I am angry…and it’s okay

The other day I had a disagreement with an acquaintance. She likes dog breeding and dogs shows and I don’t. I don’t really want to talk about my reasons beyond saying that I am not a fan of businesses that use animals as commodities or for entertainment. The disagreement is just set up for talking about some other thoughts. People disagree. Even good people  have different opinions. In general, unless we are treading into morally charged territory like racism, misogyny, bigotry against specific groups, etc. differences are no big deal to me.

The difference in opinion would not have bothered me at all, but what did bother me was the framing she was using that included speak like “you know better” and “you don’t really believe that.” What I find most ironic is that she felt her opinion was being silenced, when I told her “You have a right to your opinion, what you do not have a right to do is come into my space and tell me what I am allowed to say or what I really think.”

The use of language like “You know better” or “you don’t really believe that” is a tactic (even if an unconscious one) to delegitimize someone else’s point of view. There is a huge difference between “I disagree and here’s why” and “You don’t know what the right thing to believe is, so I’m going to tell you now.” Disagreeing with me is fine, diminishing me is not.

To add insult to injury, she also made the utterly laughable suggestion that I was just being contrary, because I had a bad experience with a social worker a week or so ago. Like I can’t separate out a completely unrelated experience from general worldview? Like I have one facet of me (caregiver) and can’t have thoughts and opinions unrelated ot it? Please. I’ve had men do the whole “You’re tired/overwrought, etc.” bullshit on me, but to have another woman do it to me while telling me I don’t know what I think and screaming that her voice was being squelched (sorry, lady, your voice extends to sharing YOUR opinions, not telling others what their should be) is what really triggered me.

And, yeah, I’ll admit I was triggered. I work really hard to educate myself and don’t just based my well thought out world views on whim. As a result, it’s annoying to have someone talk to me like I’m some kind of hysteric or child, who doesn’t know her own mind. I’ll even admit that there’s probably some ego in there. The thing is that I make some of my money teaching women to use their voices and speak up, so I don’t feel like I can just let someone come into my space trying to dismiss my views without speaking up for myself, if I don’t want to be a complete hypocrite.

While I probably would have made an effort to make up had she been an actual friend and not just a random Facebook acquaintance, who travels in a few of the same groups I do, I didn’t really let the nonsense go too far before making it clear I was done. She ended up unfriending me, which is unfortunate, but fine. I am not for everyone and everyone is not for me. She will find her true people just as I will continue to find mine.

The whole experience reminds me how far I’ve come in terms of boundaries. There was a time, when I would have let her bully me and would have left the exchange worrying that I was “wrong.” That’s not to say that I don’t review my actions and look for ways in which I might have handled things differently, but I also don’t immediately assume that I am the one in the wrong anymore and take all the responsibility onto myself, which is something I used to do.

The biggest difference today is that I know my boundaries and enforce them. One of my boundaries is that dementia makes my life dramatic enough. As a result, I don’t tolerate drama in my space, especially not from people who are no more than acquaintances (real friends and family get a little more leeway, because there’s more investment there). It doesn’t matter to me if you’re a friendly acquaintance or even a potential client. While I do try to be understanding and fair, I also don’t do drama and my door closes, if you bring it to my doorstep.

And that’s the thing when you’re living with a situation like an illness that carries with it a high baseline of responsibility and stress. You have to find ways to protect your reserves. It’s really important to me these days that my reserves go toward taking care of my mom and also myself. That means that I have some pretty hardcore boundaries around what I tolerate and that I say “no” a lot more these days than I ever used to.  If things were different, I would probably be a little softer about some of these things, but my priorities are my priorities just as my beliefs are my beliefs and no one else gets to tell me what I believe or what’s important to me. It’s our basic core values that give us the strength to fight another day.

While I’m sad for any anger or hurt over what should have been a minor issue aroused on either side, when I look at how far I’ve come in knowing and enforcing my boundaries, I’m actually pretty proud of myself. And so, I thank the universe for this experience and for the way in which it showed me how much stronger I am now than I ever was before and I release it and say go with the Goddess, but go.

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Remembering

Earlier today I was going through some old posts on a now defunct blog, looking for a piece of writing. In the way of looking at old diaries years later, reading it now is an interesting time capsule of what my life was years ago. Life is so different now and I have to laugh at some of my frustrations. Back then, I worked crazy hours in a corporate job and probably complained too much about it. While losing it after 13 years was a shock when my company underwent a massive reorg in 2015, I can’t really say that I miss it at all.

Looking back, what I do miss is the amount of writing I used to do. I write a lot for work these days, but I don’t write just to spill out my thoughts much anymore or even just to record what’s happening with me. I am going to try, though, to do so more often and in more free form on this blog. I think it would perhaps be helpful, and while there are plenty of things that I miss from my old life (time with friends, travel, socializing, being spontaneous, etc.) at least this one is one I can actually do.

Early Diagnosis

http://www.thejournal.ie/alzheimers-disease-dementia-4207595-Aug2018/

Even though this article focuses on Ireland, it’s no less true in the United States. As with mental illness, there is a lot of stigma around dementia. We aren’t embarrassed when we have a broken limb or a malfunctioning kidney, but everything changes when the brain is involved. Patients may not want to admit that their mind is not as strong as it once was and the problem is further compounded by poorly trained doctors and medical staff. And that’s sad, because the best we can do for dementia right now is slow the progression and the earlier therapy starts, the better.
 
My mom went to the doctor for over year telling him there was something wrong with her memory and he kept blowing her off, telling her she was just getting older and not to worry about it. Then, when we finally did find a doctor, who would listen, she was misdiagnosed with Alzheimer’s and the diagnosis was delivered as, “She has Alzheimer’s. Here, fill out an advance directive, because she’ll eventually forget to swallow and starve to death and you’ll be dealing with feeding tubes. Come back in six months.” That’s it.
 
The only “education” provided was the doctor trying to pressure my mom, who didn’t want to, into refusing life saving measures. And this was at Kaiser Permanente, a huge HMO that has vast resources and no excuse for properly training its staff with not only knowledge, but compassion, neither of which were exhibited in my mom’s diagnosis.
 
There is simply no excuse.
 
As we’ve walked through the medical system in subsequent years, we’ve encountered some really lovely medical professionals and also several who had no idea how to interact with a dementia patient. Some ignore her completely like she’s not there, not a person. Some don’t seem to grok at all that she has dementia and isn’t always going to be a reliable source of information. Some just give up on scans, x-rays, exams, when she has a problem sitting still for them. Because, hey, she’s dying anyway, what does it matter, right?
 
Well, it matters to me and to millions of other people who are fighting dementia or caring for a loved one with it.
 
And it should matter to you too.
 
One in three seniors will die with dementia and dementia kills more people than breast cancer and prostate cancer combined.
 
I guarantee you, it WILL affect you or someone you love. Educate yourself. Keep an eye on your loved ones. Don’t be afraid to keep pushing, if you think something is wrong and no one is listening to you. Your life or that of a loved on may depend on it.

Banshee

A howling banshee
Screaming in my face at dawn
This day will be long.

Yelling. Shrieking. Door slamming. Hiding. Paranoia. And then sometimes they’re so sweet, you could almost forget. That’s the cruel trick of dementia. Just when you’re lulled into feeling semi-normal, it strikes.

The best part of when my mom gets like this is that she won’t take the pills that make it stop. During the day it’s easy to keep the medication steady, but at night, if you don’t wake up to do an extra dose, this is the morning. It’s enough to make you dread the dawn.

And for a while, I really did. It took several months to find our current medication cocktail. Before that, there were times when the screaming went on for hours. I counted the hours until she fell asleep and dreaded her waking, because I knew it would all start over again.

Thankfully, these days moods are mercurial and pass over us like clouds on a windy day. I’ve also learned how to ride it out and not exacerbate it, even though it’s not exactly pleasant. The wheel keeps turning and I know she’ll get back to herself again. So, now we wait for a window of pleasantness where I can get her to take her “vitamins.”

And people think dementia is just “Oh, grandma, is so sweetly eccentric or forgetful. Isn’t that cute?” If only…

Caregiving is not for the weak and there is no God in the clouds doling it out to only those who can handle it. It is thrust upon you and you learn to do so, because we humans are more resilient and resourceful than even we imagine.

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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 “difficult.” 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 they 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 fervently hope for a cure and are always on the lookout for solutions to alleviate symptoms, please keep your aggressive sales of shakes, high cost supplements and other miracle cures that just happen to make you money to yourself. While there is much to be gained from alternative therapies, it is unethical and predatory to sell false hope. Even if it has been shown to help with symptoms, do not promise your expensive 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.

Now

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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.