Dear Assisted Living Home

Mom picking rocks on Leech Lake, MN 2007.

When you told me the other day how my mom is showing signs of agitation, that she resists re-direction, gets into everything, and that she sometimes makes fists and gives dirty looks, I was really thinking —

And your point is . . . ?

Mom has a brain disease.  She has advanced dementia, Alzheimer’s or something that is suffocating her brain and making her behave erratically in the process.   Mood swings, agitation, and a departure from reality are expected.

Please be patient and kind with her.

Instead of complaining, tell me how you are accommodating my mother’s advancing disease.  Because when you tell me she’s making a fist — I hear that she’s frustrated, and that YOU need to slow down and be patient with her.

Please meet her where she’s at.

When you told me that she broke the night light in her room, I was thinking that it shouldn’t have been there and that she’s lucky she didn’t cut herself.  I remember going into homes that weren’t childproof with my very young children and feeling like I was surrounded by time bombs.  The glass vase on the coffee table?  BOOM!  The beautiful floor lamp?  CRASH!   You should know by now that my mother is like a 5’3″ “toddler” who gets into things.

Please safeguard your valuables and childproof your surroundings.

When you complain about my mom, it feels like daycare complaining that my toddler broke a crayon or ripped a page in a coloring book.  Which probably explains the puzzled look on my face and why I don’t apologize.

Please stop complaining!

The toddler can’t help it and neither can my mom.

Signed,

Daughter Bear

Mom & Dad, Brother John, and my foursome in 2009.

Yes, Mom Is Ready For Hospice

Celebrating mom's 70th birthday in 2007 in northern Minnesota.

My family met with hospice yesterday and my mother qualifies for care under the diagnosis of “debility,” also known as failure to thrive.  It’s my understanding that mom didn’t qualify under “dementia” because she can still walk. When you look at my mom you wouldn’t think she’s ready for hospice, but when you put everything together it makes sense:

  • terminal illness
  • requires assistance in all Activities of Daily Living (ADLs)
  • weight loss — 13 pounds since December
  • pneumonia
  • seizure
  • difficulty swallowing

Saying YES to the “comfort care” of hospice means saying NO to life saving measures.  It indicates surrender and turning towards death rather than away from it.  It means 911 will not be called if my mom has another seizure, and antibiotics are an option if she gets pneumonia again.  It feels a little bit like playing God, but mostly, it just feels like compassion.

Mom supported Jack Kevorkian’s mission and believed we should be as kind to humans as we are to animals.  Mom would approve of this hospice plan because if she could articulate her thoughts, I’m pretty sure she’d say she’s had enough.

Hospice will need to re-qualify mom in three months to determine if services are still necessary, but she isn’t getting better and I’m guessing she’ll be re-approved.

So there it is.  We don’t know how much longer little Ruthie Hall from Wadena, MN will be with us, but I am not ashamed to hope for a swift and peaceful transition.

2007 Mom always enjoyed swimming.

 

Mom Update April 2013: Is It Time For Hospice?

My mother, who has advanced Alzheimer’s disease, had a grand mal seizure last Thursday that left her unconscious and earned her a trip to the hospital.  She’s back home and appears to be recovered, but she’s declining rapidly and we’ve been advised to contact hospice.

It’s been suggested that my mom has less than 6 months to live.  While I’m not in denial and wouldn’t be against a quick and merciful end to this madness, how do we know when a person with dementia is ready for hospice?  How do we know my mom is nearing the end of her life?

Experts say the average duration of the disease from diagnosis to death is 8 – 10 years.  But people can succumb to the disease in 6 years and I’ve heard some hang on for 20 years, which makes predicting the end for someone with dementia an educated guess at best.  Mom is about 8 years in.

In “Mom Update: February 2013,” I shared about mom’s decline and how her caregiver thought she had about a year left.  Now I’m hearing she won’t be here beyond the summer, which is a pretty bold statement, but one I take notice of since mom’s caregiver has twenty plus years of experience watching people like my mom come and go.

When I say mom is declining rapidly, it’s difficult to describe since she’s not the typical Alzheimer’s sufferer.  (See “If It’s Not Alzheimer’s, What Is It” for more on this.)  Mom walks and “talks” and is still able to feed herself, she laughs and jokes and holds the cat . . . and yet, there’s an emptiness to her eyes and an absence from the here and now that permeates all that she does.  She’s in the room, but she’s not.  It’s as if mom is a warm vessel going through the motions of daily living and carrying out lifelong mannerisms — but the captain is gone and mom is on auto-pilot.

I’m quite often asked if my mom still knows who I am, and for the first time I can say that I don’t think she does.  And yet . . .  even as I say this, I’d like to believe there will always be something that recognizes daughter . . son . . husband.  Something that just knows this is family. . . this is love.

This is the standard hospice admission criteria from ALZonline.  Mom meets 4 of the 6.

Hospice’s admission guidelines for persons with dementia of either Alzheimer’s or multi-infarct type (irreversible) are as follows:

  1. Person has to be in the end-stages of the disease,(stage 7 or beyond).
    • Person cannot walk, dress, or bathe properly without assistance.
    • Person is incontinent.
    • Person has little or no meaningful verbal communication.
  2. Presence of medical complications that require hospitalization. Must have had one of the following in the past 12-months: aspiration pneumonia, kidney infection, septicemia, multiple ulcers, and recurrent fevers after antibiotics.
  3. Deteriorating nutritional status as evidenced by difficulty swallowing or refusal to eat and progressive weight loss, etc.
  4. The person exhibits severe cognitive impairment as evidenced by progressive confusion, anger, frustration or withdrawal, inability to recognize family or friends, loss of ability to follow directions, loss of immediate and recent memory with progressive loss of remote memory.
  5. The patient/family desires no further medical intervention and/or aggressive medical intervention is considered futile.
  6. There are other existing medical problems accelerating terminal disease such as CHD, COPD, Renal disease, Liver disease, etc.

We are meeting with hospice on Saturday to determine if mom qualifies for services.  If she does, hospice support will be provided in her home and will augment the care she’s already receiving.  If she doesn’t, we’ve had a trial run and know what to expect when the time comes.

I think it can go either way, and I’m not attached to either outcome.

If It’s Not Alzheimer’s, What Is It?

A jumbled up puzzleIn “Mom Update: February 2013” I wrote about how quickly mom’s disease is progressing and how it might be something in addition to or instead of Alzheimer’s disease.

Oh we’ve been calling it Alzheimer’s disease, but the truth is — we don’t know what mom has.  Mom had an MRI in 2006 that ruled out other brain problems like a stroke or a tumor, but we never received a definitive diagnosis — just “probable Alzheimer’s.”

With Alzheimer’s making up the majority of all dementia cases, it’s an easy diagnosis to go along with.  Add that my grandmother and great-grandmother “had Alzheimer’s,” and you can see how believing the diagnosis was even easier.

But we didn’t really know what my grandmother and great-grandmother had.  And we don’t really know what mom has.

The doctor jumped to a conclusion and so did we.

There is plenty written about the misdiagnosis of Alzheimer’s disease including a 2011 study that found half of Alzheimer’s cases are misdiagnosed.   With Alzheimer’s making up most of all dementia cases, and given that it can’t accurately be diagnosed until after death, probable Alzheimer’s is an all too common diagnosis doctors make.

Another article titled “What Type of Dementia Is It?” outlines the importance of getting an accurate diagnosis in an effort to provide the best care.  There are over twenty different types of dementia including rare forms — one of which my mother might have.

I feel a little foolish and naive about not questioning mom’s diagnosis.

It’s too late for diagnostic testing on my mom.  She would need to be sedated to get an accurate brain scan — and sedation and dementia don’t mix well, quite often causing further decline.

If we want to know what mom has, at this point, there is only one way to find out — an autopsy.

Autopsy is a scary word, and scary to think about.  But I’ll be thinking about it.

How important is it to know what mom has?  How will we benefit from knowing?  What’s the downside of not knowing?

Have you had to make this type of decision before?

Mom Update: February 2013

Mom and the beloved resident cat Kylee.

There are no mistakes, no coincidences.  All events are blessings, given to us to learn from.  ~   Elisabeth Kubler-Ross

“I think your mom has about a year,” is all I remember from my first visit with mom last week.  I didn’t get a chance to ask questions until our Care Meeting on Wednesday, but by then, I could see why my mom’s Caregiver would say this.

The first thing I noticed is mom’s diminished level of engagement.  She’s lost and far away, and has an emptiness to her eyes that I’ve not seen before.   And for the first time since mom’s diagnosis, I’ve thought to myself, “my mom is brain dead.”

You can take that literally, because Alzheimer’s is another word for a dying brain.

The last time I visited in September, mom could be directed to do things on her own.  Now she needs help with everything — eating, dressing, undressing, escorting to the bathroom, hygiene, toileting.  Everything.

Mom is going down fast.  That’s what they tell me, and that’s what I see.

Mom’s Caregiver thinks she has something other than or in addition to Alzheimer’s disease.  After spending time with other residents in mom’s Home with Alzheimer’s, I can see what she means.  While one woman colors in a coloring book, mom doesn’t understand that she needs to pick up the crayon to color.  Another 94-year-old woman with advanced Alzheimer’s uses complete sentences, and is highly engaged.  Not true for mom.

I recently shared my New Year Resolutions for my mom which is more of a list of things to do before it’s too late.  But it’s already too late for some things on the list like traveling to her home town which would be too much.   But maybe when the weather is warmer, we can do the easy things like walk barefoot along a lake shore or watch clouds overhead.

Mom has rounded a corner and I believe I have too. 

I’m less frantic, more realistic, and more at peace.  If it’s true that mom has a year, then there’s nothing left to do now but enjoy her — and make sure she’s loved and gets good care.

Mom & Dad at her Home ~ I love moments like these.

Minneapolis Bound: February 2013

Next Saturday I fly from the cold state of Virginia to the freezing cold state of Minnesota.  With one friend going to Puerto Rico this month and another on a Caribbean Cruise, I can’t help but wonder if I have it backwards by heading north.  But this is what it’s come to — my airline ticket money is saved for home, and heading south while tempting, just wouldn’t feel right.

There isn’t a big To-Do list this time, my plan is to mostly chill and spend time with my family.

But if you read “Racing Alzheimer’s: Mom’s New Year Resolutions” recently, you know that there is a list — it’s just not my list.  I hope to knock some things off mom’s list by doing what we can that doesn’t require warmer weather.  I know require is a relative term, but this Minnesota girl has become a cold weather wuss since leaving over 20 years ago.  I mean, there’s really no reason to be outside when it’s below 40 degrees.

A warm coat, chap-stick, and mom’s list — let’s do this.

Hopefully I’ll be able to smell spring in the air when I return.

Bon Voyage!

~  Joanne

FUN FACT: It's so cold in Minneapolis, there's a Skyway System of enclosed pedestrian footbridges that connect buildings in Downtown Minneapolis enabling people to walk in a climate-controlled environment. The extensive Skyway system is renowned as the largest continuous system in the world. http://en.wikipedia.org/wiki/Minneapolis_Skyway_System

 

 

Racing Alzheimer’s: Mom’s New Year Resolutions

The funny thing is, it didn’t occur to me the Alzheimer’s I’d be racing, would be my mom’s.

New Year Resolutions are like a Bucket List, only with a deadline.  I’ve been writing down resolutions for years now, with some previous goals being to participate in Alzheimer’s research, learn how to meditate, lose 5lbs. (of course!), and last year to run a 10K.

As I thought about my Resolutions this year, I kept going back to my mom who didn’t have any.  I couldn’t help but wonder what her resolutions would be if she had the capacity to understand her short time left.  What would she put on her list?  What would she like to do just one more time?

Since mom couldn’t make New Year Resolutions, I made them for her.   Based on what I know about her, these are the things I think she would like to do this year — one more time.

Mom’s 2013 List:

  • Go to hometown of Wadena, MN to walk down main street and visit old friends
  • Eat buttered macaroni mixed with ketchup, and crumbled bacon
  • Go on a boat ride and fish for Walleye                                                     
  • Walk barefoot along a lake shore
  • Eat a BLT with a homegrown tomato
  • Visit the zoo
  • Drive downtown
  • Play with puppies
  • Watch a softball game at the park
  • Visit Minnehaha Falls
  • Watch the movie “Born Free”
  • Hold a baby
  • Listen to “Hallelujah Chorus” by the Mormom Tabernacle Choir
  • Lay in the grass and watch clouds overhead
  • Sing Christmas Carols

This list looks do-able, but it will take some planning to accomplish everything during the course of my visits home this year.   I may be delusional thinking this is even attainable — mom may not be up for a 3-hour road trip to Wadena, let alone a boat ride — but I’d like to find out.

Alright, let’s be honest.  This list is for me.  Mom would be fine without this list, sticking to her small existence of 3,000 square feet that includes oatmeal, the Price is Right, and a fenced in yard.

But let’s do it anyway!  Let me see the glimpses of joy these things might bring, knowing full well that *poof* they’ll be gone in minutes as if they never happened.  Let me live in the moment with her, and be fully present as she experiences these forgotten things that she loves so much.  Let me witness the little girl she’s become laugh and be carefree.

Let me watch as mom revisits herself and remembers she’s still here.

I’ll take pictures as we go through the list, then someday, if my children ever make such a list for me, I hope they include “Look at photos of Mom and I.”

Adding “Eat Buttered Popcorn” and “Dance to Play That Funky Music” would be appreciated too. : )

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