Monthly Archives: April 2017

Special Sunday Message From Dementialand

dementia

First of all, my apologies to subscribers who just received a blog post draft before it was ready to be posted. WordPress makes it easy to post when you don’t intend to. I’ve done it a handful of times since I started this blog, and I always beat myself up about it unnecessarily for days.

The second purpose of this Sunday afternoon message is to let you know I will be speaking in the Quad Cities on Wednesday, May 3. You can learn more here:

http://www.alz.org/greateriowa/documents/DAV_Workshop_Brochure_May_2017.pdf

Special thank you to Jerry Schroeder, who always organizes interesting programs for the Alzheimer’s community. He does all the hard work. All I do is show up and talk. And eat the lunch they give me for free. It’s a match made in heaven.

Sometimes when I speak at a conference I get there 15 minutes before my presentation and hustle back to my car when I’m done. I won’t be doing this on Wednesday. I can’t wait to listen to the other speakers, and I’m not sure I could be more excited about the day.

Have an excellent week, friends!

Dementia and Lady Doctors

dementia

A few words as I wade through all of the questions that were submitted to me upon my request… Be careful what you ask for, right?

I received more questions than I will be able to answer. If your question hasn’t appeared, it’s not because it’s not a good question. In fact, it may be too good of a question. I have looked at quite a few readers questions and thought, “No idea how to tackle that one.”

The question I tackle today is one that has taken me several drafts.

Elaine,

My wife has younger-onset Alzheimer’s and has an appointment coming up at the gynecologist. She goes every year for her check up, but this year I would have to go with her because she has declined a lot and no longer drives. I’m not sure if it’s appropriate for me to go with her or if she should go at all. I don’t know what she’ll say or do during the appointment. Any help is appreciated.

Ed

Well, Ed, let me start with this. I got a text from a friend recently telling me that she was headed to the “lady doctor.” And the “lady doctor” is not called the “lady doctor” because she’s a lady. In fact, sometimes she’s a man. My immediate response, of course, was to express empathy to my friend and wish her well. I could be in an awful fight with a female nemesis I despise, but if she mentioned she was headed to the gynecologist, I would halt all of my hatred for a moment to sympathize. If there’s one thing that brings women together to find common ground, it’s the gyno.

My female health practitioner is wonderful. She’s a great listener. She’s pleasant to be around and has a great sense of humor. Her “bedside manner” is second to none. Do I enjoy seeing her? Nope. Not at all.

My point is that even in the best of circumstances going to the gynecologist is no picnic. And going to the gynecologist isn’t the best of circumstances if you have dementia. It’s anxiety-provoking for most women. It can hell for women with dementia.

When I go to the gynecologist, I understand why I’m there. I understand that this unpleasant procedure is something a health care professional must do to help me take care of my body. But what if I didn’t understand that? How frightening would this process be if I didn’t understand what these people (who I may not be able to identify as medical professionals) were doing and why? Stop and think about that for a moment.

I’m not saying she shouldn’t go. I don’t have enough information to make that decision. And, even if I did, it’s not my decision.

If your wife was having a potential gynecological health issue that was causing her pain and impacting her quality of life, it might be necessary to pursue an exam despite any trauma it may cause. If this is just a routine exam prescribed by standard medical protocol, you may want to more closely consider whether it’s worth subjecting her to the appointment. Obviously, you should allow her to participate in the decision-making as much as possible, but as her Alzheimer’s progresses it becomes more and more your call.

If you do decide to keep the appointment, I might recommend calling the office ahead of time to make sure they are aware of her diagnosis. They might want to allow extra time. I would suggest staying with her–which I would assume might make her less stressed. You could also ask a trusted female friend to take her.

It is sometimes tricky to make decisions about whether people with dementia should pursue “routine” medical tests and appointments. Should Mom get her mammogram? Does Grandpa really need a colonoscopy? And what about the dentist?

If someone with dementia is in pain and we must determine (and hopefully fix) the cause of that pain, we may need to support them in enduring situations that are stressful and confusion at best–and horrifying at worst. We hope that our medical practitioners will be well-versed in dementia and patient with our loved one. Sometimes they are; sometimes they aren’t.

We should also keep in mind that medical appointments typically require us to follow instructions. Turn your head and cough. Put your feet in the stir-ups. Open your mouth. These seemingly simple directions, especially in an unfamiliar environment, can be overwhelming for someone with dementia. And then, of course, there’s the question of what you do with the information you gain from the appointment. If you find a problem, do you treat it? Is it cruel to not treat it? Is it cruel to treat it?

I’m sorry, Ed, that I can’t tell you what to do. What I can do, however, is give you permission to do whatever you think works best for your wife, even if it goes against the recommendations of the medical field.

Fatigue in Dementialand (aka Why the Dementia Brain is So Tired)

alzheimer's, dementia

Today we are back to Q’s and A’s. Today’s question is from Carole…

My husband is very fatigued, and sleeps way more than he used to. There are no medication changes, and he is on the same medications he has been for years (low dose ramipril, Lipitor, and hydrochlorthiazide). If we go for a very short walk, he is “exhausted” and will complain of his leg muscles being sore. All labs are within a normal range. Does anyone know the cause of increased fatigue associated with dementia?

Carole

Dear Carole,

Because I have to do my due diligence, I’ll go through some things that can cause fatigue in someone with dementia–medications (and he might react to some medications differently as he progresses), sleep issues (it’s likely he’s not sleeping as well as he used to), poor nutrition (people with dementia sometimes crave less healthy food like sugary treats), and depression (which is not surprisingly common among those with dementia). Kudos to you for making sure those labs are in the normal range.

But you know what? Even if none of the above factors are in play, dementia makes people tired. In short, it is exhausting to have dementia.

We often look at people with dementia, and it seems like they’re not trying. Let me assure you they are actually working really hard to do things that us folks without dementia do quite effortlessly.

I’m going to give you an analogy here, and it’s a really awful one. I played several sports in high school. I looked pretty athletic. However, I was–and still am–a very slow sprinter. When we ran sprints in sports, I always got in trouble for not hustling. My coaches thought I wasn’t trying when I was running my heart out. I was just really slow. I’d look at my teammates, who were effortlessly running 100 yards in the time it took me to run 60. And it was frustrating as heck. I remember telling a basketball coach in high school, “I know I look fit and it seems like I should be able to run fast, but I’m trying my best and I’m just super slow.”

No, high school basketball and dementia are not the same. Yet we can all think of a time when we were putting a lot of effort into something that was difficult for us (but easy for others) and another person accused us of not trying. It’s maddening.

You probably see where I’m going here. People with dementia are often perceived as not trying when in fact they are working extremely hard. The dementia brain must work constantly to make sense of the world. It is struggling to interpret one’s environment in the way that the non-dementia brain might struggle to understand a calculus problem when one never took a calculus class.

And, Carole, when you mention a walk, I think of all the changing sights, smells, and sounds your husband’s brain must constantly interpret. An effortless chat (on your part) is probably quite challenging for him as he must filter all the stimuli he encounters to focus on your voice and interpret what you say. And that’s tiring.

I have a friend with dementia who told me she’d meet with friends that would say something like, “You don’t seem like you have dementia. You just seem normal.”

What they didn’t realize, she conveyed to me, was how hard her brain was working to carry on a “normal” conversation while they were together–and how tired she would be after their visit. The longer the visit lasted, the less likely she was able to be “normal.” Her brain just got too tired.

(Notice I put “normal” in quotes. I don’t like when we allude to people without dementia as normal and those with dementia as not normal. We’re all weird, anyway. It’s what I like about people.)

Mental energy is a precious resource for all of us, especially those with dementia, and mental energy isn’t independent of physical energy. Think about….When you are mentally exhausted from a long and stressful day at work, it’s hard to get yourself to the gym for a workout.

People with dementia often have high levels of anxiety. Here is the tricky thing about anxiety–being keyed up all the time makes you tired but makes it hard to sleep well. Then you end up exhausted but jittery and tense, which is an uncomfortable feeling that leads to more fatigue and more anxiety.

Sometimes my brain gets tired. Maybe I’ve been grading too long. Maybe I’ve been working on a tedious report for the university. Perhaps I’m looking at data for a research study. My brain, just like every brain, needs a break sometimes. And I can give it a break. In fact, I have to give my brain a break at some point or my productivity suffers.

It’s harder to give the dementia brain a break. I can stop doing something that is mentally strenuous and do something that is mindless. Unfortunately, for someone with dementia, it becomes harder to find something mindless. Even doing something seemingly simple (like watching TV, having a conversation, listening to the birds), isn’t a break for the advanced dementia brain. The person may feel an urge to sleep in an effort to protect their brain from being overwhelmed.

Carole, I hope that’s somewhat helpful. If you ask someone else, they might conceptualize the association between dementia and fatigue differently. My answer, really, is pretty simple.

Your husband is tired because having dementia is tiring.

Elaine

 

 

When Dementialand meets CFland (A Guest Blog from a Friend)

alzheimer's, alzheimers, dementia, dying

Today we take a break from Q’s and their corresponding A’s for a special guest blog post from my thoughtful friend, Drew Dotson. You might remember Drew as the woman who teaches improv classes and helped me see that some of the same skills and perspectives that can be used in improv theater can also be used with individuals who have dementia.

She was also one of my cheerleaders in the early stages of this blog when I was wondering if anyone would even be interested in reading what I had to say. I was surprised when she could relate to some of my blog posts on the basis of her own diagnosis, which is very different from Alzheimer’s and related dementias. 

You see, Drew lives with cystic fibrosis, a disease that now has a median survival rate of about 40 years. My chats with her have made me realize she has a similar challenge to some of my friends living with dementia. How do you enjoy today when you know tomorrow, or the day after, or the day after that, could mean a progression of your disease? How do you live, really live, when you know your “good days” might be limited? How do you appreciate what you’ve got right in front of you when (as Drew puts it) it’s a one-way street heading in the less-than-fortunate direction?

So here is the adorable and incredibly insightful Drew on her thoughts on living in the moment without fear of the future….

I was 8 years old. I went to the doctor for a routine appointment, and I left there a changed person. I guess, by most standards, having cystic fibrosis isn’t routine, but this appointment wasn’t out of the ordinary. CF is a genetic disease primarily affecting the lungs and digestive system due to an excess of thick mucus. I knew I had CF, did breathing treatments every day, took pills to aid in digestion, etc. However, I didn’t realize that CF was anything more than a part of my day-to-day routine.

Then, as my mom stood at the front desk to schedule my next appointment, I browsed the bulletin boards hanging in the clinic. I glanced at a feel-good article about a man who had run a long-distance race, which was “remarkable considering he was 31 years old, which is beyond the life expectancy for someone with cystic fibrosis.” I froze. I reread the line: “beyond the life expectancy for someone with cystic fibrosis.” I began to process. Beyond the life expectancy? At 31 years old? But 31 is so young. And, if 31 is beyond the life expectancy, what is the life expectancy?

Sometimes, in our lives, it can be difficult to pinpoint the exact moment when things change. Some changes happen gradually and, before you know it, things are different. Other times, there is a specific event – a diagnosis, an important loss, surprising news – when you can say, in that moment, “This changes everything.”

Having simply considered CF to be something I handled every day, learning its fatality was heartbreaking. I felt so sad. I felt so hopeless. The third grade should be a happy, carefree time, with homework being the only thing to slow a child down. But I’d learned devastating news that would impact the rest of my life. There was no turning back; there was no undoing it.

From this distinct moment on, I began living a life centered on fear. It may not have always shown outwardly, but it was always there, lingering. I remember crying a lot, particularly at nights, knowing that I would never get to grow old. I had a lot of career aspirations, like most kids, but the future suddenly became a source of anxiety. I should have been looking forward to things, but instead began living with an awful feeling of dread.

This future was always weighing heavily on my heart. The fact of the matter is that CF is progressive. CF is irreversible. CF is fatal. Knowing this information, it’s unrealistic to think, ‘Well, maybe things will get better!’ As blunt as it sounds, it’s a one-way street heading in the less-than-fortunate direction. There may be medical advancements – maybe even a cure one day – but those are the maybes; they aren’t the current reality.

Growing older was always a struggle for me because it brought me closer and closer to the inevitable.  I realized I was more afraid of dying than I was afraid of not living. Yes, I will repeat that. I was more afraid to die than to not live. I was more afraid of the time I wouldn’t have than failing to use the time I did have. I was concerned about being robbed of life instead of appreciating the opportunities right before me.

Yes, CF is progressive. It is irreversible. It is fatal. I couldn’t change any of these things, but I could work to change my perspective. If I focused on the darkest parts – the struggle, the decline, the end – I might miss the sources of light – feeling loved, sharing a laugh, experiencing joy. Although the future carried with it a lot of uncertainty, I could no longer allow myself to overlook the precious moment that is today.

This wasn’t easy. It wasn’t like, ‘Okay, starting tomorrow, I’m going to be grateful. Done.’ It has been a process, and it will continue to be. Each day is different. On days when CF is front and center – like when I’m sick, when I see doctor after doctor, etc. – it can be especially challenging. However, I realized that the end could truly only interfere with the now if I let it. The present is this moment alone. If I can be in a moment without spiraling into thoughts of what used to be or what will come, I can find peace.

Although dementia and CF are not scientifically similar, there are many parallels. We have unpredictable lives due to our conditions. We know we can’t undo the damage that has already been done, but we can hope that things progress slowly and that we’re one of the best-case scenarios. Likewise, we longingly wish for a cure, knowing that we may not benefit from it, but maybe, one day, nobody will go through this.

In Dementialand and CFland alike, the future is a source of anxiety. While we don’t know the exact timeline, we know that there will be a decline. We redefine what “normal” means based on the current situation. We reminisce about how things used to be, and we worry about what things will come to be. The progression, for the most part, is beyond our control. However, we can do our best to keep “the end” from completely overshadowing the beauty in “the now.”

It can be hard to maintain a positive perspective when dealing with so much uncertainty. It takes conscious work, but it can be done. With so many factors beyond our control, the best way we can take charge is by being present. Imagine seeing your loved one with dementia smile and feeling joy rush into your heart. It may not be the smile it used to be. You may have fears of that smile going away. But that smile is still a smile, and it is joyous. When those moments of anxiety begin to creep in, remember that the feelings are only there because you care so deeply about someone. If that thought can be cycled back into something positive – love for someone – then you can resume your time in “the now.”

We may not be able to change the prognosis, but we can keep our focus on the present. By honing in on moments of delight, we can continue to live in the light.

Drew Dotson
To help Drew cure CF, visit: http://fightcf.cff.org/goto/drewdotson.

When You Are Accused of Being a Diva in Dementialand

alzheimer's, alzheimers, caregiver, caregiving, dementia, families

Today is my third (of a still undetermined number) of Q & A’s in Dementialand. Today’s question is from an individual who has been diagnosed with Frontotemporal Dementia.

Dx bvFTD in 2007 (right after I did a kidney donation to a guy in Los Angeles, so it was my last legally sane act…I am so damned blessed).

I’ve been trying to find some information about sensory overload/flooding in FTD but have only found it on sites for autism and TBI. My family, in which there is no discernment between mental illness and organic disease, doesn’t actually believe in FTD and, therefore, I don’t have it, I’m just a diva. I cannot be with them or anyone else for any reason because the effects on my ‘self’ are devastating and sometimes takes days to recover. I didn’t even go to my dad’s funeral. I cannot tolerate someone else’s noise or loud talking; if a child cries I go into a rage. A kid at a museum display knocked into me to get in front and I pushed him right back and told him to STOP. The mother was livid and threatened me; I just looked her in the eye and told her to teach her damn kid about personal space.

All of the above are normal symptoms, I guess, but for the next time I’m told “Why won’t you come? It’s just the family” an article based on science would go a long way in an attempt to explain. I can no longer explain anything anymore (my caregiver is writing this for me based on my babblings).
Thanks so much for any information you can provide.

D

Dear D,

Let me start with this…I did a series of posts on dementia and the senses. Here you go:

Sight: What You See in Dementialand

Hearing: What You Hear in Dementialand

Taste: What You Taste in Dementialand

Touch: What You Touch in Dementialand

Smell: What You Smell in Dementialand

You can email these to your friends and family.  You can send them text links. You can print them out and mail them. You can even read them aloud or deliver them on a silver platter while wearing a tuxedo or ballgown. If I’m being honest, my friend, I don’t think this is going to make a bit of difference.

You see, these people have not yet been responsive to your diagnosis and the changes occurring in your life. They could have googled to learn more about Frontotemporal Dementia. They could have asked you or your caregiver questions. They could have shown an interest in learning how to support you. And they haven’t.

I wish I could tell you the words to say when they are disrespectful and doubtful of your diagnosis to make them understand. I regret to tell you that these words don’t exist.

You are not a diva. You have a disease. It is a real disease; you can “see” the disease at autopsy–and many times on various scans during life. And while most people associate dementia with memory loss, it’s about total brain failure. And sensory overload is a large part of this. In fact, I believe the anxiety caused by sensory overload is one of the least talked about–but most debilitating–aspects of various types of dementia.

The dementia brain works very hard to interpret its surroundings. When it gets tired (which doesn’t take long), the individual with dementia is no longer able to control their emotions and impulses. At this point, the person who has dementia may become irritable and difficult to be around. Or they may shut down completely. We sometimes say they are giving us a hard time, but they are really having a hard time.

You can tell your loved ones this, but I am not convinced it’s going to make a bit of difference. In fact, explaining the symptoms of a disease that they believe doesn’t exist in the first place probably won’t get you too far.

You see, I’m not concerned about them. I’m concerned about you. They may never understand your diagnosis. And I don’t want their ignorance to negatively impact your quality of life. You’ve got enough challenges to navigate. It is not your job to explain your symptoms to them. You have nothing to prove to them. You and your care partner must make choices in your own best interest. If they don’t get it, then they don’t get it. If they call you a diva behind your back (or even to your face), let them. You have limited time and energy. Do not spend it explaining yourself to them.

So why can’t you come when it’s just family? Because you’re not feeling up to it. Because you’re feeling overwhelmed. Because you need a break. Because spending your precious mental energy on being around people who don’t make an effort to understand you just isn’t worth it. I don’t care what you tell them. There’s never going to an explanation that’s good enough–so tell them what you want. And leave it at that.

You have a reason (and a valid one) for not attending your father’s funeral. If people ask, explain it once. If they don’t get it, stop. Just stop explaining yourself. It’s not worth your time, and it’s not worth your limited energy. Walk away, figuratively and literally, from people who question whether you really have a disease. In the best of circumstances, arguing with family is energy-zapping and frustrating as heck. To you, it’s positively toxic.

You ain’t got time for this.