Mom Update: September 2012

Mom and I in her back yard.

Visiting family and friends in Minnesota is one of my favorite things to do, but it always goes by too fast.  With my mom in the mid-stages of Alzheimer’s disease and her recent move to an Assisted Living Home, I feel the need to visit more often.  If you’ve seen “The Stages of Alzheimer’s and My Mom,” you’ll understand what I mean.

Mom was completely surprised when I arrived at her place on Saturday morning, and then she burst into tears.  This was a new reaction that concerned me as she continued to cry in my arms.  But her tears eventually turned to smiles and I decided to think of them as her heart recognizing me.  I like that.  But still, I have to wonder — does she know what’s happening?  Is she being treated alright?

There were just a few subtle changes with mom.  Her language continues to diminish.  It’s very difficult for her to communicate and knowing context is critical to understanding her.  It occurred to me that she doesn’t use a lot of nouns anymore, maybe because she has trouble naming things.  But Mom speaks in a happy voice, with her upbeat sentences sounding something like this:  “Sometimes I go . . . and then we see. . and so forth  . . . and I say, why not!” Then a reply might be, “Exactly!  Why not?!” Then laughter usually ensues.  Mom loves to laugh and make other people laugh.  Laughing with my mom is such a gift, because it’s right there in that opening that a connection is made.  I found mom’s high school yearbook when I was home, and next to her senior picture it appropriately says:

“Laugh and the world laughs with you.” 

Wadena High School Class of 1955

Another subtle change could be seen in mom’s motor skills.  Her gait and footing are not as steady as they used to be.  She also needs some help getting dressed, when she didn’t need help before.  Losing motor function is a late stage characteristic that could last for years.  The caregivers and I discussed mom’s eventual need for a walker.

The other change is a good one.  Mom used to fixate on giving back rubs and back scratches to almost everyone.  A simple hug would end with a vigorous rub or scratch — whether you wanted one or not.  This friendly but compulsive activity is almost completely gone.  Yes, this is a good thing.

Mom “knows” everyone, and everyone is a “friend.”  So when we go out, I am used to gently moving her along when she engages a little too long with her “friends.”  We went to a local park one afternoon and she suddenly gasped and couldn’t believe her friends were there!  She rushed over to say hello to a strolling couple and as I prepared to intervene, her “friends” said “Ruth!  How are you?!”  They knew her!  Mom was right!  They were friends, and for some reason it just blew my mind.  We chatted a bit before parting, then we saw the couple again about five minutes later and mom gasped in surprise and couldn’t believe they were there!

My brother John and Mom at Minnehaha Falls where not one drop of water was falling.

Mom turned 75 in September.  I gave her a baby doll for her birthday, because I’ve seen women in nursing homes holding baby dolls and I thought mom might like one too.  I was just thinking that if she got familiar with a doll now, it might offer her comfort later.  Anyway, it was fun to watch her hold and feed the “baby” while feeling just a little bit silly it seemed.

Mom feeding the baby who is wrapped in a beautiful blue blanket knit by a friend of mine.

Overall, mom is doing well.  She is happy and seems to really enjoy her new home and the other residents.  Mom gets a fair amount of visitors with her most recent being a dear school friend from her hometown.  While visiting with mom’s friend who is sharp and has a very active life, I couldn’t help but wonder — what if?  What would mom be like at 75 without Alzheimer’s disease?  I try not to go down that road, but it’s easy when I’m with someone mom’s age.

Mom and Helen Kay

For those of you who know my dad, his ankle has improved after replacement surgery in May and he’s getting around with a cane now.  He has a fairly full social calendar that includes visiting mom a few days a week.  But he struggles with living alone, and he has no interest in cooking.  This has been a difficult adjustment for dad and he’s another reason I visit more often.

A highlight of my visit was reconnecting with my dear friend Judy.  A beloved, life long friend with x-ray vision as her super power.

Mom Update: July 2012

Joanne ~ Mom ~ Marilyn

Visiting with my mom is always an adventure.  I never know what she’s going to say or do and it’s fascinating to watch and participate in her crazy shenanigans.  My goal was to keep her laughing.  As long as she was doing that, then I figured we were okay.  Or maybe that just made it easier for me.

My sister and I needed mom to try on a “picture outfit” for family photos we had done.  When we removed her clothing we noticed she had a wash cloth stuck down her bra and in her pocket.  We said “someone’s been folding towels today” and then proceeded to laugh hysterically.  Mom will stuff any and everything in her pockets to the point of them looking like chipmunk cheeks.  But a wash cloth in the bra was a first.

Okay, I’ll just say it.  Mom acts like a young adolescent and she’s in a, shall we say, sexual stage right now.  I don’t know how many times she lifted her shirt to show us her bra.  She was either pulling on her shirt pretending she had large pointy breasts or she was lifting her shirt and flashing us.  This activity was always followed with laughter that reminded me of a young girl at a slumber party.  Once, when we were in the car, she found a compact umbrella and well, with the size and shape of it, and with her young mind in the gutter . . .  one thing led to another and let’s just say I never imagined my mom ever doing that with an umbrella!   And she laughed and laughed like a school girl with a mischievous look in her eyes.  Okay, it was a little funny — but mostly we were just shocked.  This was so out of character for mom.

Marilyn and Mom on the back deck of Mom's new home.

I can’t count how many times we hugged.  I’m talking about the best hugs.  Mom could charge money for those hugs.  Warm, embracing, long, loving, everything is going to be okay hugs.  (sigh)

She called me by name a couple of times, but there were a few times that I was standing right next to her and she said to me, “I think that’s Joanne over there!”  I’d say, yes that kind of looks like Joanne, but I don’t think it’s her.  It felt wrong to say “I’m right here” — I didn’t want her to feel bad.   Every single day, Mom asked when I was going to cut my hair.  And every day my answer was the same — tomorrow.

We bought her new bedding, hung some more pictures and made sure her name was in all her clothing.  We danced, laughed and sang songs.  We took a hundred new photos and looked at old black and whites together.

Mom and I being silly.

Mom mentioned a couple of times that she’s ready to go home.  One time she asked where her mom was.  I wondered when that was coming, but it still surprised me.  I told her, “she’ll be here soon.”  I’m pretty sure the home she’s talking about isn’t the one she’s lived in for the last 45 years, but rather her childhood home in Wadena, MN.

Little 14 year old Ruthie Hall wants to go home.  Oh how I’d like to make her wish come true.

Mom ~ loving, funny, happy and in her 7th year with Alzheimer's.

 

Back to Minneapolis: July 2012

We moved my mom into an Assisted Living Home on May 18th, 2012 without planning for it and with only two days notice.  We barely had time to move her in and make her room feel like home before I flew out the next day.  It sort of felt like I dropped my mom off at a daycare and then never picked her up.  Even though I knew it was the right thing to do, it just felt wrong.  One of the biggest events in my mom’s life was rushed, because I was rushed.

It’s been two months since mom’s been in her new home and I hear she’s doing great.   But, I’m thrilled to be going back this week so I can see for myself.  I also feel like this is a chance to take things slow and do some of the things I wanted to do in May.

Public Service Announcement: Mom is a champion back scratcher and this is her signal indicating she is open for business. I'm not kidding.

Some things I’m looking forward to are:

  • Going for walks in the new neighborhood mom lives in.
  • Dining with mom and her new friends.
  • Washing dishes with mom.
  • Decorating her bedroom with old family photos and girlie stuff.
  • Maybe getting new bedding for her twin bed.
  • Taking mom to the beauty salon for a haircut.
  • Just being with my mom, and being fully present, with nothing but time on my hands.

My sister from Texas will also be there, and so with the Nelson family of five all together, we have a photo session scheduled at Lake Nokomis.  We haven’t had a professional family photo taken in about 35 years, so this will be it — most likely the last shot of all of us together.  You know the family pictures people take when someone has terminal cancer?  That’s what this feels like.  Except mom won’t look sick, she just won’t know what’s going on as she smiles innocently at the camera.  I’ve given the photographer a heads up telling him, “my mom will think you’re an old friend, and she’ll be so happy to see you that she’ll probably hug you.”  The photographer said that’s okay, his grandfather had Alzheimer’s and he’s very familiar with “going with the flow.”  This disease touches us all.

This will be my first visit to see my parents in years when I haven’t had a major to-do list.  I am so looking forward to just chilling and spending quality time with my family.  Plus I have a date with Lake Harriet I need to attend to, (see Bucket List).  There’s nothing like Minneapolis in July!

 

10 Reasons I’m Grateful for Alzheimer’s Disease

All that we behold is full of blessings.    ~  William Wordsworth

Yesterdays post about Alzheimer’s disease killing my mom was honest.  It wasn’t meant to be anything other than that.   I have experienced many emotions throughout the course of my mom’s disease.  I’ve been sad, frustrated, joyful, embarrassed, protective, impatient, scared and yes angry.  But I’ve also been grateful.  And of all the emotional ups and downs this disease brings — gratefulness is my gift and comfort to myself.

My mother is still on this earth, she is in good hands, and I get to tell her everything in my heart over and over again.

Yes, I am grateful for Alzheimer’s disease.

Because of Alzheimer’s . . . .

  1. My mom is free from the worries of the world and is generally happy.
  2. I am closer with my parents because I am more involved in their lives.
  3. I am also closer with my brother and sister who are my partners on this journey.
  4. I have a pretty good idea of how and when my mother will die — it’s a gift in disguise.
  5. I appreciate and treasure every moment I have with my mom, and those I love.
  6. I know how and why to strive for fitness and health — including brain health.
  7. I’m healthier than I’ve ever been.
  8. I see the fragility of life, and I try not to take things for granted.
  9. I’m trying to live with intention and mindfulness.
  10. I have a good reason to run!

We can only be said to be alive in those moments when our hearts are
conscious of our treasures.
      ~  Thornton Wilder

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.  : )

 

 

Finding Joy in Little White Lies

There’s a book I want to tell you about.

It’s called “Creating Moments of Joy” by Jolene Brackey and it has completely changed the way I communicate with my mom.

I love this book so much, I think it should be required reading for anyone who interacts with an Alzheimer’s sufferer.

It’s a book about meeting the person with Alzheimer’s WHERE THEY ARE AT in order to avoid emotional pain and confusion.

It’s also an instruction book on how to tell little white lies.

For example, when my mom asks “When is Gary coming to get me?”  A not so good answer might be, “He isn’t coming to get you because you live here now.”  This answer is frightening and confusing.  The better answer might be, “Won’t you stay for dinner and Gary can get you later? I just love spending time with you!”

This works better because THERE IS NO SHORT TERM MEMORY!  Zero!  Zip!   So the only goal of the caregiver is to help the person with Alzheimer’s feel comfortable and safe — IN THAT MOMENT.

It’s okay to lie when it’s the kindest thing to do.

My mom will eventually think she is three years old and will start asking for her mom — which breaks my heart : (   But can you imagine my mom’s reaction if a caregiver replies, “Ruth, your mom died a long time ago.”  What if my mom asks this question every day?  Or ten times a day?!  A better answer might be, “Your mom is at the grocery store and she’ll be back soon.”  Comforting relief in that moment!

While this may seem almost cruel.  IT’S NOT.  We are joining them in their reality and coming up with feasible explanations in order to avoid emotional stress.  It’s a moment in time that will be gone in 20 seconds, and all that will be left is the feelings that were created.  Do we want good feelings or bad?  Comfort or fear?

The author covers many other topics to help create moments of joy for the Alzheimer’s sufferer, including giving compliments.    Saying you’re so smart, creative, or strong for example, are wonderful boosts.  My mom beamed when I told her how beautiful she was.

And she loved hearing me say, “So many people love you!”  Now, that was the truth.

Look at her! So sweet and innocent waiting for her piece of cake. I hope nobody ever makes her feel sad or scared. Just comfort and love please. Along with a fib or two.

Go to Creating Moments of Joy to order this book and learn more about communicating with your loved one and how to “discover their greatness.”

 

 

She Came Out of Her Room With Spirit

Visiting with mom after her first night at her new home. I just needed to see her one more time before I left.

When I decided to write a blog, my intention was to write about what I’m doing to get healthy and hopefully prevent Alzheimer’s disease in myself.  I didn’t want to write too much about my mom who has Alzheimer’s for a couple of reasons —  first, there are already “caregiver” and “long goodbye” blogs out there, and writing about my mom was just too close and personal for me.

But, as you know, close and personal is where I’ve been lately.

Moving my mom into a residential home and then leaving the next day was one of the most difficult things I’ve done.  I’ve wanted to run back every day since then to hug her one more time and tell her everything will be okay.   It feels like I dropped my child off at a babysitters never to pick her up again. Like she is watching out the window, waiting to go home and wondering why no one is coming.

Friday night was mom’s first night sleeping in her new home and I went over Saturday morning before my flight to check on her.  I was told that she came out of her room “with spirit” and fully dressed to include her favorite pink baseball cap that says Winchester, VA.  My mom then hugged the woman in charge and promptly sat down with a bowl of oatmeal and raisins.

Mom looked rested and she seemed to be alright as I visited with her.  She didn’t ask me anything about going home or when we were leaving and she seemed content and at ease like she had always been there at that table with the newspaper in front of her.  Although, I’ve heard she’s been asking lately when she’s going home.

As I was getting ready to leave I asked, “Do you like it here?”

Mom said, “Oh my yes!”  “It’s like . . .  it’s like . . . . it’s just like THIS” as she wrapped her arms around to give herself a big hug.

While my mom’s new home feels like a big hug, I’m sure there is a sense that it is not her home.  I hope it starts feeling like home real soon — for mom’s comfort and our peace of mind.  I hope.