Daughters of Dementia – book

Introducing a lovely book written by Leslie Birkland, and Lindsey Denhof, who are sisters who felt compelled to share personal and revealing stories about their father as he fell deeper and deeper into the tragic memory robbing abyss called Dementia. The two sisters narrate their experiences born from different perspectives, but very much driven from the same heart.

dementia

 

Please enjoy and comment. Dementia is everywhere. It affects all of us. Whether we have  a parent, a spouse, a friend, or a neighbor with dementia, we are affected. Even if a community member is suffering from this, known or unknown, we are affected, although to differing degrees.

Dementia worldwide is estimated at 47 million and is projected to increase to 75 million by 2030. It is a huge economic impact – in the US, $818 billion dollars a year. People with dementia and those with family members with dementia are often discriminated against. Awareness and advocacy are needed. Dementia is a public health priority. Let us know where you stand. Thank you for reading.

Self-care tip: Everyone has a story. Tell yours.

Keep on!

Family is Family

Family is Family

She must be in her mid-thirties, I thought. Kids – it looks like she has kids. She was well dressed, with a pleasant, kind face. Everyday Mom – a person who is easy to like, a person next door who everyone wants to be friends with.

Just right now though, she was spouting angrily, full of righteous indignation.

“And just to think that they could have easily killed him, I just could not believe it.” Her eyes were flashing. “I told them right then and there, I will never take him back to this doctor. He almost died and ended up in the intensive care for DAYS!”

The reason for the outpouring, my new patient, was sitting quietly, fondly looking on as she continued. He looked to be around eighty, which I knew was about 10 years more than his actual age. Recently diagnosed heart failure, stroke last year – this would make anyone look older.

The daughter was at the end of her rant. “So, we just decided to come straight here and find another cardiologist.” She pulled out a large binder. “Here are all his records – we want you to take over now.”

Usually I try to be understanding of my own profession and not be quick to join in the blame game. After reviewing these records, however, it was difficult not to be blunt in my judgment. Her father’s case had indeed been poorly handled – he was prescribed two medications at the same time with predictable life-threatening interactive side effects. His daughter’s diligence likely saved his life – when his mind started slipping, she had checked his blood pressure, found it extremely low, and immediately called for help.

After some painful experiences in my career, I had learned that instead of pronouncing judgment, it was best to find things to praise.

“You are quite lucky to have such a devoted daughter, sir,” I remarked. “If you are not aware, I can tell you – research shows that men with daughters live longer, so you have an edge there.”

The patient smiled. His daughter looked pleased.

*************

As I was going through his medical records, I was relieved that this new patient had been scheduled into an hour-long slot – there was a lot to cover. Making notations in the chart, I asked follow-up questions – what other medical problems he had, what were his habits, when was he first diagnosed with heart disease. The daughter answered most of the questions – not unusual when the patient is elderly; younger people tend to have better memories.

Working through the records, I noticed a condition the daughter had not mentioned.

“So, the prostate cancer – when did you have that?” The daughter looked confused for a moment and then turned to the older man. “When was that, Dad? This must have been a long time before I met you.” They started discussing the possible dates – the patient did not have the best memory.

This snippet in the conversation caught me off guard. First I thought I had misheard the word ‘met’. Surely one would not use that word for one’s own father? Should I ask? Social history is an important part of the medical exam. Also – let’s face it – I was curious.

“That was an unusual word choice,” I started carefully. “So, I assume you are adopted then?”

“Oh no,” the woman answered cheerfully. “As biological as can be.”

The utter confusion must have shown on my face. She decided to have pity on me.

“Well, of course, I didn’t know who he was.”

…. That did not make things any clearer.

“My Mom refused to tell me who my real father was – so after she died, I started looking for him. Went through as many genetic tests as I could – and I finally found him!”

There was an unmistakable triumphant note in her voice.

The patient just smiled and continued looking at her fondly.

She went on. “So, then I asked him to come visit us last year. That’s when he had the stroke. Of course he would be better off here, so I just asked him to stay and he lives with us now.”

I tried not to react. To be perfectly honest, I wasn’t sure how one would react. The commitment she described was flabbergasting… and to a father who had never been in a picture. This woman had taken a virtual stranger into her home and into her life and acted not only as a forgiving daughter but as a caregiver to an elderly man with multiple medical problems.

“Family is family,” she announced. “I am so happy I could finally be with my Dad.”

*************

I must confess that there was a small suspicious part of me wondering if she will stick to it. The old man was not healthy and with the recent stroke needed a lot of help. After the initial euphoria of having a father wore off, would she think it too much?

On the next scheduled visit, the daughter was there, with the same updated binder. The father was looking better – the combination of optimized medications and stable home care had done wonders for his health.

On the visit after, the granddaughter had joined them. She was a bright-eyed little thing, curious about everything and intently looking at her new grandfather’s heart pumping on the ultrasound screen I was showing them. The daughter was making notes about medication changes. While I talked to the her about the home care, the granddaughter was trying to talk the grandfather into playing a game once they got home. The whole visit had an atmosphere of care and contentment.

*************

I never asked more questions about their history. Why had the mother refused to talk about the father? What skeletons were in that family’s closet?

She probably would have told me. But it was not my place to ask. As a physician, I was happy enough that my patient had good social support.

Family is family. In this case, family that almost wasn’t.

 

 

False Thoughts about Getting Healthy

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Think of walking in a rainstorm. Your clothes and hair hang heavily. They provide no protection. They offer no remedy. You take a hand towel out of your bag and try to mop up your icy wet face. Wring it out and continue to wipe. 

This is like choosing to do all the psychosocial efforts in your life, but missing the biological. Until you treat the underlying illness, much of our efforts to heal are like using a hand towel to dry off in the rain storm. We think that we can get better without medication. Or, we may reject other treatment options, like ECT or TMS. We think false thoughts. 

It’s not healthy to take pills. 

I’m better than that. 

All I need is God. 

My parents would be upset, so I shouldn’t. 

If my work found out, I’d lose my job. So I shouldn’t. 

THC is better. 

Exercise is better. 

Some of these are entirely false. But some are just partly false, encased in a disconnected truth. This “rain and the hand towel” idea is not an analogy meant to minimize or bring shame to those who choose not to engage in treatment. It is not meant to talk down. Please forgive me for the crudeness and limitations. It is just meant to crack open this idea.

Yesterday, Louise commented that her physician told her taking sertraline, or Zoloft, was like taking “a vitamin for my brain”. That clicked for her! Vitamins were ok.

Question: How has your physician helped you get past not wanting to take treatment? How could your provider do better with this?

Self-care Tip: Allow healing with medical treatment for medical disease.

Get You Some of That – Medical Treatment for Medical Illness

…Continued from yesterday.

Cole_liveCole Swindell – Get Me Some Of That

Why do I feel so horrible when I start a treatment that is supposed to help?

Medication treatments for depression and anxiety, and some other brain illnesses, often worsen how you feel before you feel better. I can’t tell you how many patients have told me that if they had known this before, they never would have stopped their mediation(s).


Yesterday, our post discussed a Dr. Jones and Presley.

Presley fired Dr. Jones when after following her directive, he subsequently experienced an extreme panic attack. Dr. Jones may not have done anything wrong in her treatment recommendations. Presley was just an individual, as compared to a “number on the curve” of treatment responders. Escitalopram, the medication discussed as an example yesterday, (one medication option out of many), may have been dosed at an initial amount that Presley’s body couldn’t handle “straight out of the gait”, so to speak. But likely, if he had started at a lower dose, maybe ½ or even ¼ of the tablet, and then waited for his body to accommodate to the medication. Then Presley would have tolerated it. Presley would have tolerated slowly increasing the medication if approached, rather, piece-by-piece of a pill. I’ll even joke with patients,

I don’t care if you lick the pill. Just get on it.

When slowly titrating a medication, it allows the individual’s neurotransmitter receptors to down-regulate whilst the agent floods the receptors. If there is a neuron targeting another neuron, there’s a baseline balance in time. There is a baseline understanding between these neurons. An agreement, of sorts. “I’ll sit here and receive your messages,” (neurotransmitters, or chemical messengers such as serotonin, norepinephrine, and/or dopamine). “I’ll then carry those messages on your behalf to their intended recipients,” (such as the amygdala or hippocampus). But then this person artificially takes a higher quantity of these messengers, for example, by way of medications, and floods the system. The receivers, (or neuroreceptors), have to adjust to this to establish a new healthy baseline. 

In this initial time of treatment, when 1st introduced to the increased neurotransmitter-load, (ex: as released by a tablet of Escitalopram), there can be a negative response, such as panic and/or depression emotions. We call this, “initiation side effect’s.” Once the neuroreceptors get used to the new load, then the response improves. 

After accommodating to the new pharmacology, the brain is allowed to experience the blessing that comes from treatments, and heal.

Some individuals are outside of the curve and cannot tolerate the standard initial treatment dosage, like Presley was. Some are inside, and can without much difficulty. The point in treatment, though, is that the person just needs to get on it.

Get on treatment. However you do it. You have to make the treatment work for you, an individual, in your own way. The prescriptions are there to serve you. You aren’t there to serve the medications. I like to analogize Jesus’ statement,

The Sabbath is there for man, not man for the Sabbath.

Make it yours as an individual and reap the benefits; the blessings inherent there. (See Mark 2:27). 

If you don’t get on the treatment, you won’t get better. Anything less than this will be inadequate. It’s like drying water off your face with a hand towel while still walking in a rainstorm.

What is your agenda in treatment? List it. Write it out. Then, go get you some!

Outside a medical approach is like flicking water off in the context of a rainstorm. If your agenda is getting to your healthy self. Get out of the storm and get dry. Then go get it. 

You have a medical condition. Treat it with the assistance of a medical professional. 

I don’t go to a plumber to help with my electrical home repair. I don’t go to an accountant or a church counselor to treat a medical one. 

The plumber, the accountant, the church counselor are what they are. This is not minimizing their efficiency in their own fields of excellence. But why do we seek care in psychiatry from those who haven’t studied this? From those who are not experts in this? Maybe stigma keeps us away from psychiatric care. Maybe misinformation directs our search for mental health treatment elsewhere. 

Self-Care Tip: Get you some medical therapy for medical illness.

Question: What are further concerns you may have about taking medications? How would you prefer your medical providers to work with you? Please tell us your story. 

But I’m Not Someone Who Likes Taking Meds

pill

Presley couldn’t breath. A truck just drove through his thorax. A monster-hand was closing around his heart. He couldn’t swallow well. Was something stuck in there? Dizziness nearly dropped him, but instead of moving to sit down, like any other normal person would do, he bolted. A fire chased him. He had to escape or he would die. In the bathroom where he found himself, the mirror reflected a sweaty face and crazy eyes. Was he dying? Presley’s phone looked blurry as he dialed, 911.

Please help! I’m having a heart attack!

That was the first time this had happened. After the third visit to the emergency room over the past month, Presley was able to avoid calling 911, although still convinced he was going to die when the next episode hit. He agreed to seek counseling, where he was taught different skills to connect his mind and body, to slow his breathing down, to process, even when he was convinced he was dying.  For a time, Presley improved. It was like it never happened. He was almost able to convince himself that it wouldn’t happen again.

This turned over and over, feeling like he was going to die while losing his mind, re-engaging in counseling, thinking he was better, stopping counseling, and then another violent emotional event, thinking for sure, he would die.

It was after his second trip to the ER when he received the recommendation to schedule an evaluation with a psychiatrist. But he preferred to work through this in therapy. Presley didn’t like pills. He wasn’t someone who medicated. An olive-skinned athlete, he lived clean and didn’t believe there was much that healthy living couldn’t cure. And Presley did live clean. He ran fifty miles a week. He ate raw foods. He read his Bible.

After several months of this, his therapist, Dr. Wu, recommended he get a psychiatric evaluation. However, Dr. Wu agreed that he would continue to work with him, whatever Presley chose. (Was this the right thing for Dr Wu to do?) Presley chose, no. No psychiatrist. What would a psychiatrist do to him anyway?! He wasn’t crazy. (Except when he thought he was.)

Presley visited his primary medical physician, Dr. Belinda Jones. It had to be better than seeing a shrink!

Dr. Jones, I don’t want to take meds.

Dr. Jones, cleared him for any medical condition that might be contributing to his events. Only then was she able to convince him to try a “safe antidepressant”, escitalopram. After one pill, Presley had the worst event of his life. He’d never had any experience that was more terrifying. Presley didn’t go back to Dr. Jones, “of course.”

When these emotional tornadoes hit more frequently, he became paralyzed with fear that he would have them in public and be humiliated by them. Presley stopped going to work.  If it wasn’t for his rent, he’d never go back. But he had to. So finally Presley agreed to see a psychiatrist. …

To be continued

  • Sincerely, Dr. Q

Questions: What would you tell Presley? 

How would you like your physician and/or therapist to handle this, if it were you?

Why is Presley so opposed to taking medical therapies?

Please speak! We need to hear you.

Self care tip: Keep on! 🙂