Monthly Archives: December 2016

Lessons Learned From Writing About Dementialand for Two Years

alzheimer's, alzheimers, caregiver, caregiving, dementia, dementialand, Uncategorized

It’s hard for me to believe, but I’ve been writing this blog for almost two years now. This is my 125th post. Some good; some not as good; some fairly mediocre at best.

This adventure has been a far greater learning experience for me than for any of my readers.

Here are some things I’ve learned:

  1. I can’t write a blog post before 9 pm. I just…can’t. I’ve tried and nothing happens. The only exception occurs if I am at a coffee shop.
  2. I am better writer with exactly one glass of wine. One glass makes me more productive, but two glasses makes me fall asleep. (And, for the record, red gives me acid reflux.)
  3. I’m a writer. When I was a kid, I said I wanted to be a writer when I grew up. I even had a pen name, Keisha Wrippen (inspired by the actor, Keisha Pulliam who played Rudy on The Cosby Show). I wrote a series of books about the Kit family. They either had 7 or 17 kids. As a child, I loved to write. As a grown up, I love to write. Writing may not be my full-time job, and I may not make a cent off of this blog, but I’m a writer. Maybe I have been since I started that series on the Kits.
  4. My mom doesn’t like it when I use the word “crap,” as in “what a bunch of crap,” in my blog. I do it anyway because I’m a rebel.
  5. People are nice. I cannot tell you how much those of you who have reached out to me with a compliment or an interesting anecdote mean to me. I appreciate when you let me know that you relate to something I wrote. From the bottom of my heart, thank you. Connecting with all of you has been the highlight of writing this blog. (And a special shout out to those of you who subscribe via email. I am proud that you let me clog up your inbox along with those Nigerian princes.)
  6. People are not nice. I am not referring to most people, fortunately. Really, I think most people are nice, but I have had a few not-so-nice people write not-so-nice things in the comments of my blog. They are usually not directed at me. They are typically negative  and derogatory comments about people with dementia and/or older adults. I don’t “approve” these comments, so you can’t see them. For the record, I won’t “approve” them in the future, so don’t waste your time. If you are going to spread negativity, you’re going to have to do it elsewhere.
  7. Dementia is a tragedy, a comedy, and a love story all at once. The comments and emails I get from people range from sad, to funny, to heartwarming. To those who have started off a message to me with “I shouldn’t find this funny but….,” it is okay that you find it funny.
  8. On a related note, families impacted by dementia amaze me with their humor. They can find humor in the most challenging situations, and they need to stop apologizing for that. No, dementia isn’t funny, but the more moments of humor you can discover on this journey, the better off you will be.
  9. You can get Facebook messages from people you aren’t friends with on Facebook, but they seem to end up somewhere beyond the normal Facebook realm. I just discovered about 25 Facebook messages that readers have sent me over the past couple of years. I apologize for not responding. I wasn’t blowing you off. I still have a lot of learn about the intricacies of social media.
  10. Writing makes me look at the world differently. Instead of thinking a situation has gone poorly or feeling that something is futile, I ask myself what I have learned that I can share with my readers. Realizing that there is a lesson to be learned or even a conversation to be started has made me look at the world with a bit less negativity and more of an eye toward progress.
  11. People with dementia are pretty amazing. Many of you write insightful responses to my blog in the comments, and some of you have your own writing outlets where you express your experiences and ideas. I want you to know that I appreciate this. It’s not easy to put yourself out there when you have a dementia. You are brave, and I cannot thank you enough for teaching me. Your voice will always be stronger than mine when it comes to educating people about dementia. Special thank you to Melanie and Lisa, who have courageously put a face on younger-onset dementia. When I think of the reasons we need to continue to do research on dementia, you and your families are at the top of my list.
  12. I need to stop making assumptions. There are so many times when I size up a situation and think someone is going to be struggling, and they’re okay. Sometimes I think a certain situation is going to be difficult for a caregiver, and they tell me it really wasn’t that bad. On the other hand, I sometimes don’t think much about a situation and realize later how difficult it was for a family. I don’t know unless I ask. We are diverse human beings. We interpret the world differently. Sometimes I try to empathize with a person, but what I’m really doing its projecting how I think I would feel onto them–but they are not me. That’s not really empathizing. It’s assuming.
  13. Reality isn’t as important as connection. If there’s a lesson I’ve tried to convey repeatedly, it can be summed up by that phrase. As I write about Dementialand, visit Dementialand, and talk about Dementialand, I am pleasantly surprised at how people can connect in a positive way despite not sharing a perception of their relationship and the world around them. I could write pages of transcripts of conversations that would make no sense to outsiders. The sense comes from those of us who choose to connect with people with dementia rather than correct them. I’ve noticed that ironically sometimes those with dementia are choosing to do their same in their interactions with us. Sometimes reality isn’t all it’s cracked up to be. We can see the world differently and still connect…I think there’s a lesson there in this age of America.

So that’s it. Or maybe that’s not it–because this is only a small portion of what I’ve learned.

See you in 2017!

Happy Holidays from Dementialand (aka I Wish You Survival With Some Moments of Joy Thrown In)

alzheimer's, alzheimers, caregiver, caregiving, dementia

I wasn’t going to write a post this week. I’m on holiday break from the university, and I thought I’d take a holiday break from writing as well.

Yet I’m awake late into this Sunday night and rather than watch more reality TV or spend more money on Amazon.com, here I am with my laptop sitting in bed.

And I have a message for my families impacted by dementia. Caregivers, this is for you. The more overwhelmed, burnt out, and broken you feel, the more I want you to read this.

I wish you a happy holiday season. Or, for some of you who are really struggling, maybe happy seems a bit unrealistic. In that case, I wish you moments of happiness within a season of survival. I hope it’s not as a bad as you think it might be. Maybe it’ll be kind of like going to the dentist. The experience isn’t usually as awful as the expectation.

The holidays are a lot of fun–most of the time–for many of us–unless they aren’t. I work with many families affected by Alzheimer’s or a related dementia who look forward to Thanksgiving, to Christmas, to New Year’s…and have the most joyous time. Dementia by no means disqualifies you from having a wonderful holiday season. However, it can create some challenges.

Recently I’ve heard the following statements from family members of those with dementia:

“The kids are gonna come back to town and realize how much Mom has changed. They’re gonna tell me to put her in a home and I’m not ready.”

“My wife has dementia and I’m supposed to take her to this party. They won’t take no for an answer, but it’s gonna be a disaster.”

“I want to bring him home from the nursing home for Christmas, but I’m worried he’s gonna get aggressive when he realizes we’re taking him back.”

“I’m dreading another Christmas dinner at the assisted living where we all act like we want to be there.”

“I hate watching the grandkids around her. She gets so frustrated with them. She yells at them, and they don’t understand why.”

“Dad says totally inappropriate stuff now. I don’t know where I should take him and where I shouldn’t. And he has these angry outbursts. I am praying Christmas day is a good day for him.”

If someone in your family is impacted by dementia and you find yourself making statements like this, you’re not doing anything wrong. This is tough.

It’s not just dementia that you’re dealing with here. It’s your family dynamics. It’s friends who don’t understand. It’s people who still think dementia is about “people becoming a little bit forgetful when they get old.” You live in a world where people still don’t get it.

I don’t have any magic advice. The best I can do is to tell you that you may have to change your expectations. You may need to force yourself to find small blessings or moments of joy within what sometimes seems like a trudge through snake-filled quick sand.

The people who cheerfully work at the nursing home on Christmas day.

The neighbor who understands you are overwhelmed and shovels your driveway.

The joyful expression on your mom’s face when she sees she has just received a gift–even though she already opened that gift hour ago.

The friend who unexpectedly delivers a homemade fruitcake with a card. (And, no, it doesn’t matter if you like fruitcake.)

The families of the other residents at the nursing home who try, as hard as it is sometimes, to spread some Christmas cheer.

If you look hard enough, you’ll see the positive. I promise it’s there somewhere–for all of us. It gets buried when we go through rough times, but that’s when it’s the most important to uncover it.

And one more thing…this is important…you may have loved ones who visit from out of town and haven’t seen the changes in your family member with dementia. They may be taken aback at these changes, and they may imply or outright state that you are doing something wrong as a caregiver.

They will tell you about the internet article they read about vitamin E and dementia. They might suggest that your family member should be in a nursing home. If they are in a nursing home, they may suggest that your family member shouldn’t be in a nursing home. They may suggest your family member with dementia visit a chiropractor. They know A LOT about dementia…because they have seen a bunch of articles pop up on their Facebook feed. (Yeah, that’s sarcasm on my part. And, no, I’m not sorry.)

I don’t mince words on my blog, so here goes: SCREW THOSE PEOPLE. I’m sure they are well-meaning, but I give you permission to turn and walk away. You don’t have to get into an argument. In fact, I recommend you don’t get into an argument because you have limited time and energy, and I don’t want to see you waste even a small bit on an unproductive argument. Promise me, however, that you won’t let these people make you feel guilty. And, hey, if you give me their names, I’ll call them and tell them to zip it.

This holiday reason, be realistic. Don’t be too hard on yourself. Fake a smile but acknowledge that this might not be the holiday season you envisioned. Don’t be afraid to say no to holiday gatherings. Don’t apologize for leaving early. Stop worrying if you didn’t buy a present for everyone who is distantly related to you by blood or marriage. If it works to stay in your routine, stay in your routine. Remember that people who are critical of your caregiving just don’t get it. And when something goes horrible wrong, don’t be afraid to cry or to laugh. Either response is perfectly acceptable in my book. No judgement here, folks.

Happy holidays. You’ve got this. You’re gonna survive, and you’re gonna find a few good, or even great, things to focus on throughout the journey.

Accepting the Gift in Dementialand

caregiver, dementia, nursing home

A woman once relayed to me a story about her 90-year-old mother, Ellen, who had Alzheimer’s. Ellen was at a large family Christmas gathering.  She received a shiny red gift bag with bow on it. With some prodding, she opened the bag. Inside she found a pair of cozy socks. She seemed mildly excited and thanked the gift giver. She then put the socks back in the gift bag.

About five minutes later, Ellen turned to the person on her left and thrust the gift bag onto her lap.

“For you!” she exclaimed. The woman declined the gift, reminding Ellen that it was a gift for her and that she had opened it a few minutes ago. Ellen seemed a little sad and quite confused, and she sat quietly with the bag in front of her.

Later in the evening, Ellen noticed the gift bag again, and she tried to give it to another family member. The family member told Ellen that the socks were a Christmas gift for her, and that she should take them back to the nursing home and enjoy wearing them.

Ellen’s attempts to gift her relatives continued. Each person offered the gift turned it down and explained that Ellen had opened it earlier in the evening.

At the end of the night, Ellen’s daughter drove Ellen back to the nursing home. Ellen placed the gift bag containing the socks on her nightstand.

The next day, Ellen’s daughter visited the nursing home. A nurse told her that she wasn’t quite sure if the socks were supposed to be a gift for another resident, but that she had watched Ellen wheel herself down the hallway and hand the bag to another woman with dementia.

The woman looked in the bag and broke into an excited giggle. Ellen beamed. The nurse said that two woman, both of whom struggled to communicate verbally, sat in their wheelchairs exchanging giggles and smiles for a minute or so. Then Ellen turned her wheelchair around and returned to her room with a little extra vigor (as much vigor as a 90-year-old woman with Alzheimer’s in a wheelchair could muster). The nurse said she was moved to tears at the interaction.

It occurred to Ellen’s daughter that what her mother wanted the most was to be able to give a gift. It took a bit of work for her find a willing recipient, but she finally did.

Hearing this story made me think of spending time at the nursing home where my mom worked when I was a kid. Residents were always calling me into their rooms and offering me…things. All sorts of thing. I’m not sure if I was taught this by someone or if I just did it intuitively, but I accepted the gift. Even if it was something I had no interest in, I accepted the gift.

The gift might have been a piece of candy that had been in someone’s room for several years. (Did you know that really old milk chocolate turns white?) The gift might have been the banana that someone won at Bingo. Once in a while it was something someone had made, like a knitted scarf. I remember someone giving me one of those small packs of Kleenex (already opened) that you keep in your purse. Obviously, I would have not been able to accept a gift of valuable jewelry, but by accepting the gift, when possible, I made the gift giver happy.

Dementia can take away a person’s ability to give to others like they have been able to throughout their lives. A woman in the early stages of Alzheimer’s recently told me that the hardest part of her dementia journey thus far was that family and friends could no longer count on her. More than anything, it had always been her priority to be a giving family member and friend. She felt like dementia had stolen her ability to give. She told me that when she was able to give, the people around her often declined those gifts because they didn’t want to burden her. She struggled to explain her need to give in those areas where she was still able to give.

Let’s face it. Gifts are a big part of the holidays. Most of us have bought someone a gift that we were really excited about. As an adult, I seldom think, “I can’t wait to see what Mom got me for Christmas.” I am more likely to think, “I can’t wait to see Mom open what I got her for Christmas.”

Imagine showing up at an event where everyone was giving each other gifts without a gift to give. It wasn’t an issue when we were kids, but showing up empty-handed to a gift exchange is something that causes a feeling of anxiety for most grown-ups. I actually once went to a work Christmas party where attendees were supposed to bring a gift worth less than $25 for a gift exchange. I apparently didn’t read the E-vite thoroughly enough. I considered using cash for the gift exchange, but I only had $3. I went the bathroom, contemplated my options, and snuck out the side door.

I’ve heard stories about people with dementia re-gifting or giving slightly (or not-so-slightly) used gifts. Grandma gives her daughter a pair of gloves that her daughter gave her last year. I know a lady who gave a friend a half-empty bottle of perfume for Christmas. Someone in my own family once gave a friend a tube of lipstick that had obviously been “pre-used.” You might think these gifts are less than thoughtful, but the opposite is true. People with dementia are doing the best they can with ongoing cognitive changes, and those gifts probably took many times more effort than the presents I buy for my friends and family during the holiday season.

When someone with dementia offers a gift, accept the gift. It’s that simple.

Accept the gift.

Even if the dark chocolate has turned white. Even if you don’t like bananas. It doesn’t matter.

To connect with someone, you always accept the gift.

 

Improv and Dementialand (aka There Are No Scripts in Dementialand)

dementia, dementialand, lewy body dementia

I have a friend named Drew Dotson. She lives in Atlanta and performs at an improv  comedy theater. Not only does she perform improv (and does so amazingly well), she teaches improv. If you’re not familiar with improv, think of Whose Line is it Anyway, only the Drew I’m talking about is more impressive than Drew Carey.

Drew also has a family member with dementia. It was during a conversation with her that I came to see a connection between improv and dementia. To be fair, I can’t take credit for that realization. I think Drew actually said, “Dementialand sounds a lot like improv.”

I did some thinking. I pictured Drew and I traveling around the country doing trainings for dementia care based on principles of improv. I was thinking of all the hotels we’d stay at, the free continental breakfasts we’d share, the bonding time and snacks we’d have on the road as highly sought after public speakers….

A day later I Googled “dementia care and improv.”

Bubble burst.

Unfortunately, or maybe fortunately, the idea wasn’t unique. In fact, there’s a TedTalk out there on the topic:

http://tedmed.com/talks/show?id=526821

It’s the TedTalk that Drew and I could have done had we had our conversation a bit earlier–but that’s okay. The bit of information out there linking improv to dementia care has helped me to understand why spending time in dementialand has been valuable for me…and made me a better person.

As dementia progresses, interactions with people can become more unpredictable. I have had to let go of my expectations of that interaction, just like you have to enter an improv scene without expectations of where the scene might be headed.

This is very much in contrast to the rest of my day, which is often taken up by university meetings with agendas emailed out in advance. At work meetings, I am known for efficiency. In fact, a colleague once mentioned to another colleague that I was “brusk” during meetings. I probably should’ve been insulted, but I took it as a compliment to my efficient nature. We stick to the agenda. We get through the agenda. We conclude the meeting.

Visiting dementialand means dropping any agenda at the door. It means letting go of any expectations of what will be accomplished during the interaction. I’ve even started to think of interactions with people who have progressed dementia like scenes in improv theater. I am participating in the scene, as is the person with dementia. I cannot allow myself to dictate the scene.

Just like in improv, all players have to have equal status–even if some of those players have limited verbal communication skills. I can’t write the script in advance. If I try to do that (and I have), the scene usually turns into a disaster. There are certain areas in my life where I lack flexibility. Dementialand is not one of those areas. You don’t survive in dementialand if you are rigid and inflexible person.

In my limited knowledge of improv, I understand that the first rule is to SAY YES! Don’t say no to a suggestion. Agree. Go with it. Wherever the scene goes, you follow. As a college professor, I often have to keep a class on track during our class meeting time. I have to judge whether or not where I think the students are headed on that particular day is useful for their learning. And then I might have to right the ship. I can’t always say yes. I can’t always go with it. Back to the agenda, so to speak. I also have to correct and clarify any information from other players (in this case, students) that might be factually inaccurate. Dementialand is different.

Case in point…I was spending time with a group of people with moderate dementia last week. We were doing an exercise where we were trying to name different types of flowers–an exercise that was dictated and moderated by me.

And then, out of the blue, this conversation evolved:

Person #1: I have a question for you. Do you take calcium pills?

Me: In fact, I do. I take one every morning.

Person #2: On TV they said that calcium makes your bones break.

Me: I hadn’t heard that. I’d better be careful then. I’ve taken them for a long time now.

Person #2: Don’t ride your bike. A car will hit you.

Person #1: Not always. You don’t always get hit by a car when you ride your bike. I know people who ride their bikes and never get run over.

Person #2: ALMOST always though. Maybe not ALWAYS.

Person #1: Then don’t ever ride your bike, Elaine. We love you and don’t want you to break.

It was the nicest thing anyone had said to me all day. Maybe all week. If I had tried to dictate the scene and make them continue to list types of flowers, I never would have heard it.

Sometimes when I ask a question in dementialand, I don’t get an answer to that question. Sometimes I get information that is tangentially related to the question I asked; sometimes I get information that is completely unrelated to the question I asked. If these were answers to my college students’ essay questions on an exam, they wouldn’t score well. I would be handing out loads of Ds and Fs like candy. But this is dementialand; not a college class. The rules are different. My role is different.

I have found that I learn the most when I listen, really listen, to the response to a question I ask someone with dementia–even if the response isn’t actually an answer to my question. I need to let go of my question, which I often realize wasn’t all that important anyway.

When I ask someone about their wife and they tell me about their dry skin, that’s not a fail. When I question someone about whether they are enjoying the weather and they tell me about their brother who died in the war, it’s okay. Sometimes I ask a question and get an answer that is based on their reality rather than my reality. In other words, their answer makes no sense to me. I’ve learned to roll with that rather than allow it to end the scene.

In fact, sometimes the conversations that make the least sense are the most fulfilling for me. I had a great conversation with a guy with younger-onset Alzheimer’s a few weeks back about the drawstring on his pants. He seemed to think they were worms and snakes crawling out of his stomach, although he wasn’t at all bothered by them. Then he pleasantly warned me about the bugs that he could see crawling around under my scalp. (And yes, I was somewhat itchy the rest of the day.) The connection happens when I tune in to what someone wants to tell me rather than trying to script the conversation.

When you follow improv rules in dementialand, dementialand becomes a more positive, rewarding place. It makes interaction easier for those with dementia, but (and I’m being selfish here) it also makes things a lot for fun for me.