Category Archives: dementia

Why You Shouldn’t Start Statements with “At Least” in Dementialand (And Elsewhere)

alzheimer's, dementia, lewy body dementia, pwd

I read something recently that made me think.

A woman who had been through a heartbreaking crisis that ended in the death of her infant suggested that people who try to console others should avoid statements that start with “At least…..”

This didn’t impact me at first–but then I thought about all the “At least” statements we throw around, trying to help but hurting.

When a woman has a miscarriage, we tell her at least she can have another baby.

When a married couple can’t get pregnant, we tell them at least they can still adopt.

When a person dies suddenly, we say at least they didn’t have to suffer.

When a person dies slowly, we say at least you had time to say goodbye.

When parents lose a child, we say at least they have other children.

These statements come from people who are well-meaning. They come from people who are trying to help…but they don’t help. They don’t help at all.

There are other (less dire) times that we hear statements like this. Last semester I was on a time-consuming, although rewarding, work committee that was somewhat stressful and required me to sacrifice a few weekends and many evenings. As some other committee members and I were sitting around at a hotel bar after a day of tiring meetings and venting about the experience, one of them said to me, “At least you don’t have kids.” Um. Thanks. (I guess not having children makes my time less valuable.)

Statements that start with “At least” are often made to those in Dementialand. Here are some comments that families have relayed to me or that I have overheard:

At least it’s not cancer. (Comparing who has the worst disease is seldom helpful to anyone.)

At least it’s not terminal. (Ummmmm….insensitive and also inaccurate.)

At least you have a great family. (One guy told me a friend said this to him and he responded, “Yeah, and I love the idea of putting them through this.”)

At least it’s not something physical. (This one typically comes from someone without a knowledge of dementia.)

At least it’s something that progresses slowly. (I find that the idea of the slow progression is one of the scariest pieces of dementia to some people.)

At least there’s a medicine you can take for that. (Yeah–but the medications don’t slow or stop the disease.)

At least you won’t know what’s happening when things get really bad. (REALLY?)

It’s true that things can always be worse, but attempting to point out how they could be worse to a person in the midst of crisis is not helpful. The next time you try to find the right words, make sure those words don’t start with “At least.”

Don’t focus on putting a silver lining on dementia. Maybe they’ll somehow find that silver lining  in the midst of the tsunami, but it’s not for you to put it there.

To support people, you gotta meet them where they are in the moment. And trying to throw a little glitter into the conversation sometimes puts you on a different planet than the one they are currently inhabiting.

 

 

 

The Unfiltered Story of Dementialand (a.k.a Why Facebook Isn’t Totally Terrible)

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I came across an article in the New York Times about how Barack Obama read ten letters a day from citizens while he was in office. For his staff, the challenge was paring down the letters to ten to put into the back of his binder. The criteria by which letters were chosen interested me, and I enjoyed reading about the staff that filtered through the letters to choose the “winners.” And the “winners” were not always the letters that complimented the former president.

If you are interested, you can read the article here:

The tagline refers to the “unfiltered story of a nation.”

I’m not sure why I am drawn to this phrase, but it made me wonder where one might go to find the “unfiltered story of dementia.”

And then it occurred to me…Facebook.

Facebook offers many groups for provide support and education for the dementia community. Although I spend time at face-to-face support groups and chat frequently with dementia families, nowhere is there a more honest representation of where people affected by dementia (primarily caregivers) are than in private Facebook groups. There’s a certain comfort in being relatively anonymous when you need to rant.

Facebook drives me crazy about 60% of the time. Obviously, the campaign, election, and inauguration have not helped the situation. And then the other day there was this guy who decided to start a fight about his slowpitch softball league. And more and more people are using Facebook to promote their pyramid schemes and messaging me guilt trips for not hosting a party. (My response is always that I don’t have enough friends to have a party.) Oh, and I don’t need to hear about your kid’s diarrhea. There’s the unfollow button though, so it’s all good.

Of course, Facebook does have value. I think it actually has a lot of value. Less than two weeks ago, I shared that our old mastiff Karl had finally succumbed to old age. (Our vet put him to sleep while he was eating Burger King chicken fries and EZ spray cheese from a can. In a way, it was perfect.) People responded with heartfelt comments that made a difficult day a bit better.

And those dementia Facebook groups I have been talking about…A lot of people consider them lifelines. A place to vent when no one else is listening. A way to connect with people in a similar situation. A platform to share tips and ideas.

Where do you find love and support flowing between Trump supporters, Clinton supporters, Obama supporters, marchers for women, non-marchers for women, the pro-life and the pro-choice? It’s not a trick question. You see it in the private dementia Facebook groups. I know we are supposed to make America great again, but I see people of all backgrounds supporting each other and I think we are doing okay. (And I should add, not everyone in these groups is American.)

Obama’s staffers went through all of the letters addressed to him each day and forwarded ten that they felt represented where the American people “were at.” I’m not president of anything (except the exclusive and elite Cedar Valley Winery Club which includes myself and seven friends) and I don’t work in the White House (or a white house), but I thought I’d give myself a similar challenge today. I decided to do a very loosely-defined content analysis of the Facebook dementia groups and come up with ten points about where Dementialand “is at.”

I was originally planning to list these for myself so I could work on writing posts in the future that would be helpful to the dementia community. However, I decided I’d list them for you in no particular order.

Here we go:

10. Doctors don’t give whole person advice to individuals with dementia. A woman wrote a post recently about whether or not she should follow through on her doctor’s suggestion to schedule a colonoscopy for her mother, who was close to end-stage dementia. The crowd response was an emphatic “Hell no.” And I agree with the crowd. If you wouldn’t treat the illness, do you really wanna put someone through the test? My scientific (or not) Facebook analysis has also reminded me that some people in the medical profession do not understand that a procedure like an MRI, mammogram, root canal, or strep throat culture is likely to be anxiety-provoking for someone with dementia.

9. Families and friends don’t always get it. Caregivers need a break, and many people in their lives don’t understand the intensity of caregiving. One women finally got an opportunity to go to a movie when her sister-in-law agreed to watch her mom with dementia for a while. Then her sister-in-law sent her a text to ask if she could come home early because her mom was being annoying and asking too many questions. Facebook nation did not take kindly to the sister-in-law’s behavior.

8. The system is hard to navigate. Is there a way to get financial assistance for in home care? How does one see if they are eligible for Medicaid? What if they’re younger than 65? Are they eligible for a memory care community, or should I be googling nursing homes? The answers differ by state and situation, but what is consistent is that we ask people to navigate a challenging system at a time when they are already struggling to keep their head above water. Who wouldn’t want to play phone tag with a bunch of people when they are adjusting to their loved one’s declining health and increasing dependence?

7. Dementia is fatal, and we don’t tell people this at the start of the process. Although many people live a several years after being diagnosed with Alzheimer’s or a related dementia, most families don’t form an accurate picture of what “the end” will be like. We don’t prepare people for the final months, weeks, and days.

6. Dementia impacts emotion regulation. People don’t see this one coming. Dementia is about failure of the brain, and your brain regulates your mood. People with dementia may be irritable and moody. They may cry for no apparent reason. Caregivers aren’t prepared for the roller coaster of emotions. To be fair, people with dementia aren’t either.

5. It’s okay to wish for it to be over. I’ve seen many caregivers in Facebook support groups ask if they are bad people for wishing their loved one’s struggle to be over. And I’ve seen many virtual friends jump in and say they’ve felt the same way. It’s normal to hope for death when your loved one doesn’t have what you perceive to be an adequate quality of life. It doesn’t make you a monster. It makes you a human being.

4. Lots of people are being prescribed dementia medications without appropriate education. I cringe whenever I see a post about how Aricept is supposed to slow the progress of dementia. It makes me sick when I see a family member with hope that Namenda is going to make their loved one better. These medications only treat the symptoms and (at best) help people to function at a higher level. They do not stop or slow the progress of the disease. People with dementia may go through periods of time where they plateau, but they don’t get better. There is no cure.

3. Marijuana. Yep, marijuana. I am seeing more discussion of the use of marijuana to alieve anxiety among those with dementia. I’m not gonna comment on this because I haven’t done enough research to be confident in my opinions. Maybe I’m just afraid to go there. But, yeah, marijuana. I should probably get myself up to speed for when someone asks me about cannabis and dementia when I’m doing a presentation.

2. Food is love. When our loved ones with dementia struggle to eat, we will go to the end of the earth to find them something that is appetizing. We exchange tips to get people to eat. We will do anything to get 300 calories in Grandpa who is enduring the final stage of dementia. If we feed people, it means we love them. That’s why it’s so hard at the end of life to accept that our loved one just isn’t hungry anymore. And, no, a feeding tube won’t be helpful. It doesn’t work to force food into a system that is no longer equipped to handle food.

1.We are in this together. In my workplace, there were these two guys who had been what I would call office enemies (not even frenemies) for years. I would have thought they’d never get along, but they eventually did. Why? A woman whom they both disliked more than each other moved into our hallway. There is nothing like a common enemy to bring people together. Dementia is that common enemy. I don’t care who you voted for or what religion you are…as long as you hate something as passionately as I hate it. Then we’re a team. Then we can forget our differences because I’ve got your back.

Some people think that technology is making our society impersonal and disconnected. I could find some evidence to argue for that. However, I can also make the opposite case.

Dementia caregivers may not be able to leave the house much, but they can sit down at their laptop in the midst of a stressful day and ask for support from someone who’s right there with them. And be assured that somebody will be there to talk them off the ledge. Social media can be horrible, but it can also be pretty amazing.

Maybe our world isn’t going to hell in a handbasket after all.

P.S. My cheap self has impulsively decided to dish out $2.99 per month to WordPress to be “ad free.” Although I see people on reality TV shows with the title “professional blogger” under their mug, I have not yet figured out how to be a professional in the sense of actual turning any profit, even if small, from this blog. And now I’m out $35.88 over the next year. I mention this because I have been accused at times of shamelessly promoting my blog for my own gain. I haven’t figured out exactly what that gain is yet. For the record, I am not a professional blogger. If you have ideas on how I can become a professional blogger and make enough money to buy a vacation home in South Carolina, give me a shout out. Until then, I will keep my day job.

 

 

Urinary Tract Infections in Dementialand

alzheimer's, alzheimers, dementia, pwd

For better or worse, dementia progresses slowly. If someone with dementia shows a sudden behavior change, my suggestion is always to consider whether they might have pain that they are unable to express verbally.

Obviously, pain can be a result of numerous physical conditions–but I recommend checking for a urinary tract infection (UTI) first. People always think I have some sort of magical powers when I correctly diagnose a UTI without seeing their loved one (and without being a medical doctor), but I’m just playing the odds.

UTIs are incredibly common among those with dementia.

First of all, dementia causes individuals to have a compromised immune system. Once a UTI sets in, it may spread quickly. I can think of about ten people with dementia that I have known who have passed away as a result of a UTI that was identified too late and not contained. Yes, UTIs can often be fatal in those with dementia.

A UTI can cause “delirium,” an acute state that might include hallucinations, delusions, agitation, and restlessness. For someone who typically shows symptoms of dementia, it often appears that their condition has worsened quickly. These sudden changes are not a result of dementia but rather an indicator that the person has another health issue.

Sometimes a person with dementia expressing UTI symptoms might be mistaken for being overtly sexual. For instance, I have known several of men whose loved ones were called by the nursing home staff because they were taking off their pants and fondling their genitals in front of other residents. In many cases, a quick urinalysis will show a UTI.

At the risk of TMI (e.g., too much information), I have had urinary tract infections. In a span of 24 hours, I have gone from “something might be wrong” to the type of pain that is constant and disrupts sleep. It is horrifying to me to think of not being able to express this pain to others around me and seek help. However, I have seen many individuals with dementia be accused of giving their caregivers a “hard time” when in fact they had no other way to express that they were in pain. (Even worse, this happens with kidney stones.)

Dehydration can also be an issue with people who have dementia, and dehydration makes one prone to UTIs. It’s important to keep fluids in reach of someone with dementia when they may not remember or be motivated to get beverages on their own. People should also be encouraged to use the restroom frequently. Not surprisingly, poor hygiene can increase one’s risk. If someone lives alone and doesn’t remember to change their underwear, it’s likely that they will eventually end up with a UTI.

So…here are some of the changes in people with dementia that caregivers have noticed when a UTI had set in (note that is not an all-inclusive list):

  1. The person is unusually cold or hot for the environment (shivering, fever, etc.).
  2. The person sleeps a lot more than usual–or the person doesn’t sleep when sleeping is usually not a problem.
  3. The person grabs at their genitals or tries to take their clothes off.
  4. The person becomes incontinent.
  5. The person becomes aggressive toward themselves and/or caregivers.
  6. The person appears to be in pain when urinating (perhaps indicated by change in body posture or facial expression).
  7. The person starts to fall more often or have issues with balance.
  8. The person is suddenly much more confused than usual.

Obviously, some of these are symptoms of dementia, but keep in mind that dementia is a slow-moving condition. Changes that occur quickly may be a result of a UTI or another medical condition.

A woman I know was recently concerned about how quickly her mother’s Alzheimer’s was progressing. In a period of about 72 hours, she went from being calm and good-natured to lashing out when someone tried to assist her. She was suddenly confused about who her daughter was and her environment. She also refused to get dressed and would fight anyone who tried to convince her to take off her nightgown. I was asked if it’s normal for Alzheimer’s to progress so quickly.

Although aggression and confusion are part of Alzheimer’s, it’s not normal for these changes to occur so quickly. I suggested starting with a urinalysis. Sure enough, she had a raging UTI.

I often tell caregivers to bring a urine sample (if possible) to any doctor’s office visit. The good news is that a urine screening is fast and cheap. The bad news is that collecting urine might become more challenging as dementia progresses.

I recently heard the term “dementia detective.” The term was used to describe someone who pays attention to someone with dementia with the goal of figuring out their needs. We need more dementia detectives.

When someone with dementia shows changes in behavior, we need to stop saying that they are giving us a hard time. We need to understand that they are having a hard time.

And sometimes when they are having a hard time, it’s because they are experiencing pain.

 

 

Happy New Year From Dementialand

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Happy 2017 from Dementialand! New year. New blog layout.

If you are one of my regular blog readers, you likely have dementia or love someone with dementia. I am not going to feed you some bullcrap about becoming a better version of yourself or making 2o17 the best year ever. You know I’m not about rainbows and unicorns. I’ll leave those inspirational flowery quotes to Pinterest.

Maybe you’re in a place where 2017 can be the best year ever, and maybe you see some challenges ahead. Maybe you see your life changing in front of your eyes, and survival is your goal. I won’t pretend to know where you’re at as 2016 ends.

For those of you in the trenches of Alzheimer’s or a related dementia, it may seem laughable for me to wish you a smooth path, so I won’t. My wish for you is that you have the strength to endure the journey and that you know when to ask for help. My hope is that you have a sense of humor to carry you through and a keen enough eye to spot joy even when it’s subtle. I don’t know how you cope with stress, but I hope your coping skills are up to the challenge. I don’t care if you turn to Jesus, wine (in small amounts–not large), yoga, or a support group. Whatever you do, I hope it works for you.

I wish you hope, even if hope has changed. Maybe you used to hope you could grow old and travel around the world with your spouse. Now you find hope when they smile as you walk into their room at the nursing home. I wasn’t what you pictured, but it’s something. Don’t lose hope. Change your definition of hope.

Happy New Year, my friends. I’ll be continuing to attempt to lose the same 10 pounds I’ve been committed to losing for the last three years. I’ll remain committed to the same weight loss excuses. I also plan to institute a bedtime, which I will adhere to for about two weeks but then ditch because–hey–real life.

 

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.

About Dementialand, Hospice, and Blockbusters Movies from 2004 and 2005

dementia

When I was in my 20’s, I volunteered for several hospices. I didn’t specialize in dementia care, but I did spend a lot of time with individuals who had Alzheimer’s or other dementias.

My very first hospice patient was a man in his 50’s with frontotemporal dementia (FTD). I had pictured myself as a volunteer sitting by the bedside of a dying patient, perhaps chatting about life or getting them a drink of water. What I got was not better or worse, but very different.

On second thought…maybe what I got actually was better.

Neil, as I will call him, loved to watch movies. Most of the time I spent at his house was in front of the TV. Sometimes we’d watch movies on Lifetime. (I remember a particular Lifetime movie about women in prison who were being assaulted by the male guards. I bet we watched it three times.) Sometimes we’d watch a movie from his large DVD selection. His wife was kind enough to rent all the new releases for us as well. Some days we probably watched three or four movies.

People who know me well know that I’ve seen a very limited number of mainstream movies. When the Academy Awards reveal the nominees for best picture every year, I can pretty much guarantee that I’ve seen none of them. However, I’ve seen most of the major box office earners from 2004 and 2005. Pirates of the Caribbean. Mystic River. The Last Samurai. Million Dollar Baby. Eternal Sunshine of the Spotless Mind. Thanks, Neil, for that (especially the last two).

Neil didn’t really interact with me–at least not verbally. At times, he seemed unaware of the world around him, but he was certainly aware of when a movie was finished. He’d get up and start the next one. I’d ask what we would be watching next. Once in a while he’d look at me and smile. Usually it would seem like he hadn’t heard me. As the disease progressed, I was impressed he was still able to work the DVD player like a pro. Once he was in the bathroom when a movie ended and I tried to put in a new one. I messed up with DVR. He wasn’t thrilled with me.

Neil and his family had a little dog. It was a scrappy little thing…long overdue for a bath and nail trim. Neil would take it for walks. I didn’t seem welcome on the walks, and his family hadn’t given me any instructions on whether the walks were “allowed.” Yet, Neil was a big guy, and I wasn’t sure how I could stop him from walking the dog if I wanted to.

I decided to let him walk the dog but to keep an eye on him. I wasn’t sure if I was worried about Neil getting lost or perhaps the dog getting loose. Whatever my anxiety was about, I decided that my best solution was to follow them. I walked about a block behind. Not only was Neil perfectly capable of successfully walking the dog, he even remembered to bring bags to pick up dog poop.

And yet…when his high school aged kids came home from school he was usually unable to communicate with them. He stared at them blankly. One day his son walked in and he muttered, “Why don’t you go home?”

He had a habit of unbuttoning his jeans and pulling them down before headed into the bathroom. However, he somehow managed to make his own lunch everyday. (Nothing fancy…usually just a sandwich and chips.) I don’t think he remembered his wife’s name, but he could still mow the grass. In fact, I remember sitting inside his house watching a movie he had put in while looking at my hospice patient outside the window pushing the mower and then using the weed whacker. I kept thinking that volunteering for hospice wasn’t exactly what I had expected.

So much for having conversations about the meaning of life with someone wasting away on their deathbed.

Because my interaction with Neil was limited, I became an observer. I made sure he didn’t put himself in situations that were dangerous. Most of all, I made his wife feel more comfortable when she had to be away from home. I started to become fascinated with how his mind worked.

One day I felt guilty for sitting around his house watching movies, so I decided to do some cleaning. I started by scrubbing the kitchen floor. In order to do this, I had to move the trash can. Neil walked into the kitchen to throw something away. The trash can was about four feet from its usual place, but he couldn’t find it. He opened up the refrigerator and put the trash inside the crisper. Then he returned to his chair and movie-watching.

Sometimes his wife and kids would leave in the morning before I would get to the house. Most of the time, I’d arrive and he’d be sitting in his chair watching a movie. One day, I showed up and couldn’t find him. The dog was there, but he wasn’t. I did a quick sweep on the house. I found him in his bedroom. He was sitting on the edge of his bed with a roll of paper towels. He was biting off pieces of paper towel, chewing them, and then spitting them out on the floor.

I had no idea why he was doing this, but I didn’t see a reason to make him stop. I sat right beside him as he did this with the whole roll. When he was done, I picked up all the pieces off the bedroom floor and threw them away. Then he went downstairs and made a sandwich. Next he put in a DVD, and our day continued as normal.

A few days later I got a call from hospice. Neil had been moved to a nursing home. Even though he had barely acknowledged my presence in the several months I had been spending time with him, I had–for reasons I can’t articulate–decided he really liked me, so I went to visit.

On my first visit to the nursing home, it happened to be a beautiful day, so I took him outside for a walk. For the first time, I walked beside him rather than 100 feet behind him. Despite needing assistance with eating and bathing, he was still able to walk like a typical middle-aged guy. In fact, his pace was faster than mine.

He spoke more to me on this walk than he ever had before.

“I have to pee now,” he kept saying. We’d turn around and head back.

A few seconds later, he’d say, “I don’t think I have to pee.”

We’d keep walking until he’d tell me that he had to pee again. And then that he didn’t have to pee. We finally went back inside the nursing home so that he could use the bathroom. He came out of the bathroom, put an Indiana Jones DVD in his DVD player, and sat down to watch. There was a certain sense of normalcy about this that comforted me.

I visited Neil one more time after that. I didn’t know it would be the last time I saw him. He went downhill quickly after he had an infection that spread. I was out of town and couldn’t make it to his funeral. His wife sent me a copy of his obituary.

It was at this point that I learned that Neil had been a member of the school board and on the executive board for three local non-profit agencies. He played both football and baseball in college and spent time coaching youth sports. He dressed up as Santa every year at their town’s annual Christmas festival. He volunteered every summer through his church to do roofing for families in need.

I don’t know how to explain this, but in all of the time I had spent with Neil, I had never given any thought to what he was like before FTD. I could tell you it’s because I was focused on the person he was in the moment and had decided not to compare him to the person he was in the past, but that wasn’t it. That would be giving myself way too much credit. Maybe I hadn’t fully comprehended that he had been a “normal” person. Perhaps I couldn’t fathom that he had been someone who had a “regular” life.

I don’t know if I would have interacted with him any differently had I known more about him, but I feel guilty for not even wondering who he had been the first 50 years of his life. Maybe it’s because, if I ever need care, I hope those caregivers will take the time to learn about my before. It might sound egotistical, but I want them to know that I did some meaningful things throughout my life. I don’t know if I can say I owed that to Neil, but I wish I had taken the time to ask his family some questions when he was still alive. It just seems wrong that I didn’t.

I emailed with his wife a bit after his death. I remember asking if he enjoyed watching movies before he had dementia. She told me that he had not been a movie connoisseur throughout his life. In fact, he had not watched many movies with the exception of the time I had spent with him. (I told her that the same could be said for me, ironically.)

Perhaps, she suggested, movies were his way of entertaining me when he knew that he wasn’t able to be much of a conversationalist.

He just kept the movies rolling.

I don’t know if he really did it for me, but the thought makes me smile. Maybe he was doing the best he could with his limited resources to make sure his guest was having a good time.

If that’s the case, he could’ve spared me Soul Plane.

 

 

A Holiday Letter to My Friends in Dementialand

dementia

Fair warning—This will NOT be my only holiday-related Dementialand post. However, it’s the Monday before Thanksgiving, and I need to get something off of my chest.

I have a lot of blog subscribers who are dementia caregivers. Many of my regular readers have loved ones with Alzheimer’s, Lewy-Body dementia, Huntington’s, or another dementia. More often than not, I write to those who care about someone with dementia.

Today is different because I am directly addressing my readers with dementia. I know there are at least a few of you out there because I hear from you. Sometimes you tell me I hit the nail on the head with how I explained something. Occasionally you tell me I missed the boat. I am grateful to hear from you either way. You have taught me more than you will ever know.

So this is for you:

Dear Friends with Dementia,

Here come the holidays. You have dementia. It doesn’t define you. You are still you, but you are different. Please understand that the holidays can still be an enjoyable time for you, but that doesn’t mean they will be the same. 

Maybe you always made a huge family dinner for all of your relatives. Maybe they expect the gathering to be at your house again this year. Maybe you’re okay with that, and maybe you’re not. If you’re not okay with that, say so. If you’re okay with that but you have limits (say, you don’t have the endurance to have company overnight), say so.

If you always make the mashed potatoes for Thanksgiving, consider whether you are up for it this year. In making this decision, remember that no one will die if they don’t have your mashed potatoes. Perhaps someone else in the family can make them. Perhaps you can even get some at the Walmart deli.

It is normal for someone with dementia to have limited mental, emotional, and physical energy. You can spend that energy how you choose. Might you want to save some for visiting with family and friends rather than using it all in preparing a meal? Or do you enjoy cooking and want to maintain a role in meal prep even when your family tells you to rest? It’s up to you. 

Your out-of-town family members can stay at a hotel if it’s just too much to have them at your house. You’re not being mean. You’re not being lazy. You are not being anti-social. You have dementia, and you have limits. You will have a much better holiday season if you acknowledge those limits and work with them. (I have a friend who has a child with autism; she gives similar advice to other parents of children with special needs.)

If traveling is too much for you, stay home. And don’t feel guilty about it. If you are going somewhere for the holidays, think about how you are getting there. Flying can provoke anxiety for many of us without dementia. It can induce panic for many with dementia. If you don’t feel comfortable flying, you aren’t being a coward. If someone tries to talk you into it when the thought puts fear in your heart, that person doesn’t understand dementia. (Am I being too harsh?)

Don’t feel bad if you leave holiday gatherings early. Parties can be overly stimulating and anxiety-provoking for people with dementia. When your brain is tired and your energy runs out, it’s time to go. Don’t feel like a party pooper. And don’t apologize.

You may have a large clan. You may be used to buying them all loads of Christmas gifts every year. If you aren’t able to do it anymore, it’s okay. Black Friday shopping probably isn’t an ideal situation for most people with dementia. In fact, I’d argue that it’s not ideal for a lot of us (myself included). You can give cash. You can give gift cards. You can farm out your shopping to someone who is able to shop and enjoys shopping. Or you can do a family gift exchange where you draw names and only buy a present for one person. Another option–you can tell family and friends that you love them but you just can’t do Christmas shopping anymore. If people care about you, they’ll get that. If they don’t care about you, why were you buying them gifts anyway?

If you had a disease like cancer, people would understand that you have limits…dementia may create limits as well, but other people are less aware of them. If you feel anxious being out of your routine, stay in that routine as much as possible. Let other people know that you (and they) will enjoy the holidays much more if you make a few adjustments. Ask them to accept these adjustments. If they cannot accept these adjustments, do not take it personally. It comes from a lack of understanding regarding what you’re going through and an inability to accept that you are changing as a result of your dementia. 

Here’s what I’ve learned about the holidays in Dementialand…bigger is seldom better. Bigger is just overwhelming and stressful. However, after a diagnosis of a dementia, many people realize their “good” time on this earth might be limited. Their response is to try to pack everything they possible can into the holiday season to make it meaningful. This usually ends in frustration. And annoyance. And arguments.

I can’t say I know that it’s like to have dementia; I don’t. What I do know is that putting a lot of pressure on something to make it perfect usually means everything will go wrong. Don’t fall into this trap. Be flexible. Be patient. Don’t be too hard on yourself. And promise me that you won’t beat yourself up if at some point you get irritable with your family. It’s understandable, and it’s okay. 

This holiday season, I give you permission to say no. I give you permission to say enough. I give you permission to walk away from situations that are potentially frustrating, exhausting, and overstimulating. I give you permission to not send holiday cards, to avoid family members who cause you stress, and to let go of holiday traditions that you’ve embraced in the past. Most of all, I give you permission to tell your family and friends that the holidays might not be exactly the same as they have been in the past. 

That doesn’t mean you can’t have a meaningful and enjoyable holiday season.

Sincerely,

Elaine

P.S. Many of the points made here can also be applied to those of you who are struggling with depression or anxiety, have been diagnosed with an illness other than dementia, have a child with special needs, or have experienced the loss of a loved one (including miscarriage).