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.

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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

Today is one of those days where I am really happy my parents taught me to be resourceful, because living with dementia sure does throw you into some weird situations. It is a beautiful day out, so we were planning to go out to do some errands and for a drive once I was done working.

Half the day went pretty well and then my mom started becoming restless and then increasingly pissed off that we weren’t leaving yet. Dementia has left her with no patience and when she gets an idea in her head, she wants it NOW.

As a result, her response to being asked to wait a bit was to go dink around with the front door. We have a wonderful chain on it that only opens with a key, which normally keeps her from doing much damage beyond opening the front door a crack. The thing is that the door knob needs replacing. I’m not sure if the threads on the screws are worn or what, but the inside part of it falls off if you jiggle it long enough and since she was miffed, she jiggled it not only long enough, but hard.

When it came off, she threw it on the floor and then proceeded to shove the outer end of it out onto the ground outside before emphatically slamming the door before retreating to her recliner to aggressively recite the Lord’s Prayer in German and occasionally shriek “help me, I’m living with a crazy woman, who won’t open the door” and call me names and tell me I belong in prison, which is something she does now when she’s angry.

In her head, it’s a normal response to not getting her way. In mine it makes me think that if there’s anything that is going to make me want to take her out in public, even if she can’t help it, it’s not going to be throwing a tantrum and acting like a complete nutter.

Anyway, the net result is she is now angry, for a while we couldn’t get out of the house, because we couldn’t open the door anymore, and I’m really not feeling interested in being in the same room with her let alone going out with her. Maybe there was a time when I would have panicked, but these days it’s just a normal Friday in Dementialand.

At some point, enough they do enough weird things that you just become resigned to it. Sometimes they’re harmless, sometimes they’re a big pain in the ass, but you figure it out and learn to manage without calling someone every time something goes wrong.

For a minute or two, I have to admit, I was stumped. We have 6′ fencing in the back yard, but there are also padlocks on the back gates to keep her safe in the yard when she wants to be outside. Unfortunately, she hid my date book, which contains the combination and I’m not wildly inclined to scale the fence, if I don’t have to.

There’s always climbing out a window, but then I have to find a way to climb back in, if I can’t fix the knob from the outside. Finally, I remembered the garage door, so I waited until she was relatively calm and snuck out and managed to put it all back together. The door knob still needs to be replaced — maybe with a key lock, I don’t know. I hate feeling like I’m living in a prison, but that’s just one more face to life in Dementialand.

About work

Tell me again how being a stay-at-home caregiver and trying to build a business of my own isn’t work. (I’ve actually had people tell me I am “lucky” I don’t do “real” work.)

I could stay busy all day just on her, but that’s not really an option. I am fortunate that my mom is still well enough that I *can* work, even if it’s just when she’s asleep, but anyone who thinks adding building a business or even working for someone else onto the demands of caregiving is out of their tree. The reality is that caregiving alone is a full-time job, if your charge needs 24/7 supervision or care.

The truth is that, when I can create space for it, I LOVE the work I do and I love the people I do it with. It gives me a creative outlet that allows me to hold onto myself, the real Martina from before FTD took over her life, at a time when I see many caregivers losing their sense of identity. I am grateful that I have so far been able to retain my own. Maybe I’m just stubborn or maybe I’m adaptable, but I refuse to lose mine, even if it means working at weird hours.

That said, all of it together is a lot, especially on the bad days.

It is also true that I’ve spent my whole retirement on care for my mom and that if I didn’t work, big parts of her care (you know, little luxuries like food, shelter, and electricity) wouldn’t be covered. If I worked a traditional job, I’d be spending at least half my pay on caregiving (and that’s only if I scrimped and underpaid some desperate, cheap caregiver, who would even accept those rates).

This country is simply not equipped for the reality that faces families with a loved one, who requires 24/7 care. And I’m not just talking about families living with dementia either, but any of the many conditions that require a dedicated caregiver. I cannot tell you how many people I’ve met on this journey who, like me, are doing this alone. And, believe me, it is tiring.

After a long day that included working with clients, writing copy, attending an online training (that was fun…I should call the Guinness world record people. I don’t think the words “Not now. I will do it for you when this is over” have been repeated that many times in 90 minutes EVER), figuring out how to unlock the bathroom door after my mom locked us out and undid the precaution I’d MacGyvered to keep her from doing it in the first place, and starting work on an editing project for another client. In between all that, I did laundry, cleaned up, took care of my mom’s needs as they came up, and made soup.

So, yes, tell me again, how I don’t have a “real job”…

No more Cordon Blah

We have always loved food in my house and, thankfully, my mom has not reached the stage of her illness, where she doesn’t want to eat. In the past, we ate out a lot, but between my mom’s stamina not being what it used to be, trying to be better budgeters and wanting to focus on brain and heart healthy meals, we’ve been eating in a lot more.

It’s actually turned out to be pretty great, because I’ve rediscovered my love of cooking and trying new recipes I used to do that a lot, but somewhere along the line when I was working a corporate job with heinous hours, I stopped and we started going out and eating blah convenience foods more and more. Because my mom is German and I actually like having my bigger meal earlier in the day, we’ve adopted a semi-German way of eating, where we usually eat our big meal at noon, then have something lighter in the evenings. I find that it gives me a lot more energy for the day and I snack less, which is helps with my lifelong Battle of the Bulge.

Image from: https://www.tasteaholics.com/recipes/breakfast-recipes/avocado-toad-in-the-hole/?fbclid=IwAR0KRNt9_D8TcIAF2AI9Ej0CeDnDZi2np5c6fGCl4rKdliCPtJGHwLY0sbs

Today, we had an experimental breakfast, which turned out to be pretty good — Low-Carb Toad in a Hole. Instead of frying your egg in bread, you bake it in an avocado with salt and garlic and cheese. It was pretty tasty. We had ours with a side of berries, which made for a really brain healthy  way to start the day. With my mom’s illness having a genetic component, that is something that is becoming more and more important to me as I level up. I’ve got a big birthday coming up in March and want to keep my mind sharp for not just as long as I can, but forever. Having seen my mom’s illness up close, it’s not something I’d wish on my worst enemy, let alone myself. You can’t go through life thinking the worst is going to happen, but you can make good choices and I am doing my best with mine.

Releasing

Last night was the full moon. In the tradition I follow, it is a time for healing and releasing and, boy, do I need a lot of that right now. I’ve been really depressed lately,  which is par for the course. Caregiver depression is not uncommon and I’m certainly experiencing a lot of the symptoms. It drives me crazy, though. I am usually a pretty resilient, glass half full kind of gal, but lately I just feel a combination of sad, sometimes hopeless, and angry at nothing in particular. So much these days feels out of my control. While I am committed to and want to take care of my mom, there are times when it feels like I am growing old while life passes by, even though when I look at it objectively, all things considered, I’ve managed to hold onto a lot more of life than a lot of caregivers manage.

I am taking care of my mom alone 24/7 with no breaks, yet somehow I have managed to build a very modest business that allows me to do creative things I really love doing and that allows me to work with with clients I really like as people, even if I can only devote myself to it part-time right now. I have really good friends, who are there for me when I need them (and even when I don’t and even though I am not presently able to give back to them at anywhere near the level they give to me). We occasionally get out, albeit not as often as we used to. I have food, shelter, and pets that make me crazy, but that I love as fiercely as any family (because they are family). My mom is still around. At this point, while her short-term memory is never great, the less pleasant parts of her FTD are like storm clouds passing through and we can still have conversations.

That alone is a huge improvement from the situation nine months or so ago. It’s interesting, actually, that all the behavioral things evaporated almost immediately when I pulled her out of adult daycare. Even though she enjoyed it in the beginning, she seems much happier just being home with me than she was at the end. That is an aside, but the point is it’s not that I don’t have a lot to be grateful for, because I do.

But there is a lot to be sad about. I don’t feel sad most of the time, but sometimes it’s like it banks up and then I start feeling like I do now and working desperately to pull myself out of it, because I know if I let it get out of control, it will paralyze me and that would be disaster. That’s why I love the full moon it’s a monthly time to release and recalibrate and that makes me feel better. It’s amazing how much better I feel after doing some work for myself and others last night. Everything is not perfect and it will take some time to pull myself out, but I feel like I can breathe again, which is not something I was feeling when I made my post on Thursday.