About that sweet tooth…

Ice cream has the power to immediately elicit soothing feelings at the very first taste of a single spoon-full. It erases all the negative feelings related to the frustration and continues to stimulate pleasure receptors in the brain with every new scoop. And dementia (here is the best part!) allows one to fully enjoy the treat,with no concerns for calories, weight gain or dietary needs, completely guilt free! For people with dementia, ice cream is far more effective and safe than Prozac, or any other “happy” drug on the market!

Alzheimer’s Association Caregiver Tips and Tools, California Central Coast Chapter, Number 45

Articles like the one quoted above really make you feel like you’re not alone. This sentiment is spot-on when it comes to my mother and her craving for all sweets, especially ice cream! I don’t dare show up at the facility without a milk shake or a half gallon of her favorite flavor!

It is amazing to me that one human being can consume the amount of sugar that my itty bitty little mom does. Her neurologist once told me that it’s related to the disease. That it has to do with atrophy of a specific part of the brain, I think. When I went to see her today she was sitting at the table drinking her morning coffee (at 1:30pm, by the way. I guess somebody needed her beauty rest) and eating four small donuts. After devouring the donuts she wolfed down three more, a scoop of mint chip ice cream and a handful of m&m’s. And she was clearly irritated when I told her that if she wanted more candy she would need to get up and go to the kitchen. 

The words “healthy” and “diet” have always been non-existent in my mother’s vocabulary. I remember when I was a kid that as long as she had a cigarette in her mouth (and often, a scotch in her hand) she was good to go. Not only did she not need healthy food, she didn’t really need any food. When I look at the risk factors for dementia it’s no wonder that my mom is where she is today.

It is also no surprise that as her disease has progressed, it’s become impossible to get any healthy food into her at all. She refuses to eat meal after meal, saying things like “thank you, but I’ve never been a big eater,” or “I’m really just not hungry right now,” or my personal favorite, “no thank you, I just ate.”

The staff at the facility follow her lead. They are perfectly willing to feed her donuts and mint chip ice cream if it means that she is happy and consuming some calories. Despite lots of research suggesting a link between sugar and Alzheimer’s, I agree with this approach. At this stage of her life, if a steady diet of sugar makes her happy and she is not at risk of diabetes, then why not?

We just won’t discuss this with her dentist.

What’s for dinner? Flavonoids!

I read somewhere that our brains start to decline around age 27. But we don’t usually experience any associated symptoms until we are in our 70s. In other words, our brains spend 27 years developing and the next 40+ years undoing all that hard work. Which is totally unfair. Not just because we only get 27 years on the upswing, but also because our brains are silently betraying us for 40+ years and by the time we realize, it’s too late to do anything about it.

But it appears we now have another tool in the toolbox with which to fight back. Flavonoids.

Yes, I said flavonoids. Which are found in certain whole foods, including many fruits, vegetables, grains, bark, roots, stems, flowers, tea and wine. In recent months I have seen a handful of articles touting the effectiveness of a diet rich in flavonoids in the battle against many chronic health problems. Flavonoids are known to offer all sorts of health benefits through their anti-inflammatory, antioxidant and anti-carcinogenic properties. Apparently, brain health is one of the latest perks to be added to this list.

 A recent study published in Neurology, a journal of the American Academy of Neurology, found that a higher dietary intake of flavonols—one of six sub-categories of flavonoids—was associated with a slower rate of cognitive decline. To break it down even further, intakes of two specific components that make up flavonols—kaempferol and quercetin—were associated with this cognitive benefit.

Wikipedia describes kaempferol as a natural flavonol, a type of flavonoid, found in a variety of plants and plant-derived foods, with a flavor that is considered bitter. It essentially says the same about quercetin, but quercetin appears to be present in a greater variety of fruits, vegetables, leaves, seeds, and grains.

So really, what does this study tell us? I am not a medical professional, but I think it means that if you eat more foods containing flavonols, especially the flavonol components kaempferol and quercetin, you may decline cognitively at a slower rate than you would otherwise.

Sounds pretty good, right? Especially if you’re like me and have a family history of dementia. So what kinds of foods should we be eating to get at these cognition-rescuing ingredients? Turns out there is quite a bit of information out there about flavonols and what foods contain them. Generally speaking you can find them in many fruits, vegetables, berries, beans, teas and even wines. More specifically, onions, kale, lettuce, tomatoes, apples, grapes and berries are all rich in flavonols.

Some kaempferol rich vegetables that I came across in my research include watercress, mustard greens, arugula, New Zealand spinach, kale, endive, and radish seeds. Additionally, various fruits that contain kaempferol include blueberry, gooseberry, watermelon, kiwi, strawberry, and apricot. Foods rich in quercetin include citrus fruits, apples, capers, radish leaves, onions, buckwheat seeds, cranberry and black plums.

The way I see it, all this information about flavonoids provides good reason to recommit to a healthier diet rich in fruits and vegetables. As I sit here drinking my flavonoid-rich green tea I am reminded that it tastes like hay. But that aside, I am comforted as I imagine it producing a protective coating that envelops my brain cells, keeping out free radicals and obliterating any nasty plaques and tangles that try to penetrate. A silent brain-protecting superhero that came from my teacup.

April Update

So. A lot has transpired since the end of January.

Mom made a full recovery from her pneumonia and is back to her old self. It took a few days for her to become steadier on her feet and regain some of the motor skills she had lost during her illness, but the doctor was right. She did improve. And as she did, true to form she became nearly impossible for the hospital nursing team to manage.

I walked in one morning to find her standing up with four nurses hovering around her with their arms stretched wide ready to catch her. Adamantly refusing to use a walker, she cursed and spat insults at the nurses, demanding they get away from her. As the scene unfolded before my eyes, I couldn’t help but chime in, “Mom! I’m glad to see you’re back to your old self!” I was the only one who laughed.

What I was not prepared for was the memory care facility contacting me to say they expected Mom would need to go to a nursing home from the hospital. She was a fall risk, according to them. And because of this she required a higher level of care than they could provide.

This was almost unfathomable to me. My mom is strong. Youthful. Funny. Energetic. She would run circles around those old mamas in a nursing home!

Begrudgingly, I started researching and contacting nursing homes in the area, leaving messages, and waiting while almost nobody called me back. I got the sense there were waiting lists, as nobody seemed eager-or even interested in the prospect of securing a new resident.

The social worker from the hospital advised me to start the process of having her placed somewhere upon discharge by completing a nursing home universal application. She told me she had observed my mom and disagreed with the assessment of her being a fall risk. It occurred to me this might be just the opportunity the facility needed to unload a disagreeable and difficult resident. I was frustrated with everything and angry with Mom for putting us in this position!

On Mom’s second to last day in the hospital we got another chance. Her balance suddenly improved enough for the facility to agree to take her back. But the message was clear: one fall and she’s out.

She hasn’t fallen yet.

Day 3

 Mom’s white blood cell count is coming down, which means the antibiotics are working against her pneumonia. My bigger concern is what I’m seeing of her cognition and gross and fine motor skills. Suddenly she cannot walk, hold a spoon to feed herself, or even talk very clearly, when less than a week ago she was threatening her fellow residents with bodily harm!

When we were in the ER Mom talked a lot and it was clear she thought she was in her home. So any time there was a patient or nursing staff outside her room or a beep or a cart being rolled by, Mom got very worried about who was in her house. In addition, she talked a lot about her deceased pets as if they were right next to her, and added that she was going to visit with her deceased mom. She talked about curtains and painting the walls, and especially about how she needed to clear all the furniture out of this room. There was simply too much.

The doctor says this is normal when an elderly patient has an infection, and especially when that elderly patient has Alzheimer’s. According to the doctor, I should expect Mom to return to her old self in a few days as the infection clears. I hope she is right, though I am not convinced.

Blindsided.

I did not see this coming.

After a few days of increasing unsteadiness on her feet, the nurses at the memory care facility decided to collect a sample from Mom for a urinary tract infection. In an early morning effort to accomplish this, one of her nurses woke Mom to discover she could not stand on her own and had a fever of 103 degrees.

When I arrived at the hospital Mom was already there with medical staff by her side. We all fully expected the cause of her problem to be a UTI, which can wreak havoc on the elderly but is easily treated with antibiotics. Despite this minor interruption in my day I would be home by the evening and Mom would be safely back at the memory center.

Not surprisingly, Mom had other plans.  She was negative for a UTI, but her white blood cell count was elevated. She was indeed fighting an infection. But where?

The next step was an external x-ray followed by additional imaging of her abdomen, pelvic region, neck and upper back. She looked clear overall, but with one small finding…a teensy, weensy little bit of pneumonia on her right lung.

She was put on intravenous antibiotics and remained in the ER for 27 hours—27 HOURS!—before a very kind managing nurse on the 2nd floor noticed how long Mom had been waiting for a room and demanded she be brought to her floor to rest.

The doctor says it is not uncommon for Alzheimer’s and dementia patients to develop pneumonia. Sometimes food or drink goes down the windpipe rather than the food pipe and can cause pneumonia. She said this can also happen with saliva when swallowing or sleeping. I hope this doesn’t mean pneumonia will become part of our new normal.

Momzilla

Today I learned that memory care might not be enough for Mom. Despite her youthful sense of humor and otherwise healthy, strong body, she actually might need to go to a nursing home. And soon.

Apparently, this is because she is a bully. And while Lucid Mom would never condone such behavior, every day somewhere between 1 and 3pm Demented Mom becomes agitated and goes on a tear around the facility demanding that staff and residents alike, leave.

“Get out of my house!”

“What are you doing here?”

She recently stomped up to a gentleman visiting a loved one and demanded, “Do you need something?!?” The explanation that he was just a delivery man seemed to appease her enough that she backed down and went looking for someone else to terrorize. Unfortunately, in a similar state a few days later, Mom threatened to strike another resident in the facility. As in, punch her in the face. This is a problem.

Mom may be able to ambulate independently, she may be able to use the bathroom and shower unassisted, and she may be able to dress and feed herself, but right now my 78 year old 5′ tall, 115lb mom needs constant supervision to ensure she doesn’t knock anyone out.

What Mom is experiencing is known as sundowning, which the Mayo Clinic website describes as a state of confusion occurring in the late afternoon and spanning into the night. Sundowning can cause a variety of behaviors, such as confusion, anxiety, aggression or ignoring directions. From what I’ve read, it is not unusual to find this condition among patients with dementia and Alzheimer’s.

Mom’s sundowning used to start in the evening when she lived at home. In line with the definition, her confusion would start right around dinner time and continue until she went to bed, whenever that would be. During this time, she was known to call the same person up to fifteen times per night asking the same question or obsessing about the same issue over and over again (I call it looping). She also would feast on sugar at this time-usually her favorite candy or ice cream-and she would chain smoke.

With her current respite at the memory care facility, Mom’s sundowning is now starting earlier in the afternoon, leaving only a few pleasant hours in the day for her to have meaningful visits, participate in enriching activities, or to simply be at peace. Why is this happening? I don’t know. But I do know that after living in her home for 48 years, Mom internalized the patterns of light and shadows throughout her home and associated them with an approximate time of day. She knew without thinking that the morning sun shines through the living room window sheers, and in the evening the light pours through her kitchen sliding glass doors. Every evening she would turn on a light in the living room, and before bed the light was turned off. At night the curtains got pulled over the windows and in the morning they were pulled back to let the light in.

Now, with the loss of her familiar environment, she has lost those instinctual reminders of time. She lives without the familiar cues and rituals that subliminally pointed her to the correct time of day. And with that loss, her sundowning time has reset.

I suspect that mom’s lack of orientation to the time of day could be partly to blame for her earlier sundowning time, but medication adjustments and the environmental stress associated with her transition are possible factors, too. I have also seen a few articles linking circadian rhythm problems to sundowning.

As with so many questions surrounding Alzheimer’s, the answer to this one remains a mystery to me and the professionals helping us. But we’re not giving up just yet. We will continue trying to fit the puzzle pieces together and find a way to get Mom to settle down.

Let’s just hope she doesn’t clean someone’s clock first.

Don’t Worry. It’s Just Mild Cognitive Impairment.

Mom’s first diagnosis was Mild Cognitive Impairment (MCI). Not dementia. Not Alzheimer’s. Just MCI. The neurologist explained that MCI can progress to dementia, but doesn’t always, and sometimes it just goes away as if nothing had ever happened. Our orders were for Mom to get a cardio workout for 30 minutes each day…walking, biking, anything…and make sure she got her B vitamins and folic acid. We took all of this as very encouraging news and decided Mom would be one of those who got better…would not need further assistance… would not progress to Alzheimer’s.

The MCI diagnosis gave Mom a valid medical explanation for her circumstances. A crutch. She could now talk her way out of her most difficult moments, saying “excuse me…my MCI is acting up today,” or “I’m sorry, I have MCI,” as if it were a common household phrase. It didn’t matter that nobody knew what MCI was. What mattered was that Mom had her confidence back. She didn’t feel like a “bumbling idiot” anymore, she was just someone with a problem. A problem that was most definitely not Alzheimer’s.

I knew it was possible that she would progress to dementia, but for now she could function on her own. She was a little forgetful…would sometimes repeat herself…would lose her glasses and keys a lot. But otherwise she was good.

That was roughly 12 years ago. I don’t remember much else aside from the relief of the diagnosis. The clueless relief of being oblivious to our future reality.