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.

Advertisements

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.

39994528_10156584627182346_4276486829114392576_n

Sharing

I share a lot about our dementia journey on Facebook (probably moreso than here, though I am trying to rectify that). As a result, I have at times had people messaging me and thanking me for sharing my journey with my mom.

The truth is that I am really private about things and my natural inclination is, honestly, to be so about this journey too. It is really important to me to protect my mom’s dignity and keep in mind that it’s not just my life I’m sharing but hers. And there are some pieces of it that I will never share for that reason. For the ones I do share, it’s a constant cycle of asking myself, “Would she be comfortable with me sharing this? Will pulling back the curtain help someone else in some way?”

The stigma that goes along with a dementia diagnosis is one of the major reasons I share. People with dementia are not toddlers or shells or non-persons. They have emotions, needs, wants, and preferences, even if they have a difficult time expressing them as the disease progresses.

I also know that people are moved by stories not facts and that’s why I tell ours. I could tell you that it is the only leading cause of death for which still no cure or that 5.7 million Americans live with Alzheimer’s or that there are 16.1 million unpaid caregivers caring for people with some form of dementia or that early onset forms of these diseases are on the rise or that 1 in 3 seniors die with some form of dementia.

Think about that.

Really think about it.

It is pretty much guaranteed that you or someone you love will be touched by this hellish condition.

But I know statistics and facts don’t move people. Stories do and that’s why I need for you to know my mom and the millions of other people like her who are people, human beings with emotions, likes, and preferences, who are dying a slow and cruel death at the hands of dementia.

Why?

Because if you know her, maybe you’ll vote yes for legislation that provides healthcare to people like her and support for people like me, who care for our loved ones. Maybe you’ll think of her and vote for a candidate with compassionate policies in the next election. Maybe when given the chance you’ll support funding for a cure. And maybe you won’t be one of the people who just fade back into the woodwork when this disease comes calling at your friend or family member’s door.

stigma

Catching up

Hello Internet,

How have you been? It’s been a while since I’ve posted anything new, partly because I have been having weird Chrome issues where my posts disappear and partly because life in Dementialand has jut been rough these past months. Life in general has been a bit rock, especially July/August. We’ve had flat tires, pet deaths, struggling with the possibility of selling my childhood home to move to a quieter, less expensive, more nature filled area. The goal is for deer to visit my yard. It’s a goal I’ve had for a long time, but as with every choice I make these days, it must be approached through the lens of my mom’s illness and what will be least traumatic for her while balancing that with the reality that I still need to have a life and need to think of my own future and happiness as well. Let’s face it, while caring for my mom is what I want to do, I’ve given up a lot to do it. I try not to complain about it, but it is a reality.

As I mentioned, early August was really rough. We had not just one but TWO beloved family pets die. Our sweet muppet-like labradoodle, Teddy, was sudden and unexpected. He was only eight. Our other dog, Baxter, was nearly 16, but is no less missed for having had months to prepare for the impending end. I know some people think they are “just” dogs, but to me they’re family and have been the one thing that makes my life consistently bearable during this really challenging time of caring for my mom. They bring such beauty and joy to life, but holy crap does it hurt when they pass. I spent a week feeling like I’d been gutted, searching what felt like in vain for some crack of light or hope.

I still miss the boys and always will, but it feels like I’m starting to come out of it a little and I’ve come out of it feeling oddly productive, like I want to tie up loose ends and get things done. And that’s a good thing, because I feel like I’ve been operating under the haze of a kind of depression that started back in January or February, when my mom started having some changes in her condition and the doctor said he would recommend not continuing regular testing anymore. She is far from death at this point, but that is one of those milestones that feels like a kick in the gut. It’s a kind of “there’s nothing more we can do, just make her comfortable.” And the truth is that there IS nothing they can do. The treatments we have for dementia at this point are dubious at best. Maybe they slow progression, maybe they don’t and that really sucks.

But I’m starting to feel more myself. I know the wheel will go up and down, because that’s what it does, but we still have to look for those moments of light where we find them.

My why

30712802_10156279637332346_5787613648499245056_nShe is the why for so many of the choices I make and I wouldn’t have it any other way. She is an amazing mom and was always a strong kind, funny, and independent role model who took such good care of me when I was growing up.

She’s always encouraged me whether it was to move away to go to graduate school, explore the world and move around in my 20s and 30s, or go back to school and start a new career when I got laid off in my 40s.

People sometimes act like I’m doing something special in taking care of her now that she’s sick or like I’m doing it for pats on the back and that perplexes me. I mean it’s nice when others see what an awesome human being I am (you can thank my mom for that!), but I really don’t care what anyone else thinks my motivation is.

I do it because she is my mom and I love her. She’s always been my.best friend and I know she’d do this and a thousand times more for me because she already has.

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.