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

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

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

Mom Is Happy and Well

Mom the day before her move.

My mom’s 10 Day Care Conference, which was really 12 days, went well.  They love her there.  Mom is upbeat and happy and she still hugs everyone.   She enjoys helping with chores and is able to remain focused long enough to finish small jobs.  Mom is sleeping and eating well and enjoys spending time with the other ladies.

Mom needs help bathing, dressing, grooming, and oral hygiene.  She needs direction with pajamas and getting to bed.  While mom is sleeping, the clothes she just wore are taken to the laundry or she’ll wear them again.  Someone needs to show her where the bathroom is — every day.

Mom uses her maiden name now and identifies as her younger self.  (If you’re thinking about sending mail, addressing it to Ruth Hall would make more sense to mom.)  Mom hasn’t asked about going home.  And she didn’t acknowledge my father when he was there today.

It’s amazing how quickly and easily she let go of her previous life and settled into her new home —  which tells me she is much further along than any of us realized.

She is happy and settled which is such a relief.

Mom is only 74, but she is home.

I asked for a sexy pose.

 

Social Workers Make a Difference!

My mom's Senior Day Care at the Southwest Senior Center lead to . . . .

My mom’s new home has a “10 Day Care Conference” scheduled for today.  When we admitted mom into this Residential Facility, we told them all about mom and where she’s at in terms of her Alzheimer’s diagnosis.  Now, after 10 days, Richfield Senior Suites will tell us what they think.  This is standard procedure and it’s a welcome meeting because it means they’ve been observing my mom enough to make a Care Plan for her.

I’m not sure what the plan will include, but I’m looking forward to hearing what professional caregivers with years of experience recommend for my mom.   Included at this meeting will be the Director, my dad, my sister, myself and a trusted Social Worker from my mom’s Senior Day Care, who has been a God-send to our family.  My sister and I will “attend” the meeting on a conference call which is why I’m so grateful my mom’s Social Worker will be there with her experienced eyes and educated questions.

. . . a terrific Senior Social Worker. Which lead to . . . .

Linda Walker, LSW from the Southwest Senior Center has been an advocate for my mom from day one.  She is the person who recommended we look into a Residential Home for mom rather than a traditional multi-room facility.  Linda showed me a list of Homes near my parents, and it’s from this list that my mom’s new home was found.  In addition to attending the meeting today, she’ll call me when it’s over to share her insights and offer suggestions.

Linda is also helping us navigate the tricky business of activating my mom’s Long-Term Care Policy and the dreaded and required Asset Assessment.   Wow.  How do we ever thank her?  Needless to say, I don’t know what we would have done without Linda — without her, my mother might not be in the lovely home that she’s in now.

. . . my mom's fabulous new HOME!

Need someone on your side?  Find a Social Worker!
Southwest Senior Center Information  (If you live in South Mpls.)
CLICK HERE for advice on finding a Senior Social Worker.
Don’t forget — you can always contact your Local Dept. of Social Services.

PS.  I’ll tell you about the meeting and my mom’s new Care Plan tomorrow.  : )