Dear Diary

I have been debating about this blog. Sometimes I think should delete it and merge with my professional website and sometimes I just want to use it to write and store articles about dementia and caregiving. And sometimes, like today, I want to make it into an actual diary to give people a glimpse of what it’s really like to be a caregiver for someone with Fronto-Temporal Dementia. I wish I could say I have the time or fortitude to post every day or even to keep it going, but the truth is that I probably don’t because caring for someone with FTD is exhausting and we’re not independently wealthy, so I have to try to slip in freelance work in between. Honestly, there is never enough time to work or clean or anything else.

The conundrum is that I am private. I don’t like people up in my grill. I don’t want my mom’s privacy compromised or to share anything that would embarrass her. But I also think our story could really help people and raise awareness as well, and I know she would have wanted to help people before this awful disease took hold. Perhaps we’ll just try it for a month and see how it goes. The truth is that I need a place to vent as well.

I can’t go to an in person caregiver group, because there’d be no one to take care of my mom while I went. I belong to a few Facebook dementia groups, but they honestly sometimes suck for venting. You have 500 people, all of whom are caregivers themselves, and because they’re all doing it too, they will want to tell you what you should do instead of just listening.

Even though they generally mean well, the truth is that most people have poor boundaries. There are times when advice is awesome and welcome, but there are also times when a person just needs someone to hold space and LISTEN.

I know I need a break.

I know I need to take care of myself too.

I know I need to ask for help when I need it.

I know I spent my 401k on care for her.

I know that I left a career to care for her.

I know the I somehow have to find the time to take care of her and earn money.

I know I can’t afford to get my car fixed.

I know that a lot of “close” friends fade away but a few golden ones stay.

I know my loved one has a disease and it’s not her fault.

I know it’s ridiculous to expect someone who can’t control their behavior to do so.

I know she has a disease that inhibits her impulse control.

I know that I monitor everything she eats, counting her calories more obsessively than any dieter.

I know I keep a log of her moods and good days and bad days to help with doctor visits.

I know that I don’t want to buy your new overpriced MLM cure.

I know my mom’s doctors know more than a salesperson.

I know she has a TEAM of doctors that I’m in contact with regularly.

I know she will go through a hundred different moods today.

I know we will dance and laugh to Sam Cook.

I know she will want to sit by me or where she can see me.

I know at some point she’ll probaby call me a bitch.

I know she’ll probably give me the stinkeye sometime today.

I know at some point she will look at me and say “I love you.”

I know she will laugh if I tell her our Jack-in-the Box Joke or our German “Fartville” joke.

I know if I cry she’ll likely say, “You’re my daughter. I won’t ever leave you.”

I know if I ask her to take a shower right now she will likely get angry.

I know when she’s about to have a meltdown.

I know when she’s happy.

I know the average life expectancy of a person with FTD.

I know the latest research on dementia.

I know what my mom has may be at least in part genetic.

I know my mom is going to fade away and then she will die.

I know that I miss her already.

I also know that sometimes I need to express the anger and frustration and grief that I try not to show in front of her and to be able to say “I fucking hate her,” even though I don’t. I love her more than anyone. Always have. Always will. But that doesn’t mean it doesn’t hurt.

And I know that sometimes we all just need someone to listen without judgment or advice or platitudes about “God” never giving us more than we can handle.

What Remains

“People pathologize dementia – they talk about how the person ‘dies’ before they are actually dead. And in some ways that is true…But this different person, the person they become, is still woven together with the essence of who they were.” Laury Jeanneret, What Remains When Dementia Makes Everything Else Fades

I would even go so far as to say that my loved one is not a “different person,” though her disease sometimes makes her behave in different and (to put it mildly) challenging ways. She is not dead, though she may be sick and dying and doing it in ways that are uncomfortable, heartbreaking, and even frustrating for both her and I.
But that is all just an outfit, another layer above the skin and bones we live in that are not us but a vessel. There is a part of each of us that is eternal and even dementia cannot take that away. Dementia may be able to assault earthly brain and body functions, but it cannot touch that golden thread of spirit that makes us who we are.
It makes me sad when I hear people say their loved one is “gone” or “already dead” at the same time as I know from my own experience how hard it is to find that person we remember as time progresses and they step further and further across some liminal threshhold where we cannot follow. Some days I can draw her back out, but not always and I know there may come a time when I can’t at all.
But essence, that spark that makes people who they are, I do believe that somewhere beneath behaviors and withdrawals wrapped up in the existence of tau proteins and plaque and tangles, that spark is still there and it remembers…even if it’s hard to find some days.
#endFTD #endAlz #caregiveradvocacy #dementiaeducation

Dementia Awareness Day

Today is World Alzheimer’s Day and September is also Dementia Awareness Month (with November being Alzheimer’s Awareness Month). Although these manufactured days and months are really created for other people, they always feel a little incongruent to me as a caregiver, because the truth is that when you are living up close and personal with one of these diseases in your home, every day is Dementia Awareness Day. There is not a moment that I forget its presence in our lives.

In the beginning, one can have dementia and still be pretty high functioning, but as these diseases progress, they start to touch everything. Before it stole its way into my home, like most people, I thought Alzheimer’s was dementia and that it was mostly cute little memory lapses and “Oh, look, Grandpa put his napkin in his biscuit again and is now complaining that his sandwich is dry. That guy!”

But the truth is that it’s so much more, and it always ends in the same way. And that’s the heartbreaking thing about dementia. Even though it is the 6th leading cause of death in the U.S., there is no treatment and there is no cure, only the certainty that the disease ends in death. And it’s not just an old person’s disease either. Early-onset forms are on the rise.

The difficult thing about dementia is that depending on the person and type (Alzheimer’s is just the most well-known of a host of forms!), behaviors can vary greatly. While my mom had some short-term memory issues in the beginning, her ability to reason and do things like complex math remained intact for a long time. Even now, she can figure out percentages, but she doesn’t remember what she did an hour ago. She can’t be left alone–not ever, because her judgment isn’t great and it isn’t safe if I don’t want her heating pork chops in the toaster or wandering off and not finding her way back. Other people have different symptoms and behaviors.

But as the disease progresses and more parts of the brain are affected, eventually there starts to be a lot of overlap — mobility issues, loss of continence, difficulty processing too much sensory input at once, ability to swallow, and ability to perform self-care (a common thread is challenges with and resistance to bathing).

And then, there is anosognosia, where people lack the self-awareness to know they have a disease, which further complicates things, because they just don’t understand why they need this medication or why it’s not safe to drive or why they suddenly need to wear a diaper or why they can’t stay or go out alone. Can you imagine as a functioning adult having someone suddenly tell you, “No, you can’t go to Starbucks alone. You need to wait until I can take you.” Wouldn’t it make you angry?

It is a hard, hard road, not just for the person with dementia, but for family caregivers too. As loved ones decline, we are faced with difficult questions like placing them in care facilities (some are caring and good, but it’s always dicey, if you know about some of the abuse people suffer in others) or hiring in-home care or giving up a career or working part-time at significantly reduced income and later retirement to do it ourselves.

Did you know that family caregivers provide $470 billion (yes, you read that right BILLION) in unpaid care each year? Our out of pocket costs average $10,697, often at great sacrifice to our own futures. I know I have already spent just about my whole 401k on care for my mom, so no retirement for me.

Before we are done, I will likely have to sell my childhood home to finance the rest. I do work and am lucky to be able to work at home doing something I love, but my hours are limited and there are many distractions, because, hello, 24/7 care needs. And I am in no way unique. There are people in a much direr straights and we are lucky to have a home to sell.

And let’s talk about support for care needs. Not a millionaire? Thinking about using Medicaid? It’s great it’s there, right? Yeah, well, not so fast. It’s grossly inadequate and different everywhere because it’s administered by the states and they get to make up their own rules. Living in Oregon, my mom would qualify for about 60 hours a month of in-home care (mind you, she must be supervised 24/7), but it would come out of any equity she had in a home after she died.

Living in some other state, she might not qualify for anything at all. And, even worse, their policies are woefully unequipped to serve the needs of those with cognitive decline, because they mostly only focus on physical disability and don’t account for the need for supervision beyond help with a limited number of activities of daily living.

People sometimes qualify for Adult Day-Care. Again, it’s not generally enough to help with any kind of significant respite. But even if you qualify, being able to go is not for sure, because care facilities (and this is true of living facilities as well) will often kick people out, if they have any kind of behavior management issues. My mom has FTD, which can come with behavior challenges. She went to a respite facility specifically designed for individuals with dementia for about a year until she was nicely asked to leave for (gasp) exhibiting symptoms of her disease that were hard on the staff.

If it’s hard on a team of 10 for an hour or two, imagine how it is for ONE family member managing it 24/7, 365 days a year. In fairness, they did try to work with us and move her to a sundowning program, but that had the same issue and the end result is no respite for me and no daycare or socialization for her.

We’ve adapted and I don’t at all mind having her with me. I love her. But the truth is that our systems for dealing with these diseases are half-assed at best and mostly place the burden on the caregiver to give up significant parts of their life or just say “Too bad for Dad. Guess he’s on his own now!”

It is perhaps one of the saddest aspects of these diseases that services often fail when they are most needed. I didn’t need respite when we were in the sweet shadowing or mild memory lapse phase, but on days where I wake up to door slamming, screaming and being called a fat, lazy, bitch until I want to cry, yeah, I could use an hour off here and there.

And don’t think it’s just respite care. Even doctors lose interest when they see that they are no longer making any progress treating the untreatable. That sad truth is that many are just not well educated on dementia, especially the rarer forms like my mom’s. My experience has been that it’s often abundantly clear that doctors and medical staff have no training on how to interact with an adult with dementia. This is true of just about every Medicaid social worker I’ve ever met too.

And then, there are people. There are some true blue friends who check in regularly or do nice things with like leaving boxes of chocolate on your doorstep because they know it’s been a hard day. But for every one of those, there are several who fade away, even ones you thought you were really close to.

These diseases are isolating and change everything including the caregiver. I am only in the middle of my journey and I know things will never be the same again after what has been the greatest Underworld journey of my life.

And then, there are the strangers. They too are a mixed bag. There are the ones are so amazing, you could kiss them. They are the ones, who smile and play along when your loved one thinks she knows them (she thinks she knows everybody!) or kindly offer to help when things go wrong or just treat her with compassion, like a human being.

But then, there is also the guy who uses the public meltdown your loved one is having to cut in front of you in line at the pharmacy while an employee threatens to “call someone” (aka the police) and the woman who loudly proclaims to her friend in front of your person that she “stinks” (remember I said bathing and also continence were sometimes issues?).

And, at the same time as all of that, there are moments that you treasure, like rides into the country or the same stupid joke that makes her laugh every time you pass a Jack-in-the-Box (Her: Why is Jack in a box? Me: Because he wouldn’t stay in the bag) or when you sing together or when you play your violin and she dances like she was 17.

Or, my favorite, when after days of crabbiness or forgetting who you are, your loved one’s face suddenly lights up with recognition and she grabs your hand to tell you she loves you and for one precious, fleeting moment she is just your mom again and you love her and she loves you.

#endalz #endftd #endallmentia #caregiving #dementiaawareness

Just another day in dementialand

Sometimes dementia leaves you not knowing whether to laugh or cry. Like when your loved one calls you a bitch, and you calmly tell them, “Don’t you call me a bitch,” and the response you get back is “Double bitch” before they retreat back into their hidey-hole.

I guess I should have been more specific about emphasizing the “be nice” part. I used to be incredibly thin skinned. By the time we are done, I think I am going to have a permanent armor around me. Learning to shield is a life saver!

Postcards from Dementialand

I am writing a book. I’ve thought about it for a long time. All of these long posts I write to spread awareness and share our story are just practice for it. I had thought it would be something for one day when this journey with my mom is over, something from a spiritual perspective that is decidedly not Abrahamic, something uplifting that shows all this experience has taught me, wrapped in some neat package that gives it meaning.

But more and more, I am feeling the pull to do it now, while the emotions are fresh and I am in the experience. Perhaps one day I will write a different after version with all I was wrong about now. But this is the art of now and what needs to come out. More and more, I know that my words are my activism.

I want people to understand the raw reality with a view from the weeds and not the cleaned up version that comes with the distance of now past experience. There are already enough of those books. I want people to understand how dwelling on the borders of Dementialand and crossing the liminal to join a loved one rather than trying to drag the into normal reality feels…

Here is an excerpt:


There are days, weeks even, when dementia thinks it is the only person in the world.

People will tell you that people with dementia become like children, but in my experience that is not true. Childhood is full of hope and possibility. There is none of that here, only the fading that comes with a slow and heartbreaking march to death.

And it’s not like taking care of a child either. A child doesn’t know what she doesn’t know. With cognitive decline, there are spots along the way where the person has forgotten many things, but still knows pieces, even if they’re just slivers like “I’m 80, not 8 and you’re talking to me like a child.” While some elders with dementia take comfort in things like baby dolls, my mom looked at me like I was not playing with a full deck the first time I broached the subject. She was clearly not ready and that felt like a small victory.
Perhaps it will be something for later in the progression, perhaps not.

Everyone is so different. As humans, we like to think that our experience is *the* experience, but the truth is that there is no one dementia. It all depends on the type, the part of the brain affected, the present stage, the living environment, and the unique makeup of the individual affected by the decline.

The one thing I do know is this. And I know it so deep in my bones that no one will ever convince me otherwise:

Having a disease that makes one forget is not the same as never having gained wisdom and life experience at all. It is not the same as never having left homelands, lived as a refugee, learned languages, escaped not one but two authoritarian governments, born and buried children, worried as a lover fought in Vietnam, raised a family, buried a husband, or built a new life in the aftermath.

A disease cannot erase all that. And it does not erase humanity. Nor does it erase that there is within a body, even one ravaged by disease and time, a spark that is sacred and eternal.

The inability to remember whole worlds doesn’t mean they never existed, that they never shaped us, that they don’t have a hold on our emotions. We all live in our own reality. Living in one, even one that most of us would consider abnormal, does not change that it is reality for the person dwelling there. And it doesn’t mean a person doesn’t deserve dignity and respect, even though as a caregiver one sometimes has to fight valiantly to offer these gifts when a loved one is behaving in challenging ways. People grow tired of hearing, “It’s not them; it’s the disease,” but it is. It is all part of the decline.

And decline is just that — decline, the slow death of a brain that will ultimately lead to the death of a body, but keeps a person (and family caregivers too) in the limbo of a half-life filled often filled with flashes of sometimes inappropriate and intense emotion peppered by moments of forgetfulness and lucidity. It is intense and often leaves beloved and caregiver alike feeling physically and emotionally exhausted, increasingly isolated, and utterly alone.

There are days s a caregiver when you wonder if you will ever remember again what it feels like to not be tired, but it doesn’t really matter. You keep going, because you have to.

The Mistakes We Make

We ALL make mistakes and none of us reacts perfectly all the time. That’s why I hate those lists that say “NEVER do this.” “Don’t EVER do that.” In an ideal world, we all would respond perfectly and know what to do all the time, but Dementialand is anything but an ideal world. We do our best.

I will never forget the day I gave my mom Benadryl for her allergies. An hour later we were in the ER. She couldn’t walk, her speech was slurred. I thought for sure she’d had a stroke. And that was super scary, because my dad died after having a massive stroke.

As it turns out, diphenhydramine aka Benadryl can cause confusion and mess with brain function in those with dementia and the ederly in general should be careful with it. While it’s such a common drug that it should be common knowledge, I’ve even met nurses, who didn’t know. I was actually attacked by one in a dementia group, who (despite the reams of information one can find on the subject), told everyone I was making it up, but that’s a story for another day. Thank God the ER doc did know and as soon as the medication wore off, my mom was okay just as he said she would be.

I, on the other hand, felt so horrible. I go out of my way to design brain healthy menus, make sure my mom has everything she needs, often putting her needs before my own. But no one had told me. Not her PCP, not her neurologist, not her geriatric psychiatrist, no one.

Now I know. Now the first thing I do when we get any new medication is check for contraindications and call the pharmacist before adding anything, even if it’s a “harmless” over the counter drug. I also make sure as part of the advocacy I do for older folks and caregivers to tell whoever will listen to be careful with it.

Do I still feel bad that it happened? A little, but I also know that I was doing the best I could with the information I had available to me at the time, so I try to give myself a little grace. You see, life is not about doing everything perfectly.

Our character isn’t even about doing everything perfectly either. It’s about how we handle tough situations, the times we’re tempted, the times we screw up, and what we to do respond and what we do to correct our errors. It’s not about never making mistakes. It’s about taking ownership and learning from them.

Here is a great article that delves a little further into the subject:

SO YOU MESSED UP IN DEMENTIALAND: MAKING MISTAKES AND COPING WITH GUILT

A someone shared this article with me earlier today. It gives a good glimpse into what a lot of family caregivers deal with every day while losing income, freedom, career advancement, because they’re taking time off from work or have quit all together to care for a loved one. And there are a lot of people doing this all alone, becoming more and more isolated as friends and supports slip away.

While I am a solo caregiver, I am lucky that I can get by on not much sleep and have a really good education and skills that I have been able to use to create income, but not everyone can just go start a business and even I don’t have the time I truly need to nurture and grow mine as much as I’d like.

Furthermore, most of us contribute to care and supplies for our loved ones out of pocket, because a lot of care is not covered. This is often done with no compensation, no thought toward diminished resources or future and it is wrong.

Below are just a few of the behaviors caregivers may deal with (and this is in addition to the other mundane things we do like cooking, cleaning, managing medications, doctor’s appointments, laundry, clothing groceries, cleaning up things your never expect to have to clean for another adult, and playing amateur psychologist, nutritionist, nurse, and activities director).

We need to do better for our vulnerable populations and the people who care for them. The elderly should not end up in facilities just because we don’t know what else to do with them or because a caregiver has reached the end of her rope. Such decisions should be made based on what is best for our loved ones, not burnout or poverty and I’ve seen the latter happen again and again in the care circles I belong to.

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The Challenging Behaviors Associated With Dementia
Some of the most common challenging behaviors and personality changes that dementia brings include:
Aggression
Anger
Apathy or disinterest
Changes in personality
Communication problems
Following another person around the house all day
Mood swings
Night time waking
Pacing
Physical acting out (hitting)
Restlessness
Verbal Abuse