In The Alzheimer’s Storm

There are some things you learn best in calm, and some in storm.     ~  Willa Cather

I am quite often asked how my mother is doing.  While I am grateful for the care and concern for my mom, the truth is, mom lives in a bubble or as I like to think of it — the eye of the storm.  In the eye of the storm, things are calm and quiet, peaceful even with the lowest pressure of the storm residing in the center.  But as you go out from the center, the pressure rises, the winds pick up and things can start spinning out of control.

My family is in the Alzheimer’s Storm.

Everything has shifted — duties, roles, plans — all of it, and we are still trying to find our new footing, or equilibrium if you will.

In a LIVESTRONG article titled Effects of Alzheimer’s Disease on the Family, there are five main areas of impact on the family:

  1. Legal
  2. Financial
  3. Caregiver Stress
  4. Family Conflict
  5. Emotional Adjustment

After a family has recovered from the shock of an Alzheimer’s diagnosis, the next thing to do is take stock, and get legal and financial affairs in order.  The first thing my parents did, while mom still had mental capacity, was hire an attorney.  My parents updated their wills, prepared Advanced Health Care Directives (Living Wills), and designated a Power of Attorney.  This was all done in 2008 when my mom still (barely) knew what she was signing.  If we had waited any longer, it would have been too late for mom to legally sign these documents due to her advanced Alzheimer’s and subsequent lack of mental capacity.

Having the Power of Attorney in place first is crucial to helping parents with their financial accounts.

Mom was the bookkeeper in the family, and when Alzheimer’s moved in, mom’s organized running of the household finances moved out. I would imagine every Alzheimer’s sufferer has their “big tell” — that moment when you know once and for all that Alzheimer’s is real and here to stay.  Seeing mom’s checkbook was this moment for me. Like a skilled knitter uncharacteristically dropping stitches, mom was dropping payments, numbers, and even the ability to accurately write out checks and record them.  Mom’s proud history of balancing the checkbook to the penny, now consisted of a rubber band holding three checkbooks together, with a few checks missing from each and with a register that was difficult to read and didn’t make sense.

I arrived to this scene a little late.  Mom had made some double payments on utilities, but fortunately, no real problems had occurred.  My mom was hanging on by her fingernails, with the second big tell being my fastidious mom’s willingness (and relief!) to hand it all over to me.

Since finances are not my strength, it took me some time, an exhaustive amount of correspondence, and many notarized signatures to get complete control over my parents financial house.  But I’m happy to say the task is complete, the elephant has been eaten and it’s triumphantly taking up an entire file drawer in my house — with labels!

You’re wondering about my father?  He didn’t handle any of the finances throughout their marriage, and at seventy-six, he wasn’t interested in starting now if he didn’t have to.

Don’t wait for the Alzheimer’s storm to bring down the house — don’t be afraid to talk with each other about money before things get messy.  Consider getting elderly parents started on electronic banking if they’re not already, this will be helpful to you both down the road and build their confidence in you, which will go far as more responsibilities fall your way.

Here’s an article from FindLaw titled, “Planning For Incapacity” for more information on the importance of getting things done sooner than later.  A good article on “Getting Your Affairs in Order” from the NIH & National Institute on Aging.  And earlier this week, Money Talks News wrote about the “5 Considerations for Coping with Alzheimer’s Disease.”

Look for #3 Caregiver Stress in a later post.

~  Joanne

Ruth Update: On To Plan D — Drugs

Sept. 2012, Minnehaha Falls in Minneapolis

As many of you know, my mom has been having tummy trouble since December.  Let’s call it “tummy trouble” instead of vomit, okay?  I initially told you about it Dec. 29th, and then updated you on Jan. 15th, so this tummy trouble has been with mom for some time.

Mom had an abdominal Ultra Sound — nothing.  CT Scan — nothing.  Mom’s caregivers thought she might be drinking her denture water at night (which is toxic by the way), and we were hoping this was the answer.  But, the Effordent was removed from mom’s room, and the tummy trouble continued — two times last week.

So now there is a new word being tossed around.  Gastroesophageal reflux disease.  Also known as GERD.

We don’t know if she has GERD, but the real bad guys have been ruled out, so what’s left are things like ulcers, heartburn, GERD.  Since testing for these things includes sedating mom and having a small camera pushed down her throat, we thought how would these things be treated?  What if we just skipped this procedure and started treating her as if she had one of these ailments?  And at the very least, stop her tummy troubles before the resulting acids cause other problems.

Thankfully, her doctor agreed and prescribed Prilosec, which she started on Tuesday.  This will hopefully help mom’s tummy trouble.  If it doesn’t, I have no idea what’s next.

On a side note, I spoke with her today and asked her if she had been vomiting.

She said, “No, I don’t think so.”

So she’s got that going for her.

A Pacemaker For The Brain?

A “pacemaker for the brain” to help slow Alzheimer’s and retrieve memories is all over the news right now.  Researchers used Deep Brain Stimulation (DBS) on a man back in 2003 that seemed to unlock old memories.  This led them to think about the memory loss in an Alzheimer’s brain, and if this method could perhaps help those inflicted with this disease.  “Implanting electrodes into the brain isn’t new” says USA Today article, but it’s new for the Alzheimer’s brain.

The potential for science curing Alzheimer’s, cancer, and other diseases is encouraging and even exciting, but the idea of putting electrodes in the brain to cure a sick brain, while it does have merits, seems a little backwards.  This endeavor highlights two things:

1.  How incredibly amazing our bodies and brains are.  The Alzheimer’s brain is a sick brain.  The beta amyloid plaques and tangles are our brain’s response to something not right.  Our body knows why the plaque builds up, but scientists do not.

2.  How science and the medical profession is so focused on easing our symptoms rather than finding the root cause of our physical maladies.  It seems a new drug, or an electrode in this case, is the focus rather than preventing the disease in the first place.

Now I realize some people are trying to find a cure for Alzheimer’s and other diseases, but for the most part, drug therapies are being promoted for just about everything.  In fact, drugs to “fix” our symptoms are so prevalent and profitable, that I would imagine curing our diseases would not be a smart business move.  So I don’t know — are there more folks working on preventing and curing diseases or on developing responses to diseases?

There’s a lot of talk lately on inflammation and how it could be the root cause of many diseases, and I’ve heard that Alzheimer’s is “inflammation of the brain.”  So when I think of the electrodes being implanted in a brain, I picture a car battery that needs to be jumped, but the terminals are full of gunk.  We can jump the car through the gunk, or we can clean off the gunk and start the car on it’s own.

I hope more people are working to clear the gunk rather than working on making more jumper cables.

* Disclaimer:  I do not mean to offend anyone currently on a drug therapy — drugs are needed and helpful in many cases.  I just hope we are focused on curing diseases rather than just managing their symptoms.

Middle-aged, Out of Shape, Incredibly Lazy Woman Begins Exercise Program

'Runners set records in 25th Army Ten-Miler 091005' photo (c) 2009, U.S. Army - license: I decided to start running in 2011 it seemed like a crazy idea.  If you read “I Am Not a Runner,” you will know what I mean.  But a personal commitment to exercise had recently become a nagging whisper in my daily life, sounding something like “you need to exercise . . . you need to get healthy  . . . you need to mooove before you CAN’T MOVE ANYMORE!”

Oh sure, I tried to be a serious “power walker” (I could do that!), but I still wasn’t really moooving in that out of breath way that indicated I was working hard.  Then I read an article written by Oprah’s fitness trainer, Bob Greene, outlining “10 Reasons to Exercise,” where he suggested finding just one reason out of the ten that he offered to motivate me enough to do it.

And so I did.   I exercise for my brain.

Many of you know my story by now of the three generations of women before me with dementia.  You know that my mother is in the advanced stages of the disease, and that I would do pretty much anything to avoid this fate myself.  So when I found out that exercise slows the aging process, reduces cognitive decline and helps preserve memory, my lazy days were over — I didn’t have a choice, I would be a lazy fool if I didn’t exercise.

The idea of exercising for my brain has been helpful.  It’s been motivating because it feels just a tad more important than exercising for my butt or my thighs.   According to Mr. Greene, some other important reasons to exercise are:

1.  Fight disease                              6.  Alleviate joint pain

2.  Lose weight                                7.  Ease back pain

3.  Look better                                 8.  Improve sleep

4.  Gain energy                                9.  Fight aging

5.  Less illness                                10.  Love your kids

Bob Greene goes on to say,

Exercise is one of the most effective ways to fight aging. Regular workouts drastically reduce the loss of muscle and bone, and improve circulation. Exercise may also help reduce inflammation and stave off age-related diseases. As if that’s not enough, physical activity seems to have a protective effect against dementia, and may help improve memory and other cognitive functions. One Harvard University researcher called exercise “Miracle-Gro for the brain.”

Miracle-Gro for the brain?  Yes please!

I like Bob Greene’s easy to understand article on the 10 Reasons To Exercise, but if you want something a little meatier that offers scientific research indicating the benefits of exercise on the brain, you can go to this New York Times article or this Time Health & Family article.

Finally, I want you to know that exercising is quite often difficult for this middle-aged, out of shape, incredibly lazy woman.  I’m on again, off again and I still struggle to get to that place where exercise is a natural part of my daily life.  (In fact, I’m procrastinating right now!)  But I am motivated and determined to do the right thing for my body and my brain, by answering the whispers, and moooving!

Besides, it only sucks half the time, and the other half it doesn’t.

Ruth Update: Something STILL Isn’t Right . . . But we may be on to something.

On December 29th I shared that something is going on with my mom.   Blood work was underway and an abdominal ultrasound was scheduled due to daily vomiting episodes and a sudden drop in weight.  The ultrasound and blood work results came back two weeks ago and were negative for any abnormalities.  Mom’s gall bladder was suspected, but that appears to be normal.  So, mom had an abdominal CT scan last Monday which came back with normal results, and again, no answers.  Nada.  Nothing.  Mom’s doctor, mom’s nurse & caregiver — nobody has any idea what’s going on with her.

Currently, mom has been vomiting most every day since December 23rd.  It usually happens in the evenings or middle of the night, and there were traces of what looked like blood two nights ago.

Mom’s doctor wants her to come in on Friday for more blood work and x-rays and then most likely an “upper GI” would be the next course of action.  The triage nurse at my mom’s doctor’s office has been so helpful and explained that we’ve (most likely) ruled out any big problems, and the gastrointestinal examination would be looking for ulcers and inflammation of the stomach and esophagus.

So round and round we go trying to get to the bottom of this mystery!

And then, a little bit later and while writing this update, I got a call from mom’s caregiver saying there’s been a discovery!  You see, Mom wears dentures, and her dentures go in a cup of Efferdent every night, and there is evidence that mom may either be drinking her denture water, eating her denture tablets or both.  Could it be that mom is waking up in the middle of the night, thirsty and drinking her denture water?  While this sounds pretty gross and the Efferdent is toxic, I hope this is the culprit so we can solve this mystery and so mom can feel better.  It would also be such an easy fix and avoiding more tests would be nice.   So we’re holding off on more testing, and beginning tonight, all Effordent has been removed from her room.  We’re on the wait and see plan.   With our fingers crossed.

Whatever the outcome, there will now be a glass of water by my mom’s bed at night .                Poor thing.

Not dentures, but a cool snack idea!

6 Reasons I Joined A Gym

I joined a gym! 

My feelings about this are somewhere between excited and terrified, but I’m looking forward to getting started.  I never considered myself an “exerciser” until 2011 when I began running and working out on a somewhat regular basis.  I got into it pretty quickly and found myself exercising four to five days a week which was unheard of for me — I felt great, went down a pant size, was signing up for 5Ks and a 10K — and then  . . .  I  . . . gradually . . .  stopped.  Well, almost stopped.  I still ran a little here and there, did sporadic floor exercises, “push-ups” on the stairs, squats while blow drying my hair, but it was all going to hell and my motivation was waning.

So I decided to join a gym.  Here’s why:

1.  Motivation.  I need to be where other people are working out.  It’s tough to stay motivated when I’m doing it alone.

2.  Weights.  After receiving poor results on a recent bone density scan, I have no choice but to begin strength training.

3.  Classes.  Yoga, Zumba, Cycle, Pilates, Boot Camp!

4.  The big 5-0.  I’m turning 50 this year.  Aaaaagh!  When? How? Must turn back time!

5.  Cost.  It’s crazy inexpensive right now at Gold’s Gym.  Maybe they have good deals where you live?

6.  Alzheimer’s Prevention!  Exercise and pumping iron are two of the best things I can do for my brain.  It’s a no-brainer. ; )

Also, see me in that batting cage?  It was a lot of fun, and it brought back memories of my softball days, but that was on Dec. 26th, two weeks ago, and I am STILL in pain.  I am so dog-gone weak that I have virtually no upper body strength, and I’m still paying for my batting fun.

I am weak.  I want to get strong.  That’s why I joined a gym.

Wandering and Getting Lost — How To Keep Your Loved One Safe

Mom at the hair salon acting silly. I have no idea where she found those slacks.

Too often, I read about people with dementia who go missing.  We have never lost my mom, but there have been times when we she was out of sight and a low-grade panic set in.  Like when you suddenly realize you don’t know where your three-year-old is, losing sight of a dementia sufferer is just as frightening.  Everything stops until you lay eyes on your loved one and see they’re alright.

This is a common tale for the dementia and Alzheimer’s sufferer who tend to wander.  In fact, 6 in 10 people with dementia will wander for reasons that seem quite ordinary to them such as they are “going home,” or “to work,” or they are simply restless and need to GO, GO, GO!

My mom is secure in her Assisted Living Home.  She is locked in with the key out of reach, and the backyard she enjoys is fenced with secure gates.  And she is never out of sight when she goes on an outing.  But should any of these measures fail, mom wears an ID Bracelet with ALZHEIMER’S engraved on one side and my dad’s phone number on the other.

Still, accidents happen and precautions can fail which has lead to a new resolution passed in 29 states called “Silver Alert” that’s like “Amber Alert,” but used for citizens with dementia.  Based on what I’ve read about the number of Silver Alerts in individual states, plus the number of missing person reports I see each week, I would guess there are easily a thousand missing dementia sufferers each year in this country, if not more.  I can’t find the number.

Think of it this way — like a very young child, the dementia sufferer is lost and doesn’t know their address, which direction to go, or how to cross the street.  They are lost, afraid, and in eminent danger until they are found, which isn’t always the outcome.  Acting quickly, and returning them home within 24-hours is crucial to their safety.  But to hopefully avoid this situation, the Alzheimer’s Association has good information on keeping your loved one secure and safe in the first place, including:

  • Having a routine and daily structure
  • Identifying the times your loved one is most likely to wander
  • Reassuring/Communicating to your loved that they are safe with you
  • Ensuring basic needs are met
  • Avoiding busy places
  • Securing doors and fences
  • Hiding car keys
  • Having a back up plan such as an ID or MedicAlert Bracelet is also a good idea

Like a child discovering how to escape the crib, my mom might one day figure out how to get out of the backyard — and it can happen in a second.  I believe I’ll be asking about that gate lock today.

Alzheimer’s Association –