,” and I’ve been told that face looks a bit angry—even though it isn’t intended to be. I have a feeling I was wearing my “concentration face” while trying to process this stuff.

It was good for me. I need to be up-to-date so I can convey scientific knowledge to individuals and families. I teach this stuff in my college courses. And it helps me to understand why people with Alzheimer’s think, feel, and behave in the way that they do. It also reminds me not to be complacent because I have a lot to learn. However, the biggest reason it’s good for me is because it makes me more optimistic.

At this point, research is at an exciting place, but it still moves slower than we all wish it did. What makes me optimistic is not just the research…it’s the researchers. I read a lot of research articles about Alzheimer’s…but seeing a group of researchers proudly present the state of their project to a crowd of fellow scientists, professors, practitioners, and press? It reminds me that this is about people.

It’s about people with dementia, of course. It’s about their families and care partners. Then we’ve got professionals, like individuals who work for the Alzheimer’s Association and work tirelessly for advocacy and fundraising. Others work in nursing homes or memory care communities and see individuals who struggle with Alzheimer’s on a daily basis. What I want all of you to know, despite what you might think about the level of funding of Alzheimer’s research compared to research for some other diseases, is that the researchers are in this, too.

I met researchers at the conference who work 80 hours a week. They sacrifice time with their families (maybe to a fault) and forego vacations. They are committed and passionate. Some of them actually have little direct contact with those with dementia. They spend their time in a lab, maybe doing statistics or looking at brain scans. You might think about their daily routine and think they are detached from the actual day-to-day life of those affected by Alzheimer’s. If you have Alzheimer’s, it’s true that they might never really know what you’re going through. Maybe they will never know the challenges of a family care partner. But I want you to know that they are in this as well. And they do care. It’s more than a job. It’s their purpose.

At the conference, there was an area in the lobby with a huge sign that said “Mix and Mingle.” If the thought of that sign makes you cringe because you’re slightly socially awkward, we might be kindred spirits. (When I was a kid, my parents told me not to talk to strangers. I still typically follow their advice.) I spent just a bit of time in the mingling area—much of it on my laptop feeling like a kid standing in the corner at a middle school dance. My thoughts alternated between “Somebody PLEASE talk to me,” and “I hope nobody tries to talk to me.”

But I did eavesdrop on mingling. I’m much better at observing and analyzing human interaction than participating in it. There were some conversations about when it was best to take an Uber versus a cab (quite useful for someone who lives in Cedar Falls, Iowa) and how the heat index was well over 100 degrees. This is also how I learned about the National Crime and Punishment Museum, which happened to be right down the street and was the best $21.95 I’ve spent in a while. However, much of the conversation I (over)heard was about…Alzheimer’s.

The researchers could have gone to sit at their hotel pools or see DC attractions during conference breaks, but they didn’t. They hung out and talked about…Alzheimer’s.

Sure, you can make some pretty negative accusations about huge money-hungry pharmaceutical companies. I am not naïve to how they drive research in the field. But this is about people. And this week I got to meet some pretty motivated, bright, and optimistic people. It’s those people that will eventually crack Alzheimer’s.

Earlier this summer I was talking to a women with whose husband had passed away from Alzheimer’s. When she asked if I was going on any trips this summer, I told her that I’d be attending this conference.

She said, “You tell those nerdy scientists that they don’t know everything about Alzheimer’s until they see their spouse waste away from it.”

She’s absolutely right. They don’t know everything about Alzheimer’s. They may not know what it’s like to have the disease or what it’s like to be a care partner. But that’s not going to stop them from working 80 hours a week to find effective treatments and an eventual cure.

Welcome to the Real and Non-Perfect Dementialand World (and What to Say if You Want to Make Me Super Angry)

I overheard a bunch of people chatting before a support group meeting. There was a middle-aged guy updating some other family care partners about his wife with dementia. I need to tell you that I am going to change a few details here so this person isn’t as identifiable. It’s pretty typical that I do this, but I’m making a special effort here because I need to tell you about something he said that had me pretty bent out of shape.

The man was well-dressed and handsome. He seemed confident, and I could tell that he was a long-standing member of the group that others looked to for support. I couldn’t help but think he looked a bit like a younger-ish Harrison Ford…think somewhere between Star Wars and The Fugitive. 

He explained that his wife was continuing to live at home, although her condition was progressing. She was now unable to walk without assistance. She needed help with bathing, toileting, and eating. He told the group that his friends and siblings were trying to convince him to considering placing her in a nursing home, but he “could never do anything like that to his wife.”

“I love her too much to put her in a place like that,” he said, shaking his head with a huge emphasis on the word “that.”

I know he loved his wife. I know he was committed to keeping her at home because he cared about her. Yet his comments made me cringe. I cringed because a lot of people love their family members with dementia but are unable to keep them at home. I cringed even more because I knew he was talking directly to some of the people who were unable to keep their loved ones at home, and I worried he was making them feel like crap. Everyone’s situation is different, and his comment came off as judgmental considering his audience.

I do a good job of biting my lip in such situations, but my husband tells me I don’t have much of a poker face. I’m sure I was glaring at this guy. If looks could kill, he would’ve dropped dead before the support group meeting even started.

I have no doubt that this gentleman was a tremendous care partner for his wife. However, he also had some resources that helped him keep her at home; some resources that not all care partners have. First, he was in his late 40’s and in good physical condition. He was able to lift his wife, who happened to be much smaller than he was.

I found out later that he was a successful business owner in the town I was visiting. Although he had a busy career, he could often work at home and had the ability to make his own schedule. In addition, he had the financial resources to hire in-home assistance for a several hours a day. Furthermore, he seemed to have friends and family who were willing and able to come over to give him a break when he needed one.

I give the guy a lot of credit. He had a system in place that allowed him to keep his wife at home at a point when many people with dementia have transitioned to a nursing home. It took organization and dedication, and I have no doubt he did it out of love. He had the option to keep her at home. It’s wonderful he was able to do so, but it isn’t the right decision or a feasible alternative for everyone.

I have to be honest and tell you that his line about “loving her too much to put her in a place like that” really stung. I don’t think he meant to offend, but that doesn’t change the fact that it just plain hurt. It stung professionally because I work with many family care partners who must make the choice to place a loved one with dementia in a facility–not because they don’t love them–but because it is the best option they have with the resources they have available.

It’s a rough choice to make, and I spend a lot of time telling these care partners that they need to let go of the guilt. I care about these people, believe they love their family members, and know how hard they’ve tried to make the right decisions on a difficult road.

Perhaps it also stung me personally. My grandma spent a short time in a nursing home at the end of her life. Although I’m sure he didn’t mean to, this guy had implied that my family didn’t love her enough. We did love her enough. That guy should be glad I didn’t tell all my cousins about his comment.

Love is important. I don’t know what life is without love. Yet, love doesn’t erase our financial, physical, and emotional limitations. We can’t all quit our jobs to care for a loved one 24/7, and not everyone has a flexible work schedule. I talked to a care partner who recently told me that she had exhausted all of her vacation taking her mom back and forth to Mayo Clinic to see a neurologist–before her mom even had an Alzheimer’s diagnosis. Her boss had told her if she had to leave work again due to a crisis with her mom, she’d be fired.

Some care partners have kids. The other day I talked to a stay-at-home mom who takes care of her three young children during the day. It seems as if some members of her family have assumed she can help her mother-in-law with dementia during the day….because she doesn’t work. (I have to be honest in telling you that taking care of three small children seems like more work than what I do at work.) Even the most amazing women have their limits.

Sometimes in our attempts to keep our loved ones with dementia at home, we overlook potentially risky situations. They may be risky to the person with dementia (e.g., wandering, falling down stairs), but they may also be risky to the care partner. It’s no secret that caregiving for someone with dementia can take a toll on a care partner’s heath. I’m talking about both physical and mental health. (No matter how much tiny women love their spouses with dementia, they still can’t lift large men without getting hurt. And people need sleep.)

I can show you research that supports this, but I’ve seen plenty of first-hand evidence as well. Often, it is not a change in the person with dementia’s health that triggers placement in a facility. People with dementia frequently move to nursing homes because their loved ones have increased health concerns and can no longer provide care.

I recently met a school counselor whose husband has Lewy-Body dementia. She knows he will soon need 24/7 care, and she understands that it is not realistic, considering her family situation, that he will stay at home for the duration of his disease. She is struggling with the right time to transition him to an assisted living.

I was livid when I found out that one of her immediate family members had said to her, “If he were my husband, I’d quit my job to keep him at home.” I’m pretty sure she could see the veins in my forehead when she told me this… Sure, if you are financially able to quit your job and this is the right option for you, that’s fantastic. But this is the real world. Who is going to pay the mortgage? And this particular woman said that her job was the only thing keeping her sane on this journey.

Someone I know said something a few weeks ago that has stuck with me. I had what Oprah would call an “aha moment.” This woman told me that her daughter had been raped decades earlier. After the rape, many people made comments that started with “If that were my daughter, I would….” Of course, they would then end the statement with something that she had not done. She promised herself that she’d never make a similar statement to someone who was going through a tough time. After she told me this, I made the same promise to myself.

I’ve heard many people say that they would never place a loved one in a long term care facility. If you want to see the veins in my neck pop out, say that to me. In a perfect world, we could confidently say we’d never make that choice. If this were a perfect world, I could say that my love would keep my family members from living in a nursing home. But this is not a perfect world. Love doesn’t keep people from getting sick or make them better, and it certainly doesn’t prevent nursing home admittance.

Here’s the take home message…You may have had to make the hard decision to transition your loved one to an assisted living, nursing home, or memory care community. (And if you aren’t there yet, this may be in your future, whether or not you realize it.) You probably struggled with it. You hoped the timing was right, but you’ll never know for sure. Some members of your family may have even disagreed with you on some aspects of this decision, and you had to defend your thinking…when you weren’t so sure yourself. There were probably moments where you felt like an awful person.

Don’t let anyone make you feel like you made the wrong call because it’s not the one they made or because they claim it’s not the one they would make if they were in your shoes. Maybe they made a different call, but they are a different person in a different situation. And if they haven’t had to make that call, they should shut up about what they would do–because they really don’t know.

You are not less of a care partner because your loved one lives at a facility. Your responsibilities may be a different than if your loved one lived with you, but you are not less competent, less caring, or less worthy. Don’t feel like a failure. Stop second-guessing yourself. Stop feeling guilty. Stop worrying you’re not a good wife, husband, sibling, daughter, son….

You did the best you could with the options that were available to you. Sometimes life presents us with a bunch of alternatives, and they all suck. (I’ve tried to rephrase that last sentence about ten times but I can’t come up with anything better. Sorry.) You have to pick the one that sucks the least, for you and for the people you love. And then you move on and make the best of it.

Welcome to the real and non-perfect world.