What I wish people knew…

The other day someone asked me, “As a caregiver, what do you wish people knew about dementia?” This is my answer.

1. Alzheimer’s and Dementia are not interchangeable. Alzheimer’s is just one among MANY forms of dementia, but gets the most attention, because it is the most common. A lot of GP doctors are not skilled at diagnosing and recognizing them and need better training. It took YEARS for us to get a diagnosis and then it was wrong. After that, it took months to be referred to a neurologist. If a diagnosis does not feel right to you, research, ask questions, keep pushing. Especially if you have a loved one who suffers from one of these diseases, your job is to advocate for them, which isn’t necessarily always going to please all doctors, agencies or insurance companies, but that is okay. While we always strive to hold space for good interactions, ultimately pleasing the machine not your job. Your job is to garner the best care for your loved one.

2. Alzheimer’s, FTD, Vascular Dementia, etc. are brain diseases, just like cancer or MS or kidney disease are diseases. They just don’t share the same stigma. People who have dementia are not “crazy,” “feeble,” “mean,” or “dificult.” They have an ILLNESS that unfortunately sometimes affects impulse control, judgment and social boundaries, but are still adults who deserve to be treated with dignity and respect, so please don’t treat them or talk about them like tthey are not there. Also while I’m on the subject, caring for an adult with dementia is not like caring for a toddler. A toddler has the whole world in front of her and is learning and evolving and growing in beautiful ways with each passing day. What is happening to our loved ones is quite the reverse, is fraught with grief as pieces of them drift away and it ends in death. See. Nothing alike.

3. A diagnosis of dementia (or any of the diseases under the umbrella) does not mean life is over. Dementia patients, especially in the early and mid stages, enjoy social interaction, make friends, are creative, like doing things, and have individual talents and preferences. They’re kind of like people that way.

4. Every case is different. Just because your Uncle Joe had Alzheimer’s does not mean that my Aunt Frieda’s will manifest itself in exactly the same ways and vice versa.

5. Our system of care in the U.S. for people with these (and other chronic illnesses, for that matter) SUCKS. It is inconsistent depending upon where you live and complicated and hard to navigate when you are healthy. Add cognitive impairment and it becomes almost impossible.

6. Caregivers and patients spend over $200 billion a year out of pocket for care needs. That number is expected to rise to $1.1 trillion by 2050. We give up jobs, retirement funds, resources, social interaction, and a good chunk of our lives in service to caring for our loved ones. Like many caregivers, I can’t imagine not doing what I am doing no matter how much it costs in not just financial but personal reserves. That said, it is a huge sacrifice and there is a reason why there is a high rate of severe illness, early death and even suicide among caregivers. We need real systems of support and they simply do not exist. And before you refer me to Alzheimers.org, they are a lobbying and fundraising organization. While that is necessary as well, it does next to nothing for families living the day to day realities of these diseases..

7. Never give up hope. While there is no cure for any of these diseases (they are sadly all terminal), there ARE therapies and approaches that help make things easier. I’ve seen alternative therapies make a huge difference and work magic in cases where people seemed to be declining (not always – see #4 “Everyone is different,” but enough of the time that it’s worth mentioning).

8. Unless asked, don’t share your horror stories about how awful it was when Grandma Edna was wasting away before she died. My mom’s initial misdiagnosis was literally delivered with the following sentence: “She has Alzheimer’s Disease. Eventually, she will forget how to eat and need feeding tubes and starve to death. Here, help her fill out this advanced directive and come back in six months.” I can tell you that it was the most colossally unhelpful bit of wisdom that has ever been delivered to me in my 40+ years on this earth. Horror stories occupy a similar space that is also home to jokes about
“doddering” and “babbling.” There is a lot of grief tied into walking the path of dementia and in walking that path with someone and a bit of sensitivity never goes awry.

9. This disease is filled with so much sadness in addition to moments of fragile beauty. There will be times when you have to fight with every cell in your body to not react in kind when your loved one is sundowning and says something horrible. There will also be moments, like when they sadly tell you “I know I love you, but I don’t know who you are,” when you think your heart will break in two and the truth is that it will break – over and over again.

10. While most of us who care for others are always on the lookout for solutions to alleviate symptoms and fervently hope for a cure, please keep your shakes, high cost keto supplements and other miracle cures that just happen to make you money to yourself. While there is much to be gained from alternative therapies, unless you are very well educated on brain diseases, it is unethical and predatory to promise your expensive MLM product will “cure” a complex, incurable, terminal disease.

11. These are not just diseases of the old. Early onset forms are becoming more common. If you are a woman, you have a ONE IN SIX chance of developing dementia during your lifetime (ONE IN ELEVEN for men) and nearly 50% of adults over 85 have some form of it. We have to keep fighting until a cure is found.

12. If you know someone who is dealing with dementia or any other chronic, severe or terminal disease either as a holder of them or a care partner, don’t wait for them to reach out, check in on them. Chances are they are overwhelmed and too busy to reach out to you or just don’t want to bother people.

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I look at my mom and can see how much she is aging these past few years. She has always seemed so young to me, because she’s always been fiercely independent and had a silly, young spirit. The past couple of days, she seems to be undergoing a shift. The other day when I picked her up from respite care, she came running out crying how glad she was to see me, because it had been so long (she lives with me and I’d just dropped her off five hours earlier).

She did the same thing this morning when she got up and then cried, because she didn’t remember who I was and thought it would hurt my feelings. And then, she got and we started getting ready and had a really nice day, where she knew I was her daughter and kept telling me she loved me and would never forget me. And I wonder how many more years we’ll have of going on these little road trips together.

This life of walking someone through dementia and toward death is not something I’d wish on my worst enemy (not that I have any enemies), but it has taught me a lot. And one thing is that you never know what will happen. You don’t know that you’ll have time to do that thing you always wanted to do “tomorrow,” because tomorrow is not guaranteed.

So, don’t wait to be thinner, richer, less bald, less anything. Do what matters now. Hug people, tell them you love them, be vulnerable, go on vacation, take time for your kids, play with your dog, follow your dreams, be willing to make a fool out of yourself in service to them, and do all the things, because you do not know that you will be able to do them later.

I look at my mom and can see how much she is aging these past few years. She has always seemed so young to me, because she’s always been fiercely independent and had a silly, young spirit. The past couple of days, she seems to be undergoing a shift. The other day when I picked her up from respite care, she came running out crying how glad she was to see me, because it had been so long (she lives with me and I’d just dropped her off five hours earlier).

She did the same thing this morning when she got up and then cried, because she didn’t remember who I was and thought it would hurt my feelings. And then, she got and we started getting ready and had a really nice day, where she knew I was her daughter and kept telling me she loved me and would never forget me. And I wonder how many more years we’ll have of going on these little road trips together.

This life of walking someone through dementia and toward death is not something I’d wish on my worst enemy (not that I have any enemies), but it has taught me a lot. And one thing is that you never know what will happen. You don’t know that you’ll have time to do that thing you always wanted to do “tomorrow,” because tomorrow is not guaranteed.

So, don’t wait to be thinner, richer, less bald, less anything. Do what matters now. Hug people, tell them you love them, be vulnerable, go on vacation, take time for your kids, play with your dog, follow your dreams, be willing to make a fool out of yourself in service to them, and do all the things, because you do not know that you will be able to do them later.

Why caring for a dementia patient is NOTHING like being a parent

A week or so ago I was having a conversation with a colleague where she mentioned that she’d found herself thinking that she knows how hard my role as caregiver for my mom is, because she has a toddler and then stopped herself, because she realized that the two experiences are nothing alike. I don’t think she even knows how much I appreciated that comment, because you know what? She is not only extremely compassionate and sensitive, but she’s right.

This idea of Alzheimer’s or dementia caregiving being akin to child rearing is something I hear come up again and again from well-meaning people, who think they understand the caregiving journey, because they’ve raised a child. Don’t get me wrong. Parenting is an immense and important job not to mention a HUGE responsibility. If I wore a hat, it would be off to anyone who takes on the job of parent and does it well.

Life is sacred and when you bring one into to the world, you’re darn right there are going to be challenges and a deep love is born with that baby that will stretch you beyond what you ever knew was possible. Parents, especially parents of toddlers and teenagers, are rockstars.

But, I am here to tell you that raising your child and caring for someone who is dying of a brain disease are NOTHING alike. For one, being a parent is a choice. Certainly, there are instances that should never happen where it isn’t, but most couples are not forced to bring a baby into the world.

While I will always take care of my mom and do so willingly, none of us who care for loved ones with dementia signed on for this disease or the disruption and immense sorrow it brings to the lives of everyone who is touched by it, not least of all the patient.

I know I did not cry tears of joy that day in the doctor’s office when the doctor announced that my mom suffered from severe cognitive decline and would eventually forget how to swallow and stop being able to toilet herself, nor did the news fill me with hope for the future as I sat there unsuccessfully trying not to cry at the same time I was trying to gauge my mom’s reaction and wrap my head around a diagnosis that she didn’t seem to understand. And I doubt all of my friends who walk with their spouses, partners, and parents through dementia (especially early onset forms — talk about a cruel disease!) experienced anything much different.

The first time my mom forgot who I was, it was like someone was twisting a knife in my gut. But can you even imagine having to explain to your child why Daddy doesn’t know who they are anymore? Or maybe you’d like to have to explain to them why Mommy is suddenly mean and aggressive or having hallucinations, because something in her brain is misfiring.

The truth is, dementia is a massive disruption to the life of the patient and everyone who loves and cares for them. While not all of it is bad, nothing about my existence is the same as it was pre-FTD. I have had to rearrange my whole life, everything, to be able to care for my mom, who is in the mid-stages of her disease and cannot be left alone for reasons of safety and anxiety (both hers and mine!). And even if she does have dementia, she is an adult with a life and experiences that are to be honored.

While our communication does sometimes have to be adjusted to make sure we understand each other (especially these days where she is starting to show some of the linguistic effects of her illness and can’t always find the right word for things or regresses to German), she does not deserve to be treated like a child. She is a grown woman who has lived on two continents, survived a war, refugeeism, immigration to a foreign country, the loss of a baby, and the loss of a spouse. She is not a child. She is sick.

And that doesn’t even address the emotional and financial strain. I can’t tell you how many fellow caregivers I’ve met who are struggling just to get by, because they’ve had to give up careers and stable incomes to care for their loved ones. I can’t tell you how many people I’ve met who struggle with just getting services for their parents or spouses. Medicare and Medicaid are a joke.

Our system is broken and the hoops you have to jump through are exhausting, especially when you already have the already exhausting job of caring for someone who is declining and doesn’t understand what is happening to them and has to be reminded of and needs help with even the smallest things. And that’s before the disease even gets bad.

And here’s the thing. You care for your children while they develop and grow, knowing they will eventually spread their wings and fly, hopefully to beautiful experiences and places. For the dementia care partner, we are warriors in a battle we know are ultimately going to lose, but still caring for someone, who no matter what we do, is declining and losing capacity.

My mom is not a child. She is an adult with a devastating and heartbreaking illness that will eventually kill her. She is dying and she is doing so in front of me, little by little, day by day.

There’s no pretty way to say it. No matter what I do. No matter how well I take care of her, how many vitamins I give her, how many doctors we visit, how many happy experiences I try to create for her (that she probably won’t remember the next day), the reality is that she is going to die.

Yes, it is sacred work and even work that has taught me many things. It has taught me my strength, my capacity and that life is fleeting and frail with no guarantees, so do the things you want to do NOW, because you my not get the chance later. And it most definitely has taught me who my real friends are.  But it is also fraught with sorrow and not something I would wish on any other human being ever.

And underneath all of that, I am NOT the parent of a toddler. I am a death doula doing everything I can to make my mom’s last years as comfortable and joyful as I can, just as I know I will do all I can to make her passing as peaceful as I can when that inevitable day comes.

Saving your tears

Today is respite day. After four visits, I am not sure how I went for over two years without a break. That is not to say that dropping my mom off there is a happy occasion. I wonder sometimes, if there will always be tears as I walk out the door. I manage to hold it together until I exit the building, but they always start before I can make it all the way to the sanctuary of my car.

Well-meaning friends have tried to tell me that it’s like dropping your child at school for the first time. Perhaps the sadness of separation is the same, the wistfulness of knowing they will not be yours forever. Beyond that, I don’t see much similarity. When you drop your child at Kindergarten, you know she is there learning valuable social skills and information that will set her on a good path for her life ahead. It may be difficult to let her go and to see that she is growing up, but it’s a good thing, a normal developmental milestone.

The simple act of even taking my mom to respite care is a reminder that the funny, strong, fiercely independent woman who raised me is becoming more fragile by the day. When I take my mom to respite care, I am taking her for a break, because she has a disease that ends in death and I am the only family member to take care of her. No matter how hard I try to sweeten it with euphemisms or not think about it, my mom’s brain is dying and death is the outcome. That seems rather the opposite of Kindergarten.

And the truth is, when you step into the role of caregiver, you’ll find that people say some colossally stupid things to you. I have heard everything from “It will end one day” (yes, it will – in my mom’s death, thanks) to ruminations about the disease being a “bridge to God” (bridge to Hell maybe…God, not so much) and what an “angel” I am for doing the right thing and caring for her (as if she were a burden…human beings may get sick, but they are NOT burdens) to people telling me I need a break and should put her in a nursing home so I can get a “real job” again. (I guess running a fledgling business that I adore, freelancing, and the full-time one I have as a caregiver aren’t real enough.)

And you learn a lot about your “friends”too. I have friends who are truly family and have been truly amazing as we’ve gone through this journey. They make it understood that when they invite me, they are inviting her and they treat her like their own mother and they treat her like a PERSON. I’m not sure they have any idea how truly meaningful this is to us both. So many people, when they hear someone has Alzheimer’s or Dementia stop treating them like they are human.

My mom may be sick, but she also has had a long an interesting life filled with examples of her willingness to help anytime someone needed it. She has done and experienced things many would not dream of doing. She has lived through wars (and I don’t mean from the comfort of her armchair, but memories of bombs, broken buildings and lost loved ones), lost children, escaped from a communist country, and boldly traversed oceans all by herself to start a new life, because she fell in love with an American soldier. She is a human being with feelings and deserves respect and not just some insentient lump to be talked over and around or treated like a child who needs a babysitter.

Then there are the other “friends,” the ones who don’t call as often because I’m not available for all the “fun” stuff, the ones who are filled with advice, but little help, or, even worse, people who make promises with little follow through or who bail at the last minute. It’s a story I hear again and again from my caregiver peers about their experiences with family members and friends. While I’m alone in caring for my mom and am also not typically one to ask for or expect help from anyone but myself, I can say that it makes a HUGE difference to know I have people who would help if it were needed.

This is not an experience I would wish on anyone, but it’s a huge lesson in friendship, in boundaries, in the fragility of life, how important it is to appreciate the ones you love while you have them, and how important it is to keep the promises we make. And, on respite days like today, a lesson about self-care and saving up your tears for those moments when you are alone, so you can put on a brave face when 3:30 rolls around and pretend that everything is “normal” and you don’t miss your mom.

Respite

This past week, I took my mom to respite care for the first time. While I’d been looking forward to it after a couple months of wading through Oregon’s Medicaid process, it turned out to be  a pretty emotional experience. It was the first time that I’ve had any time to myself in over two years. My mom is literally with me 24 hours a day, 365 days a year and, while I adore her and treasure the time we spend together, there are times when my introverted soul craves alone time so badly I can barely breathe. Meanwhile, she is the opposite and experiences separation anxiety, often seeking reassurance that we will be “together forever.” Some days this feels like hope, other days it carries with it the finality of a lock clicking on a cell door.

It’s a horrible thing to say or even secretly think, I know, and it’s really only a passing feeling, but I’d by lying if I said it didn’t flit through my mind sometimes for just a moment. It is one of the many ironies of the disease. I am not ready to lose her (I never will be), but it does have a way of sucking away at not only the patient, but also at the caregiver’s emotional, financial and spiritual reserves. Still, our first respite day turned out to be harder on me than it was on her. I felt so lost as I left the front desk at the care center and ended up spending my first 20 minutes of freedom sitting in the car crying in the parking lot.

It’s not so much that I feared they wouldn’t be good to her as that leaving my once confident, strong , fiercely independent mother in a building with a sign out front saying “adult daycare” is just an another affirmation that shit’s gotten real. This isn’t a mirage or a bad dream, she truly has FTD and we really are on a long, slow march to oblivion.

She is aware enough to know she has trouble remembering, but she doesn’t know she has dementia. She was there when it was diagnosed, she takes her “memory pill” each morning, but she doesn’t know. Even if I explained it to her, she’d forget within minutes. And yet, there are times when she will say to me out of the blue that she will never forget me.

It’s almost as though she’s trying to convince herself, to will herself to hold onto each little shard of memory. These days her stories often begin with “I will never forget…” only to be followed with a garbled series of fact that have no adherence to chronology or sometimes even truth. Each time it is like a little dagger in my heart, because I know she will forget. She is forgetting already. She still knows who I am most of the time or at least that we are related, but there are moments.

The first time it happens is like a punch in the gut. It feels like something you will never get used to it, but somehow you do manage to endure this new normal. I saw some ridiculous quote the other day that suggested that Alzheimer’s and dementia are a bridge to God. But there is nothing of “God” in this disease, not any God I want to know. It has its lessons and being close to it changes you. Like all terminal disease, it puts things into perspective, but it’s not a fair trade and certainly not a “blessing” I’d wish on my worst enemy. There have to be less painful ways to enlightenment.

But, for now, I am told that her first day in memory care was a good one and she was obviously enjoying herself when I got there to pick her up. Despite the memory problems, she’s very social and adores being around people. If anything, the changes to her frontal lobe have made me more outgoing.

As for me, despite its bittersweet nature, the few hours of alone time had an amazing effect. I feel more patient, less hopeless, less tired. It’s funny sometimes how we can go on just existing, doing what we must and not realizing how very tired we are. I hadn’t wanted her to go to respite care, because some part of me felt that as long as I could do it all myself it wasn’t real or it wasn’t that bad, but now I realize it was a good thing for both of us. She had some fun and I am a kinder, more compassionate caregiver and know how much we both needed this.

Light

In these days of darkness, this question lives at the forefront of my thoughts. How do I make a difference? How do I make the world a brighter place? How do I leave it better than it was when I got here?

This little light of mine…

For so long, I felt like my work didn’t make a difference, like I wasn’t making a difference. I worked so hard for people who weren’t in need, but were the only ones who seemed to benefit from my blood and sweat. And it felt like my light was dying. I’d strayed so far from the path I’d originally set for myself. I’d see the models of The Hermit with his lantern and Hecate with her torch and my own light felt so tired and small, like a waning ember. Much of the past year has been about stepping out of the hierarchy of patriarchal society to embrace and creating a feminine vocation for myself that allows me to let it grow and shine brighter.

I’m gonna let it shine…

In the past, I tried to make up for it by working for justice in the world. Ignited by the stories of my own family of refugees, I worked at what felt like a sometimes losing battle to create peace in the world. I organized anti-war demonstrations, I volunteered with Amnesty International, with immigrants rights organizations. It was good work and good medicine, but it wasn’t my work, at least not my only work.

This little light of mine…

And slowly, the demands of my own job and life eclipsed it and all around me became dark. But something happens in the darkness. We see new potential sources of light. They are there in our periphery, if we look for them…

I’m gonna let it shine…

And I realized that my light was not in my job or in an organization, but in standing and speaking my true voice and helping others to access theirs.

Let it shine, let it shine, let it shine.

My light shines whenever I rescue a stray dog. I shines when I use my voice speak for those who have none. It’s there when I care for my mother as she ages, listening to her tell the same story for the third time that day. It’s there any time I step forward with my best self. And it’s there any time I encourage others to be their best selves too. I’m so grateful that the work I am creating for myself will allow me to do that.

Solitude (or after the fall)

Crow BeachThere are days when I crave solitude. As an introvert, I need it. As a caregiver, I don’t get it very often. And yet one of my most profound periods of stillness occurred last year. At Samhain I fell, breaking a bone for the first time in my 45 years. Not one to start small, my body picked my shoulder. Shortly after I lost my job and a big part of my identity for twelve years. By the time the Yuletide season blew in, I was depressed, feeling betrayed by my body and my life, in pain, and not able to move much. What there was time to do was go within, a luxury I didn’t often have with a 60+ hour a week job and a mother with early dementia.

So, I did the only thing I could. I crawled into a cocoon of solitude to heal my body and soul. Often in modern life we don’t take enough time for these things. It’s not our fault. Many of us work crazy hours, strive to care for those around us, often waking up tired and going to bed even more exhausted. It shouldn’t be this way. We don’t hunt our food, most of us don’t shiver through cold winters, but the stress…It gets to us. And sometimes our higher selves protest, forcing us to slow down. Sometimes for all their effort, we don’t listen and they have to make the tower fall to get our attention.

Looking back, I see the stillness that followed my release as magical. For the first time in years, I had the chance to be silent and really listen. And what did I hear? I heard that I didn’t like the way I was showing up in the world. I heard that I hated the job I’d just lost, that it was slowly sucking my soul. I heard the call of crow.

One day, shortly after the fall, I was in my spot in a recliner, wrapped in blankets, covered in concerned dogs (little canine nurses who were determined never to leave my side), and meditating on where my path would lead me and how I could best use my unique voice in the world when I heard a horrible ruckus outside. Crows. Very excited crows. Drugged up on Vicodin, I shed my blanket and care team and very slowly made my way outside, holding walls and door jambs to avoid slipping on the ice. The cawing continued as I made my way off our deck. I looked up to find dozens and dozens of crows in the old, giant cherry tree in the back yard. Crows are not uncommon in my neighborhood, but I had never seen anything like this.

I’ve always been fond of these birds, but it felt like they were there for me. It’s felt that way ever since. They’ve come up many times over the past months, even in a session with a Shamanic practitioner I worked with in the spring. As we journeyed together, I felt crow pecking at my throat, removing a bloody cherry pit from it then felt myself flying with black, inky wings. You can imagine how surprised I was when my teacher announced with no prompting from me that the medicine he had brought back was crow medicine. Crows and finding my voice, my true voice have become a theme over the past year. And all of that grew out of those first sad, contemplative days and weeks of solitude that I now see as the best thing that ever happened to me.