How To Effectively Communicate with Your Loved One Living with Dementia and Tips to Avoid The Pitfalls

Dementia is not a one size fits all type of diagnosis. It is as unique as each of us are. There are many physical similarities from one healthy brain to the next but how the mind function can vary with our upbringing, our experiences, our habits and lifestyle. Add Dementia to the mix and the outcome can vary even more! Dementia is a general term for loss of memory, language, problem-solving and other abilities that are severe enough to interfere with daily life. In more blunt terms it is the beginning of brain death. For some, it is a quick process for others it can happen over the course of a decade. Through my own experience living with it and through reading countless reports of others' experiences I've put together what I've seen as the most common pitfalls when trying to communicate with someone affected by Dementia. My hope is that this will help identify the things that we all do that can make situations more difficult and how to minimize it as much as possible. I know that I did not know what I was getting into and chances are my family didn't either. If I've left anything out that applies to you or your loved one, please comment below.

 1. Cryptic questions: This includes sarcasm, indirect queries and passive aggressive comments. We will simply not understand what you are trying to say. We will most likely assume we have done something wrong but will not know what it is. This will agitate, irritate or outright infuriate us. Asking a simple question such as, "Were you doing laundry yesterday?' seems harmless right? But to us, it starts us down the rabbit hole of wondering what we forgot, what we spilled or possibly ruined. That's just the way our minds work! I would suggest asking direct questions, make statements and ask for any clarification that you need. For example, "I noticed that the clothes were in the washer, the laundry soap bottle was open and the laundry door was open. Can I help you finish the laundry?" We may still get embarrassed, cry, get angry, refuse any help or deny we touched anything. Or we may simply say, "Yes." The difference is that we now have a complete picture of what you're referring to so your question and your intent is clear. Keep in mind how we respond will vary from hour to hour and day to day. And as our comprehension abilities lessen the questions will need to be simplified or not asked altogether. Once it gets to that point, it is left to you as our caretaker to use your best judgement and complete whatever task was left undone or done incorrectly.

2. Firing off multiple thoughts or questions: As a general rule, once we've gotten a medical diagnosis of Dementia it is fair to assume our processing speed has slowed down. We no longer have the ability to take in complex information quickly. We can not retain and then redirect information from topic to topic and keep track. Some of us will try to hide this, some of us simply zone out and some get angry. Or we may do all of the above on any given day. Try to keep the questions to a minimum, wait for complete answers to be given before asking another question. If we are focused on a task, please wait until we have completed it before asking. Please keep statements simple and to the point. If you start firing off things like, "Sue was doing this and then Mary said that and Tom went over and started bringing up this..." Trust me, we are no longer tuned in. It's not that we don't care, we just can't keep up. I would suggest, "Sue was whining about the food again. It was embarrassing." If we are still following along then keep going. If we ask who Sue is then you will have to give us cues to remind us and may have to repeat the entire first statement again. Please try to be patient, we do not like the fact that we can't remember any more than you do. But we are doing the best we can.

3. Plans, Plans, Plans: Personally speaking, there is nothing more overwhelming or anxiety triggering than hearing about my, our or your plans. I don't know why but it evokes extremely strong reactions from me. Once someone starts listing off all the things they or we have to do that day, week or month I look for the nearest exit. I highly recommend waiting until the day the appointment or event is to occur to bring it up and ask if we feel up to it. This allows us to decide in that moment on that day if we can handle the situation. If we say, "No." Please respect it and move on. I guarantee that if you ask me if I want to go swimming next week on Saturday I will automatically panic and say, "No." But, if I'm having a good day and you ask, "Would you like to go swimming with me today?" I will most likely say, "Yes."

4. Starting a sentence with "Do you Remember?": Nothing makes me want to roll my eyes farther back in my head than this question. I wish I could erase it from existence! Instead of asking your loved one if they remember, simply turn it to yourself and say, "I remember the time you or we did this and I felt...." That's it. We may not remember but we will appreciate that you did and enjoy hearing how you felt. Try to keep these memories positive. Negative emotions do us more harm. Please be kind. We may have hurt you, embarrassed you or acted inappropriately but it will not help anyone to remind us of it now. Also, if we remember something incorrectly, just roll with it. We won't always recall things correctly and no matter how many times you tell us we will still not retain this new information. I would suggest acknowledging our statement, redirecting and moving on to something else.

5. Overstimulation: As our brains deteriorate, so does our tolerance for stimuli. This includes loud noises, multiple people talking at once, music or tv playing while people, cars go by or just a lot of activity happening at the same time. I would suggest keeping this to a minimum. Look for and recognize the signs of us getting agitated, zoning out, anxious or overwhelmed. If you notice any of these reactions take immediate action to remove us from the situation. Please do not ask us questions, just gently guide us to a more quiet spot or take us home. 

6. Choices, Choices, Choices: Another anxiety inducing thing for us is being given multiple choices. Whether it be what show to watch, what food to eat or where to go. Again, keep it to a minimum of two. If we still can't decide then decide for us. This may go against what you've previously experienced with us when we were fully capable of making decisions. It will feel controlling or seem that way to others but I can tell you honestly that we don't really have strong convictions at this point and just appreciate that you are taking care of us. We just don't have the ability for initiative or decision making any longer.

7. Shame: This should go without saying, but you'd be surprised how many times I've read that loved ones are shamed for forgetting events, misplacing items or doing things that are considered socially inappropriate. Yes, it can be frustrating that you took time off work to take your loved one to an appointment and you find them still in bed with no idea they told you yesterday they'd be ready. Getting angry and shaming them for wasting your time or money will only make matters worse. We are no longer aware of social norms, political correctness and the effects of our behavior. We can no longer adapt to this world, it is now up to you to adapt your expectations to our world. No one says this disease is easy. 

8. Assuming that today will be like yesterday: Our days vary on any given day or time. We may filled with piss and vinegar in the morning but be laughing by afternoon and back again by evening. The brain is continually misfiring and we are subject to that. SO just because we had a great day yesterday and went for a walk or watched a movie does not guarantee we will do the same tomorrow. In my experience, if I have had an outing or did something that was exhausting the day before the chances are high that the next few days I will want to lay low and be left alone. I've just tapped my mental, physical or emotional reserve and it will take a few days to recharge. This will be especially true if I'm fighting any type of cold or illness, which is more likely than not at this stage of our disease.

9. Helicopter care: As caretakers, you worry about us, fret over our safety and would love nothing more than to help us with everything to make our lives easier. For those of us still semi-independent it can become frustrating or demeaning if you state your doubts of our ability to do something, hover over us as we try to complete a task or simply take over if we drop something or make a mess. Please allow us to try, if we become agitated, distressed or fall then it is time to step in and try to assist, redirect, reassure or guide us to a quiet place.

10. Telling us what we can't or shouldn't do: For the most part we already know what we can't do, we have probably been hiding it from you for months for fear of losing independence or embarrassment. I ask that you let us try to do whatever it is we're trying to do if it doesn't endanger us or anyone else. Reminding us that it is not safe or acceptable does not curb our impulse to do it. If it is harmless, just let us carry on and try not to get annoyed with us. The saying, "We won't remember what you said but we will remember how you made us feel." has never been more true than when living with Dementia.

This is just a short list of the most common things I've experienced or heard from others living with Dementia or caring for someone with it. I hope it helps alleviate or avoid some pitfalls that we encounter in this difficult journey. There is no guarantee how your loved one will respond to the suggestions I've listed but I hope it's given some insight and a starting point on how to effectively communicate with those of us living with Dementia. Thank you for caring for us. We need and appreciate you even if we can't show or express it anymore. <3

Final Diagnosis. Who am I now?

There is a great danger in assigning who we are to what we do.
What we accomplish. What our profession is, what our successes are and even
what we fail at. I am now living proof of that. My entire life was geared toward
what I do. What I accomplish. What I am going to achieve.
There was always that unspoken feeling of not being enough by 'just being'.
So from an early age of 12, I started to push myself to my limits. I decided I didn't earn the
privilege of eating so I assigned myself goals to earn it. I could eat one cookie
if I ran around the block a certain number of times. I could have french fries if I did
100 sit ups. I could watch a movie if I reached a certain weight on my bench press.
I didn't feel worthy enough to allow myself to have these simple luxuries unless
I did something to earn it. I eventually channeled that type of thinking in my
career aspirations. I would set a goal and not feel worth anything until I accomplished
it. Some saw this as being driven. In a way that was correct. But when you're driven and
don't feel valuable until or unless you succeed that is a dangerous tightrope to walk.
What I didn't know 45 years ago that I know now is I've been walking around
with a brain that wasn't formed correctly from the start. I didn't know that it was
just a matter of time before the rug would be pulled out from underneath me. I would
no longer be the person I was nor would I be capable of achieving what used to come
naturally. To a person that has identified themselves by what they accomplish,
hearing the words 'Major Neurocognitive Disorder' from a Psychologist is devastating.
I walked around in a daze for a couple of weeks. I went through the stages of grief-
denial, anger, apathy, sadness and I'd like to say I'm at acceptance but I don't think
I am there yet. I am breathing. I am getting out of bed, getting dressed and trying
to be ok with my new normal. I've felt the way I do now for a year at least but now
it has a label. Now the thing I have been feeling is undeniable. It has been exposed,
I have been exposed. The world now sees. So who am I now?
I don't have that answer yet.
I had a conversation with my step son today. He told me that when he first met
me 4 years ago, he didn't think I was capable of much. (Gotta love the honesty of an
8 year old) He continued to say that hearing stories of what I accomplished in the past
has surprised him and changed his view of me. He says that I am stronger than he thought
I was in the beginning. This prompted me to tell him more stories and reminisce of things
I have achieved. But then, I go into a room where it's quiet and the voice inside me asks,
"Who are you now?"
I am a woman that was born with a damaged brain. I am a woman that was born with
fetal alcohol syndrome, hydrocephalus, brain atrophy and a partial corpus collasum and
I survived. I made it through birth, infancy, the terrible twos, teenage angst, tumultuous
adulthood to a half of a century. I am no longer wheelchair bound, I am not bed bound as before, I am
not comatose, I am not in a vegetative state.
I am that once in a life time type of miracle.
So now, when I think of all that I have accomplished,
I realize that sometimes 'just being'
really is enough.

Isn't there a little Joker in all of us?

If you've followed my experiences on social media up till now, you've only seen what I wanted you to see. It's what we all do. Post the pictures where we look the most put together, the happiest. I came by it honestly, my mom would refuse to smile for that polaroid camera if she had rollers in her hair, bathrobe on and no make up. The I just woke up leave me alone face. I may or may not have snuck a couple of photos of her anyway. She can't ground me now. I'm sure my daughter has a stash of hidden videos and photos that she's snuck of me. I can't ground her now either! We're trapped in a world that is captivated by or rather, obsessed with perfection. What's considered beautiful or fashionable is in next months magazine or Instagram filtered photos. None of it's real. I loved the most recent post of Jennifer Aniston showing what she looked like before the cameras turned on. It was a tiny glimpse of reality and I loved it. But nothing I've watched portrayed today's society better than Joker. Joaquin Phoenix blew my mind. He embodied Arthur in a way I never thought possible. His reality is terrifying, unpredictable and honestly one of the most powerful things I've ever witnessed. All that raw, vulnerable, ugliness poured out before my eyes for complete judgement. I couldn't look away even if I wanted to. For the first time I felt there was something out there that really got it right. Not in the comic book correctness kind of way but the human way. The real truth of living in an ugly world and trying to pretend it's beautiful. The absolute magnificent feeling of looking around and finally seeing a world that you relate to. To be accepted for all your flaws, deviant behavior and warped personality.
I can't think of anything more beautiful than that.

So what didn't I show you? The part I was taught noone wanted to see or even worse, would make them reject me. It would take a book to explain all of it but for the purpose of this post I'll share a few things. The first memory that comes to mind is the moment I realized that Hydrocephalus was going to be the death of me. Quite literally. I was sitting in the passenger seat and my head suddenly felt like it was going to roll off my shoulders. Like a bobble head figurine of some sort. I had never experienced anything like it before or since. When I went to say something about it I couldn't speak. I knew what I wanted to say but I couldn't get my vocal cords to utter a word. No sound came out. I was for lack of better explanation, mute. There are no photos to reflect the utter terror I felt in that moment. Breathing soon became difficult as well. I remember trying to analyze myself, is this a panic attack? An allergic reaction to something? What is happening to me? The person driving made the executive decision to take me to the ER. Imagine that missed photo opportunity!? Watching the
DRs face as they come in after reviewing one of my CT scans has become an inside joke in my family. It's always the same. They come in looking skeptical of any real emergency, order CTs and afterwards come in with a whole different demeanor. This night in particular, it went the same but they added that I needed to go to Utah immediately. That was a plot twist I didn't see coming.

Hydrocelphalus...what's the big deal?

If you're like me, you hear the word Hydrocephalus for the first time and don't think much of it. 
It sounds like a pretty innocus thing doesn't it? I often wonder how many people are walking around
right now that have no idea they have it. That headache that is eased with medication. The blurry
vision that seems to improve with glasses. Looking back, I can remember those things. Chalking it up to 
too much time at the computer, working too many hours or too much stress. Not that those things weren't
fairly accurate. Like most things, if we aren't affected by it or know someone that is we will most likely 
hear the word Hydrocephalus and brush it off. I know I did. The first time I heard the word, before it wreaked 
havoc in my life, I was in my early 30s. I couldn't get my headaches under control and went to a Neurologist with
my mom. The Dr came in after reviewing my scans and mentioned Hydro something then carried on to say it was most likely a result of a deformity from Fetal Alcohol Syndrome. I remember looking at my mom and wondering what she was thinking. She sat silent. The Dr recommended shots in my neck to ease muscle tension once a week and we proceeded from there. I completed the treatment, the Dr moved out of the area and I never thought twice about that appointment. How I wish I'd asked more questions then. I would have been more prepared for where I'd find myself a decade later. I could have had more in depth and honest conversations with my mom. But I chose not to. I was busy. I had two kids, a stressful job, a failing marriage. I didn't have time to think about things that had no bearing on my life. Or so I thought. 
What I would tell someone hearing that word for the first time now is this; Hydrocephalus can not be cured. It means that the cerebral fluid is not properly draining from your brain and is causing the ventricles to expand. If left untreated it is fatal. There are several different types, causes and outcomes. There are two surgeries currently available to manage the continual build up of Cererbral Spinal Fluid in the brain. One is a shunt and the other, which I was fortunate to have, is an ETV (Endoscopic Third Ventriculostomy). Neither surgery is without risk, complications and potential life long side effects. But hey, it's better than the alternative.  As my dad would say,
"Every day on this side of the grass is a good day!"

Introducing...my rebel brain

Photo Credit:Brian Smyer

In the past, I approached each challenge with a furious optimism that I would be able to overcome it.  A certain arrogance that I was strong enough to outwit any obstacle that was thrown at me.I look back at my 41 year-old self and would love to pat her on the head and laugh. If only I'd known what was going to come my way. Maybe it's a good thing that I didn't. I'm not sure who would willingly sign up for this. Which reminds me of a conversation with someone who believes that before we're brought into the physical world we volunteer and sign a contract for the struggles we will face in our lives. If that's true, I have some serious questions for my spirit and the contract holder. I mean, come on. What was I thinking?
Seriously though, I've learned more about the human brain in the last 7 years than anyone without a medical degree should ever want to know. It's been quite the emotional rollercoaster.
 I was diagnosed in 2012 with Hydrocephalus after waking up one day unable to walk or put a sentence together. I'd had some hints that something wasn't right for months leading up to this but as is typical for most, I just powered through. Took the anti-anxiety meds for the unbearable anxiety stalking me, the blood pressure meds for an unexplained spike of my blood pressure, and ibuprofen for a headache that I just couldn't shake. It was the beginning of a journey that I never imagined. After a 4 day stint in the hospital with a diagnosis of Hydrocephalus, it was a whirlwind of CTs, MRIs, Occupational and Speech Therapy, applying for short term disability, informing my job that I may not return and adjusting to a life I didn't fully comprehend. Everything was exhausting. The basic daily things were difficult, if not impossible. And the pain...the most incredible vice grip pain in my head that never relented. As things progressed, the pain was accompanied by sharp stabbing pains through my brain that would bring me to my knees. I lived with no further answers and slowly deteriorated over the next year, eventually becoming bed bound and being pushed in a wheelchair for doctors appointments or the few social events I attended. My short-term disability became long term. I signed POA to others as I was no longer able to think clearly or make my own decisions. I was facing my demise and no longer had enough energy to even grasp the magnitude of it.