The Alzheimer’s Storm II: Caregiver Stress

An inconvenience is an adventure wrongly considered.    ~  G. K. Chesterton

Mom folding laundry with one of her caregivers, and her housemates at the table in the background. There are 5 rotating caregivers for 9 people.

Parenting is one of the hardest jobs there is, and I’m pretty sure the fierce animal love we have for our children is what makes it possible to parent day after day without drowning ourselves in the bath water.

So it’s sort of a surprise to discover the feelings are pretty much the same when caring for an aging parent.  We’d do anything for them, many people do — and they pay for it with high stress, poor health, loss of income, and blinding exhaustion.

The Alzheimer’s Association says there are more than 15 million Americans providing unpaid care for persons with Alzheimer’s and other dementias.  That’s about the population of Virginia and Washington combined, which is a lot of bath water.

I’m a long distance caregiver for my mom.   While this brings it’s own set of challenges and a fair amount of guilt,  I am not in the trenches like so many are, and so I really have no right to talk about caregiver stress.  I get it.  But if my mom lived with me, here’s what I would do to try and avoid excess stress.  You can call this a “dream case scenario.”

  1. Join my mom in Alzheimer’s World
  2. Have a schedule
  3. Do what she loves
  4. Laugh & Find the funny
  5. Pick my battles
  6. Give positive energy
  7. Move her body
  8. Encourage & Compliment
  9. Get outside
  10. Give her “jobs”
  11. Take her to adult day care

For me personally?  I would try to:

  1. Eat healthy
  2. Exercise
  3. “Sleep when the baby sleeps”
  4. Pray, Meditate, Pray
  5. Ask for help
  6. Accept help
  7. Laugh
  8. Hug
  9. Love
  10. Scream when I’m alone in the car

Sometimes I imagine that my mother is living with me as I go about my day.  What would she be doing while I make dinner, take a shower, or right now — while I’m on the computer?  Having mom here would probably be like having a two-year-old again — she would be at my side, doing whatever I’m doing, but instead of asking curious sweet questions and me being an eager teacher, mom would be saying the same things over and over and over again and I would be counting my breaths.  I mean no disrespect

There is so much time in between those pie in the sky items listed above.   So.   Much.   Time.

Everything would shift.  Mom would move to the top.  Things wouldn’t get done.  Movies wouldn’t be watched.  Legs wouldn’t get shaved.  Vacations wouldn’t be had.  Stress would be hard to avoid.

I’m positive it would be the hardest thing I could ever do.  But I’d like to believe I’d be grateful for the time with my mom with an understanding that it won’t last forever.

I’d like to find out if I’m right.

Are YOU a caregiver?  What are thoughts on this?

 

Find “In The Alzheimer’s Storm” Part I HERE, and look for “The Alzheimer’s Storm:  Family Conflict” 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.

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!

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 – Alz.org

Ruth Update: Something isn’t right . . .

Sept. 2012, Minnehaha Falls in Minneapolis

(ICK WARNING)  Mom has been vomiting for about a week now what is being described as a dark to light brown substance.  It’s just once a day in the morning or evening and it’s a small amount.  She’s also lost 10 pounds in a month.  Other than the weight loss and her vomit episodes, mom appears to be fine and doesn’t seem to be experiencing nausea, pain, or fatigue.  In fact, I hear she’s her normal happy self.

But a trip to the doctor was in order, and we were fortunate to get her in today.  The doctor doesn’t know what’s going on, but has ordered blood work and an ultra-sound scheduled for Monday morning.  Her gall bladder was tender to the touch, and he’s thinking that could be it.  Hopefully we’ll find out soon, and I’ll let you know when we do.

Ruth Update: December Visit from My Hubby!

My husband Vince recently had the good fortune of visiting Minneapolis for business.  And this was a great opportunity to visit my family while there!  Vince did the usual things with my dad and brother that included going to a locally famous hamburger joint to eat “Juicy Lucys,” watching Monday Night Football, and then going out for steaks on another night.  Priorities!  But he also got a chance to visit my mom and see her new digs for the first time.

I was pleased to hear mom recognized Vince and was happy to see him.  He reports that her language has definitely diminished since he last saw her in 2010, and communication was difficult.  But they went on a walk together and my dear husband was patient and they chatted as best they could.  He brought Christmas gifts for her, and here are a couple pictures of her opening them.

Vince said mom was confused on how to open the packages and she needed help, which is new.  We gave her a Christmas fleece in her favorite color and a new book called “Blue Sky, White Clouds” by Eliezer Sobel which is a book for memory-challenged adults.  I hear she enjoyed it and they read it together.  But this book gave me an idea to create her own personal “Memory Book” that includes her life story in simple pictures and words to include names of her loved ones which I think she would love.

Mom tried on her Christmas fleece which looked like it may have been a bit short, but then it was put on over her sweatshirt, so I don’t know.  I wish her eyes were open here — but you get the idea.

It was so nice that Vince was able to visit.  Since I couldn’t go he sort of carried my love and hugs and gifts to mom for me, which was just beautiful!  (sigh)  Merry Christmas far away mom, dad, brother and sister in Texas!  You’re in my heart on Christmas and every day.

Ruth Update: Feeding The Birds

Mom’s new caregivers have started texting me photos of mom using their camera phone.   So while it’s not the best image, it’s still very much appreciated and I enjoy the updates immensely.  This picture of my mom feeding the birds was recently sent along with the caption “Ruth has become our resident bird feeder.  She goes out daily to the back yard and enjoys just looking around at nature.”

Mom has always been a nature lover and especially a lover of all animals.  This bird feeder stand sits right outside a large picture window where my mom spends a lot of time.  It’s an added blessing that she has birds and squirrels to watch from her window because I’m pretty sure this brings her happiness.  The fenced in yard is nice too since being outdoors has always been important to mom.  Plus I hear she sometimes chats with the neighbors, which is such a sweet thing for me to imagine.  I wonder if the neighbors speak Alzheimer’s?  ; )

Ruth Update: Happy Halloween!

This just in!  A text photo from my mom’s new caregiver!  This is the first text I’ve received from my mom’s Assisted Living Home that I’m thrilled to receive because it helps close the miles between us.  For those of you who don’t know, my mom was diagnosed with probable Alzheimer’s in 2005 when she was 68 and she was moved into an Assisted Living Home in May of 2012 at the age of 74.   She lives in Minnesota and I’m in Virginia so updates like this picture are a joy!   Since mom’s Home is in a neighborhood, I understand the neighborhood children come into the house every Halloween and walk down the line of residents who pass out candy.  I bet mom loved that!

Happy Halloween!