2041 Words That Helped Me Understand Dementia

This is a re-post from five years ago. A couple days ago, Melanie popped into my mind. I haven’t had contact with her in three or so year. I hope she’s in a good place.

From August 31, 2015

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

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

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

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

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

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

Thank you, Melanie. You are making a difference.

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

.. Remember Me .. 

JULY 15, 2015 MELANIE

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…

Covid and Dementia Stories: Kelsey

I am doing a series on how COVID is impacting those living with dementia, family caregivers, and professional caregivers.

Today I am telling Kelsey’s story.

She’s a Gerontology major, and we had a Zoom appointment recently.

She’s 20 years old and works as a CNA (certified nursing assistant) at a nursing home. Kelsey is a pseudonym. She told me a few things about the nursing home she works at that she doesn’t want to get back to her coworkers and supervisors.

She started working at the nursing home in January. It’s her first job. Literally. Her very first job. I want to tell her that any job she has in the future will seem easy after working at a nursing home during COVID.

During the day, she goes to classes. In the evenings, she goes to work. She is working about twice as many hours as she’d like because they are short-staffed. She can’t say no, and she needs the money anyway.

She lives in the residence halls. Her friends wear their masks around campus and in class, as required, but they get dolled up to go to the bars on weekends. She wishes she could afford her own apartment or even a single room in the residence halls.

She’s had a few awkward conversations with friends about being more COVID-conscious. She’s explained that if she gets COVID she could unknowingly bring it into the nursing home…and people could die. They say they’ll do better, but they don’t.

There have been a few outbreaks at the nursing home since March. I ask her how many COVID tests she’s had, and she says she can’t remember, but it’s a lot. She’s tested negative every time.

One day she woke up with a sore throat. She called the nursing home to say she wouldn’t be there, but her supervisor stressed that they were really short-staffed and the residents wouldn’t receive the care they needed if she stayed home. She went to work. Fortunately, her sore throat went away and she chalked it up to allergies.

In March, the nursing home decided to create a COVID wing. They moved some people around and suddenly an entire hall was empty…until it wasn’t.

Once the first resident tested positive, there was a conversation about who would work in the COVID wing. They offered a very slight temporary wage increase for those who worked in the COVID wing. Kelsey said that she’d be willing to take care of residents who have COVID.

Her parents were mad but someone had to do it. And Kelsey knew she was healthy and thought it was likely (but not guaranteed) that she’d breeze through COVID if she had it. More than anything, she needed the money.

A couple residents at the facility have died of COVID. Kelsey was close to one of them, a women with dementia who had no family to speak of. In a way, she was grateful there was no family to be there…since they wouldn’t have been able to be there.

Kelsey stayed late to be with the resident as she passed. Then she went back to the residence halls. She had to take a quiz and study for a test.

I’m Kelsey’s advisor (and she gave me permission to say this), and she’s not having a great semester. We’ve already discussed that she might have to retake a couple of classes.

Part of it is that she’s working a lot and has less time to commit to school. More than that, it’s the heaviness of the situation.

She’s focused on life and death issues at work. Then she has to come home and study for geology course. She says most of her coursework just seems trivial and unimportant.

As her advisor, I don’t have a good counterpoint. I’ve been pestering her about making appointment at the university counseling center—-because this is a lot.

She’s 20. Our society doesn’t think she is responsible enough to drink, but she’s caring for COVID-positive nursing home residents at the end of life. Wrap your brain around that.

I can’t help but ask myself if I could have done this at 20.

I don’t think I could do it now.

Kelsey says the most difficult part is seeing other college students take unnecessary risks–and sometimes putting her at unnecessary risk. She has literal nightmares about everyone at the nursing home dying because she got COVID from her roommate who went to the bar.

I am doing my best to support students through 2020, but I don’t know what to say.

I ask how much longer she can do this. I can see she’s exhausted. She says she can’t quit because she is worried about her residents. She doesn’t like the idea of residents not seeing their families for the holidays so she needs to be there to make it a little bit brighter.

She tells me that she’s grown a lot this year. At some point, she wants to chat with me about careers in hospice. She says that perhaps a “gift” of COVID–if there is such a thing–is that it’s made her realize that she is capable of being with those who are dying. She’s surprised herself, and she seems proud.

She should be proud, really.

It’s an awful situation, and she’s showing up. But there’s a cost:

Her mental health. Her grade point average. Her relationships with friends. Her social life.

I imagine there’s a cost for every healthcare worker who works with people who have COVID.

As for Kelsey, she’ll keep going. She took on extra hours this week because a coworker tested positive. She’s even signed up for a course over the winter term.

As an advisor, I am supposed to talk to her about careers and tell her what classes she needs to take.

But I can’t lie. I am concerned about her as a person.

Stories of COVID and Dementia: Becky and Don

As I continue to hear stories of individuals living with dementia and their care partners stumbling through the dark during the pandemic, I am at a loss as to how to be supportive.

Sometimes people reach out to me. They want to tell me how they related to my blog. They want to tell me what they’re going through. They want advice. Or support. Or resources. Or something.

I don’t always know what they want to be honest, and I’m pretty sure I don’t often deliver.

I don’t have much to offer. I’m a listener. I empathize. I don’t tell them it’s going to be okay because I really don’t know if it will.

“It’ll all work out in the end” doesn’t seem to be an appropriate thing to say when someone might die without their family present.

For the next few weeks, I’m sharing stories.

Please refrain from judgment. Perhaps some of these people have made different decisions that you might have made. We are all just doing the best way can in the worst of circumstances.

So here goes:

Becky sends me a message. She’s a friend of a friend of a friend, and she reads my blog. Her mom has dementia and lives in a nursing home a few hours away. She hasn’t seen her since June.

The dementia has progressed quite a bit. Becky’s mom doesn’t get out of bed much these days. She can’t talk on the phone or Facetime. Although Becky gets frequent updates from the staff, she’s having trouble getting a grip on the changes that are occurring. It’s just hard when you’re not there, right?

Becky has worked from home since April. Her husband, Don, goes to work at a factory each day. She’s scared he will end up with COVID, but it’s not a good time to find a new job. They have four kids at home, ranging in age from 12 to 18. The kids’ schools seem to rotate between in-person, virtual learning, and cancelled altogether.

In addition, one of the kids has a health condition that, coupled with COVID, could be bad news. Becky and Don work hard to keep their family safe from the virus, but it’s exhausting. Becky has struggled with anxiety in the past, and (not surprisingly) 2020 has brought it back with a vengeance. She thought about doing some virtual counseling but doesn’t know if she has the time.

A few Saturdays ago, Don went to Wal-Mart. He came home with a some white paint and a small nightstand. He asked Becky to come outside to see what he had purchased.

He proudly told her that things were about the change for the better….he would be working on the basement bedroom so that Becky’s mom could come live with them.

He knew Becky hated not being able to see her mom. He heard her cry on the phone when nursing home staff would describe a new health problem. He knew she was sometimes literally sick to her stomach when she thought about how lonely her mom must be.

Being a well-intentioned problem-solving husband, Don had a solution. They would take Becky’s mom out of the nursing home and move her into the basement.

He did not get response he expected.

Becky was angry.

They hadn’t talked about this. Who would care for her all day when they were working? Could Becky take care of her mom while working full-time and being a homeschool teacher? Did they even have the medical skill to provide her the care she needed? What if Don brought COVID home from work and infected her?

She knew her mom didn’t sleep well at night. The nursing home said she often tried to get out of bed and worried she would fall. She was supposed to be putting limited weight on a previously broken hip, but she didn’t remember that. Would someone have to sleep in her room with her? Would someone have to stay up all night?

But what was Becky supposed to say.

She said she’d think about it.

The more she thought about it, the more she realized she was heading toward a mental health crisis if she allowed her mom to move in. If her mom moved in and it didn’t work, she wasn’t even sure the nursing home would take her back.

So she said no.

No judgement, please. Sometimes we all have to choose the best of a bunch of really bad options. That seems to be the name of the game in 2020.

We don’t get what we want in 2020. We have to pick among several things we really don’t want.

It’s like how you don’t want to cancel family Thanksgiving but you also don’t want your family to get COVID. There’s no good option there.

There is no shame in having limits, and there’s tremendous value in understanding those limits. Bad things happen when people don’t acknowledge their own mental and physical health needs.

Becky isn’t weak. She isn’t uncaring. She understands her decision and its potential consequences. She’s not stupid. She knows she may not see her mom alive again.

She carries a heavy backpack of guilt as she does her best to focus on her work at home while her kids needs her. To top things off, her husband is at home while he waits for COVID test results after an exposure at work.

She’d give her left arm for an afternoon alone. She spends a moderate amount of time sitting on the floor of her walk-in closet crying. She says she sometimes searches for “funny cats” on YouTube to get her through the day.

Don tells her things would be better if her mom came to live in the basement.

She’s still saying no.

Sometimes there won't be a right choice, just the best of several bad  options." - Sarah J. Maas | Sarah j, Good things, Sarah j maas

Predictability in the Most Unpredictable of Times: Building the Plane While We Fly It

I am writing in defense of college students.

I know what you’ve heard. They’re entitled brats. They don’t care about anyone but themselves. They’re out at the bars spreading COVID.

Sure. That describes some college students. It doesn’t describe the majority.

College during COVID isn’t what college is supposed to be. We’ve told our college students to do the opposite of what we usually tell them. Instead of telling them to make new friends, we are telling them to hang out in their pods. Instead of promoting study abroad, we’ve suspended the program. We are trying to encourage them to get involved….but stay in their residence hall rooms.

Student organizations aren’t allowed to have the large gatherings that bring together students with common interests. Professors can’t even move chairs around rooms to create groups for discuss.

If someone who sat next to you in class had a positive COVID test, you’re in quarantine for 14 days. You take your stuff and move across campus to a single room where we’ll deliver you some food.

As a professor, my job is less fun. I am grateful for Zoom. I am grateful for Google Drive. I am grateful for the technology that allows us to connect when we can’t be together in person.

The college students I work with are rolling with the punches. They’ve developed a new normal in a world that’s not normal at all. You never leave home without your student ID, your cellphone, and your mask.

I am proud of them.

I work with a unique set of students in the Gerontology program. They are following COVID closely and frequently talking about how it’s impacting older adults, their families, and nursing homes. Many of my students work in nursing homes, memory care communities, or as home health aides.

I had a Zoom meeting with a student last week who told me, “My favorite resident died of COVID last night.”

But then she came home from work and had to watch a recorded lecture for her online course. She bombed an online quiz and went to bed.

Grad school didn’t prepare me to support students through 2020.

I am working on a dementia related project with two of my students. We are putting together a program to educate people on dementia in 5-10 minutes a day for 18 days.

People are sick of long Zoom sessions and online lectures. This is a bit of a different format, and we hope people will find it beneficial when we unveil it this winter. INSERT DRUM ROLL HERE. The ultimate goal is to help people understand dementia and make the world more dementia-friendly.

It’s a weird time to be a professor. I am not about to complain…because COVID has impacted many careers in ways that make this look like small potatoes. I am fortunate to have a job, and I still enjoy my job. But some of the more rewarding parts of my job are on hold.

This project has kept me going.

My students, Anne and Bailey, meet with me every Friday morning on Zoom. I make myself coffee and sit down at precisely 9 am. We talk about the project. It’s coming together, and we are excited. We talk about other stuff, too. All sorts of stuff.

Sometimes I worry that they wish I’d end the meeting so they could get on with their days. But I really enjoy talking to them.

We once pushed our meeting back half an hour because one of us had to get a COVID test. One Friday I was quarantining until the results of my husband’s COVID test came back…turns out it was just allergies. One of us had symptoms that turned out to be a flu or bad cold. I might have delivered a snack pack to her apartment.

In the midst of an unpredictable semester, my Friday meeting with Anne and Bailey has been predictable. The university has had to change rules and protocols as a response to changed mandates at the local and state level.

My original plan was to work part-time in my university office this fall. That’s changed…my office is too small to meet with students safely. I’m working at home full-time with very occasional trips to campus to sign forms, use the color printer, and pick up mail.

Everything has changed except for our Friday meetings.

Due to COVID, the university even changed our semester schedule. We are done with the fall semester after Thanksgiving and start back on January 25.

Last Friday, I asked Anne and Bailey a question. Do they want to continue working on our dementia-friendly project over this extended break? If so, do they want to meet on Friday mornings? Or at a different time? Would they want to meet every other week instead of every week?

They’re under no obligation to work on this project during a school break. I told them to talk about it without me present. I didn’t want to pressure them.

But, yes. To my relief, they want to continue during break. And they prefer to continue to meet on Friday mornings.

I will add those meetings to their google calendars today.

If you are person living with dementia, a family caregiver, a professional caregiver, or just a random person who came across my blog, I would encourage you to find something positive to put on your calendar once a week. Something fun. Something that makes you feel productive. Something that relaxes you. Whatever it is, it’s got to be positive.

A phone call with a friend.

An hour to watch your favorite TV show.

A morning that you go all out and make yourself a hot chocolate with whipped cream and sprinkles.

A time to participate in your favorite hobby.

A 10 minute yoga class on Youtube.

If all you’ve got is 5 minutes to lie down on your bedroom floor and take deep breaths, I’ll take that. If you want to schedule 10 minutes to sit in your closet without your cell phone, I support you.

But it in your planner. Google calendar. The family calendar in your kitchen.Your notebook. A sticky note on your mirror. Whatever you use.

And, in this crazy world where little is predictable, know that you’ll be doing something positive at that time.

This semester a college student complained to me that it seemed like the university is building a plane while flying it.

Yeah, we are.

Perhaps we are all building a plane while flying it.

Nursing homes are building and flying at the same time–as are people living with dementia, family caregivers, professional caregivers, and pretty much everyone else.

It’s almost like we weren’t prepared for COVID because we…well…we weren’t prepared for COVID.

When life is unpredictable, we must accept that we can’t control everything. The motto at our university this fall seems to be “Control the controllable.”

Lesson 220: Control the controllable | Lettering, Lesson, Hand lettering

It’s really all you can do, right?

If you’re like me, you’re looking for a way to root yourself in the midst of an unpredictable storm.

So take back a bit of control and schedule that one thing on your calendar to give you just a little bit of solid footing. One thing that COVID and the crises and stressors of everyday life can’t change.

Sorry, Bailey and Anne. Looks like you are stuck with me. See you Friday morning.

COVID in Nursing Homes: Perspectives from the Inside

One of my college students read a recent blog post I published on COVID and nursing homes. She works in a nursing home, and she shared some of her experiences with me. I asked if she might consider writing a blog post to share her perspectives. Here it is:

I walk into another day at work. 

The world just came to a STOP, the normal has just disappeared before our eyes. COVID was just announced and the uncertainty grew day by day. I greet my residents as I usually do with a smile and friendly hello, except this time a mask covers my face. My residents with Alzheimer’s don’t understand what is going on, and to be honest 6 months down the road they still can’t comprehend.  

Almost immediately their family was no longer allowed to come inside to visit them. Instead windows and electronic screens separate them. We work so hard to help their families communicate with them.  The residents only understand they can’t see their families in person.  

The only time family can come in and see their aging family member is if they are showing signs of dying. In this situation only one family member at a time can be in the resident’s room and they have to have a temp lower than 99.0 F. 

About a month into lock-down, the rules change. I go into another day of work again greeting them, except now I have to tell my resident no when they ask for a hug and I am supposed to stay 6 feet away from them when possible. As I am going through my shift, I constantly have to reassure my residents that their family loves them and that they didn’t forget about them. 

As the months go on, I have to remind them more and more their family still cares. Another couple of months into complete lock down, my Alzheimer’s residents barely recognize me with my goggles and face mask on. All group activities are ceased. 

My residents are telling me they don’t care if they get COVID; they just want human interaction beyond their care team.  At this time, I get a call from my grandpa (who I haven’t seen since COVID), said he just wants to see me, and he in fact didn’t care if he got COVID because he is just going to die soon anyways. 

This statement I have heard day in and day out since families weren’t allowed to see their loved ones. 

My residents are starting to give up the will to live as they can’t see their families or even friends they have made in the facility. About 6 months into lock down my residents can finally see their family, under these conditions; they are outside, at a table that is exactly 6 feet apart and stay 6 feet apart, no hugs or other forms of contact, and one family member at a time for 15 minutes.  

Well, after a visit there are lots of tears. They were not ready for their family to leave and they didn’t even get a hug. That didn’t last long as COVID cases skyrocketed. No longer able to see their family anymore my residents are more confused than ever, lonely and scared. 

Walking through the hallways my residents ask for hugs or come up to me and just hug me as they fight tears. (I do hug them back at times even if I am not supposed to).  

My residents are wonderful and try to stay positive, but sometimes it’s impossible and I don’t blame them. Supportive housing is fighting a losing battle. They want to protect the residents from COVID, and when they do so they have to fight Failure to Thrive. 

The toll of COVID goes beyond the residents, it hits families hard and the health care workers as well.  I see families fighting to see their loved one and tears streaming down as they hold their hand up to the window. We go in each day, not knowing what new rules have been added.   I don’t go anywhere without my mask and hand sanitizer. 

I may be missing out on going to college football games, parties or concerts so I don’t bring anything to my residents. That is nothing compared to what my residents are forced to sacrifice. I don’t complain because I have the freedom to go out and do whatever I please and I can see my support system. 

If you aren’t going to wear your mask for you, wear it for the health care worker so they can continue supporting their residents and also to reduce the overall number of cases, so my residents may once again see their family and resume simple activities the rest of us take for granted. 

-from an anonymous college health care worker

How to Draw a Heart

Dementia, Election Anxiety, and Being Aware of Your Vibe

Amazon.com: In three words I can sum up everything I've le... - Robert  Frost quotes fridge magnet, White: Kitchen & Dining

“In three words I can sum up everything I’ve learned about life: it goes on.”
― Robert Frost

I keep reminding myself of this as the United States is on edge with tomorrow’s election. (Maybe you’ve heard there’s an election tomorrow?)

I feel like our nation has been divisively split into two camps. No matter who wins tomorrow, we have to figure out how to move forward. And it might be not pretty.

If you’re anxious about all this, you are not alone. Election anxiety is real. Fear. Stress. Whatever you’d like to call.

You should know that, according to the American Psychological Association, election stress seems to be impacting Democratic and Republican voters equally. Hey, there’s one thing Biden and Trump fans have in common.

Oh, and let’s add COVID to the mix.

If you’re not experience any stress in 2020, I want you to come to my house (in your mask) and lead some sort of guided meditation.

I predict we won’t definitively know the winner of the election before we go to bed tomorrow night. My expectation is that there will be a few rough days of arguing about election results. In other words, election stress isn’t going to make its exit by marching out our front doors on election night. It’s going to stick around like a houseguest who doesn’t take a hint.

This is a reminder that stress is contagious, and people can experience stress when they don’t understand what that stress is about.

Think about little kids. Do they fully understand the ramifications of this election? Do they get why we are wearing masks? Nah. But if they’re parents are stressed, they feel that.

There are many people living with dementia who are politically aware and passionate about the future of our country. Some are ready to argue…some watch Fox News and some watch MSNBC. Some want a wall built, and some don’t. People with dementia have opinions about politics that are just as valid as my own.

This post is not intended to imply that everyone diagnosed with a dementia lacks the ability to follow politics.

Yet, as dementia progresses, some individuals may become less aware of election happenings and more perceptive to the moods and attitudes of those around them.

Long after people with dementia can understand words and decipher sentences, they are aware of facial expression (well…back when we could see people’s faces) and body language.

Add that to the many reasons a person with dementia might be increasingly agitated right now. I mean, there are many reasons we ALL might be increasingly agitated now, right?

A woman I know who caregives for her husband with Lewy-Body dementia in their home told me that her husband recently stopped eating breakfast. She racked it up to being social isolated due to COVID. Then she noticed a pattern.

When she watched the news in the morning, she found herself frustrated with so many things going on in the world. Her husband would often sit in the other room. He was nearly non-verbal, and she didn’t think she was following what was going on in the world. But the days she sat around and watched the news for a couple hours in the morning while drinking her coffee…those were the days her husband didn’t want to eat.

She wasn’t sure if he was hearing just enough of the news to be anxious about the state of the world or if he was picking up on her negative vibe. Either way, she decided changed the pattern.

It’s really not that different than my marriage. When I’m in a negative mood, it’s hard for my husband to stay positive. And vice versa.

That’s not to say you shouldn’t vent to your spouse, but venting to someone who doesn’t have the ability to process what’s happening might do more harm than good.

It’s okay to get frustrated about politics. It’s okay to be mad at things you see on the news. I am not that person who promotes the idea that we need to positive all the time.

We’d never get anywhere if we didn’t have passionate citizens of diverse viewpoints.

I’m just saying to be aware of your vibe. You bring your energy into a space. And other people in that space absorb your energy. Even those people are in the end stages of dementia and may seem unaware of their surroundings.

Side bar: You should never assume anyone with dementia (or anyone else for that matter) is unaware of their surroundings.

It’s not just about your words. Consider your body language. Think about your tone of voice. Your movement. Are you pacing? Are you obsessively wringing your hands?

Be conscious of the energy you bring to people living with dementia.

Maybe we should all be more conscious of the energy we bring to others.

Especially this week.

Dementia, Masks, and a New Not-Normal in Nursing Homes

I wear a mask, and I encourage others to wear masks. None of what I am about to say changes that.

But…masks are rough for people with dementia.

Sure–it might be hard for someone with dementia to wear a mask correctly. But it’s more than that…

Being around people wearing masks can be difficult, confusing, and agitating for people living with dementia.

Masks are often linked with situations that aren’t positive. People in masks surround us when we go to the dentist. Or when we are going in for surgery. People in masks rob us. Many of us have developed negative connotations of masks, and for good reason.

A few weeks ago I was running out on the trails in our community. A big guy was walking toward me. He was wearing a black sweatsuit and a black baseball cap. He was also wearing a mask.

If this situation would have unfolded a year ago, I would have been scared. I might have even pulled out my phone so it looked like I was going to make a phone call…that’s a trick I use if I feel uncomfortable when running alone.

This year, however, the first thing that came to mind was “How thoughtful.”

Oh, 2020.

Imagine if, in that moment, I couldn’t remember why someone might wear a mask. Imagine if I had been unable to process the consequences of COVID.

That’s the thing. When we understand why people are wearing masks, it’s okay. When we don’t, it can be terrifying.

Add to that difficulties with communication. I have had quite a few people without dementia tell me that they have recently realized how much they rely on facial expressions and lip reading. Masks have made communication more challenging for many of us.

I am always telling people that those with dementia understand a facial expression (say, a smile) much longer than they understand words and phrases.

Recently I heard someone who works at a memory care community complain about how the residents have been giving her a hard time lately. You know what? They aren’t giving her a hard time. They are having a hard time.

Think about it.

You’re in a space that doesn’t make sense to you. There are a lot of people there, and they are wearing masks. You’re not sure why they’re wearing masks. It’s often hard for you to understand what people are saying, and it’s pretty much impossible with these masks. You’re not sure if they’re doctors. Maybe you’re sick. Or maybe they’re hiding their faces because they are doing something wrong. They might be criminals.

You plan to tell your family about this when they come. But they don’t come. You’re not sure why. You don’t know how long it’s been since you’ve seen them. You asked where they were, and someone said something about a virus or illness. You’re worried they’re sick. They could’ve died. But, then again, you might’ve said something wrong. Maybe they’re mad at you.

You used to get to go places. Outings. Kinda like school field trips. You went on a van or a little bus. That doesn’t happen anymore. You wonder if you’ve done something wrong. Maybe you’re grounded.

For a while, you couldn’t even leave your own room. It was just you and your roommate. Your roommate doesn’t seem to like you much. You try to talk to them. No response. Maybe they’re angry at you.

People in masks come by. Some look familiar, but you aren’t sure who they are. They bring your food. You don’t get to go eat with your friends in the dining area like you used to. You miss that. Some of those people were fun to talk to.

There used to be an art group and a baking group. Where are these friendly people who used to come get you to go to these groups? Now it’s just these new people in masks. And they never ask you to go anywhere except to take a bath.

That’s bit scary in itself. Sometimes you’re in the whirlpool tub and the people in masks seem to be looking deep into your soul. And you want to put your clothes on and run, but you don’t know where they put your clothes. And your body wouldn’t allow you to run anyway. Every once in a while, you get this weird idea in your head that you’re a subject in a science lab and they are going to dissect you.

There’s a window in your room. You can see cars driving around outside, almost like the world is normal. You wonder if everyone out there knows what’s going on where you are. How can you let them know? What if you yell?

You see some people in masks. Every once in a while you think one looks like your daughter or your son, and you get your hopes up that they’re coming your way. But they never do.

Is it any wonder that people with dementia are struggling? Is it any wonder that they are having a hard time?

I don’t have any easy answers. I don’t want people to take their masks off. I am all about safely allowing family caregivers into facilities, but I understand that facilities have to follow guidelines…and an outbreak could be fatal.

This isn’t normal and it isn’t okay.

When Family Caregivers Aren’t Allowed In

One of my students scheduled a Zoom appointment with me (because that’s what we do now, right?). She’s a freshman and she has a new job at a memory care community.

She wants to do a good job. She loves the residents. She has great questions for me about how to handle difficult situations. Have I mentioned she’s awesome?

But she’s overwhelmed. She is being asked to care for 15 residents at a time in the community’s common space after dinner. One has a problem with falling out of his wheelchair. She has to keep him in his chair (so he doesn’t get hurt) and also pay attention to the other 14 residents.

She knows they can’t belt him into his chair, but she isn’t sure why. I explain that it’s fire code. He has to be able to escape the building in a fire.

She wants to talk to the residents. She wants to spend time with them. She wants to get to know them. But she can’t.

She’s too busy making sure this gentleman doesn’t fall out of his chair.

She’s stressed. She doesn’t know how to tell her supervisors that it’s unrealistic for her to care for all of these residents at the same time. I tell her to speak up about her concerns…but she’s 18 years old. I wouldn’t have known how to have that conversation when I was 18.

I ask about the memory care’s current COVID visitor policy. I find out they are only allowed socially distant visits outside, but she tells me she’s never seen any of these visits actually happen. She’s not sure why.

And then I realize that, for the most part, these residents haven’t seen their families in months.

It’s not about having visitors. It’s about caregiving. When families visit nursing homes, they assist their loved ones with eating, personal hygiene, and other daily tasks. They spent time with residents–freeing up staff to look in on other residents.

My student doesn’t really recognize this. She didn’t work at this facility pre-COVID. She doesn’t know how much easier her job might be if families were able to hang out with their residents in the evening.

The facility needs to hire more employees to replace the unpaid work family caregivers typically do.

And I hope, I really hope, that my student can stick it out. She says her job is rewarding but stressful. I hope it’s rewarding enough to counteract the stressful…until the facility hires more employees or families are allowed back in.

She’s the type of person that needs to do this work. She tells me that when she leaves the facility at night, she’s mentally exhausted. She can’t focus on homework or even have a conversation with her boyfriend. I know that exhaustion comes from her desire to meet the physical, emotional, and social needs for 15 residents–at the same time.

She hasn’t exactly been set up for success.

I don’t want her to quit, so I encourage her.

I don’t know if it’s enough.

Dementia Caregiving and COVID

I haven’t given COVID as much attention in my blog as it deserves. I’ve started many posts and abandoned them because they felt inadequate.

To be fair, I have gotten a bit of hate the few times I’ve written posts about COVID.

Examples:

I thought you were smarter than this. COVID isn’t any worse than the flu.

You are brainwashed just like everyone else. I expected more.

I think you are being overly negative about this. I read your blog for positivity.

I need to develop a thicker skin, I know. And if people don’t want to read my blog, they should move along.

I expect to get some negative comments about this post as well. Unfortunately, COVID has become a political issue in the United States.

But I need to say something…

COVID is impacting all of us, but older adults and those with other health conditions are at higher risk. (Obviously it is not just these populations that are at risk.)

Yet, I am sick of people saying, “I’ll be fine if I get it. COVID really only affects old people.”

It’s the only that bothers me. Only old people.

Because old people are disposable? Because they don’t matter? Because they aren’t productive and valuable members of our communities?

I can’t help but feel like we don’t care about old people unless they’re our old people.

I know someone whose grandma died of COVID in a nursing home. I can’t say she was alone, or even that she was surrounded by strangers. Her family takes comfort in knowing that the nursing home employees who took care of her for a few years were with her.

The family would have come to the window but she was on the 2nd floor. They were grateful the nurses were able to Facetime so they could say goodbye. After she passed, they waited in the parking lot for the funeral director to come. They were grateful they were able to touch her body before they put her in the car.

But is that the way you want to leave this world?

When I worked with hospice, we used the term “good death” a lot. It sounds like a contradiction, right? But it’s the goal. A death that is as pain-free as possible. For most people, a good death means being surrounded by those you love. It means getting to say goodbye to those closest to you.

It’s not only that death occurs…it’s how it occurs that haunts me.

It’s not just that older people are dying from COVID. It’s that COVID is preventing them from having a good death.

And that matters.

As most of you probably know, I’m a college professor. I coordinate the Gerontology program at my university. The students in my major and minor often work in home care or at nursing homes, assisted livings, or memory care communities. Many of these same students live in the residence halls.

While many college students may not be worried about COVID (because they will be “fine”), my gerontology students are terrified of inadvertently bringing the virus into a facility and infecting residents. They take all the precautions they should be taking…but they can’t control what their roommates and peers are doing.

Many people tuned in to closely follow our President’s battle with COVID. I don’t care what news channel you prefer…all of them are talking about COVID (although with somewhat different perspectives).

It’s not that we’re not talking about COVID, but we aren’t talking about the tremendous and life-changing impact this virus has had on caregivers, those who live in nursing homes, those who receive care at home, and those living with dementia. But we seem to care a lot about the politicians and celebrities who test positive….

I haven’t written a lot about this (although I think about it a lot). I haven’t written much because I can’t write much that’s solution-based.

I get questions like:

Should I continue to do window visits when they seem to agitate my mom?

Should I take my mom out of the nursing home for a while so she doesn’t get COVID?

What can I do to encourage the nursing home my loved one is at to expand visiting options?

How can I have better visits with my mom on Facetime when she can’t seem to focus on the conversation?

Here’s the thing….I DON’T KNOW.

They don’t teach this stuff in grad school. I am at a loss when I try to give advice. All I can tell people is to control the things that are controllable, and stop guilting yourself over stuff that you can’t fix.

Despite having little useful advice, I want to acknowledge how this has changed many of your lives.

To those of you struggling through this pandemic, I see you.

I see that it’s brutal to not being able to see your mom and dad for months.

I see that “window visits” can be bittersweet, especially if your loved one can’t understand why you can’t come inside.

I see that Facetime and Zoom are great for some nursing home residents, but others are confused by seeing people they can’t reach out and touch.

I see that phone calls are fine for some but just don’t work as people progress toward the end stage of dementia.

I see that it’s hard when you are home 24/7 as a caregiver with no options for respite.

I see that it’s hard when you caregive for your loved one at home but can’t take them to the grocery store or out to eat like you used to.

I see how difficult it must be when you live at home with a loved one with dementia–who has no idea why the grandkids can’t visit anymore.

I see how challenging life must be if you have a loved one with dementia who has anxiety about COVID and asks the same questions over and over again.

I see that it’s stressful for those of you who have children who are now homeschooled…and a loved one to care for.

I see that you might be depressed. I see that you might have increased anxiety. I see that you might have trouble sleeping. I encourage you to seek help during this time.

I also encourage you to credit yourself for getting through the day. Stop beating yourself up over what’s not going well because it’s likely a result of something you have no control over. As a caregiver, you might not get a lot of positivity thrown your way. It’s okay to pat yourself on the back.

Don’t be afraid to give yourself some kudos for surviving–even when survival is messy.

Grandmas, weddings, and dementia

I feel like this needs some attention because I get a lot of questions about it.

Dementia and weddings.

Grandma has dementia. Should I take her to her grandson’s wedding?

Obviously, lot of people with dementia go to weddings and it’s a non-issue. People living with dementia even get married. However, as dementia progresses things become more complex.

It’s a fair question for someone who is moving toward the final stages.

Will grandma understand who is getting married? Will she be able to sit through the whole ceremony? Will the reception be overwhelming to her? Will she struggle to remember all the people at the wedding? What will we tell people if she says something that doesn’t make sense?

I don’t know if you should take your grandma to the wedding, but I can present some food for thought in the form of a question….

…Will grandma enjoy the wedding?

If she won’t enjoy the wedding, think twice about taking her.

Our first priority is to make sure that people with dementia are safe, happy, and have minimal pain–and this includes emotional and physical pain.

Will she be safe at the wedding? Will she be happy? And will she be free from pain?

We often think of this wedding question as an all or nothing, but it’s not. Can grandma go to the ceremony but not the reception, or vice-versa? Can she watch on Zoom at home with a friend? Can someone be prepared to take her home when she becomes overwhelmed? Can she sit in a quiet room at the reception facility where people can stop by and say hi in small groups?

Let’s face it.

Weddings are a lot for all of us. And they are certainly a lot for people with dementia. The marathon of the wedding is emotionally exhausting. People with dementia have limited mental energy.

When that mental energy is depleted, they may become agitated, more confused, or withdrawn. You know, that’s the same thing that happens to me when my mental energy is sapped. It’s just that my energy usually lasts a bit longer than that of someone with dementia.

You are not a bad person if you don’t bring your grandma to a wedding. Make her part of it in whatever way is possible, but don’t put her in a situation where she is not set up for success.

A while back, a friend told me that her grandma who has Alzheimer’s recently attended a family wedding. My friend told me it didn’t go well. I asked why.

Grandma hadn’t understood she was supposed to throw the rice as the bride and groom passed. As soon as the container was handed to her, she opened it and showered herself in it while gleefully wishing herself a happy birthday. (No, it wasn’t her birthday.)

At the reception, she had a long conversation with the bride and told her she was the most beautiful bride she had ever seen. She gave her some advice about marriage–mostly about sex–which the bride took very well after a couple of glasses of wine.

Grandma kept saying how excited she was that she had been able to see her sister at the church. In fact, her sister had passed away years earlier. They weren’t quite sure who she misidentified as her sister, but Grandma just kept saying how young and healthy she looked.

On the way home, Grandma sat in the backseat and said, “What a beautiful birthday party!”

The next morning, Grandma’s caregiver asked how the wedding was….and she said she hadn’t been to a wedding in years.

I asked again, “Why didn’t this go well?”

My friend told me how disappointing it was that Grandma didn’t remember the wedding.

I didn’t see it that way. Grandma enjoyed herself. And that’s what weddings are about, right? (And birthdays, for that matter.)

And you aren’t disappointed that your kid doesn’t remember their first birthday party. You are just glad they seemed happy at the time.

It’s not about the memory. It’s about the moment.

Louder, for the people in the back….

IT’S NOT ABOUT THE MEMORY. IT’S ABOUT THE MOMENT.

If your loved one is in a place to go to a wedding and enjoy the moment, they should go. But have a back up plan. If they are overwhelmed, stressed, or anxiously confused, get them out of there, even if it’s just suggesting a stroll outside to regroup.

And change your expectations. Perhaps Grandma can’t play the role in your wedding that she would have played years ago. Dementia forces us to adjust. Be creative.

As always, meet people where they are.